Govt not doing enough to help sickle cell patients – Expert

A public health physician and consultant, Dr. Annette Akinsete, has deplored alleged lackadaisical attitude of government towards those suffering from the deadly Sickle Cell anaemia disease.
Akinsete, who also runs a Non-Governmental Organisation, Sickle Cell Foundation in Lagos, alleged that government was not doing enough to help patients with the deadly disease to cope with life.
Sickle cell anaemia (sickle cell disease) is a disorder of the blood caused by an inherited abnormal haemoglobin (the oxygen-carrying protein within the red blood cells). The abnormal haemoglobin causes distorted (sickled) red blood cells. The sickled red blood cells are fragile and prone to rupture.
Sickle cell disease afflicts millions of people worldwide and Nigeria is not an exception. Someone born with sickle cell disease could only expect to live an average of 14 years in the 1970s, and today the average lifespan still only hits 40 to 50
years.
This genetic health problem has affected people, globally, resulting in increased risk of premature child death. Our correspondent gathered that death of patients with this disease is now on the increase, especially this year, where many young sufferers have died before getting help.
Akinsete, however, said there was the need for effective control of the deadly disease through the strategy of early detection, public awareness and effective partnership between countries.
The consultant also stressed that health promotion and health education had become imperative, adding that government had failed in this regard.
“That is why we are trying to push for something in the curriculum of the education sector and we are not there yet. But until then, the NGOs should be empowered to continue doing their school-to-school campaign and what they can do to put information on the airwaves. Though we know government is not paying a lot of attention to Sickle Cell disease, we should know they cannot do it alone,” she said.
On the content of the curriculum, Akinsete said it would include the basic things about the condition such as the realisation that the disease is an epileptic disorder; that you can pass it to your child if you are the carrier, but there is no way you can know unless you do a test and before you get into any relationship, you should know your status so that you won’t do that out of ignorance.
“That is why I talk about it anytime I’m asked to talk to couples before going to the altar. All these things they need to know early, school age is the best time to capture them,” she said.
She declined comment on whether awareness had reduced death related to sickle cell, saying, so far, there had been no research on it.
Akinsete advised government to do more by increasing awareness and living up to its
responsibility.
On the role of parents in helping their children to cope with the disease, she enjoined them to take advantage of the health facilities in the country.
“That your child has this disease does not mean it’s the end of the world. Even if you don’t want to go to health facilities around, there are sickle cell clubs every where, where you can get help. You should know you cannot handle it alone; every parent with this case needs a support system,” she said.