Eight years after the Lagos State Special People’s Law was signed, guaranteeing people living with disabilities free healthcare, government-owned health facilities still claim ignorance, thereby jeopardising the wellbeing of these special people. Dorcas Egede reports.
Lagos State-born, Abiola Rahamon, 37 is a Paralympics medalist, who has represented Lagos and Delta states in Table Tennis at national competitions, and made the National Team once, to represent Nigeria at the All African Games in Algeria. But today, this champion is battling with blood sucking and life threatening multiple fibroids and needs to undergo a surgery as soon as possible.
Unlike many Nigerian women out there who are afraid of surgery and would rather resort to all sorts of unorthodox options to shrink the fibroids, Rahamon is ready to go under the knife to have her fibroids removed. She however lacks the financial capacity to foot the bills. The only family she has, her mother, is a petty trader. She doesn’t make enough to afford a surgery for her daughter.
Her search for financial assistance got the attention of Ngozichukuwuka Uri, lead volunteer at Empathy Driven Women International Initiative – a non-governmental organisation that works “with women with disabilities.”
According to Uri, she has written several letters to get the attention of the CMD at Ayinke Hospital, and weeks after, nothing came out of it. “It will be great you did this story because this lady is on wheel chair, she has multiple sclerosis. She is a 5 time tennis champion. Now, she has fibroids.”
According to Rahamon, she was admitted on the 31st of July, 2019, after some tests revealed that her blood level was dangerously low and she had to be urgently transfused. The low blood level was occasioned by multiple fibroids which caused her to bleed heavily during her menstrual cycle, making her use up to three packs of sanitary pads.
“When I got here, I was asked to do some tests. They now said my blood level is low and they must admit me. They put me on admission and said I would have to be transfused with blood. I wanted to go home, but the doctor insisted that I couldn’t with my blood level so low. She wrote an emergency note on my card that I should go and collect blood from the lab, then she wrote some tests for me to do. That’s how I got admitted.
“After the tests, one of the facilitators came and collected my samples, took it to the lab and they brought blood from the lab. But after giving me two pints of blood, they stopped giving me, saying I had not donated. The doctor still wrote that this was an emergency and that I will donate. Usually, when you want to get blood transfusion, you have to bring a donor; but if it’s an emergency, they will allow you get the transfusion before bringing donors.
“During the weekend when the doctor was not around, they stopped giving me blood. The doctor had told them to give me four pints. Later the woman (facilitator) came back to say that I have not brought the donors and that they’re disturbing her in the lab. She said I would have to pay N7,000 for the screening of each pint. So, we paid N28,000 for four pints.
“Later that day, I’d slept when the third pint was released, then the fourth. But they insisted that I must bring a donor before I could be discharged. The doctor prescribed some drugs for me and suggested I did a full blood count test, while the senior consultant in my unit told me he would advise surgery, if I had money, so that the blood that had been transfused doesn’t waste away during my next period.”
So now, she faces the challenge of raising money for the surgery. But then, there is a provision of the Lagos State Special People’s Law, 2011, which states that persons living with disabilities should have free healthcare.
To this effect, Rahamon went to Ayinke Hospital at the Lagos University Teaching Hospital (LASUTH) with the hope of taking advantage of the proviso. But to her disappointment, she had to pay for everything, from patient’s card to seeing a doctor, blood test, scan, pints of blood. Her frustration heightened when she was made to present donors and was refused transfusion until she was able to produce two donors.
“Madam Uri has tried a lot for me. She has been a backbone; she has been there for me financially and in every way.”
Passion for sports, dashed hopes
With tear beads glistering in Rahamon’s eyes seconds before making their free course down her cheeks, she told of her passion for sports and many dashed hopes. “I play table tennis. I have been to National Sports Festival. I once made the Nigerian Paralympics team, but was later dropped for financial constraints, according to the people there. In special sports, we are multi-talents. You can do another sport apart from table tennis. So, I was told that because of my class (lower class) of disability, I was best fit to participate in short put and discus at the Commonwealth Games.
“So, I trained for it and made the national team. We were camped in Ibadan in 2010. I came second during the trials. Three of us who came in the first, second and third positions were invited to the camp, but after some time, after submitting all our travel particulars, they now told us that the government did not release funds, and that only one person would be taken. The person that came first was chosen.
“Even in table tennis, they don’t take lower class disability (disability relating to spinal cord injury) like mine. I have passion for sports. I train every day if there’s a tournament, but if there’s no tournament, I train three times a week because of the distance of the National Stadium from where I stay.”
Rahamon also worked with the Delta State Sports Commission during the administration of Governor James Ibori. “The governor said then that the Delta State government would employ anybody that won a medal at the National Sports Festival held in Abuja in 2004, and I won a bronze. I also won a silver medal in the 2006 Gateway Games. As a result, I was employed by the Delta State Sports Commission based in Asaba between 2005 and 2010.
“In 2005, we were camped in Asaba for preparation toward the 2006 All African Games in Algeria, but after some time, they said Algeria removed our game, which was Table Tennis. I then had to leave the camp.
