Sickle cell patients groan over poor access to health care, rights

Nigerians suffering from Sickle Cell Disease have lamented about their harrowing experiences accessing healthcare services in the country, and violation of their human rights among other challenges. They lament the low awareness about the condition from both the public and health workers, high treatment costs as well as discrimination while accessing care, among others. Know […]

Nigerians suffering from Sickle Cell Disease have lamented about their harrowing experiences accessing healthcare services in the country, and violation of their human rights among other challenges.

They lament the low awareness about the condition from both the public and health workers, high treatment costs as well as discrimination while accessing care, among others.

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They said there is urgent need to address the challenges in other to close the gaps of care in the country.

Sickle Cell disease is a genetic blood disorder that affect a person’s red blood cells and passed on from parents.

The disorder causes normal round and flexible blood cells to become stiff and sickle shaped, which in turn stops the blood cells and the oxygen they carry from moving freely around the body. 

Burden of the disease

Nigeria is disproportionately affected with the disease with about two to three percent of the population suffering from it.

According to the Minister of Health, Dr Osagie Ehanire, Sickle Cell Disease affects about 100 million people worldwide, and is fatal for over 50 percent of those with the most severe form.

He said Nigeria ranks first as the country with the highest burden, ahead of India and the Democratic Republic of Congo. “Nigeria is ranked as the highest sickle cell endemic country in Africa, about 25 percent of Nigerian adults are healthy carriers of the sickle cell gene. About 150,000 children are born annually with the disease in Nigeria and 100,000 infants die from the disease, which is 8 percent of infant mortality.”

The minister said Sickle Cell Disease thus significantly contributes to maternal, neonatal, infant and under-5 child mortality, and consequently undermined substantially, the attainment of millennium development goals in Nigeria and negatively impacts the attainment of Sustainable Development Goals (SDGs). 

According to him, SCD is also associated with HIV and viral hepatitis B and C infections, due to associated frequent blood transfusion.

Other problems associated with SCD include failure to thrive in children, vital organ damage, stroke, blindness, anaemia, stunting, stigmatisation, job discrimination and illness-related absenteeism from school or work, including inability to maintain or establish family, just to mention a few.

Prof. Obiageli Nnodu, a haematologist, said children born with the disease die early if they are not followed up with appropriate care.

Prof. Nnodu, who is also the director of the Centre of Excellence For Sickle Cell Disease Research & Training, (CESRTA), University of Abuja, said many of the estimated 150, 000 babies born annually with the disease in the country do not live past the age of five because of lack of access to diagnostic testing and comprehensive care. 

Patients’ experiences and the way out

Shehu Olaitan Mohammed, a 56-year-old sickle cell disease survivor, said he discovered he had the condition at the age of 10.

Four of his siblings, all male, had the condition with three growing into adulthood and only him surviving.

He said, “the experience has been that of pain, anxiety and hope, generally pain is the hallmark of sickle cell diseases, with the attendance of hospital visits.

“I have been admitted in the hospital for more than 200 times. I thank God that at the age of 56, I can say I have survived sickle cell anaemia. The experience hasn’t been easy; the hospital visits, the money you spend, the anxiety you put your family through is very daunting. Except for the grace of God, it’s not easy growing up as a sickle cell patient, especially in an environment like ours where the hospital management, the facilities, and even the personnel, are so unfriendly, and sometimes very hostile.”

He said the major challenges for people living with sickle cell disorder is the low awareness amongst the populace.

“There’s not enough empathy for sickle cell patients. In most cases, when you go to the hospital, even the doctors do not understand you, they feel that you are an attention seeker and that you just want to have all those strong injections. They feel that you are just addicted to the drugs.

“There is not enough information about available health care, about new discoveries in the treatment of the disorder, and even when there are new discoveries for treatment, access to them is another problem,” he said.

On human rights, Mohammed said sickle cell disease patients face a lot of stigmatization, even in employment.

He said, “Some employers don’t even give you the chance to try and prove that you can do the work. To me, everything still boils down to need for all stakeholders to know more about sickle cell, and the government should also be more protective of those of us that are in paid employment.”

On the way out, he said there should be more advocacy from all stakeholders starting from the government, and that the media needs to do more.

