Beyond the pain associated with Sickle Cell Disease, the high cost of treatment is another burden borne by patients, which has increased advocacy for incorporation of sickle cell treatment into the National Health Insurance Scheme, Ayodeji Ake reports
Even with her eyeglasses, her eyeballs were obviously wet as she was yet to get over her mother’s death. But given that she sat in a public space, she was careful to control her tears from rolling down her cheeks.
Oluwatimilryin Edwin took a deep breath, stirred for a few seconds, and blinked her eyes, gnashed her teeth as she reminisced. “The first thing that happened was negligence; she was in the private hospital for many days. She was ill and the doctor didn’t conduct a test which should have been the first thing. They just assumed and they were treating her as she kept deteriorating.
“She was in the hospital for probably five days and it took me screay for them to run her test that day and by the time we got the test results she was already septic. Then they referred us to a government hospital in Lagos State at the very last minute. We got there and we were told there was no bed space.
“‘No bed space’ made my mom die in the ambulance that took her to the hospital because we ran around for bed for about 30 minutes. By the time they started, she was gone and this situation also happened to me last year in May.
“I use a government hospital but my first point of call will be a private hospital because of comfort and attendance. There was a bit of negligence in my case as well before the referral came then I was referred to a tertiary hospital, ‘same no bed space’.
” With N20,000, bed space was created. They were adamant. It’s a pity and a shame. I will give it to the government hospitals, they have the resources, they have specialists, and it is the specialist that saved my life, I got to see a hematologist and a cardiologist.
“In fact, different medical specialisation got to see me but I know that eventually when they found out what was wrong with me, the two specialists saved my life. So I was thinking that if during my mom’s time I had just thought or had someone to think for me to bring out money to pay for a bed. This is sad because there are a lot of other people. What if I couldn’t afford the N20, 000?
“I was admitted to the medical emergency for some time before I went to the ward. When I got to the medical emergency there were issues upon issues. I give kudos to the doctors but there is so much corruption in the state medical industry that if you do not bribe here or there you won’t be responded to.
” I remember the first day in the medical emergency, there was a patient beside me who had been gasping for about two hours or more. Nobody was attending to her. I remember I fell asleep and by the time I woke, her husband was trying to wake her up and screaming her name and it was at that time they started their silly resuscitation.
“Why wait till you have to resuscitate someone? She passed on-a family lost a mother and a wife. She had young children. How I knew was how her husband started eulogising her, it was really traumatising for me.”
From her utterances you could tell Edwin is very brilliant and eloquent. But over the years, she has been fighting a silent battle with sickle-cell disease,a severe hereditary form of anemia in which a mutated form of hemoglobin distorts the red blood cells into a crescent shape at low oxygen levels.
It is the commonest among those of African descent. Because sickle cell disease is hereditary, she got it from her parents. Her late mother fought the silent battle with the disease until her last breath.
Hereditarily, Edwin is also living with sickle cell. She narrated the discrimination and stigmatisation and how she lost her relationship of many years with her lover to sickle cell.
“Sickle Cell Disease has affected me in so many ways. I have been faced with stigmatisation in different points in life. Right from as early as secondary, I have been sickly from secondary school which made me subjective to bullying.
“I got out from school but employment also was a difficult sphere, especially trying to get a job, finally got a job, trying to maintain and keep the job, not knowing if to be upfront about your condition or not and so many things like that.
“Even in relationships, social relationships, romantically and otherwise, there are comment you get sometimes that could affect your mental health.
“My fiance walked away from me about five years ago because of sickle cell. He was aware. I made him do his genotype test at the beginning of the relationship. One and half year late, he realised maybe this was too much for him and he walked away.
“When I asked him, one of the reasons he gave was that he can’t do it. There is still need for the education around it. Yes, it is a serious health condition. Don’t let us underestimate the condition but yet not enough education. There is a much heavier myth of burden around it that can and should be solved. So there is need to be a lot more discussion about sickle cell, a balanced discussion.
