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Key Terms in Palliative Care and Pain Treatment
Every year, there are thousands of children and adults in Senegal who face a similar fate as Bineta’s. Non-communicable diseases, such as cancer, diabetes and heart disease, are responsible for 30 percent of all deaths in Senegal, and cancer alone kills more Senegalese than malaria, tuberculosis, and HIV/AIDS combined. Moreover, the prevalence of non-communicable illnesses in Senegal, as in Africa as a whole, is projected to increase significantly in the coming decades, due to life-style changes and population aging.
Yet, Senegal’s health system has traditionally focused primarily on acute health problems, with limited funds dedicated to chronic and non-communicable illness. Diagnosis is often made late, treatment options are limited, and medical care is costly. A large percentage of patients with chronic, life-threatening illnesses develop pain and other debilitating symptoms. Research shows that as many as 80 percent of patients with advanced cancer, and about 50 percent of those with AIDS, develop moderate to severe pain. The difficulties in providing curative care make palliative care and pain relief especially critical.
Palliative care, a health service that focuses on alleviating suffering, can be offered at relatively low cost and at all levels of the healthcare system, including in rural communities; Uganda and Rwanda for example, have implemented palliative home care services with morphine syrup and rotating nurses in rural areas. Patients like Bineta could have their symptoms treated effectively with inexpensive medications and basic training. The World Health Organization (WHO) defines morphine as an “essential” medicine for treating pain. It is cheap, highly effective, and generally not complicated to administer. In addition to pain treatment, palliative care also addresses other symptoms, both physical, like vomiting and nausea, or psychosocial, like anxiety and depression.
WHO has emphasized that palliative care is an integral and essential part of comprehensive care for cancer, HIV, and other conditions. Palliative care, which should be administered from the time of diagnosis, is an important support for curative care, and the only medical relief available to the terminally ill. With respect to cancer, for example, WHO has noted that:
The majority of cancer patients will need palliative care sooner or later. In developing countries, the proportion requiring palliative care is at least 80 percent. Worldwide, most cancers are diagnosed when already advanced and incurable… [For these patients] the only realistic treatment option is pain relief and palliative care.
Similarly, at the African Union (AU) Heads of State Summit in May 2013, the AU recognized the rapid rise of non-communicable disease in the region and adopted the African Common Position on Controlled Substances and Access to Pain Management Drugs (decision number EX.CL/Dec743(XXII)). This document urges member states to take the necessary steps to ensure the availability of pain treatment. During that same month, health ministers from around world, including Senegal, unanimously approved the WHO Global Action Plan for the Prevention and Control of Non-Communicable Diseases for 2013–2020, which calls upon states to “develop and implement a palliative care policy using cost-effective treatment modalities, including opioids analgesics for pain relief and training health workers.”
Despite these global developments, availability of palliative care in Senegal is almost non-existent; the World Palliative Care Association classified Senegal, and more than half of the countries in Francophone Africa, as having “no known palliative care activity.” Based on the WHO system of estimation, approximately 70,000 people with life-limiting illnesses require palliative care each year in Senegal. Research by Human Rights Watch in Senegal, conducted in 2012 and 2013, suggests that only a tiny fraction of patients actually have access to it. The most recent records indicate that Senegal uses an annual amount of morphine that is only sufficient to treat only about 194 patients suffering from pain due to advanced cancer. At time of writing, Senegal does not have any designated palliative care services, and outside Dakar, palliative care is altogether unavailable. On visits to Dantec Hospital’s Joliot Curie Institute in Dakar, the only cancer ward in the country, we saw numerous patients with advanced diseases writhing, trembling, and moaning from pain while in their hospital beds.
The vast majority of the Senegalese patients who require palliative care spend their last weeks or months in their homes, where they return when all treatment options have been exhausted or when money to pay for treatment runs out. While many of these patients can count on strong family support as their illness progresses, they often face symptoms that can only be adequately addressed with help from healthcare workers and medication, which is largely unavailable. As a result, these patients and their families end up abandoned by the healthcare system at arguably the most vulnerable time of their lives, and face tremendous suffering that could be prevented with basic palliative care.
Policy, Education and Drug Availability
The World Health Organization has urged countries to take action in policy making, education, and drug availability. While there is some overlap between these three areas, WHO has identified each of them as fundamental to the development of palliative care services. Measures to address these areas cost little, but can have a significantly positive impact on improving access to care.
Policy: The WHO has recommended that countries establish a national palliative care policy or program, and that palliative care services are made available at the community level and in specialized hospitals for low- and middle-income countries. Such programs should include provisions for improving adult and pediatric care. In Senegal however, palliative care is highly centralized, with limited services available only in Dakar; there is virtually no support for home care or community level hospices. As of 2011, WHO reports that Senegal has no national strategy for cardiovascular disease, respiratory disease, diabetes, or cancer. There is no cancer registry or information gathering on non-communicable disease. Senegal has an HIV plan for 2007-2011, but it does not include palliative care. Not only is there a problem of inaction, there are also several regulatory and legal barriers that actively inhibit palliative care development. Such barriers limit access to medications (see “drug availability” below). The government has not adopted a palliative care policy, or otherwise articulated a vision for how services can be made available to patients and existing barriers remedied.
Education: WHO also recommends that countries ensure adequate instruction of healthcare workers on palliative care and pain management. Yet, in Senegal, official medical and nursing school curricula have not kept pace with the epidemiological developments that have led to rapidly increasing need for palliative care services. Medical schools do not have courses on palliative care, and while pain management is taught as a component of physiology and anesthesiology, there are no stand-alone classes on the subject. There is no specialization on palliative care, and very few, if any, post professional training sessions on managing chronic pain. Most nursing schools also do not have courses on palliative care, rather students receive two to four hours of palliative care training as part of their general “nursing care” class. As a result, many medical doctors and nurses in Senegal are unfamiliar with basic tenets of palliative care and may retain antiquated or erroneous perceptions of opiate analgesics, such as the belief that opiates are drugs of last resort and only appropriate for the imminently dying.
Drug Availability: WHO recommends that countries establish a rational drug policy that ensures accessibility of essential medicines, including opioids like morphine. In the context of the international war on drugs, many countries have focused primarily on the potential risks of opiates, while neglecting the obligation to ensure they are available for medical purposes. The International Narcotics Control Board, a United Nations body, found in 2010 that Senegal’s consumption of opioid analgesics was at such a low level that palliative care was almost impossible, an assessment that Human Rights Watch’s research confirms.
Procurement, Distribution, and Prescription
Procurement: Healthcare facilities commonly endure morphine shortages caused by difficulties in the procurement process. Senegal’s National Pharmacy (Pharmacie National d’Approvissionement, PNA) is a centralized government agency that procures and distributes all items on Senegal’s “list of essential medicines.” Injectable morphine was on the 2008 list, but oral morphine, the formulation recommended by WHO for chronic pain, was not. At time of writing, the government made an important improvement by adding oral morphine tablets and tramadol, a weak opioid medication for moderate pain, to the 2012 list, which would take effect in 2013.
However, it did not add morphine syrup, a liquid formulation which is necessary for pediatric palliative care and patients with throat tumors or those who cannot swallow solid medications. To obtain drugs that are not on the list, public institutions, like hospitals must undertake a convoluted bidding process. If no seller responds to the call for bids, the hospital has no supplier, and patients will not have the medication. Three hospitals in Dakar have launched bidding calls for oral morphine tablets with no success, not only because the profit margin on the medication is slim, but also because bidding is limited to domestic companies. Creating flexibility to allow hospitals to make direct purchases of medication from national and international sources will help them stock their pharmacies adequately and consistently.
Distribution: Incurably ill patients have to travel, often long distances, for medications that should be available at all levels of the healthcare system. The 2012 list explicitly limits morphine to regional and national hospitals, which means they will only be available in the main cities. Many Senegalese live several hours away from the nearest hospital and rely exclusively on health centers or health posts, neither of which are currently authorized to stock opiates. Additionally, even though regional hospitals are allowed to stock opiates, none of the Regional Pharmacies (Pharmacie Regional d’Approvissionement, PRA), the regional branches of the PNA, stocked it. Human Rights Watch visited several regional hospitals, and in all of them, various healthcare providers said they wanted to use morphine, but the hospital pharmacist or their PRA told them it was unavailable. Meanwhile, officials at the PNA told Human Rights Watch that they consult with regional healthcare facilities on their need for opiates, and none of them order morphine. Regional doctors do not use morphine because it is unavailable, and the PRAs do not stock it because no one uses it. The government must organize a dialogue to end this cycle, and ensure that not only is morphine available in all regions, but that regional healthcare workers are aware of its availability.
Prescription: Only doctors can prescribe morphine, and only with a specialized prescription pad, which severely limits access to opiate medication outside Dakar, where there is doctor to patient ratio is extremely low, one doctor for every 11,000 individuals. Nurses in Senegal are authorized to prescribe almost all medications, but not morphine and strong opioids. Other countries with similar dynamics have altered regulations to allow nurses, or even community healthcare workers, to prescribe oral opiates. Even for doctors, Senegal’s drug law imposes a one-week limit for prescriptions of opioid analgesics. As a result, patients or their relatives must visit the pharmacy every week for a new prescription. Given the limited facilities that stock morphine, most people, especially the terminally ill and those who live outside of Dakar, cannot travel so often. While the law allows the Ministry of Health to significantly extend the one-week period by ministerial decree, the Ministry has not done so. With this one-week limit, Senegal is becoming an outlier as many countries have increased prescription limits, generally to a month or more.
Senegal has a human rights obligation to promote access to healthcare, and Senegal’s commitment to the right to health is explicitly guaranteed in the Senegalese Constitution, and affirmed by Senegal’s membership in numerous human rights conventions, including the International Covenant on Economic, Social and Cultural Rights (ICESCR), African Charter on Human and Peoples' Rights (ACHPR), and the Convention on the Rights of the Child (CRC). Under the ICESCR, Senegal is obligated to take steps “to the maximum of its available resources” to progressively achieve the rights in the Covenant, including access to health and palliative care. Article 16 of the African Charter on Human and Peoples' Rights states that, “every individual shall have the right to enjoy the best attainable state of physical and mental health…State Parties to the present Charter shall take the necessary measures to protect the health of their people and to ensure that they receive medical attention when they are sick.” The CRC’s article 24 states, “States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health…States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services.”
Additionally, the international prohibition of torture and ill-treatment dictates that governments have a positive obligation to protect people from unnecessary suffering and extreme pain. The UN special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment has noted that, “failure of governments to take reasonable measures to ensure accessibility of pain treatment…raises questions whether they have adequately discharged this obligation.” The Senegalese government must refrain from directly violating human rights, but fulfilling its obligations also entails taking active measures to make the right to health a reality.
Senegal has several obstacles to overcome, but it has healthcare workers and experts who are dedicated to making positive changes, and an existing infrastructure that can facilitate decentralization. A palliative care strategy for Senegal should focus on providing access to services in or near patients’ communities, which can be done by organizing health care training in basic symptom management and by ensuring wide access to medications. Utilizing rotating nurses equipped with a vehicle and oral morphine, similar to Senegal’s current system for malaria treatment and vaccination in rural areas, can greatly expand access in a cost effective manner. A palliative care strategy should also address the special needs of children with life-limiting illness, by providing a plan to implement palliative care in pediatrics, train pediatricians and pediatric nursing staff to assess and treat symptoms in children, and ensure the availability of child-friendly formulations of key medications, such as morphine syrup.
To make progress in this area, the government can draw on its own experiences with the decentralization of and financial support for services for HIV/AIDS, malaria and tuberculosis, as well as on experiences from other African countries that have decentralized palliative care, like Rwanda and Uganda. Several other African countries have organized meetings with all relevant parties—health authorities, drug regulators, pharmaceutical suppliers, palliative care experts, and others—to develop and implement a comprehensive palliative care strategy. The Senegalese government should collaborate with the Association Sénégalaise de Soins Palliatifs (ASSOPA), a coalition of healthcare workers dedicated to promoting palliative care in Senegal, to organize such a meeting.
Specifically, the government needs to arrive at a more accurate estimate of its annual quota for morphine by referring to the INCB guidelines. Since currently no morphine is used in most regions, an estimation of need cannot be based on current use—rather, it must take into account the actual number of people living with pain, from NCDs, chronic illness, or other diseases. To prevent shortages and increase affordability, the government must ensure that the National Pharmacy takes charge of importing all essential palliative care medications, including oral morphine in liquid and pill form. Importation must be consistent and based on accurate evaluation of the needs of the population. The National Pharmacy must distribute these medications to the Regional Pharmacies, and regional health facilities, including those at the district and community level, should be authorized to stock them. Expanding authority to prescribe opiates to nurses is critical for rural areas.