“Later, my coach (he’s late now) issued me a query saying that I wasn’t taking my table tennis training seriously. This was because I started attending training in short put toward the Commonwealth Games. As a result of the query, my salary was stopped.”
By 2010, her mother insisted she returned to Lagos because she was wary of her frequent travels, especially after she was involved in a road accident and was the only surviving passenger.
Asked what keeps her going, Rahamon said, “It is God’s doing, and the trainings.”
And on lessons from her disability, she said, “My disability has taught me to be self-disciplined. If you have self-discipline, you can go far in life.”
Uri who runs the Empathy Driven Women International Initiative has been at the forefront of the fight for Rahamon. According to her, Rahamon is “very strong, very resilient, and has a fantastic spirit.” When she first spoke to this reporter, her frustration at the injustice she believed was being done to Rahamon was strong.
“When she was admitted at Ayinke, they started transfusing her. One pint of blood is 7,000 and we paid N28,000 because she needed four pints. They gave her two pints of blood and said they would not give her again until she brought a donor. Apparently there is a very punitive law in that place, you pay 7,000 for a pint of blood, they give you the blood, but you have to go and look for a donor to replace that blood. They call it replacement. It’s scandalous.
“So, after she took the two pints, they told us that we have to bring donors. I went to donate and called some other people to donate. Now, I couldn’t donate because they said that once you’re a woman and over 50 you can’t donate. I didn’t know that.”
According to Uri, up to five other persons who came to donate blood for her were turned back either because they didn’t have ID card or they weren’t good matches. “And to donate the blood is not even easy because you have to sit for hours. Then they will come and address you, send you to go and do some tests before anything. So, it takes the whole day to donate. Tell me, how many people will agree to go through such to donate. It’s punitive.”
After begging to buy blood from elsewhere or directly from the bank to no avail, they eventually agreed that they paid N7,500 each for the remaining two pints of blood. “We have the receipts. But why didn’t they ask us to do this earlier? Why did they keep us for extra two weeks before asking us to pay N7500? Well, I paid the N15,000. This is apart from the initial N28,000 we paid at first.
“Look at the trick, in looking for donors; you’re being kept in the hospital. It can take you two weeks to get donors and each day at the hospital costs 7500. So, your bill is accumulating every day. There are people there whose bill has risen up to N800,000. It’s madness!
“There’s a law in Lagos state which states that persons living with disabilities should get free medical care, but the doctors at the hospital said they don’t know about that law. The president signed the disability bill this year, January. And the bill states specifically free Medicare for persons with disability. What my NGO wants to do is to start sensitising doctors in these hospitals for them to know.
Another person who has been fighting tooth and nail to ensure that the 2011 Lagos State Special People’s Law becomes a reality and not just something for the books is Daniel Otti. Otti, who describes himself as ‘a media person and a social inclusion advocate’, says “I advocate for persons with disabilities. I host a show for persons with disabilities on Nigeria Info. Generally I advocate enhanced wellbeing for everybody, including persons with disabilities. I advocate for a fair and equitable society.”
According to him, “Lagos state special people’s law, Section 27, Sub-section 12, guarantees the free medical treatment of persons living with disabilities. The law was enacted in 2011. Let us assume that 5 years was like a gestation period, now we are in 2019 and we are still having a situation where even doctors claim that they have to confirm with their legal department in a situation of emergency. This is what a doctor at LASUTH CMD’s office told me.”
“We brought a letter from Lagos State Office for Disability Affairs (LASODA) and also got an excerpt of the law. It was after he saw the excerpt of the law, where it specifically stated that there should be free healthcare, that’s when he now said he would pass the letter to the board.
Otti noted that it behooved the Lagos State Ministry of Health to sensitise doctors about the existence of the law and how to handle cases pertaining to persons living with disabilities. “I can assure you that more than 70% of the doctors in Lagos state will claim they don’t know.”
Narrating how they once lost a young man living with disabilities, Kola Kazeem, around Computer Village, Lagos, Otti said, “The bottlenecks are many. And it is not just about one person, it means that the institutionalised structure about this law has to be overwhelmingly reviewed, and capacities have to be built from midwives to all health attendants have to know about this law. If you say you can’t guarantee 100% cost of medical care, you should specify what you can bear as a state based on what the law states.
“Kazeem was paraplegic; meaning his immune system easily got weakened, so he began to develop urinary track issues, so we took him to LASUTH. They gave him a catheter to urinate, told us they didn’t have beds, and discharged us.
Unfortunately, Kazeem despite all efforts, still died. And Otti believes that if the hospital had done the needful in good time, the young man would still be alive.
“The guy was at the hospital a day before he died and was told to return for surgery. I think he was told to go and recover before he could qualify for surgery, but each time he went, they would say he was not due, and the situation was getting worse.”
“If Lagos State says they want to set up a health intervention fund for persons living with disabilities, I think well-meaning Nigerians can come and place in the fund, just like they have in the Lagos State Security Trust Fund. Is the health or wellbeing of persons with disabilities not as important as that? For instance, if the government decides that they want to set aside N1b for the health fund of persons living with disabilities, government should launch it with N500M and see if well-meaning Nigerians will not swing into action. From CSR, the funds will come in.”