KIGALI, Rwanda — As the dirt road gives way to more dirt road, the path gets narrower and steeper throughout Burema village on the outskirts of Kigali, Rwanda. A family of six lives in a small, two-room house, looking out over the lush greenery of the ridge below, but the outlook for the family wasn’t always as bright. Marie-Jeanne, a 32-year old mother of four boys, is unemployed and while her husband, Jean-Baptiste, aged 40, is able to provide some form of income, a stable salary is often jeopardized by struggles with his mental health.
“There are times when he gets a job, [but] falls sick and fails to do it, yet I am also not working. As a result, we fail to provide even food for our children, so life is really not good for us,” Marie-Jeanne explained, sitting in her living room with the youngest child strapped to her back.
Jean-Baptiste has schizophrenia. According to the World Health Organization, 20 million people worldwide are affected by the chronic mental illness that causes distortion in thinking, hallucinations, and delusions. When these symptoms occur, he often disappears for days, only to be found by the police and admitted to Caraes Ndera Neuropsychiatric Hospital — the national referral hospital for mental illness — for a month at a time.
Around 12% of people in sub-Saharan Africa live with a mental illness such as depression, anxiety, bipolar, eating disorders, schizophrenia, and alcohol and drug use disorders, a figure that’s likely to be higher following COVID-19 and the subsequent levels of depression, harmful alcohol and drug use, and self-harm or suicidal behaviour. This has led to the creation of a new campaign by WHO and partners, which calls for a massive scale-up in mental health investment.
In Rwanda, the percentage of people with a mental illness is thought to be higher than the regional average and, according to the experts Devex spoke to, the 1994 genocide against the Tutsi may be a major contributing factor. According to research, 29% of people experience post-traumatic stress disorders in the country.
According to Dr. Bizoza Rutakayire, a psychiatrist and a senior consultant in psychiatry at Caraes Ndera, the psychotrauma of the genocide is connected to the manifestation of certain mental disorders. During the national period of commemoration, which begins in April each year, a large number of people experience PTSD symptoms and generalized anxiety disorders with panic attacks, he explained.
At Caraes Ndera — which prior to COVID-19 saw over 76 outpatients a day and had approximately 110 inpatients — many of the hospitalized patients have been diagnosed with schizophrenia. What may initially start off as PTSD could be a sign of a more severe mental and psychotic disorder, said Rutakayire, adding that while some patients may have a hereditary predisposition for schizophrenia, trauma can trigger its expression.
Given the number of families like Jean-Baptiste’s affected by mental illnesses, since the genocide, Rwanda has taken steps to make the provision of mental health services a priority. While the issue of mental health globally is beginning to receive more attention, more can be done, according to Dr. Yvonne Kayiteshonga, mental health division manager of the Rwanda Biomedical Center.
“This is a global situation. Mental health seems to be neglected. We have poor research, we have a shortage of human resources,” she said, adding that mental health should be given the same attention as physical health.
While mental health and well-being features within the Sustainable Development Goals, fewer than 1 in 50 people with severe mental illnesses in low- and middle-income countries receive evidence-based treatment.
Attempting to change this, a year after the genocide, the Rwandan government developed a mental health policy, making it among the first countries in sub-Saharan Africa to have one. And in 2018, Rwanda’s updated strategic plan for its health sector set ambitious new targets for expanding mental health care services within the community, including through decentralization and integration into primary health care.
A five-year collaboration between the Rwanda Ministry of Health and the Johnson & Johnson Family of Companies is building upon the work the government has done thus far in improving mental health care and strengthening efforts to develop a model of affordable quality care.
The collaboration — which launched in 2018 — takes a three-pronged approach and, if successful, the learnings could serve as a proof of concept model for other countries in the region, and potentially around the world, said Dr. Kivwanga Mwaniki, global execution leader of mental health at Johnson & Johnson.
The three-pronged approach:
1) Understanding the burden of mental disorders
According to Kayiteshonga, prior to 2018, there was limited research studying the prevalence of mental disorders in few areas and specific categories of the Rwandan population, she said. Yet “good policies and good health strategies are those based on evidence,” Kayiteshonga explained.
“Good policies and good health strategies are those based on evidence.”
This is why the first step of the partnership was to determine the prevalence of common mental health disorders, substance abuse, and suicidal ideation in Rwanda through a national household-level survey. The results, which should one released later this year, will inform mental health policy decisions and the allocation of resources, Kayiteshonga said.
2) Decentralization of care
There’s also a lack of psychiatrists in the country, with 0.06 per 100,000 people. According to Rutakayire, there are 13 psychiatrists in Rwanda.
Instead, many turn to traditional healers and religious leaders, Rutakayire explained. With more education around mental health he believes the number of people seeking professional medical care would increase, but the capacity to accurately diagnose them and refer them for care needs to be there, he said.
Care should be available not just from psychiatrists, but at a local level, Mwaniki said. “If you have walked anywhere in Africa as a patient, not just with mental illness, but with any kind of illness, getting to your facility of care is a huge journey,” he said.