Combating non-communicable diseases will necessitate improvements in prevention, curative treatment, and palliative care. Palliative care is easy and cheap to implement; it can be done quickly, and has an enormous impact on the well being of patients, families, and healthcare workers. It supports those who can be cured by addressing agonizing symptoms, and is the only comfort for those who are terminal. Though palliative care would not have saved Bineta’s life, it would have relieved her suffering considerably. When the majority of Senegalese with non-communicable diseases reach advanced stages of illness where pain is severe and a cure is elusive, ignoring palliative care is illogical. While the government continues to expand access to prevention and curative treatment, the development of palliative care services is necessary to minimize anguish and pain. The right to health is a progressive process, and it begins with concrete steps. No patient should be allowed to suffer when modern medicine can easily prevent it.
The Senegalese government should, in consultation with health care providers, international donors, WHO, non-governmental organizations, and other stakeholders, urgently develop action plans to ensure access to palliative care and pain management nationwide. In particular, they should:
Field research for this report was carried out in November and December 2012 and July 2013 in Senegal. Interviews were conducted at 10 different health facilities in Dakar, Podor and Ndioum (St. Louis Region), Ziguinchor (Ziguinchor Region) and Thiès (Thiès Region). We chose to visit Podor and Ziguinchor because we took the decision to investigate the availability of palliative care in rural areas. For various reasons, including the limited number of Human Rights Watch researchers working on the project, we could not visit all 14 regions in Senegal. As such, we chose one Northern district (Podor) and one Southern district (Ziguinchor). We visited Thiès because it is the closest major city to the capital. Over the course of five weeks in Senegal, Human Rights Watch researchers conducted 160 interviews with a wide variety of stakeholders, including 41 adult patients, 41 relatives of pediatric patients, and 61 healthcare workers, including oncologists, pharmacists, and nurses, and 8 health officials. We also interviewed government officials, representatives of pharmaceutical companies and nongovernmental and international organizations.
We conducted most interviews with patients and their families at healthcare institutions such as hospitals and health clinics. Healthcare workers at these facilities helped us identify patients with incurable illnesses for in-depth interviews. Though palliative care is necessary in a variety of health fields, this report focused on cancer patients because cancer is an increasing problem in Senegal, and since cancer care is not decentralized, Dakar hospitals have large numbers of cancer patients from various parts of the country. Where possible, interviews were conducted in private. Due to their illness, some patients were immobile and shared a room. In such cases, we made sure the patient was comfortable conducting the interview under those circumstances. If not, no interview was done. Interviews were semi-structured and covered a range of topics related to curative and palliative treatment.
Before each interview, Human Rights Watch informed interviewees of its purpose, the kinds of issues that would be covered, and asked if they wanted to participate. We informed them that they could discontinue the interview at any time or decline to answer any specific question, without consequence—we took particular care to emphasize this point to patients who appeared to be in serious condition. No incentives were offered or provided to persons interviewed. We told patients that we could not provide medication, but in situations where people were in acute need of pain relief or other medical care, we brought their condition to the attention of a nurse or doctor. We have disguised the identities of all patients we interviewed in this report to protect their privacy. The identities of some other interviewees, including government officials, have also been withheld at their request.
We conducted approximately half the interviews with patients and their relatives in the pediatric oncology ward at Dantec Hospital in Dakar. In total, we interviewed the parents or guardians of 41 children there. We interviewed two teenage children directly, in the presence of a parent. Most of the children concerned had confirmed diagnoses of cancer. In many cases however, family members were not able to precisely identify what the child’s illness was, either because no diagnosis had been made, the diagnosis had not been communicated to the family, or the family had not understood the diagnosis.
Human Rights Watch conducted 41 interviews with adult patients, many who had family members present. Four of those interviews were conducted solely with family members because the patients were unable to speak. All patient interviews were done in Dakar, with the exception of one such interview in Thiès. We avoided patient interviews outside of Dakar for ethical reasons—no palliative care or pain management is available outside the capital and we did not want to ask patients to articulate the impact of pain or other symptoms on their lives when there was no possibility of referring them to appropriate care. The patient interviewed in Thiès was not suffering from severe pain or other symptoms.
We interviewed 61 health professionals in five cities, including 32 doctors, 16 nurses, 9 pharmacists, 2 health volunteers, and 2 midwives. These interviews concerned barriers to pain treatment and palliative care generally, but we also asked them to discuss cases of patients who suffered because palliative care was not available. We also sought their opinion on measures that could be taken to improve access to palliative care in Senegal.
We also interviewed representatives of the Ministry of Health, Ministry of Pharmacies and Medicines (Direction des Pharmacies et des Medicaments), National Pharmacy (Pharmacie National D’Approvisionment), and the Regulatory Authority on Public Markets (Autorité de Régulation des Marchés Publics).
Interviews with health care workers and officials were conducted in French. Interviews with patients and their families were carried out in French, Wolof and Pular. An experienced interpreter, multi-lingual healthcare workers, or multi-lingual family members provided translation when necessary. The interpreter was briefed extensively on the topic of the interviews and on the sensitive nature of working with people with life-limiting conditions. The interpreter was also briefed on Human Rights Watch’s confidentiality policies.
The Global Burden of Non-Communicable and Chronic Illnesses
Non-communicable diseases (NCDs), such as cancer, heart disease, diabetes, and respiratory illnesses, are by far the leading cause of mortality in the world, causing 63.5 percent of all deaths. Chronic illness, including HIV/AIDS and many NCDs, typically leave patients in need of continued medical support. More than 80 percent of adults over 60 years of age have at least one chronic disease. With life expectancy increasing worldwide, the number of people aged 60 and over is expected to more than triple by the end of this century, meaning that the prevalence of these diseases will rise dramatically.
Current projections indicate that by 2020, the largest increases in deaths from non-communicable diseases will occur in Africa. According to the United Nations, 3.7 million NCD deaths were recorded in sub-Saharan Africa in 2008, but that number will balloon to 14 million by 2050. In 2007, there were over 700,000 new cancer cases and nearly 600,000 cancer-related deaths in Africa, and cancer rates in the region are estimated to grow by 400 percent in the next five decades. Cardiovascular disease is on the rise, and it is already the leading cause of death of Africans over 45-years-old. Africa already has the world’s highest age standardized mortality rate for diabetes, and the prevalence of diabetes is predicted to increase by 80 percent in the next 20 years. By 2030, non-communicable illnesses are likely to surpass maternal, child and infectious diseases as the biggest killer in the region.
One of the challenges sub-Saharan African countries face in combating chronic diseases is the fact that their healthcare systems are often designed to respond to acute health problems, such as infectious disease and injuries. HIV/AIDS remains an enormous problem in Africa, with an estimated 23.5 million Africans living with HIV/AIDS, and 1.8 million new infections in 2011, but it is necessary to acknowledge the rapid rise, and growing death toll of NCDs. Foreign aid, which accounts for significant proportions of health budgets in many sub-Saharan countries, predominantly goes to infectious diseases and maternal and child health. Less than 3 percent of this aid goes to NCDs.
As a result, non-communicable diseases kill far more people, and far earlier, in poor countries than in rich ones. Ninety percent of premature deaths (those before 60 years of age) from NCDs occurred in low- and middle-income countries, and Africa has the highest age standardized mortality for NCDs in the world. The impact is especially significant in children; the Union for International Cancer Control estimates that as few as 5 percent of childhood cancer cases in Africa are cured, compared with nearly 80 percent in the developed world.
Global Palliative Care Needs and Regional Availability
Non-communicable and other chronic diseases are often accompanied by pain and other distressing symptoms. Approximately 80 percent of patients with advanced cancer, 50 percent of individuals with advanced HIV, and 60 to 70 percent of people with diabetes suffer from moderate to severe pain during the course of their illness. While pain management is also necessary for a wide variety of medical fields, including acute trauma and post-operatory care, the rapid growth of NCDs and chronic illness creates an increased need for long term pain and symptom management strategies. Though NCDs and chronic illnesses may ultimately cause death, many patients will live with these diseases for several years. The Global Burden of Disease study of 2010 accounts for the impact of ill health on quality of life by using the term “disability-adjusted life years,” which measures years of life lost due to ill-health, disability, and early death.
Pain has a profound impact on quality of life for both adult and pediatric patients. Debilitating symptoms can lead to reduced mobility and consequent loss of strength, compromise the immune system, and interfere with a person’s ability to eat, concentrate, sleep, or interact with others. More generally, people with chronic illness are also more likely to suffer from depression or anxiety, and many individuals lose the will to live and may even become suicidal. The physical effect of chronic pain and the psychological strain it causes can influence the course of a disease, and severe pain can actually lead to death. For families and caregivers, watching a person suffer from symptoms and medical procedures and facing the prospect of potential death can cause great distress.
Palliative care is designed to address these concerns and to improve patients’ quality of life through pain and symptom relief, and psychosocial support for patients and their families. Despite a common misconception, palliative care is not limited to end-of-life care and does not mean “giving up” on the patient. Indeed, it corresponds to perhaps the most fundamental duty of healthcare providers: to alleviate suffering. Though pain is a central issue, palliative care also addresses various other symptoms, such as vomiting, nausea, fever, urinary problems and bowel complications.
According to WHO, “Most, if not all, pain due to cancer could be relieved if we implemented existing medical knowledge and treatments.” (emphasis added) The standard tool for treating cancer pain is WHO’s Pain Ladder, which is a three-step approach of administering the right drug in the right dose at the right time.[29] The ladder recommends the use of increasingly potent pain killers as pain becomes more severe, from basic pain medicines (such as acetaminophen, aspirin, or ibuprofen), to weak opioids like codeine, to strong opioids like morphine. For pediatrics, WHO recommends a two-step approach, skipping weak opioids and moving directly from low level analgesics to strong opioids.
The mainstay medication for the treatment of moderate to severe pain is morphine, an inexpensive opioid that is made of an extract of the poppy plant. Morphine can be injected and taken orally, in tablet or liquid form. Injectable morphine is usually used to treat acute pain, generally in hospital settings. Oral morphine is the drug of choice for chronic pain, and can be taken both in institutional settings and at home. Morphine is a controlled medication, meaning that its manufacture, distribution, and dispensation are strictly regulated both at the international and national levels.
Medical experts have recognized the importance of opioid pain relievers for decades. The 1961 Single Convention on Narcotic Drugs, the international treaty that governs the use of narcotic drugs, explicitly states that “the medical use of narcotic drugs continues to be indispensable for the relief of pain and suffering” and that “adequate provision must be made to ensure the availability of narcotic drugs for such purposes.” The World Health Organization has included both morphine and codeine in its Model List of Essential Medicines and its Model List of Essential Medicines for children, which should be available to all persons who need them.
Yet, approximately 80 percent of the world population has either no or insufficient access to treatment for moderate to severe pain, and tens of millions of people around the world, including around 5.5 million cancer patients and one million end-stage HIV/AIDS patients, suffer from moderate to severe pain each year without treatment.
In many African countries, palliative care is neglected by policy makers and health providers. According to the Worldwide Palliative Care Alliance (WPCA), half of sub-Saharan Africa’s countries have no known palliative care services. Only six sub-Saharan African countries—Kenya, Rwanda, South Africa, Swaziland, Tanzania, and Uganda—have integrated palliative care into their national health plans. Only four countries—Kenya, Malawi, South Africa, and Uganda—recognize palliative care as an examinable subject in medical schools and have it integrated in the curriculum of health professionals. Palliative care seems to be particularly poor in Francophone Africa, with 11 of 18 Francophone African countries having no known palliative care services. Most palliative care on the continent is provided by non-governmental, faith, or community-based organizations with no guaranteed sustainability. In 2008, morphine consumption in Africa was almost 20 times lower than the global mean.
Background on Senegal Non-Communicable and Chronic Illnesses and Palliative Care
Like other low- and middle-income countries, Senegal faces both an increasing burden of chronic illness and major challenges in responding to them. As of 2013, Senegal’s population is 14.1 million, and approximately 70,000 Senegalese need palliative care. Yet, the most recent records indicate that Senegal uses an annual amount of morphine that is only sufficient to treat only about 194 patients suffering from pain due to advanced cancer. For 2013, Senegal estimated it would need 1,180 grams of morphine, which would be 0.084 mg per capita—71 times less than the global average of 5.96 mg per capita.
Relatively little reliable data is available on non-communicable diseases and chronic illness. The HIV/AIDS rate in Senegal is 0.7 percent, and there are 53,000 Senegalese living with the disease; each year, 1,600 Senegalese die from AIDS. WHO estimates that NCDs account for 30 percent of all deaths in the country. Of the NCD deaths in 2008, 45.1 percent, nearly half, were people under age 60. According to WHO’s International Agency for Research on Cancer, there are 6,600 new cases of cancer each year in Senegal, and 5,100 cancer deaths, with cervical cancer and liver cancer being the most prevalent forms. Based on records and estimates from UNAIDS and WHO, cancer kills more than three times the number of Senegalese as HIV/AIDS does, and also kills more Senegalese than HIV/AIDS, malaria, and tuberculosis combined.
