The voice of affected people can contribute to priority-setting in NTD research

NTD = Neglected Tropical Diseases

People with disabilities are often not able to have a say in decisions that are made that affect them, including in the way that international development is organised, and research is carried out. CBM is committed to challenging this situation, believing that people affected by such decisions should have a voice in them, and that they hold a unique form of expertise that can contribute to excellence in research and programming. 

In order to facilitate participation in the process of deciding on research priorities for the future, Mr. Muhammad Jidda Assakin from Nigeria, who has lived with lymphatic filariasis for over 20 years, was invited to attend the annual Coalition for Operational Research on Neglected Tropical Diseases (COR-NTD) conference in Baltimore, US. He spoke powerfully about the journey he has taken while seeking the support he needed, how his disability had affected him, and what his needs and priorities were. In this blog, written with Mr Jidda, we have tried to capture these messages that made an important contribution to the setting of the future research priorities for mental health, stigma and NTDs at the meeting.

Mr. Jidda was born in Borno State in 1959 in northern Nigeria to a family of nomadic cattle-rearers – a member of the Shuwa Arab tribe. He started school in Maiduguri before moving to Kano for post-primary schooling. After graduating in Public Administration and Rural and Community Development (postgraduate diploma), he joined the Nigeria Customs Service, rising through the ranks until he reached the senior rank of Superintendent of Customs.

In 1990, he went to see a doctor in Port Harcourt as he had a swelling of his buttocks, and was diagnosed as having TB and given a long course of antibiotics. This was ineffective, and he noted that his right leg was also swelling. This was eventually diagnosed as having lymphatic filariasis by visiting international doctors working with Doctors Without Borders. After being diagnosed, he was told that there was nothing that could be done for him as there was no effective treatment available. 

His leg continued to swell – a process commonly called elephantiasis. Many of his friends told him that this was a spiritual problem, and that medicine could not help him. People thought that he was cursed by someone who was not happy with him because of his job as a customs officer. Despite seeking treatment from both traditional healers (‘babalao’), and through Islamic healers, he saw not benefit, and in fact it was a very expensive process.

When his leg became very large, he travelled long distances to specialist hospitals, was given repeated skin graft surgery to reduce the size of the swelling. He estimates that he spent more than 10 million Naira (over $50,000 USD), but his employers only supported a very small amount of this, saying that the President would have to approve larger amounts. He estimates that he spent more money traveling to Abuja, the capital of Nigeria, trying to get help, than he gained for his efforts.

The situation made him feel very hopeless, and he felt very low, not finding any reason to live, and gradually withdrew from the world.  He rarely left the house, because when he went out, people would run away from him. People did not want to be near him, fearing infection. He has been married 5 times, and on four occasions, his wives left him because of his disability. His wife now is supportive, helps him a lot, and they have two children. He never spoke to anyone about his low mood and hopelessness, and he did not consider going to seek psychiatric help, as this would label him as ‘mad’, something that was even worse than the situation he was already in.

Although the disease caused occasional periods of fever, and he found difficulty with walking, he was still able to carry out his work. Despite this, the Customs Service decided that he should retire early, a decision that he did not agree with.  This has had a severe impact on his ability to have a sustainable income. In addition, the treatment that he must pay for costs more than his small pension, and he now lives at the mercy of friends and family. 

At the conference, he was able to share what he considered to be the changes that would make the most difference to his life, and to promoting better outcomes for others affected by NTDs.

Key messages:

• The delays in getting help due to lack of good local medical expertise and care caused undue suffering and expense. Obtaining good treatment and support is still a major challenge. Better access to medical treatment would make his life better and would reduce long-term disability.
• There are still many people with conditions like his, who don’t seek medical help. This is partly due to lack of local services, and partly due to their belief that these are spiritual problems. There is need for awareness-raising, and Mr. Jidda feels that as an affected person, he would be a good person to take these messages to communities around him.
• There was no offer of support for his emotional distress throughout his period of disability. Emotional support should be available, but needs to be in a non-stigmatised way and not associated with ‘psychiatry’ otherwise people will not want to be use it.
• The fact that he was forced to retire early, and cannot get a job, as well as the ongoing high costs of managing the condition, make finding sufficient money to support his family very hard. He would like support for this, as well as for livelihood opportunities through small business development to be offered to disabled people like him.

This blog originally appeared on the NTD Support Center website.