Creating Awareness through Campaign
To raise a voice for people living with Sickle Cell and strong advocacy, Edwin founded Crimsonbow Sickle Cell Initiative, joining forces with different nongovernmental organisations like Sickle Cell Nigeria, Sickle Cell Advocacy and Management Initiate, Tony May Foundation, and NDC alliance, creating awareness on stigmatisation and quality healthcare services and health insurance inclusive for people living with sickle cell.
“Yes, my fiancee at that time had walked away from me and I was out of work for about a year because mental health-wise, I was in a very low place. It was because of him, during that year because I was constantly at home, I didn’t go out. I was at the floor crying every single day, thinking where do I start from but the inspiration came to start this and I just thought, okay if we educate a lot more people maybe life could be better.
“The initiative was born out of education although we do a lot more things right now- we run a clinic that takes care of people living with sickle cell, we buy health insurance for people living with sickle cell, we empower people living with sickle cell mentally and financially. We have all other projects that take care of people living with sickle cell and we create rural education. We also partner a lot of local governments to bring discussion about sickle cell prevention and management to their local governments.
“So our strategy is to partner a local government or a community leader because those are the people that have the branch root system. Once we partner them, we take their information about the condition and genotype tests,” she said.
So far, to make the world a better place for people living with sickle cell, CrimsonBow Sickle Cell Initiative, has impacted over 15,000 people directly and an un-estimated number of people indirectly.
“It’s over seven years now. We have impacted about 15,000 people directly but indirectly a lot more because we hold a lot of online sessions, through the press as well. Initially, it was a bit difficult as we relied on donations heavily but now cooperate organisations are beginning to support us.
” Another thing was that it was difficult for corporate organisations because the sickle cell was not a major issue, you will see them wanting to consider other issues that are louder, that are more popular. Now, we are not trying to downplay any other issue, issues that are serious but there should be fairness.
“Nigeria is the sickle cell capital of the world, so it shows that it is affecting a lot of people in this country and I am sure that there even a lot of people undocumented living with sickle cell in this country, in the rural areas that do not even know.
Easing the Suffering through NHIS Intervention
In a conversation with the Desk Officer, Sickle Cell Control Program under the Federal Ministry Of Health, Dr. Alayo Shopekan, who represented the Minister of Health, Dr. Osagie Ehanire, during a roundtable discussion program recently in Lagos, he noted that there is work in progress at the federal level to reduce the cost of treatment of sickle cell disease through the National Health Insurance Scheme (NHIS).
“We still need to do a lot more in terms of awareness creation, advocacy, improving the quality of life for those who are living with sickle cell disease and ensuring that we reduce whatever is going to be out-of-pocket expenses for them.
“The federal government through the federal ministry of health has actually taken a lot of steps like I said. The first one was in 1990/91 when they did a national survey for non-communicable diseases, they included sickle cell and that is because the federal government realised that sickle cell is our problem and we shouldn’t forget Nigeria has the highest burden globally, we are the first followed by DRC Congo and India.
“Strategic plan was of course developed to address sickle cell in Nigeria and in 2011 with the support of MDG six zonal sickle cell centers were established, one in each geo-political zone. There is one here in Lagos Ebute-meta, it is still there still functioning and they were equipped with high performance liquid chromatography, that is to ensure that we are able to pick these children that are born this early so that we don’t allow them to die before the age of five.
“In addition to that, a national guideline was developed to actually avail practitioners, our colleagues in the hospital to educate Nigerians on Sickle cell so they know to identify a case when they see one and how you manage it.
“Government has to take steps; they are vaccine-preventable, so why can’t we just include it in our routine immunisation. Of course there are some of them that require this up to the age of 15 or 18, but it is there in our immunisation schedule,” he said.
Speaking further on intervention through NHIS to reduce burden, he said: “Out-of-pocket expenses for them is quite huge but you know sickle cell is not the only non-communicable disease that is not well covered under the NHIS and that is why we are calling for the review of that act that established NHIS which is currently on-going at the National Assembly.
“In fact, they have held one public hearing that the minister and everybody were told to look at all these things holistically to have a national health insurance scheme that works for everybody.”
We still need to do a lot more in terms of awareness creation, advocacy, improving the quality of life for those who are living with sickle cell disease and ensuring that we reduce whatever is going to be out-of-pocket expenses for them.