In Senegal, knowledge about non-communicable diseases and cancer is limited, leading to frequent misdiagnosis and late referral of patients; as a result, a very high percentage of illnesses are diagnosed only in advanced stages. A 2004 study by Dr. Ndiasse Ndiaye, an ear, nose and throat specialist at Thiès Regional Hospital, found that among 77 patients diagnosed with hypopharynx cancer, a throat cancer, 79 percent were in stage four, and 21 percent were in stage three at the time of diagnoses. Medical doctors interviewed for this report estimated that about 70 to 80 percent of their cancer patients arrive at their offices in late stages of illness.
Senegal’s Health Care System
Senegal has a mostly public healthcare system, although some private clinics exist in Dakar. As of 2012, there are 25 hospitals, 89 health centers, 1240 health posts, and 2098 health huts in the country. There are 37 private clinics and 77 private health posts. Of these 23 functioning hospitals, eight are in Dakar, meaning about one third of the hospitals in the entire country are in Dakar. In the public system, there is approximately one doctor for every 11,000 people, and one nurse for every 4,200 people.
The Senegalese government spends about 12 percent of its budget on health, with an average of US$111 per capita, which is more than most of its West African neighbors and other Francophone African states. The public system consists of several different levels, with basic community-trained volunteers available at the lowest, and specialized medical care at the highest level. Depending on the nature of their health problem, patients are attended to at the lower levels of care or referred to health centers or hospitals (see Table 1).
Table 1: Organization of Senegal’s Public Healthcare System
Facility
Description
Location
National Hospital
The highest level of care available in the country.
Only in Dakar
Regional Hospital
These hospitals have general practitioners as well as some specialists, such as surgeons and gynecologists, on staff. They perform basic surgeries.
One per region
Centre de Santé (Health Center)
This is the lowest level of care where doctors are available. Health centers have inpatient facilities. Basic laboratory work can be done here. Maternal care is provided.
One per district
Poste de Santé (Health Post)
These are staffed by a nurse, a midwife, or both. In areas where nurses are not available, community healthcare workers may staff these posts.
Several per district
Case de Santé (Health Hut)
Community level of care, staffed by a community volunteer with basic medical training.
Available in rural communities
Senegal does not have a functioning public health insurance system. Some professionals have private insurance through their jobs, but the majority of patients pay out-of-pocket for almost all medical consultations, procedures and medications. Consultation fees vary, but in general it costs about 3000 CFA (about $6) to see a doctor at a regional hospital, 1000 CFA (about $2) to see a doctor at a health center, and 500 CFA (about $1) to see a nurse at a health center. Several nurses told us that in general, only urgent, life-saving medications are kept on hand. All other items, including intravenous solutions, injections, and analgesics, need to be purchased at the pharmacy and brought back for the nurse or doctor to administer. Even patients who arrive in the emergency room in grave condition and those in post-operatory care must wait, sometimes in severe pain, until a relative can go to the pharmacy for medicine.
Outside of the public health system, traditional medicine plays a significant role, especially in rural areas. Traditional medicine encompasses everything from spiritual healing ceremonies and incantations to treatment with herbs and plant extracts. According to patients and healthcare workers, traditional medicine is significantly cheaper, with fees said to be around 200 CFA (less than 50 cents), and often more accessible. However, there is no licensing or regulatory system for traditional medicine, and patients risk paying for fake cures, or for harmful substances.
The lack of a universal health coverage system means that patients are not protected from the financial ruin that often comes with chronic illnesses. Indeed, almost every patient we interviewed for this report spoke of financial problems, often resulting in an inability to afford potentially life-saving medications.
The Decentralization of HIV Treatment
Many patients with HIV/AIDS need palliative care to address pain and other physical problems and mental stress. While treatment for cancer and other complex non-communicable diseases in Senegal is highly centralized, in response to HIV/AIDS, the government has followed WHO’s call to “decentralize treatment from the capital city to rural provinces.” Senegal’s low HIV prevalence rate is a success that has been attributed to the government’s timely and organized response to the epidemic.
Through the 2002-2006 National Strategic Plan (Plan Strategique de Lutte Contre le SIDA), the Senegalese government and a coalition of national and international partners brought HIV testing and treatment to communities throughout the country. With WHO’s technical guidance, Senegal trained health care providers at the district level and increased the number of voluntary counseling and testing sites. A system of surveillance and information gathering was set up to allow the government to monitor progress, and identify regions where the epidemic is more aggravated (for example, Ziguinchor has a prevalence of 3 percent, Dakar at 0.6 percent and Saint Louis at less than 0.1 percent).
As of 2011, 656 community health providers have been trained. There are also 1,023 Voluntary Counseling and Testing sites throughout the country, 109 of which also offer anti-retroviral treatment (ARV). ARV medications are on Senegal’s list of essential medicines and offered at the district level through health centers. Senegal was the first African country to establish a free ARV treatment program, with the government providing 40 percent of the funding and donors covering the rest. With decentralization and free anti-retroviral treatment, the percentage of AIDS patients who were able to access ARV treatment rose from 11 percent to 51 percent between 2004 and 2010.
Many HIV/AIDS patients are treated at Fann Hospital, a national hospital in Dakar, where palliative care services are available. At the regional and district level however, there is no organized structure for palliative care. In some rural areas, donations of HIV/AIDS care packages from NGOs and international health organizations may include palliative care medications, but the supplies are not consistent. The government, in coordination with doctors specializing in HIV/AIDS, is in the process of revising the national HIV/AIDS policy. Integrating palliative care in this policy and overall HIV/AIDS treatment would provide more comprehensive care for these patients.
I am in pain 24 hours a day. You cannot believe the pain I have all over my body. It is in my bones. I cannot have a real life without my medication.”
–Aliou Binta, a patient with terminal prostate cancer who uses oral morphine, November 2012.
During the course of Human Rights Watch’s research in Senegal, there was a shortage of morphine due to delays in importation—at that time only one hospital in the entire country imported morphine pills and there was only one local supplier of morphine syrup, so there were no alternatives to protect patients when those supply chains were interrupted. Patients interviewed who were from outside Dakar, or came from Dakar hospitals without oral morphine, were given low level analgesics that usually cannot alleviate moderate to severe pain. The physical, psychological and social consequences of moderate to severe pain on individuals have been documented extensively by medical practitioners around the world. In interviews with Human Rights Watch, patients in Senegal who had experienced or were experiencing pain described these consequences, but they also described something that is not easily captured in quantitative studies: the personal and family tragedies that each case represents and the overwhelming sense of despair that many experience when trapped by pain, fear, and anguish.
The Suffering Caused by Untreated Pain
When Human Rights Watch interviewed Arame Diouf, a woman believed to be in her 40s and suspected to have liver cancer, she sat on a mattress on the floor, in a rigid upright position with her back pressed against the wall because that was how she could feel the “least amount” of pain. Even so, she was shaking so badly from the pain from her sides and her chest that she could barely speak. Diouf was fortunate that her doctor at Grand Yoff Military Hospital was willing to visit her at home, since her pain left her bedridden. However, due to the morphine shortage, he could not properly alleviate her suffering.
Seynabou Binetou told Human Rights Watch that her 60-year-old father, Malick Binetou, was terminally ill with lung cancer. When he ran out of his medication during the oral morphine shortage, his daughter said he “spent the entire night crying.” Without oral morphine, he had to be hospitalized so that he could receive a morphine injection.
Sixty-five-year old Salimata Sylla, a diabetic for 15 years, had severe nerve pain in her foot, a common symptom of advanced diabetes. Her daughter, Coumba Ndiaye, was forced to watch her mother suffer for more than two months as medical doctors prescribed medications that were not sufficiently potent to control the pain. She said: “It was very hard for me to see her suffer. She could not sleep with the pain, and I did not sleep either.” Eventually, doctors relieved Sylla’s pain by amputating her foot.
Khadija Sarr, a 45-year-old woman from Touba who doctors believed to have cancer, told Human Rights Watch that she had severe stomach pain and various other debilitating symptoms. Describing her pain, she said, “I [clutch] onto anything that is close to me because of the pain.” She said she has continually told doctors about this pain, but the low level analgesics they have given her have her had no effect. Even after spending all her savings, she is still in agony: “I told my family not to bring me anymore because we have nothing left.”
Fatoumata Seck, a 33-year-old patient from Mali with advanced cervical cancer, told Human Rights Watch that the pain she was experiencing in her abdominal area was “infernal.” A mother who had given birth to six children, she said that it was “by far the worst pain” she had ever felt in her life. Fatoumata had come to Senegal hoping to be cured, but she arrived during a morphine shortage. Without medication, her pain was so intense that she decided to return to Mali, where she had access to morphine.
Human Rights Watch did not interview young children directly, but there were also pediatric patients who suffered from untreated pain. “An infant with a swollen stomach who cries all the time—[doctors] should have known something is wrong, but they did not,” said Khadidatou Doumbia, whose three-year-old niece, Joy Thierno, had suffered from persistent pain for two years, caused by a tumor on her kidney. At the pediatric cancer ward in Dakar, some children would moan or whimper, but others lay quietly with their eyes tightly shut. Children, especially young children, often lack the vocabulary to express the severity of their condition.
The Impact on Healthcare Workers
The majority of healthcare workers interviewed for this report said that it was emotionally traumatizing not to be able to provide proper care for patients with severe pain. As a doctor from Thiès regional hospital said, “it’s a heavy burden for a doctor who sees someone suffer and he cannot do anything.”
Several healthcare workers mentioned the lack of availability of basic medications to relieve pain as a significant problem. A former general doctor at Tambacounda Regional Hospital said, "We need medication to help [relieve symptoms]. The person suffers for nothing—there is something that could help them, but it is not available." A nurse at Grand Yoff hospital in Dakar echoed the sentiment, saying, "Sometimes you do not have medication in place, and patients must wait—in this time the patient suffers. It is very difficult to see a patient suffer."
Doctors who had received training in palliative care and pain management expressed particular frustration at being unable to utilize their knowledge. Guy Boukar Faye, a gynecologist in Ziguinchor, said, “I learned the treatment, but I cannot give it.” The director of the International Committee of the Red Cross in the same town said: "There is nothing to do for cancer patients here other than give them level 2 drugs [weak opioid pain killers] and send them home [to die].”
Cancer Barriers and the Heightened Need for Palliative Care
The poor availability of preventative and curative care for cancer, and for other chronic illnesses, creates a heightened need for palliative care in Senegal because the great majority of people are diagnosed in advanced or terminal phases of illness during which pain is severe. In the course of our research, patients, their families, and healthcare workers told us about economic hardships and weaknesses in the health care system that limit access to cancer treatment. These barriers cause great suffering, and a great percentage of Senegalese cancer patients die because they accessed treatment too late, or because they could not afford curative treatment.
Diagnosis
Many people don’t even think it’s possible for a child to have cancer.
–Sokhna Ndiaye, psychotherapist, Dantec Hospital Pediatric Oncology Ward, November 2012.
Senegal’s population largely lacks information about non-communicable diseases, early detection, and common symptoms, which frequently leads to delays in seeking medical care. Technology is still very limited. Equipment required for diagnosis is often sophisticated, expensive and usually available in big cities, or only in Dakar. Although Senegal is one of few countries in West Africa that has a radiation facility, it only has one radiation machine for the entire population of the country. Certain biopsies and other tests have to be sent to France, significantly increasing the cost and delaying the onset of treatment, often by a month or more. For example, Aida Niang’s daughter, eight-year-old Yacine Niang, had tests sent to France in May 2012, and received the results confirming that she had cancer in October 2012.
In additional to technological barriers, early symptoms of cancer are also frequently confused with other common pathologies, such as malnutrition, malaria or anemia. Three-year-old Rama Ndiour was treated for yellow fever for several months in Zigunchor before being referred to Dakar, where she was diagnosed with abdominal lymphoma. “Everybody kept saying it was malaria,” Issa Ngom said when he took his 11-year-old son, who actually had leukemia, to health posts. When Alissatou Diallo’s four-year-old son, Demba, developed severe pain and swelling in his legs, doctors thought he had anemia and prescribed dietary supplements and basic pain killers. Diallo said, “You tell them that the medication does not work and they say, ‘you don’t know my job’.” After six months of tests and severe, unrelieved pain, “[doctors] said what he has is bizarre. There is no solution.” A visiting professor finally referred him to Dantec Hospital, where oncologists diagnosed him with bone cancer. By the time he began treatment however, his cancer had become too advanced, and he passed away a few weeks later.
Economic Barriers
“To treat one patient, you need to use 15-20 [individual] salaries. For rural areas, you would need the yearly revenue of 10 families to treat one case.”
