© 2019 - International Centre for Investigative Reporting
REPORT: Nigeria’s polio survivors not out of the woods yet, but the system hardly cares
AS A CHILD growing up in Sango-Otta, Ogun State, Adeyemi Idowu loved to play soccer with friends. Like others in his age group, he also delighted in rolling tyres with a stick in his right hand as he scampered through the neighbourhood. But he soon had to bid farewell to that life of playful adventure as a result of poliomyelitis.
Commonly known by its abbreviation, polio, the crippling and infectious disease causes muscles to weaken. In the majority of people with the poliovirus, there are either minor symptoms or no symptoms at all. But this was not the case for Idowu, who before his fourth birthday suffered paralysis — a rare case of polio infection.
It started as a headache for which he used a pain relief medicine known as Phensic. He relaxed, went out in the evening to play with friends, and returned to his mom’s grocery shop where he dozed off. After nightfall, she nudged him to wake up so they could go into the house. He tried standing up twice but fell back each time. The third time, his legs would not budge even slightly. Thinking he was just wobbly from sleep, she lifted and carried him to his room. By the next morning, Idowu had lost his ability to move anything but his eyes. After receiving treatment, he regained control of his upper body. His legs, which had grown significantly thinner, could not respond to treatment.
“I woke up one morning and the entire story of my life just changed,” he tries to summarise the experience.
With tremendous difficulty and rare determination, Idowu has since gone on to graduate from primary school, secondary school, university, and the Nigerian Law School (NLS). He was called to the bar last November and is now with the National Youth Service Corps. But it is not all rosy for the young lawyer as life with polio can be an unending struggle — no thanks to a condition known as the Post-Polio Syndrome (PPS).
Polio often affects children aged under five years and only causes irreversible paralysis in one out of 200 cases of infection. The World Health Organisation notes that, with only 33 reported incidents in 2018, “wild poliovirus cases have decreased by over 99 per cent since 1988”, owing to immunisation efforts stepped up by various international NGOs.
From contributing to over 50 per cent of all polio cases worldwide in 2012, Nigeria was declared last year to no longer be polio-endemic having gone over three years without incident. But one area not much attention has gone to is the medical and social needs of survivors of the disease many of whom are disabled and sometimes suffer from a secondary illness. Post-Polio Syndrome surfaces many years after the initial attack in the form of muscle weakness, severe fatigue, and pain in the limbs due to degenerating motor nerve cells.
There are about 11 million polio survivors in Nigeria, according to an estimate by the Disability Rights Advocacy Group (DRAC), and as many as 85 per cent could have symptoms of PPS. The problem is many do not know, including the sufferers themselves.
Post-Polio Syndrome. What’s that?
Post-Polio Syndrome affects different people in different ways. It might affect parts of the body originally infected by the poliovirus or disturb entirely new areas. Some polio survivors with PPS suddenly find it difficult climbing stairs, some have difficulty walking, and for others, the problem is unusual fatigue.
Idowu started noticing severe weakness in his hands, especially the right one when he got admitted into the University of Ibadan. He thinks this might be as a result of the pressure of taking notes and writing ceaselessly for several hours during examinations. He had no idea what PPS was until he visited the university clinic in his second year following advice of one of his lecturers, Bukola Akinbola.
“I started taking a few measures to correct it. I had to change some of the enhancements I was using,” he recalls. “For instance, when I got to the UI, I was using wooden crutches and I had to change them to aluminium ones.”
“A fii suru ni matter yen [one just has to be patient],” he chuckles sadly, referring to the physiotherapy. The necessary treatment just wasn’t affordable for the average person, let alone a student.
Explaining why awareness is still poor and many people suffering from PPS do not know, Roseline Ezenagu, executive director of Eccentric Support Initiative, says efforts have not been made to throw light on the condition using indigenous languages.
“People know about polio because the awareness is there already, but little or nothing is known about PPS,” she stresses.
Asking Google for help
Far too many institutions in Nigeria, including schools, are still not disability-inclusive — despite there being at least 27 million Nigerians (13.5 per cent) with various forms of impairment. And this is part of what makes it difficult to address PPS.
“Inclusion is even a challenge generally,” Idowu observes. “So if you’re even bringing up a subject as unpopular as Post Polio Syndrome, it is like you are saying something out of the ordinary.”
