Experts have called for the need to focus on caring for sickle cell carriers, saying the lack of proper sensitisation on the importance of genotype testing has led to what could have been prevented by the increasing numbers of children born with Sickle Cell Disorder (SCD) in Nigeria
They say that the government should support hematology wards in the country and made provision for the treatment of the disease to some extent with the National Health Insurance Scheme (NHIS).
These experts discuss ahead as Nigeria joins the rest of the world to celebrate World Sickle-Cell Day, every June 19, as they were engaged in a chat on twitter by the Nigeria Health Watch (NHW) focusing on caring for sickle cell warriors in Nigeria.
Sickle Cell Disease is a global health problem affecting millions of people. It is estimated that approximately 150,000 children are born with sickle cell disease in Nigeria every year, while about 40 million Nigerians are healthy carriers of the sickle cell gene.
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Recently, the oldest Nigerian sickle-cell disorder woman, Ashata Onikoyi-Laguda, passed on February at the age of 94.
“Sickle cell warriors already have a lowered immune system. They should be protected by ensuring they shield accurately. To support them, we should provide palliatives (medicine and groceries) that will make shielding and isolation easier on them,” says Oyesola Oni, public relation officer, Sickle Cell Aid Foundation (SCAF),
According to Oni, there is a myth/misconception; many people in Nigeria believe people living with sickle cell disease can’t amount to anything. We have lawyers, doctors, and captains of industries all doing well despite having the condition.
“There is a misconception that people with sickle cell are always in the hospital on a mission. We have had warriors who didn’t have to go into hospital for a crisis for 2 years and in some cases 7 years,” Oni says.
David Ajibade, executive director, Brain, and Body Foundation, also notes that many still believe there’s some sort of evil diabolical activity or force at work that causes sickle cell disease, which is why many parents still take their children to native medicine healers for treatment. This is usually among the poorer members of society.
Sickle cell diseases are the conditions caused by the abnormal shape and low flexibility of red blood cells, which are otherwise flexible and round, and the reduction of blood and oxygen caused as these irregularly shaped red blood cells cannot easily pass through blood vessels.
Oni says most importantly, Nigeria needs a society that understands what sickle cell is, a society that can end the stigma related to sickle cell and accept and embrace people living with sickle cell, treating us with respect, love and understanding, not pity.
“Misconception is that after a certain age, the sickle cell crisis stops. Actually, this isn’t true. We just know better because we are older and hence take better care of ourselves,” she says.
Speaking on risk factors that COVID-19 poses on SCD warriors and how they can be protected, Oni says if there’s one thing COVID-19 has taught us, it’s this: weakness is punished/penalised, especially weakness of the immune system.
“This is why most of the deaths have been among the elderly and those with other health conditions,” she stresses.
On the other hand, Ajibade stated that SCD warriors, as a rule, have weak immune systems noting that other than ensuring social distancing, wearing masks, and maintaining good hygiene habits, one must pay special attention to taking foods and supplements that specifically strengthen the immune system.
“I believe nutrition should also be looked at. We now know that people with SCD are deficient, sometimes severely deficient in certain nutrients. These include zinc, vitamin D, magnesium, vitamin K, Vitamin C, and B vitamins, and omega 3 fatty acids.
“Zinc deficiency, in particular, is the culprit behind those chronic leg ulcers we see in many warriors. What if governments were to provide free multivitamin support for such children with the condition?
“When we have focused on strengthening our warriors’ immune systems, we have seen tremendous results,” he says.
On initiatives to help sickle-cell disease warriors, these experts harp on the need for government to support hematology wards in Nigeria stating that they should be better equipped with oxygen, monitors, and ventilators for when HDU/ICU care is needed.
“We need more Apheresis machines so that people with SCD can access exchange blood transfusions and we need the Government to establish a national health insurance scheme available to people with sickle cell in Nigeria. Most can’t afford good medical care and insurance companies avoid people with pre-existing conditions. The government has to step in and assist,” Oni urges.
Ajibade adds that it would be great if the government could subsidize the cost for such tests, especially for the poor and those living in remote regions. “Legislation could also be put in place to create more supportive environments for SCD warriors, especially in the workplace.
She further adds that we need an overhaul of human resources systems regarding SCD. People have lost jobs because they have sickle cell. We need organisations to encourage by allowing them to work from home on some days, also to resume an hour later/close an hour earlier if it will help reduce stress.
“Government, private sector and NGOs should empower socio-economic initiatives that allow people with sickle cell to learn skills that will empower them in running their own business if they prefer to work for themselves,” she advises.