–Dr. Abdoul Kassé, oncologist, Dakar, November 2012.
With 46.7 percent of the population living at the poverty line, and 34 percent of living on less than $1.25 dollars per day, many people will not pay for a doctor until symptoms become severe; at that point cancer is often already advanced. Pape Moustafha, a 67-year-old farmer from Touba (about 200 km from Dakar), told Human Rights Watch he had a tumor weighing a full kilogram on his shoulder, but did not go to a doctor until a religious leader in his community raised money to send him to Dakar. Several patients interviewed had alarming symptoms, including large facial tumors, grossly swollen limbs, or abnormal bleeding, yet still delayed treatment for financial reasons.
After diagnosis, cancer treatment generally involves numerous medical procedures over the course of an extended period of time. As a result, cost rapidly escalates as patients have to pay for consultation fees, prescriptions, tests, hospital room fees, operations, blood transfusions, chemotherapy, radiotherapy, and more. One grandmother of a pediatric cancer patient said,
The child’s father sold a horse to support the treatment. After that, he sold a sheep. Then, I sold my bracelets and earrings. She needed surgery, but we still did not have enough money…
On top of medical fees, patients face mounting transportation costs. Cancer occurs in all 14 of Senegal’s regions, but treatment is only available in Dakar. Some patients stay with relatives, but many have to rent housing or make a long and costly journey on a weekly or monthly basis. Lack of finances causes patients to skip appointments, or abandon treatment altogether.An ENT in Thiès reported that of the 77 patients he diagnosed with cancer, only 34 returned for treatment, and only two could afford chemotherapy.
The Most Common Scenario: No Access to Palliative Care
When someone comes with an incurable disease, [healthcare workers] tell them to go back home. Doctors are not trained for this, especially in rural areas.
–Dr. Ahmadou Dem, an oncologist at Dantec Hospital, November 2012.
With old people, there is a culture of respect to let them rest at home, but there are not enough people for home care…then, the entire family is displaced by going to the hospital.
–Dr. Dia, a general practitioner at Ndioum Regional Hospital, November 2012.
With only a few hospitals in Dakar offering any form of palliative care services, most patients who develop severe pain suffer without relief. The situation is particularly dire for patients from rural areas, where 70 percent of Senegal’s population lives. In the course of conducting research for this report, Human Rights Watch visited three of Senegal’s 13 regions outside of Dakar. In each of these regions, we found that there were no palliative care services; some healthcare workers had no knowledge of what “palliative care” was, and there was no morphine, not even in hospitals. Sometimes, NGOs would donate limited packets of oral morphine, but it is not regularly stocked. The Senegalese military in Zigunchor, where there is a low level armed conflict, has morphine in their infirmary, but only for use on military personnel.
Nurses and midwives at community health posts (postes de santé) in all three regions said that for patients with pain, they could only prescribe anti-inflammatory pain medicines and weak opioid analgesics, or refer them to higher level facilities, like health centers or hospitals. Regional hospitals have fentanyl to use as anesthesia for operations, but for pain management, including post-operatory, advanced cancer, and trauma patients, they, like the health posts, only have anti-inflammatory and weak opioid medications. Patients with severe pain must suffer, or go to Dakar.
Traveling to Dakar is a major burden, not only because it is costly and arduous, but also because it is intimidating for rural patients. Many speak neither Wolof nor French, the two primary languages spoken in Dakar. As the head nurse at one regional hospital said, “They know nothing of big cities. They say they’d rather die than go to Dakar.” An expert on community development added: "The greater the distance from Dakar, the greater the expense and discomfort of travel, and the less likely patients will embark on the journey;” many end up dying in their homes, in pain, without any sort of care.
The Impact of Stock-Outs
Today it is calm because the children have morphine. When they do not, it is insufferable, not just for them but for us [doctors] as well.
–Dr. Claude Moreira, Head of Dantec Pediatric Oncology Ward, November 2012.
Even in Dakar, access to palliative care is difficult, not only because of limited supply, but also because of shortages. Injectable morphine is available at many national hospitals, but oral morphine can only be found at Dantec Hospital, Grand Yoff Hospital, Principal Hospital, and some private clinics. Dantec Hospital’s central pharmacy is the only place in Senegal that fills oral morphine prescriptions for the public; the other two hospital pharmacies only dispense to their own patients. Shortages of morphine are common, and arise because the complicated authorization and importation process creates many opportunities for delays. Unexpected increases in patients and poor estimation of required stock are also factors; hospitals in Dakar treat patients from all over the country, and from neighboring countries as well, making it difficult to estimate need. Because there are only three hospitals that import oral morphine, and all import from the same supplier, there are no back up plans to mitigate deficits.
Indeed, when Human Rights Watch was in Senegal to research this report in November and December 2012, there was an oral morphine shortage that had lasted several months, and doctors estimated that new supply would not arrive until 2013. When Human Rights Watch returned to Senegal for follow up research in July 2013, there was another shortage of oral morphine that had lasted a week, and new stock arrived shortly before our departure.
During shortages, patients suffer tremendously, especially if they have been accustomed to taking medication. Numerous patients whose stories were described above were victims of the shortage. Alboury Seck, a patient with advanced prostate cancer, told Human Rights Watch that he had run out of medication and the pain was unbearable. He used to take 50mg of morphine three or four times a day. When the shortage began, he said he tried to conserve his remaining pills.
I tried to bear the pain for 2-3 days, and when I could not handle it, I would take one pill. I went to all the pharmacies and they do not sell it. I tried to use Tylenol, Motrin, it is the only thing I have with me. Two, three, four times a day, but it is not enough. Only the morphine works.
When in considerable pain, he comes to Dakar and “begs [his physician] for something.” His physician keeps an emergency stock of opiate medicines that he gets as donations from hospitals in Europe, but the shortage had lasted so long that he had no more to give. Desperate, Seck tried sending his prescriptions to Paris, and even sent a relative abroad to find morphine to bring back to him, but with no success.
Several doctors told Human Rights Watch that they go to great lengths to try to limit the suffering of their patients during these shortages. They said that they create an emergency stock of morphine or other opioid pain relievers by asking relatives of deceased patients to return any left-over medications, asking doctors in France or elsewhere to collect donations and save returned opioid pain killers so they or their colleagues can collect them during visits, and asking doctors visiting from other countries to bring donations of opioid analgesics. These emergency stocks are then used during shortages or are given to patients who are too poor to buy the medications.
These emergency stocks, however, do not last long, and these doctors said they have to instruct patients to ration medications as much as possible by reducing the number of pills they take per day. Doctors have to weigh the possibility that a reduced dosage will result in unrelieved pain with the possibility that the patient will run out of medication before new stock arrives. Arame Diouf, mentioned above, had been without morphine for a month before a doctor visited her in her home. The doctor gave her a packet of strong opioid pills that he had brought back from France, but instructed her to only take half a pill each day. Even then, he told Human Rights Watch that it was unlikely that the amount would last her until the end of the shortage.
Doctors expressed their frustration at having to struggle to maintain an emergency stock and constantly keep track of morphine availability. One doctor at Grand Yoff said, "I am a doctor. I shouldn't have to [use my time] to go to France to look for medication..." Regarding the shortage, another doctor at Dantec Hospital, remarked, “I am too busy to…investigate what is happening with the morphine.” Worrying about the supply of medicines creates an additional burden for doctors and other health care workers who are already overextended. Dr. Abdoul Kassé says, “I am a surgeon, but I also have to train students, give palliative care, monitor the supply chain of medications, and meet with government officials [on promoting cancer care].” Dr. Claude Moreira adds, “There is a burn out of staff because there are so many roles to play, and you feel like everything falls into the water.”
The Special Needs of Children
When a child is dying, people [focus only on curing] and ignore palliative care…we need palliative care for both the surviving and the dying.
–Dr. Claude Moreira, oncologist, Dantec Hospital, November 2012.
Children, just like adults, have a right to palliative care when suffering from a life-limiting condition. Often, healthcare workers and family members avoid giving opioid medication to children because they erroneously equate palliative care with “giving up” on the child’s life. WHO however, defines children’s palliative care as “the active total care of the child’s body, mind and spirit,” as well as support for the family—it is not limited to the terminally ill, and should be used from time of diagnosis to support curative care.
WHO has recognized the particular needs of children with regards to palliative care, including through its separate the WHO Model List of Essential Medicines for Children and its Pharmacological Guidelines on Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses. Palliative care for children requires pediatric expertise on child-specific symptoms and diseases. Cancer for example, may cause different symptoms in children than in adults, and certain cancers are more prevalent in or exclusive to children.
Pediatric palliative care includes efforts to assess and treat pain in children, and the provision of medicines in child-appropriate formulations, like morphine syrup. Children, especially young children, express their pain differently than adults do, and accurate assessment is essential to formulating the correct dosage and form of medication. For pediatrics, WHO recommends a two-step ladder for pain treatment because intermediate analgesics, weak opioids, have not been proven as effective for children as for adults. Low level analgesics, like ibuprofen, should be used for mild pain, and strong opioids for more severe pain, with morphine being the “medicine of choice.”
Complete pediatric palliative care also requires expertise in child psychology and child protection because children often suffer from profound trauma and disorientation from serious illness, pain, hospitalization, and invasive medical procedures. Also, some severely ill children are vulnerable to exploitation, abuse, and neglect. Child appropriate methods of communication about the illness and prognosis, communication with the family, and support for the child through play, education, counseling and other activities, can help young patients and their families cope with the difficulties of chronic and life limiting illnesses.
In Senegal, pediatric palliative care is severely limited. Dantec Hospital’s Pediatric Oncology Ward in Dakar is the only facility in the country where children with cancer can receive treatment and pain relief. The ward also cares for children with illnesses other than cancer who suffer from severe pain because there are no other facilities that provide pediatric palliative care. Patients and their families from all over Senegal come to this ward, and many travel long distances. These children leave their families, friends, and schools behind, while their siblings often have to miss one or both parents for the duration of the treatment. For example, Mama Dhiediou and her eight-year-old daughter Fabenne Dhiediou, are from Ziguinchor, and took an 18 hour ride on a ship to get to Dakar. Because Fabenne has a cancerous tumor on her cheek, she stayed for treatment. The two have been staying with relatives in Dakar for the past year, while Mama Dhiediou’s two children, a three-year-old and a 10-year-old, remain with their aunt in Ziguinchor.
Each year, Dantec Pediatrics receives about 160 new cancer patients; Dantec’s staff however, estimate that this figure represents only 20-25 percent of the total number of new pediatric cancer cases in Senegal. As a result, about 75-80 percent of children with cancer are “left to die alone,” with no access to medical support. According to Dr. Claude Moreira, the head of the pediatric oncology ward, the five-year survival rate at Dantec is approximately 60 percent. When pediatric patients are terminally ill, they have the option of remaining in the hospital or returning home.
Most families choose to stay at Dantec because there are end of life symptoms, like severe pain, that require medical expertise to manage—expertise which is not available outside of Dakar. For example, Mouhammad Bandé’s three-year-old son, Omala Bandé, was terminally ill and on morphine for his pain. Healthcare workers estimated that he would die in a matter of days; one staff member told Human Rights Watch, “If you ask [Omala] what he wants, he says he wants to go home.” Their home however, is in Matam, near the border of Mauritania, and it would have taken them over 15 hours of travel by car. Healthcare workers said he would most likely die on the journey, and even if he lived, there would be no morphine there to ease his pain. Omala passed away shortly after Human Rights Watch’s interview, in July 2013.
Policy
Since [they] are going to die, it doesn’t matter. It doesn’t matter if they are going to die in two days or two months.
–Sophie Coulbary, the Secretary General of the Senegalese Association for Palliative Care, on why palliative care is neglected by healthcare and health policy, November 2012.
To successfully address the problems described above, a concerted and coordinated effort by a broad range of governmental and other stakeholders is needed: to develop a decentralized model that makes palliative care accessible to patients in rural areas as well as in tertiary care institutions; to ensure a reliable supply of opioid analgesics and adequate distribution to healthcare facilities; to reform outdated drug regulations; and to incorporate palliative care into instruction for health workers. The WHO Global Action Plan for the Prevention and Control of Non-Communicable Diseases for 2013–2020, approved in May 2013, urges states to develop such a strategy.
At present, Senegal does not have a national palliative care policy or strategy. Although the government has undertaken some efforts to develop a national cancer control program, at present no such program is operational. Similarly, there are no national programs for other chronic illnesses, such as diabetes and cardiovascular disease. The current national HIV/AIDS strategy makes no references to palliative care, and at time of writing, the draft of the new strategy still did not include palliative care. As a result, Senegal lacks a vision for how palliative care services can be implemented in the country or any kind of coordinated efforts to improve palliative care.
