The Externalities of Advocacy: The High Cost of Standing Up for Patients' Dignity in Senegal

Background and context: In Senegal, pediatric oncology patients arrive at the hospital at advanced stages of disease. Their large tumors, as well as the side effects of chemotherapy make children experience intense pain. In this low-resource setting, morphine supply was quite irregular. Doctors don´t prescribe morphine due to shortages; but few prescriptions also lead to limited orders. A vicious circle with only 1 victim: the patient. Hearing children in pain was agonizing for everyone: patients, caregivers and healthcare practitioners. Aim: This advocacy narrative illustrates how the fight for access to morphine in pediatric oncology has led to both positive and negative externalities. We will highlight ways in which this fight for morphine has provoked political tensions moving the issue forward, but has also affected the careers of health workers involved. Strategy/Tactics: Morphine is a cheap drug, yet it is extremely regulated by international laws. It takes political will to influence national morphine orders. This advocacy strategy was built on raising awareness and setting morphine shortage on the political agenda. Not providing morphine in oncology goes against international standards of care. But most importantly, letting patients suffer without “existing” relief is a breach of basic human right to live - and also die - in dignity. Program/Policy process: Conversations began within the pediatric oncology department. Focus groups highlighted caregivers' feelings of powerlessness before their suffering child. Interviews with key informants (doctor and nurses) were instrumental to a widely diffused Human Rights Watch report exploring the medical and political causes to morphine supply shortages, as well as its psychological repercussions on patient care. A BBC documentary was broadcasted soon after. Subsequently, meetings were held between the Ministry of Health, the National Supply Pharmacy and leading local oncologists. Outcomes: Morphine orders were multiplied by 10, leading to much improved pain management for patients. However, Senegal was portrayed negatively on the international scenes, much to the Health Minister´s dismay. The consequences were incurred by the health workers who contributed to the international publications/reports. What was learned: Health practices can inform policy just like policy can inform health practices. It is a cyclical process. Creating advocacy coalitions and rallying the help of the international community are effective strategies. However, in the political arena, health workers need more than commitment to human rights and quality care. Even in democratic republics, systems can penalise outspoken activists. We have learned that health care practitioners (especially working in public settings) who wish improvement for their patients must learn to be tactical and diplomatic. International partners will return to their home countries, but local actors will pay the high cost of advocacy.