For Jean-Baptiste, Caraes Ndera hospital is over an hour’s drive away and with no access to a car, the journey becomes even longer. “So the first piece is decentralization,” Mwaniki explained. “Can we bring care to local health centers where we reduce that kind of burden on the patient?”
The government has rolled out a new remote training service platform, or RTS, with support from Johnson & Johnson, that is enabling front-line health care workers to refresh their knowledge on how to recognize mental health disorders. The training — which is free and delivered through a voice recording via a series of phone calls — has so far reached approximately 60,000 community health workers and was recently expanded, at the request of the government, to deliver training on how to tackle COVID-19 as well as related mental health issues.
Prosper Ngendahayo, a teacher and community health worker in the Karama sector of Kicukiro district in Kigali, has participated in RTS.
“Through these trainings, our understanding on trauma deepened,” said Ngendahayo, explaining that the calls were not time-consuming. Following the delivery of information, the recording asks questions to test your knowledge. These might include whether or not a specific illness could be caused by witchcraft or is contagious, he added, which can be a common misconception.
Training at the local level can raise awareness in a community as a whole and help to destigmatize mental illness, said Ngendahayo, speaking from the school he works in. “We first of all sit down with people who are experiencing symptoms of mental illness and hold constructive conversations. Secondly, we encourage people around them to treat them with respect and acceptance, as the contrary worsens their illness.”
“We encourage people around [people experiencing mental illness symptoms] to treat them with respect and acceptance, as the contrary worsens their illness.”
Aside from RTS, the Johnson & Johnson Foundation is working in collaboration with other organizations to provide training to nurses around diagnostics, treatment, and referral of persons living with mental illness.
Together, the two types of training are intended to increase the number of health care professionals able to educate, diagnose, treat, and refer patients, like Jean-Baptiste, at the community level.
“Last year, as a result of talking about mental health in the community, we referred three people in our village to community health centers for treatment,” said Ngendahayo, and a further 10 received the help they needed from the health care worker.
3) Tackling access to affordable, quality medicines
Once the scale of the problem is understood — with access to data — and there are health workers in place to address it — thanks to training — only then can patients receive the treatment they need.
Yet Rutakayire said there are often stock outs of psychotropic drugs in district hospitals, limiting the means of treatment. And in the past, new medicines have taken years to become available in low-income countries such as Rwanda, Mwaniki said.
To tackle this, Johnson & Johnson is working to make its oral and long-acting injectable, or LAI, medications for the treatment of schizophrenia available in Rwanda. In addition, they are conducting a small clinical study to begin to understand the health, economic, and social value of a one-month and three-month LAI in a resource-limited setting.
A patient in the pilot clinical study, Jean-Baptiste has begun receiving an LAI antipsychotic. Rather than taking two pills twice a day, he now receives a single injection, once every three months. According to Rutakayire, LAIs may help to delay relapses and patients may experience fewer neurological side effects than can be experienced with first-generation medication.
“Those were leading some patients to stop medication and after, they could experience relapses. But the use of more and more neuroleptics of the second generation will prevent all those side effects and give better comfort of life to our patients,” he said.
Marie-Jeanne said that while she feels it is too early to get her hopes up about the future, so far the injections have helped her husband. “Before, when he used to take pills, he would skip some days and I would not find out. As a result, he would repeatedly fall sick,” she said.
Mwaniki said Johnson & Johnson plans to begin a larger, open-label clinical study of LAIs in Rwanda in early 2021. The goal is to collect data that can help inform the government’s efforts to treat patients with schizophrenia with newer, innovative medicines while simultaneously building in-country, clinical research capabilities.
The way forward
Prior to the pandemic, it had already been predicted that by 2030, mental health illnesses — depression in particular — will be ranked No. 1 in the global burden of disease and that it will cost $16 trillion. The more that is done now to increase access to services and provide care for people like Jean-Baptiste the better.
“Good talk is starting to happen, but I think we’re still at a place where we have not yet broken the silence and even where we have broken the silence, we have done it by talking. It's time to break it by action,” Mwaniki said. “And the COVID-19 pandemic has made this all the more urgent.”
The creation of an integrated model of quality mental health care that is affordable and scalable in an LMIC could be a game-changer in doing that.
By providing evidence-based interventions and filling data gaps, other countries will have important tools they need to address mental health care in their countries. Mwaniki believes partnership is the key to achieving this.
“There's a reason why partnership is a central theme and a central goal in the SDG agenda — they can be difficult to put together, but they work, and that's why they are gold,” he said.
Less than two years into the collaboration, Mwaniki said Johnson & Johnson is already thinking about how the efforts in Rwanda can be scaled across the continent.
“Building on Rwanda’s example, globally, we must now work within countries, within regions, to break the silence around mental health and start providing patients with the care they deserve. We need more than just talk; we need concrete action, multicountry action, multipartner action that brings tremendous change,” he said.