What did you observe regarding compliance with mental health treatment?
The main barrier to compliance was the availability of the needed medicine. For example, family members would come to a clinic or hospital for epilepsy medication. They would get medicine to treat the patient for a few months. When they ran out of medication, they would come back for more, but the pharmacy and hospital would have run out. Also, a number of medications are sold on the black market, and patients who buy them can end up with medications that are expired or of the incorrect dosage.
What can be done to make more medications available?
The solutions include advocacy and raising awareness. There is a dearth of data about mental illness prevalence. The Liberian Ministry of Health and Social Welfare faces serious challenges when it makes decisions about allocating scarce resources, and these decisions are complicated by the lack of data on disease burden. If you don’t know the prevalence of epilepsy, it is difficult to determine how much medication needs to be ordered for the country. If clinicians don’t know how to recognize depression, they can’t estimate the number of patients needing treatment.
Better epidemiologic data are crucial to ensuring evidence-based decisions. Some helpful data exist; for example, multiple studies of PTSD (posttraumatic stress disorder) have been conducted that involve thousands of participants in Liberia. However, for other conditions such as epilepsy and schizophrenia, very little epidemiologic information is available. We hope to work with other organizations to determine the prevalence of the most debilitating mental illnesses and then raise awareness about the numbers of individuals affected. Through this process, we can work with the government to get treatment to the people who need it.
What are some of the conditions that people had in the places you visited?
Of approximately 20,000 clinic and hospital visits related to neuropsychiatric conditions in 2010, 45% were for epilepsy or seizure disorders, 15% were for schizophrenia, 14% for anxiety and psychosomatic disorders, and 9% were for depression and bipolar disorder. These numbers are just the tip of the iceberg. The actual burden of depression is likely much greater, as most people with depression don’t seek help. And most clinicians don’t know how to screen for it.
Substance abuse is a key concern, and the Carter Center plans to work with the Liberian government to put tools and resources in place to help address this problem.
The Ministry of Health and Social Welfare in Liberia intends to address five major conditions through a national mental health policy: epilepsy, psychosis, schizophrenia, substance abuse, and PTSD. A major issue with PTSD is the difference between the amount of attention it gets on an international scale and the attention that is given to other conditions. The majority of research in Liberia has focused on PTSD, but epilepsy, depression, psychosis, and substance abuse individually all contribute to a much greater portion of neuropsychiatric disability.
Why do you think there was so much epilepsy?
That is a good question. During my visit, we went to a remote area in the center of the country where roads are impassable for most of the year. In that area, we found a high prevalence of epilepsy and many cases in multiple family members. More research is needed to identify why this large burden of epilepsy affects parts of the country. This will help us find the best way to treat it. Is it a genetic condition, does it result from environmental exposure – or a combination? Many of the patients with epilepsy had cerebral malaria as children. Improving infectious disease treatment may be key to reducing later neuropsychiatric sequelae.
We were interested in the local understandings of epilepsy. We found that many people thought it was contagious. This led to health care workers’ stigmatizing patients and refusing them treatment. One belief is that people can transmit epilepsy from one person to another through saliva during a seizure. They compared it with the way rabies is transmitted from one animal to another.
We saw many persons with epilepsy who had significant burns, scars, and poorly healing sores. We found out that if someone with epilepsy falls into a fire, people do not pull them out because they are afraid of contracting epilepsy. Similarly, there are cases of persons drowning during seizures because people are afraid to pull them out of the water. I would argue that none of these is an unchangeable cultural belief. They represent fundamental human attempts to understand experience. These behaviors and stigmatization can be changed through education, combined with improved access to neuropsychiatric care.