Given Senegal’s decentralization and free provision of treatment for HIV/AIDS, malaria, and tuberculosis, and its rural rotating nurses (“Dispenser de Soin au Domicile”) who drive to villages and health huts dispensing care for malaria and vaccines, the country has the resources and capability to develop palliative care services in the community. A strategy that utilizes Senegal’s existing resources to expand access to care could easily capitalize on the existing health infrastructure to develop palliative care at the community level.
The Example of Uganda
In 1998, Ugandan government officials, representatives of nongovernmental organizations, and WHO met at a conference entitled “Freedom from Cancer and AIDS Pain” to discuss how to make pain treatment available to the population. At the meeting, participants agreed to take a series of simultaneous steps to deal with key barriers:
In addition, a commitment was made to ensure coordination of palliative care activities for AIDS and cancer, to set up multidisciplinary clinics for cancer patients, to increase awareness of palliative care among the population, and to identify a demonstration project in Uganda’s Hoima District where Little Hospice Hoima, a branch of palliative care organization of Hospice Africa Uganda, was already active.
In its five-year Strategic Health Plan for 2000-2005, the government stated that palliative care was an essential clinical service for all Ugandans, becoming the first nation in Africa to do so. It also added liquid morphine to its essential drug list, adopted a new set of Guidelines for Handling of Class A Drugs for healthcare practitioners—also a first in Africa—and, in 2003, authorized prescribing of morphine by nurses who have been trained in palliative care.
By early 2009, 79 nurses and clinical officers had received training on pain management and been authorized to prescribe oral morphine; several thousand healthcare workers had attended a short course on pain and symptom management; and 34 out of 56 districts in Uganda had oral morphine available and in use. The initiatives that Uganda took can serve as a model for Senegal and other resource strapped countries that need to begin developing palliative care services. As Uganda’s progress shows, palliative care is easy and cheap to administer, but the government needs to have political will and organization to develop a strategy of implementation.
Rwanda’s National Palliative Care Strategy
In 2010, Rwanda became the first African country to adopt a stand-alone palliative care policy. While some countries have palliative care policies that are inserted as subsections of a national policy for HIV/AIDS, cancer, or other illness, a stand-alone palliative care policy is more effective because the government can focus specifically on palliative care and its development in a variety of disciplines. Rwanda’s policy’s goal is to ensure that all people with life-limiting illnesses in Rwanda will have access to quality palliative care services delivered in an affordable and culturally appropriate manner by 2020. It seeks to achieve this goal by promoting the “development or improvement of palliative care across the different services levels, within the organizational capacity of various service providers.” The policy is accompanied by a “Five-Year Strategic Plan for Palliative Care for Incurable Diseases,” which sets goals for the period between 2010 and 2014. According to the strategic plan, the ministry of health will regularly monitor and report on progress toward the implementation of the policy.
Since the adoption of the policy in 2010, Rwanda has had a home based hospice service that made over 700 patient visits in 2012 alone. With support from Hospice Without Borders, an organization from United States committed to supporting the clinical home care service, the hospice service has also provided palliative care training to over 500 nurses, doctors and community healthcare workers. The organization works with Kibagabaga Hospital, which is the center of excellence in palliative care and the first district hospital to succeed in integrating this new approach in various inpatients services. Moreover, a cancer center in the Butaro district opened a new wing to manage a large number of patients, who required diagnosis and treatment.
Senegal’s Essential Medicines List
The Direction de la Pharmacies et des Medicaments (DPM) is the government body in charge of regulating Senegal’s list of essential medicine. As mentioned, the government did take an important step forward by adding oral morphine tablets and tramadol, a weak opioid, to the 2012 essential medicines list. Nevertheless, the list still has two major shortcomings that limit palliative care accessibility, especially for rural patients and children.
First, the list restricts morphine to regional and national hospitals, which are only located in Dakar and main regional cities. Pharmacists and government officials at the DPM have interpreted the list differently. Numerous healthcare workers and regional pharmacists have told Human Rights Watch that it is against the law to stock morphine outside of hospitals. However, Papasaliou Diop, the director of the DPM, said that all facilities are allowed to stock it, but only hospitals can sell it to outpatients. According to Diop’s interpretation, nurses at health posts, and even community volunteers, could keep oral morphine on stock as long as they have doctor supervision. Both interpretations of the list restrict the development of palliative care services at the community level. Health posts are only staffed by nurses, and while they are affiliated with health centers, doctors do not supervise them directly. Preventing lower level health facilities from selling oral morphine forces patients to travel to the facility and pay a consultation fee each time they need their dosage—which may be multiple times per day. These drugs need to be available and accessible at more levels of care.
Secondly, and contrary to WHO’s recommendations, the list does not include liquid oral morphine. Smaller children and adults with mouth and throat cancers often cannot swallow capsules, so morphine syrup is essential to managing their pain.
During research in Senegal in July 2013, Human Rights Watch spoke with government officials at the DPM who said that they are considering adding morphine syrup to the next revision of the list. Pharmacists have not been able to find a vendor of morphine syrup, and have successfully made their own morphine syrup by using morphine powder. The DPM however, claims that “morphine powder is not a medicine, it is a chemical,” and therefore does not belong on the list. If the powder is not on the list, the National Pharmacy will not import it, and hospitals will have to import it themselves, through a complicated process that often results in shortages. It is crucial that the government ensures that the National Pharmacy takes charge of procuring either morphine syrup or morphine powder.
Training
We are not focused on palliative care because we are not used to it. It’s not part of training or in courses. We never think much about suffering.
–Papasaliou Kame Gaye, head doctor and pediatrician, Ndioum Regional Hospital, November 2012.
A dearth of training on palliative care means that many health care workers do not fully understand palliative care or have the skills to provide it. The lack of education also enables health care workers to continue to subscribe to a variety of myths and misconceptions about strong opioid analgesics.
Under the right to health, governments must take reasonable steps to ensure health care workers have appropriate training. As an integral part of care and treatment for cancer, HIV, and various other chronic illnesses, countries need to ensure that basic instruction on palliative care and pain management is part of undergraduate medical studies, nursing school, and continuing medical education. Specialized instruction should be available for healthcare workers who pursue a specialization in oncology, HIV and AIDS, and other disciplines where knowledge of pain management and palliative care is a key part of treatment.
Medical Education in Senegal
There are doctors who have never prescribed [morphine]…they think it’s normal. They accept suffering.
–Dr. Oumar Ba, pulmonologist at Grand Yoff, November 2012.
Dr. Boubakar Gueye, former head of the non-communicable diseases department at the Ministry of Health, said that lack of training for healthcare workers was a significant obstacle to palliative care development. Madické Gueye, head of internal medicine at Grand Yoff Hospital, specifically noted that lack of familiarity with opiates is the greatest barrier. He said, “Before administering a product, you must know it. Doctors must know why we use a drug and how to use it.” Most of the doctors who are currently active in providing palliative care received their training outside of Senegal, usually in France. Several doctors also learned by attending post graduate training in Burkina Faso, Sudan and Uganda. It is imperative however, that such training become available in Senegal.
Senegal has both public and private medical schools. The state monitors both types of schools to ensure that essential programs are taught, but the faculty has flexibility to structure the curriculum and add additional classes. For example, the faculty at Dakar’s Cheikh Anta Diop Medical School added a course on oncology. After medical school, many doctors go on to specialize in a specific area of medicine.
Several recently graduated doctors said that they had received basic training on pain relief, but that there was no specialized training for palliative care. All of the faculty members of medical schools that Human Rights Watch interviewed confirmed that there are no classes on palliative care in the medical school curriculum, and no stand alone classes on pain management. Pain management is taught as a component of classes on physiology and anesthesiology. There are no specialization programs for palliative care because it is not yet recognized as a specialty or subspecialty of medicine. Thus, while doctors may have basic knowledge of pain relief, they usually do not have comprehensive understanding of pain evaluation and its application to the chronically ill.
This year however, Dr. Claude Moreira, head of Dantec Hospital’s Pediatric Oncology Ward and professor at Cheikh Anta Diop Medical School and Thiès University, began teaching a class on children’s palliative care. Dr. Ahmadou Dem, oncologist at Dantec Hospital’s Joliot Curie Institute and professor at Cheikh Anta Diop Medical School, is preparing a course on geriatrics and palliative care, which will become a mandatory part of the school’s curriculum starting this fall. Additionally, Bernard Diop, a retired doctor and HIV specialist, is in the process of organizing a specialization in palliative care at Thiès University. This progress is a laudable step forward in medical education in Dakar and Thiès, but it is still necessary for the government to integrate palliative care into the country’s medical curriculum requirements as a whole.
In addition to a lack of palliative care training in medical schools, Senegal also has no regular continuing medical education courses in palliative care or pain management. As a result, practicing physicians do not receive updated knowledge on these disciplines. Dr. Ahmadou Dem, an oncologist at Dantec Hospital, pointed out that, “most doctors from my era were not trained in palliative care, so there is a deficit of knowledge.” Dr. Dem, and many other members of ASSOPA, graduated from medical school about 20 years ago. According to him and his colleagues, medical schools used to actively discourage the use of strong opioid analgesics, inaccurately teaching students that morphine is a dangerously addictive drug of last resort and emphasizing potential side effects, such as respiratory depression.
The head doctor at one regional hospital, for example, said that he had never used morphine during his career because he was “afraid to.” He said that his medical school had taught him that morphine was a “dangerous narcotic,” only to be used in extreme emergencies. Knowledge of and best practice standards in pain management have evolved significantly in the last few decades, making continuing education programs in the subject essential.
Nursing Education
“One cannot say they are not trained, but that they are not sufficiently trained.”
–Dr. Madické Gaye, head of internal medicine, Grand Yoff Hospital, December 2012.
In a country like Senegal, with a small ratio of one medical doctor per 11,000 individuals, nurses play an especially important role in the provision of palliative care. Even in major hospitals, nurses are closest to the patients and their families and regularly charged with dispensing medication and monitoring patients. While they may not be able to provide the full scope of palliative care services, with training they can assess pain, provide basic care, and refer patients for more complex interventions. In Uganda for example, the government has been training nurses to prescribe opioids to patients, greatly expanding access to palliative care in communities (see text box, “The Example of Uganda,” in Section III, Exploring the Causes of the Palliative Care Gap).
In Senegal however, palliative care is barely addressed in nurse training. To become a nurse, it is necessary to complete an undergraduate degree, and then complete three years in nursing school. Like doctors, nurses can also seek additional education for a specialty, but there is no specialty in palliative care.
Nursing education is decentralized, with public and private nursing schools in every region. While they do teach basic pain management and some palliative care, instruction is limited. In general, there are no stand-alone classes for either discipline. Palliative care is taught as a small component of the “nursing care” class; most nurses received only about two to four hours of education on palliative care in their schools. Dr. Abdou Omar Fall, an anesthesiologist at Ziguinchor Regional Hospital, notes that, “morphine has side effects, so we need to monitor patients, but our nurses do not have the training.” Madické Gaye, a former nurse who is now a doctor, wrote his medical school thesis on pain management. In his experience, most nurses cannot properly evaluate pain; they do not understand the WHO ladder in giving pain medication, and many do not realize that lack of pain management is a problem.
Nurses with a specific interest in palliative care have little choice but to study by themselves. Two nurses, Amory Diop and Abdoulaye Gueye, told Human Rights Watch that they had to “train themselves” in palliative care through learning on the job while working with patients in severe pain. Gueye runs a home care service at Grand Yoff hospital, predominantly for patients with diabetes, while Diop used to run a general home care service at Dantec Hospital Diop recently organized palliative care classes for the nursing school curriculum, and now teaches it at Dakar’s National Nursing School (École Nationale des Infirmières de l’Etat). He hopes that other nursing schools will follow suit and establish palliative care programs.
Notably, Senegal has rotating nurses called “Dispensers de Soin au Domicile.” Equipping these rotating nurses with oral opiates and basic training on dosage and administration would be a cheap, easy, and effective way to greatly expand access to palliative care in rural areas.
Consequences of Inadequate Training
Lack of training inhibits healthcare providers from administering palliative care services, but it also results in false assumptions about palliative care and failure to understand patients’ needs for pain treatment.
Misconceptions about Morphine Use
Over the course of our research, various doctors and government officials expressed concerns about negative side effects that morphine might have on patients, such as dependence and respiratory depression. While WHO has noted that these “greatly exaggerated fears of addition” are unwarranted because studies have shown that only 0.05% of patients using opiates for medical purposes develop dependence syndrome; therefore, “the risk of [drug] dependence should not be a factor in deciding whether to use opioids to treat [patients].” Withdrawal can be prevented by gradually reducing the dose instead of making an abrupt interruption. Following best practices for prescribing opioid analgesics, proper monitoring, and follow-up with patients, can minimize the risk of misuse and side effects; most side effects can be easily managed with inexpensive medications.