He said, “Many people out there think that sickle cell disease is a death sentence but it is not so. So, information like this goes a long way, and much more importantly, we need more information about new discoveries about the illness, the medicines available, and access to them.”

Mohammed urged government, corporate bodies and others to have a dedicated fund to support sickle cell patients, while government should subsidise costs of medicines and treatment for the condition and establish a law against discrimination of persons living with the disease.

“Aside government, corporate bodies need to do more in helping, especially in the area of employing people with sickle cell. They should even make it part of their corporate social responsibility.

“Also, some of those drugs which we have to take throughout our life time should be made readily available and accessible to us by government at a very subsidised rate. A special commission or special department in the ministry of health, in charge of sickle cell and related illnesses, should be established so that people with the condition can relate directly with such departments in the ministry.

“All these policies would go a long way in ameliorating the stress and pain that sickle cell patients go through.”

Another person living with the disease, Pharmacist Mariam V.  Lawal, 45, said she was born at a time when blood genotype testing before marriage was unheard of.

Narrating her experience, she said, “I was eventually diagnosed with genotype SS at about five years of age after my parents sought medical explanation for my health challenges. Looking back, it has been a mixture of ups and downs. 

“I developed hearing impairment from age 11. Learning under such conditions was an added challenge for me. However, I still maintained an enviable academic record in school. I was admitted to read Pharmacy at the University of Ibadan, where, in spite of my health challenges, I graduated among the top in my class with distinctions. I later went on to acquire my Masters and Ph.D. degrees. I started working as a pharmacist at the University College Hospital (UCH) after my Masters degree.”

She said after marriage, she experienced the worst crises ever during her pregnancies. “I had acute chest syndrome after my first child. My second was stillborn. Then, I had the third, which thankfully was successful, although the pregnancy was also riddled with complications. I later developed hip AVN at age 40, but I have been coping well since and doing quite fine, though the crises do come occasionally.”

Pharmacist Lawal said despite the fact that Nigeria accounts for the highest proportion of affected persons in the world, and persons living with sickle cell disorder frequently have to access quality healthcare and medicines, they are deeply concerned that government is unable to attend to their healthcare needs.

“I only hear of the six geopolitical zoned Sickle Cell Centres on paper. We (and our families) are basically on our own for our healthcare and medicines.

“I am more concerned about indigent warriors who inadvertently cannot access good healthcare, and this obviously accounts for the high mortality rate in our country. Some NGOs are doing a lot to fill this gap, but their efforts cannot go far without definitive inputs from the federal and state governments. Quality healthcare is the right of every individual. We also want all forms of discrimination against sickle cell warriors to stop.”

She said the way out of the challenges being faced by people with sickle cell disease is for government to be deeply involved.

“Sickle cell warriors are supposed to be on some medications for life. Aside from the National Health Insurance Scheme (NHIS), which not every warrior is able to access, we want a special Scheme to address sickle cell disorder and treat sickle cell complications freely.

She said a social support scheme for sickle cell warriors is highly important.

“Sickle cell warriors should be given free access to quality healthcare and medications when needed. Also, sickle cell warriors should be allowed to prove themselves capable. They should not be denied jobs on account of their health challenges. 

“As a preventive measure, government should legislate to make it mandatory for intending couples to check for genotype compatibility before marriage.”

Abomi Ahmadu called for economic empowerment for sickle cell disease sufferers and their care givers.

She said it has not been easy caring for her six-year-old child who suffers from the disease.

She said she was initially doing a little business but as a result of the cost of treatment for the child, the business ran aground, adding that she could no long provide the child nutritious meals let alone his medicines.

The Minister of Health, Dr Osagie Ehanire, said Sickle Cell Disease, though endemic in Nigeria, could be prevented just like other non-communicable diseases. 

“We must all therefore commit to ensure a concerted effort to know our genotype and that of our family members before marriage. This will go a long way in supporting government efforts to reduce the prevalence of Sickle Cell Disease in Nigeria, while the government ensures that the services required to address SCD and other Non-Communicable Diseases are available to stem the rapidly increasing epidemic of NCDs, and associated mortality and morbidity.”