When he visited the clinic at the Nigerian Law School, Abuja, last year to get a medical report so he could be given more time to answer questions during the bar exams, Idowu was shocked to discover the Chief Medical Director had no idea what PPS meant and, in fact, had to Google it. He started by asking questions that betrayed his unawareness before briefly entering his office.
“When he stepped out he was still holding the gadget,” says Idowu. “From the bright screen, I could see the responses he got from Google and the particular page he clicked on.” He adds that this could be because physiotherapy isn’t the doctor’s speciality.
Last October, Abuja-based Cedarcrest Hospitals established a polio centre out of concern about “the near absence of medical care of polio survivors”. The medical director, Felix Ogedegbe, pointed out that though non-governmental organisations and the government have worked tremendously to make Nigeria polio-free, attention is not being paid to the disease’s late effects.
“Polio survivors are suffering from treatable medical complications and preventable secondary deterioration, while the medical community in general, unaware of recent advances in polio care, tell them nothing can be done,” he said.
Lack of awareness among doctors is not the only problem though. There are also not enough specialists in the country to adequately cater to the needs of polio survivors. According to the World Confederation of Physical Therapy, Nigeria has less than one physiotherapist for every 10,000 person — one of the lowest worldwide.
The Nigeria Society of Physiotherapists has also revealed that 50 per cent of registered physiotherapists in the country practise abroad, only 1000 are gainfully employed, and many teaching hospitals and federal medical centres have less than enough specialists.
Umaru Muhammad Badaru, a physiotherapist and lecturer at Bayero University Kano, confirmed to The ICIR that though their number is growing, there are still not enough professionals.
From discomfort to mockery
For Idowu, getting the medical report in July did not bring an end to his troubles. The NLS management did not grant his request for extra time until August 20, by which time he had already written three out of six papers. He could not get an allotted extra 10 minutes in the MCQ examination, where he most needed it, and an extra 30 minutes in the Property Law and Criminal Litigation papers.
The Director of Academics, Sam Osamolu, was in the hall on the first examination day, so he asked him if he had notified the chief invigilator about his request. Osamolu, he remembers, said there was nothing he could do. “And there was something about these guys’ expression that showed they really didn’t believe you and it was very frustrating,” he adds with distaste.
The letter granting extra time was eventually obtained after relentless lobbying from the school librarian and Idowu’s group mentor. “It was just a lot of stress and unnecessary attention over something that could just be determined medically. I-I-,” he stutters hurtfully, “I couldn’t have forged a medical report.”
During one of the days he was granted extra time, he suffered humiliation at the hands of an invigilator who could not understand why he deserved special consideration. “Ki lo de ti won fun ni extra time, se oju e fo ni? [Why was he granted extra time when he isn’t blind?]” she had asked in Yoruba while looking scornfully in his direction.
“The point is they only pay attention to you when you have screamed and screamed and they just want to avoid getting embarrassed, or you are lucky like me to have somebody with a seat at the table who could push one or two things on your behalf,” Idowu says.
“The fact that knowledge [of Post-Polio Syndrome] is not popular, the fact that people don’t know about these things, the fact that people who are affected by this condition do not even know, and the fact that for the few who know accessing medical care is challenging; it is a lot to bear.”
Health insurance for polio survivors
According to the World Health Organisation, people with disability are, more often than not, among “the poorest of the poor”. For this reason, a clinical physiotherapist based in Oyo state, who asked not to be named because he is a government employee, advocates that diseases affecting them should be included in the National Health Insurance Scheme (NHIS). The ICIR observed that the scheme presently does not group physically challenged people among vulnerable groups for which it has designed programmes.
“Definitely, PPS and other ailments affecting people with disability should be included in the NHIS. Treatments should be highly subsidised. That is the proper thing for government to do,” the physiotherapist says.
He recommends that professionals inculcate the habit of reaching out to polio survivors to assure them they can get help because many of them have developed a thick skin and seldom ask for assistance due to social conditioning. Hospitals, the health professional says, should also fast-track and centralise access to health care for persons with disability so as not to wear them out.
It is his view that the National Council for Persons with Disability provided for under the Disability Rights Act passed in 2019 should be set up as soon as possible to advance the interests of vulnerable persons.
“If we must solve the problems of people with disability, everybody must be answerable. We must eliminate all forms of abuse and treat people with disability with dignity,” he concludes reflectively.