Access to education will give healthcare workers the knowledge and confidence to administer these medications, and will also raise awareness of the purpose of morphine and palliative care. Both healthcare workers and government officials told Human Rights Watch that they had thought morphine was only for the terminally ill, or more specifically, only necessary for advanced cancer patients. One official at the National Pharmacy explained that regional pharmacies do not need morphine because, “morphine is for people with terminal cancer, and those people are taken care of only in Dakar.”
As emphasized repeatedly throughout this report, palliative care is treatment for chronic pain and other distressing symptoms, necessary from the time of diagnosis, utilized to support curative care, and applicable to a wide range of illnesses, including HIV/AIDS and diabetes. Additionally, patients with advanced cancer exist everywhere in Senegal. Those who cannot afford treatment in Dakar, or otherwise die in their homes, need access to palliative care medication in their communities.
Failure to Recognize Palliative Care Needs
Pain is subjective. People do not understand the pain that others feel. Sometimes they think that it is a joke.
–Dr. Madické Gaye, head of internal medicine, Grand Yoff Hospital, December 2012.
Patients prefer to not speak about pain, they’d prefer to die—the people here are proud.
–Cirré Mamoudou Sy, head nurse at Ndioum Regional Hospital, November 2012.
Though most healthcare workers told Human Rights Watch that there are numerous patients with severe pain in their facilities, some healthcare workers, seemed to trivialize the seriousness of pain, reflecting their lack of knowledge about palliative care and pain management. Some maintained that patients only have pain psychologically or that all pain can be relieved with a combination of weak pain killers. An anesthesiologist in Thiès who worked in maternity claimed that there is “no pain that cannot be resolved” with low level opioids or anti-inflammatory pain killers. This statement of course, is contrary to medical findings, and scientific fact, and patient experience.
Healthcare workers and patients also told us that in Senegalese culture, pain is something to be borne, not something to complain about. As one nurse put it, “[w]e can die of pain, but we cannot cry or show a face that we are feeling bad.” One patient with breast cancer told Human Rights Watch that she had severe chest and shoulder pain that prevented her from sleeping for more than a year. She said that she would have liked to have pain medication because, “if I had it, I would have been able to sleep, but I was not able to sleep at all.” She never told her doctor about this pain because “the doctor never asked.”
In some cultural contexts in Senegal, expressing pain is widely seen as a sign of weakness, which makes it all the more important that healthcare workers routinely ask about pain and proactively evaluate it—otherwise patients will suffer. The case of Mouhammad Ndiasse underscores the importance of proper pain evaluation after pain medications have been prescribed. Mouhammad Ndiasse, a 13-year-old cancer patient, told Human Rights Watch he was receiving paracetamol, a weak analgesic, for pain caused by tumors in his neck. When asked whether they were effective, he answered, “yes.” However, upon further inquiry, he and his mother told us the medication controlled the pain only for about one hour; he had to wake up three or four times during the night to retake it, and suffered from intermittent pain throughout the day. One patient, Serigne was in need of a higher level medication, but healthcare providers had not adequately or continually evaluated his pain.
Poor Evaluation and Treatment of Pain in Children
Misconceptions of morphine use are particularly complicated in pediatrics. Some healthcare providers erroneously equate palliative care with “giving up” on a child’s life, and may hesitate to give children any opiate pain relief. As a result, many children with pain may end up being treated inadequately. Training in evaluating pain in children is particularly important as younger children might not be able to express whether or not they are suffering. Human Rights Watch interviewed some parents of pediatric patients who recounted that their children had not been given pain medications at all.
WHO has expressed concern that, “[a]lthough the means and knowledge to relieve pain exists, children’s pain is often not recognized, is ignored or even denied.” The WHO Guideline on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses emphasizes that, “[a]ll patients with pain, including children, should be treated, irrespective of whether or not the underlying cause can be identified. Inability to establish an underlying cause should not be a reason to conclude that the pain is fabricated.”
The Guidelines recommend that the pain medications be given at regular intervals, not just when the child is in pain, and that oral medications be used whenever possible, and that the dosage and any auxiliary medications be adapted to the specific needs of the individual child. As long as the pain is not fully relieved, dosage should be increased no more than 50 percent per 24 hours.
Drug Availability
The 1961 Single Convention on Narcotic Drugs created an international system to regulate supply and demand of controlled substances, which is monitored and enforced by the International Narcotics Control Board (INCB). National drug control agencies are responsible for communicating with the INCB about medical drug needs, imports and exports, and regulating all domestic transactions. Governments have exclusive control over the domestic supply of controlled substances. Thus, unlike medications which can be produced or imported freely, opiate analgesics will not be legally available unless the government ensures adequate supply and distribution.
In the context of the war on drugs, many countries, including Senegal, focus only on preventing illegal drug use, and neglect the obligation to ensure drug availability for medical purposes. The INCB has explicitly stated that “an efficient national drug control regime must involve not only a programme to prevent illicit trafficking and diversion but also a programme to ensure the adequate availability of narcotic drugs for medical and scientific purposes.” Additionally, the INCB has said, “governments that have not done so should determine whether there are undue restrictions in national narcotics laws, regulations, or administrative policies that impede prescribing, dispensing or needed medical treatment of patients…[and] make the necessary adjustments.”
In May 2013, the African Union (AU) adopted the African Common Position Paper on Controlled Substances and Access to Pain Management Drugs, which supports the INCB recommendations and urges member states to ensure an effective supply system of opiate medications and amend undue legal and regulatory restrictions on their availability. The Paper also calls on member states to promote comprehensive curricula on rational use of controlled medications in relevant educational and healthcare institutes and facilities.
National drug availability programs must be capable of ensuring that adequate amounts of controlled medicines are available at all times; that an effective system of distribution is in place; that a sufficient number of pharmacies and health facilities stock them; that healthcare workers can prescribe these medications without unnecessary bureaucratic difficulties; and that patients around the country can reasonably gain access to them. As the World Health Organization has noted, good communication between health workers and drug regulators is crucial to meet these goals. To guarantee an effective distribution system, governments must ensure that a sufficient number of pharmacies are licensed to handle morphine and that procedures for procuring, stocking and dispensing it are workable.
Challenges with the Supply and Distribution of Opioid Analgesics Senegal’s Quota for Opioid Analgesics
Countries submit estimates of their annual need for controlled medications to INCB, which then approves a quota for each country. Obtaining an appropriate quota is the first step toward ensuring the adequate availability of opioid analgesics. Many countries, however, submit estimates that are not based on assessment of population need but on past consumption, which tends to vastly understate the actual medical requirement. The Head of Narcotics at the Directorate of Pharmacies and Medicines (DPM) told Human Rights Watch that sometimes Senegal reaches its quota during the year and has to request a supplemental quota from the INCB. In such cases, morphine shortages are likely to occur as orders cannot be placed until that request is made and approved.
According to Dr. Daouda Diop, the Head of Technical Services and Operations at the National Pharmacy, Senegal has been using approximately the same quota since the 1960s. To make estimates, the DPM sends inquiries to healthcare facilities concerning morphine usage. However, few facilities respond, thus the DPM ends up using what it has in previous years. As a result, for 2013, Senegal estimated it would need 1,180 grams of morphine, an amount that would suffice for about 194 patients with advanced cancer or HIV/AIDS. Given that morphine is also used to relieve post-surgical pain and in various other medical procedures, the actual number of palliative care patients that can be treated with that quota is far smaller. When approximately 5,100 Senegalese die each year from cancer and 1,600 from AIDS, and thousands more need palliative care for other illnesses, this quota is a tiny fraction of the actual need.
The INCB has repeatedly reminded countries of their obligation to submit estimates based upon medical requirement, and has encouraged all countries to review their methods for preparing estimates to ensure that they accurately reflect the actual requirement. To help countries fulfill this obligation, the INCB and WHO recently issued a Guide on Estimating Requirements for Substances under International Control.
The State Supply and Distribution System
Senegal has a central, state-run agency called the Pharmacie Nationale D’Approvisionment (PNA), which procures medications that are on the country’s essential medicines list and distributes them through a network of regional affiliates, known as Pharmacies Regional D’Approvisionnement (PRA). Public healthcare facilities can then order these medications at subsidized prices. In theory, this can be an effective vehicle for ensuring the availability of opioid analgesics throughout the country, but our research has found that it has not operated well for opiates for a variety of reasons.
First, as noted above, Senegal’s essential medicines list did not include oral morphine or weak opioid analgesics until the changes introduced in 2013. Private pharmacies sold weak opioids, but only hospitals could import morphine. The importation process is highly complex (see “Private Importation of Oral Morphine: A Complicated Process,”, Exploring the Causes of the Palliative Care Gap), so few hospitals actually did import them. Without the PNA, prices for these medications are more expensive because individual facilities do not order in bulk, and medicines from private pharmacies and suppliers are not subsidized. The Head of Importation at the PNA estimates that oral morphine will be stocked by the end of the year, which will be a great improvement. However, the list still does not have liquid oral morphine, and restricts dispensation of all morphine to regional and national hospitals. To improve palliative care access for children, and for people who live in rural areas, the government must include morphine syrup on the essential medicines list and allow district level health facilities to dispense opiate medications.
Secondly, we found even with medications that were on the 2008 list of essential medicines, like injectable morphine and buprenorphine (locally known as Temgesic), the PNA did not have a constant supply. During our research in December 2012, the PNA has run out of injectable morphine and was in the process of ordering it. Additionally, there was a country wide shortage of Temgesic that had lasted over six months. One official at the PNA told Human Rights Watch that the PNA had not stocked Temgesic since 2008. While injectable morphine was restocked in about two weeks, officials at the PNA and DPM were unsure of the reasons for the Temgesic shortage, and Temgesic remained unavailable.
Thirdly, we found that injectable morphine was never distributed to any of the PRAs outside Dakar. When Human Rights Watch asked officials at the DPM and PNA about the lack of distribution, they explained that no facilities outside of Dakar ask for morphine. The director of the PRA of Zigunchor said, “There is no demand for morphine here. I only order the need of the region.” Yet, when Human Rights Watch interviewed doctors in Podor, Thiès and Zigunchor, several said they wanted to use morphine, but when they asked for it, their pharmacies or local PRA said it was unavailable. An anesthesiologist at Thiès Regional Hospital, who has worked there since 2002, told us, “Each year, we ask [the PRA] for morphine…we have asked, and asked, and asked, and we still do not have it.” The head pharmacist at Thiès Regional Hospital said she wants to order morphine, but when she wrote to the DPM requesting authorization to stock it, she received no response. The pharmacist at Ndioum Regional Hospital tried to place an order for morphine once, but there was a shortage.
Several other doctors told Human Rights Watch that they would like to use morphine for patients, but never asked for it because they assumed it was unavailable. A surgeon in Thiès said that since morphine is not listed in the PRA’s catalogue of medicines, he assumes that it cannot be procured, therefore he has never asked for it. Similarly, a doctor at Zingunchor’s Centre de Santé said, “What is available is available, what is not is not.” Doctors work without morphine because it is unavailable, and because they work without it, government officials assume that they do not need to use it.
Procurement Authorization
Prior to procuring opioid analgesics, healthcare institutions must obtain authorization from the Direction de la Pharmacie et des Medicaments (DPM). While this step is not necessarily a barrier to drug availability, there appeared to be confusion over what institutions can obtain such authorization and on what basis it is granted or denied.
Officials at the DPM told Human Rights Watch that there is no written regulation that sets out the authorization process, but several officials and head pharmacists described it as follows. First, the head pharmacist of the hospital submits a written request for authorization to the DPM, specifying which narcotic and in what amount the hospital needs. Rokhaya Ndiaye Kandé, the Director of Narcotics at the DPM, told Human Rights Watch that her department reviews the request to determine whether there is “good justification” and examines the healthcare institution’s existing stock to ensure that it does not end up with “excessive” supply. Kandé told Human Rights Watch that denial of authorization is rare.
Without clear written regulations, there is confusion as to who can stock morphine and how the DPM determines whether there is “good justification.” Kandé said that any hospital—but not a centre de santé or lower level facility—can apply. According to Kandé, frequent morphine shortages occur because hospitals do not understand the authorization process and do not manage opiate supply. If the morphine quota runs out, Kandé must arrange for a supplement with the INCB; she is unsure of the exact length of time this process takes, but assured us that it takes “a very long time.” For opiates that are not on the list of essential medicines, the entire procurement process takes several months, and errors cause additional delays.
The head pharmacists interviewed said they usually begin this ordering process about three to four months before they expect stock to run out. According to them, lack of flexibility in the authorization process exacerbates shortages. For example, the central pharmacy at Dantec Hospital needed to order more oral morphine in September. They applied for and received authorization from the DPM, but when they proceeded with the order, they encountered difficulties paying the supplier. By the time Dantec obtained the funds to pay for the medication, the authorization had expired. The DPM initially refused to grant Dantec a new authorization form until the expired one, which had already been sent abroad to the supplier, was returned. After much convincing, the DPM finally consented to issuing a new authorization, but during that delay patients suffered.
Rules for Handling, Prescribing and Dispensing of Opioid Analgesics
Under international law, countries must regulate the handling, prescribing and dispensing of strong opioid analgesics. The 1961 Single Convention on Narcotic Drugs lays out three minimum criteria that countries must observe in developing national regulations regarding the handling of opioids:
Governments may, under the Convention, impose additional requirements if deemed necessary, such as requiring that all prescription be written on official forms or authorized professional associations. However, WHO has emphasized that these requirements must be balanced with the obligation to ensure medical access to opiates, and any regulations that unnecessarily impede access will be inconsistent with both the UN drug conventions and the right to health. In 2011, WHO published a guideline, Ensuring Balance in National Policies on Controlled Substances, to help policy makers develop a “practical system.”
Special Prescription Form
Senegalese regulations require doctors to write prescriptions for strong opioid analgesics on special prescription pads. These pads must be obtained from a hospital and carry the name of the doctor and a unique number. While the UN 1961 convention specifically allows countries to require their use, special prescription pads are often a significant barrier to the prescription of strong opioid analgesics because they limit the number of people who can prescribe them. In Senegal, only doctors can prescribe morphine. However, because the prescription pads are only dispensed from hospitals that stock morphine, doctors who are not employed by such hospitals will be unable to obtain the pads. Even in certain hospitals, the number of doctors who are given these pads is limited. According to the head pharmacist at Principal Hospital, only two doctors in the entire hospital are authorized to prescribe morphine.
In rural areas, where the ratio of doctor to patient is said to be low, it is almost impossible for patients to find someone with the authority to prescribe morphine to relieve their pain. WHO recommends that the competence to prescribe controlled medicines, including strong opioids, not be restricted to a small number of medical specialties, and that they should be available through a sufficiently dense network of pharmacies or other distribution points. Several other countries have changed their regulations to allow nurses to prescribe oral morphine, greatly expanding the range of distribution of these medicines.
Time Limit on Prescriptions
Under Senegal’s law on drugs, doctors cannot prescribe more than a seven-day supply of any substance under Table II, plants and substances that have a high risk of abuse. Because morphine is included under Table II, doctors can only prescribe one week’s worth of the medication per prescription. While the law explicitly permits the Minister of Health to extend this time limit by ministerial decree to a maximum of 60 days, no such decree had been issued for morphine. Since prescriptions for table II substances must be filled within seven days of the date issued, doctors can give patients one refill, which cannot be filled at the same time as the initial prescription. Thus, patients who need strong opiates, or any table II medication, must return to their doctor at least every two weeks to get new prescriptions, and go to the pharmacy every week to fill prescriptions. Since morphine is only available in Dakar, patients who live outside the capital must travel on a weekly basis; for many, the journey is long and expensive. Furthermore, these patients must pay a consultation fee every two weeks to see their doctor and pick up prescriptions. When they are too weak to travel any longer, they may send a relative to Dakar, relocate to Dakar, or suffer at home.
While there are good reasons, including preventing diversion, for certain limitations on the length of time medications can be dispensed, Senegal’s time restriction is excessively burdensome, and more restrictive than the one imposed by most other African countries. A survey by Nathan Cherny of the European Society for Medical Oncology on availability of opioid medications in 23 African countries found that only five had a prescription limit of seven days or less; five had a limit of ten to fifteen days; and eleven had a limit of twenty-eight days or more.
In recent years, there has been a global trend to increase the length of time a prescription for oral morphine can cover, with many countries settling on about a month. Some countries that changed their limits in recent years include Romania (from 3 to 30 days), France (from 7 to 28 days), Mexico (from 5 to 30 days), Peru (from 1 to 14 days), and Colombia (from 10 to 30 days).
The Lack of a Network of Pharmacies with Oral Morphine
As of July 2013, Dantec Hospital’s Central Pharmacy is the only pharmacy in all of Senegal that sells oral morphine to the public. While Grand Yoff Hospital and Principal Hospital also have oral morphine, the supply is limited to their inpatients only. The head pharmacist of Dantec told Human Rights Watch that patients come to his pharmacy from various other hospitals and private clinics, making it difficult to estimate needs and sometimes leading to shortages.
There used to be another pharmacy in Dakar that sold oral morphine to the public, a private pharmacy called Pharmacie Guigone. Though Guigone had been selling oral morphine for decades, a ministerial decree in early 2012 forbid them from continuing sales. According to the Director of Narcotics at the Direction de la Pharmacies et des Medicaments, Guigone’s sale of the pills was in violation of Senegalese law because the only hospitals are allowed to stock morphine. With Guigone unable to sell oral morphine anymore, patients have become even more reliant on Dantec Hospital. Expanding distribution to private pharmacies would establish a buffer against shortages and increase the accessibility of opiate medicines.
Private Importation of Oral Morphine : A Complicated Process
Though the government added morphine pills to the 2012 list of essential medicines, at time of this writing the PNA still has not begun procuring morphine pills. Additionally, liquid morphine still has not been added. As a result, hospitals must import all oral morphine themselves, a process that is extremely complicated due to government anti-corruption regulations.
Under Senegalese law, public institutions may buy medications or other goods from a private supplier only after going through a competitive bidding process. If the funds for the purchase come from the government, only Senegalese companies are permitted to bid; any international supplier wishing to participate must do so through a domestic partner. The public institution must take the lowest bid. The government enacted this requirement to prevent corruption and promote efficiency and transparency, but since hospitals order a small quantity and the profit margin on morphine is low, no suppliers bid. Only three hospitals managed to procure oral morphine, and had to go through great difficulty to do so.
For morphine pills, pharmacists at Dantec, Principal, and Grand Yoff told Human Rights Watch they had launched competitive bidding processes but had received no bids. Mamadou Sahko, the adjunct head pharmacist at Principal Hospital, for example, said that no supplier had responded to their calls for bids for morphine pills in the past two years. However, a direct purchase from a private supplier is permitted only if the bidding process fails at least twice, and after the Ministry of Markets examines the reasons for the failure. After that, the public institution must request bids directly from companies that are potentially interested. If that too fails, then the institution can order directly from the supplier. At the time of our research, only Dantec Hospital and Grand Yoff have morphine pills.
For morphine syrup, Dantec Hospital, Grand Yoff Hospital, and Principal Hospital managed to import morphine powder, which they dilute with syrup to make liquid morphine. To obtain the powder however, Dantec’s pharmacists said they had to beg Val D’Afrique, a Senegalese company, to act as an intermediary to purchase the powder from an international company. The representative of Val D’Afrique told Human Rights Watch that they wait for the hospital to place an order before ordering from an international supplier; since the powder is not profitable, they do not keep it in stock. As a result, shortages cannot be addressed quickly.
National Law
Article 8 of Senegal’s constitution guarantees the right to health to all its citizens, stating:
The Republic of Senegal guarantees all citizens basic freedoms, the economic and social rights and collective rights as follows…the right to health...The only limitation in principle to the exercise of a freedom guaranteed by the Constitution is that this exercise must respect the freedom of others and do not create harm to others or disturb public order.
Article 17 further states:
The State and local public office have a duty to ensure the health and welfare of the family, and in particular persons with disabilities and the elderly. Rural women have the right to access to health and well-being.
The constitution does not define the exact scope or content of the right to health, but Health is a fundamental human right enshrined in numerous international human rights instruments, several of which Senegal is party to.
The Right to Health
The International Covenant on Economic Social and Cultural Rights (ICESCR)’s article 12 specifies that everyone has a right "to the enjoyment of the highest attainable standard of physical and mental health." The Committee on Economic, Social and Cultural Rights, the body charged with monitoring compliance with the ICESCR, has held that states must make available in sufficient quantity "functioning public health and health-care facilities, goods and services, as well as programmes," and that these services must be accessible. Article 16 of the African Charter on Human and Peoples' Rights (ACHPR) states that, “every individual shall have the right to enjoy the best attainable state of physical and mental health…State Parties to the present Charter shall take the necessary measures to protect the health of their people and to ensure that they receive medical attention when they are sick.”
The Convention on the Rights of the Child (CRC)’s article 24 states, “States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health…States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services.” Under international law, children have the right to access health care without discrimination on the basis of age or health status, among other grounds. The CRC, the ACHPR and the African Charter on the Rights and Welfare of the Child all protect children from discrimination on various grounds, including “other status.” Bodies responsible for interpreting international conventions have stated that “other status” includes both age and health status. Therefore, children cannot be arbitrarily excluded from palliative care services, and reasonable steps must be taken to ensure that palliative care appropriate for children of all ages is available, and at least as accessible as services for adults.
Because states have different levels of resources, international law does not mandate the kind of health care to be provided. The right to health is considered a right of "progressive realization." By becoming party to the international agreements, a state agrees "to take steps…to the maximum of its available resources" to achieve the full realization of the right to health. In other words, high-income countries will generally have to provide healthcare services at a higher level than those with limited resources. But all countries will be expected to take concrete steps toward increased services, and regression in the provision of health services will, in most cases, constitute a violation of the right to health.
Notably, the United Nations Committee on Economic, Social and Cultural Rights has also held that there are certain core obligations that are so fundamental that states must fulfill them. While resource constraints may justify only partial fulfillment of some aspects of the right to health, the Committee has observed vis-à-vis the core obligations that "a State party cannot, under any circumstances whatsoever, justify its non-compliance with the core obligations…, which are non-derogable." The Committee has identified, among others, the following core obligations:
The Committee lists the obligation to provide appropriate training for health personnel as an “obligation of comparable priority.”
Senegal ratified the ICESCR in 1978, the ACHPR in 1982, and the CRC in 1990.
Palliative Care and the Right to Health
Given that palliative care is an essential part of healthcare, the right to health requires that countries take steps to the maximum of their available resources to ensure that it is available. Indeed, the Committee on Economic, Social and Cultural Rights has called for “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.” A number of different state obligations flow from this:
The Committee on Economic, Social, and Cultural Rights has stipulated that the right to health requires states to “refrain from interfering directly or indirectly with the enjoyment of the right to health.” States may not deny or limit equal access for all persons, enforce discriminatory health policies, arbitrarily impede existing health services, or limit access to information about health. Applied to palliative care, this obligation means that states may not put in place drug control regulations that unnecessarily impede the availability and accessibility of essential palliative care medications, such as morphine and other opioid analgesics.
Facilitating the Development of Palliative Care
The right to health also includes an obligation to take positive measures that “enable and assist individuals and communities to enjoy the right to health.” Applied to palliative care, this means that states must take reasonable steps in each of the three areas the World Health Organization has identified as essential to the development of palliative care. As noted in chapter IV, these three prongs of WHO correspond closely with several core obligations under the right to health, which means that states cannot claim insufficient resources as justification for failing to take steps in these three areas.
Ensuring Age Appropriate Palliative Care for Children
The government should include a medical protocol on pain management for children in accordance with the WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses. The palliative care strategy should outline plans to create palliative care units with expertise in children’s palliative care in district, provincial, and national hospitals, and ensure that existing services respond to the needs of children and their families, and raise awareness about the existence of these services.
Ensuring Integration of Palliative Care into Health Services
The right to health requires states to take the steps necessary for the “creation of conditions which would assure to all medical service and medical attention in the event of sickness.” The Committee on Economic, Social and Cultural Rights has held that people are entitled to a “system of health protection which provides equality of opportunity for people to enjoy the highest attainable level of health,” including chronic or terminal illness.
The Committee has called for an integrated approach to the provision of different types of health services that includes elements of “preventive, curative and rehabilitative health treatment.” It has also held that investments should not disproportionately favor expensive curative health services which are often accessible only to a small, privileged fraction of the population, rather than primary and preventive health care benefiting a far larger part of the population. The same principle applies to palliative care services. WHO recommends that low- and middle-income countries focus on developing community-based palliative care services because they are inexpensive. Given the large percentage of cancer and other patients who require palliative care services, particularly in low- and middle-income countries, considerable urgency needs to be given to developing palliative care services for these patients.
Pain Treatment Medication and the Right to Health
As injectable and oral morphine are on the WHO List of Essential Medicines for adults and for children, countries have to provide these medications as part of their core obligations under the right to health, regardless of whether they have been included on their domestic essential medicines lists. States must make sure these medicines are both available in adequate quantities and physically and financially accessible for those who need them.
In order to ensure availability and accessibility, states have, among others, the following obligations:
Financial accessibility means that, while the right to health does not require states to offer medications free of charge, they must be "affordable for all." In the words of the Committee:
Payment for health-care services…has to be based on the principle of equity, ensuing that these services, whether privately or publicly provided, are affordable to all, including socially disadvantaged groups. Equity demands that poorer households should not be disproportionately burdened with health expenses as compared to richer households.
Countries have an obligation to progressively implement palliative care services, which, according to WHO, must have "priority status within public health and disease control programmes." Countries must take all steps that are reasonable within available resources to execute the plan. Failure to attach adequate priority to developing palliative care will violate the right to health.
Pain Treatment and the Right to Be Free from Cruel, Inhuman and Degrading Treatment
The right to be free from torture, cruel, inhuman and degrading treatment or punishment is a fundamental human right that is recognized in numerous international human rights instruments. Apart from prohibiting the use of torture, cruel, inhuman, and degrading treatment or punishment, the right also creates a positive obligation for states to protect persons in their jurisdiction from such treatment.
This obligation includes protecting people from unnecessary pain related to a health condition. As Manfred Nowak, the UN Special Rapporteur on Torture, Cruel, Inhuman and Degrading Treatment and Punishment wrote in a joint letter with the UN Special Rapporteur on the Right to Health to the Commission on Narcotic Drugs in December 2008:
Governments also have an obligation to take measures to protect people under their jurisdiction from inhuman and degrading treatment. Failure of governments to take reasonable measures to ensure accessibility of pain treatment, which leaves millions of people to suffer needlessly from severe and often prolonged pain, raises questions whether they have adequately discharged this obligation.
In a report to the Human Rights Council, Nowak later specified that, in his expert opinion, “the de facto denial of access to pain relief, if it causes severe pain and suffering, constitutes cruel, inhuman or degrading treatment or punishment.”
Not every case where a person suffers from severe pain but has no access to appropriate treatment will constitute cruel, inhuman, or degrading treatment or punishment. Human Rights Watch believes that this will only be the case when the following conditions are met:
In such cases, states will be liable for failing to protect a person from cruel, inhuman, or degrading treatment.
Senegal ratified the International Covenant on Civil and Political Rights in 1978, and the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment in 1986.
The introduction of palliative care in Senegal, at major hospitals as well as in the community, is urgently needed to prevent the gross and unnecessary suffering of tens of thousands of people throughout the country. As a signatory to various international human rights treaties and the UN drug conventions, the government has an obligation to play a central role in making this happen. It should work closely with the Association Senegalaise de Soins Palliatif, the World Health Organization, the African Palliative Care Association, and other partners to develop and implement a palliative care strategy that ensures patients in both cities and rural areas have access to basic palliative care services. In designing and implementing such strategy, the authorities in Senegal can draw on the experiences of countries like Uganda and Rwanda.
Based on our research, a national palliative care strategy should contain the following central components:
Research for this report was conducted by Angela Chung, Social Justice Fellow in the Health and Human Rights Division of Human Rights Watch, with support from Diederik Lohman and Megan McLemore, senior researchers in the Health and Human Rights Division of Human Rights Watch; Clive Baldwin, Senior Legal Advisor at Human Rights Watch; and Joseph Amon, director of the Health and Human Rights Division of Human Rights Watch. Angela Chung wrote the report. It was reviewed by Diederik Lohman; Joseph Amon; Clive Baldwin; Rona Peligal, deputy director of the Africa Division of Human Rights Watch; Juliane Kippenberg, senior researcher in the Children’s Rights Division of Human Rights Watch; and Babatunde Olugboji, Deputy Program Director of Human Rights Watch.
Jennifer Pierre, associate in the Health and Human Rights Division at Human Rights Watch, provided invaluable assistance. Translation was provided by Danielle Seres and Peter Huvos. Production assistance was provided by Grace Choi, Kathy Mills, Jessie Graham, Jenny Catherall, and Fitzroy Hepkins.
We are deeply grateful to the many palliative care patients in Senegal who, despite being gravely ill, agreed to be interviewed for this report. Without them and their relatives, this manuscript would not have been possible. We are committed to using this report to try to make sure that others who develop life-threatening illness—and pain and other symptoms associated with it—will not have to endure the suffering many of these patients faced.
We are also greatly indebted to the many palliative care advocates, doctors, nurses, pharmacists, social workers and volunteers in Senegal and elsewhere who helped us conduct our research, understand our findings, and write this report. Their commitment to serving people at the most vulnerable time of their lives is both humbling and inspiring.
Things to do
Diagnosis: Alzheimer’s
Looking for a better way to detect the disease early
Alzheimer’s disease is an epidemic. It attacks the brain’s nerve cells, causing memory loss, behavioral changes, confusion, and deterioration of language skills. It affects more than 5 million Americans 65 and older, and that is expected to increase to 13.8 million by 2050 unless science finds a treatment. Alzheimer’s and other forms of dementia are projected to cost the nation $236 billion this year and the figure could reach $1 trillion by 2050, according to the Alzheimer’s Association.
At Boston University, dozens of researchers are looking for tests that could lead to early diagnosis and interventions to prevent or delay the disease, running clinical trials that may result in treatments and an eventual cure, working to understand genetic risk factors, and studying Alzheimer’s impact on caregivers.
The Boston University Alzheimer’s Disease Center, established in 1996, is one of 31 such centers nationwide funded by the National Institutes of Health and dedicated to conducting research into the disease, enhancing clinical care, and providing education.
In this special report, BU Today examines the work of five BU researchers.
When a patient arrives at the ER with a suspected heart attack, doctors run down a list of symptoms: unremitting chest pain, days of fatigue, indigestion. But cardiologists don’t stop there: they can order blood tests, an EKG, an echocardiogram. With all the information in hand, doctors can make a definitive diagnosis: heart attack, or no.
Physicians trying to diagnose dementia have far fewer tools at their disposal. “Diagnosing Alzheimer’s patients is a challenge,” says Wendy Qiu, a School of Medicine associate professor of psychiatry and pharmacology, and principal investigator in the Laboratory of Molecular Psychiatry in Aging. “Clinically we still depend on symptoms, so that sometimes we can be wrong.” Qiu’s goal: to help create quick, cheap, reliable tests that make early-stage Alzheimer’s as easy to diagnose as a heart attack.
“If you can’t diagnose it, you can’t identify people with the disease and get them into clinical trials, and that’s our best hope for finding a treatment,” says Neil Kowall, a MED professor of neurology and pathology and director of BU’s Alzheimer’s Disease Center, where Qiu is on the faculty. “How can you treat something you can’t even identify?”
One obstacle to easy diagnosis is something in our bodies called the blood-brain barrier, a sheen of tightly bound cells that separates the blood circulating through our body from the cerebrospinal fluid washing around our brain and spine. The blood-brain barrier allows water and some gases through, as well as molecules like glucose that are critical for brain function. But many molecules, including some that may be useful for diagnosing Alzheimer’s, get stuck on the brain side of the barrier, so never appear in a blood test.
“If you can’t diagnose it, you can’t identify people with the disease and get them into clinical trials, and that’s our best hope for finding a treatment,” says Neil Kowall. “How can you treat something you can’t even identify?”
One way around this problem is a lumbar puncture: a clinician slides a needle into a patient’s spinal column and takes a small sample of cerebrospinal fluid (CSF). Scientists then look for two Alzheimer’s biomarkers in the fluid: high levels of phosphorylated tau, a protein that sticks together in tangles, and low levels of amyloid beta-42, a protein fragment that clumps into plaques. (Scientists guess that when amyloid beta-42 deposits in the brain, less of it appears in the CSF.) These tests are fairly accurate, but scientists now use them mostly for research, not diagnosis. That’s because few patients are clamoring for a spinal tap.
“Patients are really reluctant to have a lumbar puncture. It’s painful,” says Qiu. “Especially at the early stage of Alzheimer’s disease, when they have minor memory complaints, they don’t want to have that.”
A PET (positron emission tomography) scan, which can detect beta-amyloid plaques, is painless but expensive: up to $18,000 per scan. “Considering that currently we have more than five million Alzheimer’s patients, and as the population ages, we’re going to have more, we just cannot afford to have these kind of scans,” says Qiu.
What Qiu—and everyone, really—wants is a simple, reliable blood test that will allow primary care doctors to screen for early markers of Alzheimer’s the way they measure cholesterol. But because of the blood-brain barrier problem, Qiu needs a proxy, something she can measure in the blood that reveals pathology in the brain. To find one, she took a closer look at how the body makes those sticky beta-amyloid plaques. Researchers know that the process begins with a larger molecule called amyloid precursor protein, or APP. Through a series of biochemical steps—some known, some not—the body chops APP into beta-amyloid.
“Most people in the field were focusing on how beta-amyloid is produced from APP,” says Qiu, whose work is funded by the National Institutes of Health and the Alzheimer’s Association. “But I was interested in how beta-amyloid is further degraded after it is formed.” That’s because if the beta-amyloid gets chopped into even smaller bits, it dissipates harmlessly, rather than clumping into neuron-choking plaques. After years of detective work, Qiu found that the enzyme that chops up beta-amyloid is the same one that degrades insulin. It’s called, aptly enough, insulin-degrading enzyme.
The brains of mice bred to develop Alzheimer’s. The mice who received saline injections (top) developed amyloid plaques, a hallmark of Alzheimer’s disease, seen here as brown spots. Mice who were given amylin injections (bottom) had far few fewer plaques, and also scored better on learning and memory tests. Photo courtesy of Wendy Qiu
Scientists have known for a long time that diabetes, which initially increases blood insulin levels before the pancreas falters, amplifies the risk of Alzheimer’s. Now Qiu thought she knew why: higher insulin in the blood uses up more insulin-degrading enzyme, so less is available for chopping beta-amyloid. Then the excess beta-amyloid forms Alzheimer’s plaques. It made sense, but when she tested the idea, it didn’t pan out. She was stumped. The hypothesis had seemed so perfect: what was going on?
Then she had an idea: amylin. Amylin, like insulin, is a hormone produced in the pancreas that regulates appetite and glucose. But amylin has one important difference from its better-known cousin: insulin barely crosses the blood-brain barrier, but amylin crosses with ease. Aha, thought Qiu, it all makes sense: higher amylin in the brain equals higher beta-amyloid, which leads to Alzheimer’s. Amylin was also known to aggregate in the brains of Alzheimer’s patients, forming its own toxic plaques; now it seemed like an all-around troublemaker. “We thought higher amylin must be bad for Alzheimer’s disease,” Qiu says. “We just wanted to prove it.”
So Qiu and colleague Haihao Zhu, a research scientist in the Qiu lab, tested the hypothesis, using special mice bred to develop Alzheimer’s. The scientists gave half the mice injections of amylin every day for 10 weeks, the other half—the control group—got saline injections. After a few months, the control mice developed Alzheimer’s as expected, their brains smattered with amyloid plaques. But the amylin mice, the ones Qiu expected to develop much more severe Alzheimer’s, had far fewer plaques.
“It completely surprised us. It’s the opposite of what we thought,” she says. The results, published in Molecular Psychiatry in 2014, showed that amylin not only reduced amyloid plaques, it also made the Alzheimer’s mice smarter, improving their learning and memory. Somehow, injections of amylin moved beta-amyloid out of the brain and into the bloodstream, where it does less harm and can be detected. Work that at first seemed a dead end now offers hope for a diagnostic blood test.
“It’s only the unexpected things that push you in the right direction. That’s where progress comes,” says Kowall. “When a scientist is smart, careful, and keeps her eyes open, that’s when the breakthroughs happen.”
“I think the goal of medicine is to reduce the pain of mankind. I strongly believe that,” says Qiu. “We can do almost nothing for Alzheimer’s patients right now. I want to see what we can do for them.”
Qiu is now preparing a pilot study to test amylin in humans. She’s using a synthetic version, called pramlintide, that scientists developed a decade ago to treat diabetes. The synthetic version, which is approved by the Food and Drug Administration, reduces appetite and helps manage glucose, but also has a slightly altered structure that prevents it from aggregating.
“It makes everything easier that it’s already FDA-approved and it’s already in the clinic,” says Qiu. She adds, however, that because the patent on synthetic amylin will expire in 2019, pharmaceutical companies have little interest in supporting research such as hers, which studies the effects of a repurposed drug.
But Kowall says that the benefits of using a drug that’s already on the market may outweigh the drawbacks. “The fact that it’s FDA-approved gives it a big leg up,” he says, and Qiu’s progress with synthetic amylin may lead pharmaceutical companies to pursue similar lines of research. “Pramlintide may just be the first generation,” he says. “It may lead to other drugs that work differently, or better.”
Ultimately, Qiu hopes that her work with amylin will lead not only to a simple blood screen, but also to a treatment. Although that’s still years away, she’s cautiously optimistic. “I think the goal of medicine is to reduce the pain of mankind. I strongly believe that,” she says. “We can do almost nothing for Alzheimer’s patients right now. I want to see what we can do for them.”
November has been designated as National Alzheimer’s Disease Awareness Month.
Read the other stories in our “Unraveling Alzheimer’s Disease” series here.
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