Hope has come alive for victims of sickle cell disease in Nigeria, as the Bill for Federal Government intervention on medical treatment is now under consideration by the National Assembly.
The Bill, which has passed its first and second reading on the floor of the Senate and was sponsored by the Senator representing Southern Kaduna Zone, Sunday Marshall Katung, is expected to provide succour to the victims of sickle cell disorder who die prematurely in Nigeria.
Speaking with journalists at the weekend, Senator Katung said that “based on available data, 150,000 babies are born with sickle cell disorder every year in Nigeria, out of 350,000 globally. We have the highest burden in the world”.
He said,”My interest goes back many years. In 1991, I visited a family member whose children were living with sickle cell disorder. One of the boys had just returned from the hospital when he suddenly went into crisis again. The parents began discussing what to do next. Then the boy said, Dad, Mom, please allow me to die so that you can rest. That statement broke me. It has stayed with me ever since.
“I first tried to sponsor a bill on sickle cell disorder in 2016 while I was in the House of Representatives, but it did not materialise. Now that I’m back in the National Assembly, I feel strongly that this bill must be revisited and done properly. Too many people have died because of this disorder.”
Katung, who also spoke on the stage of the Bill, said that “the public hearing is scheduled for Monday”, stressing that “after that, the House will conclude its processes and send it for presidential assent.”
“We need all the support we can get, especially from the media, because the bill will truly change lives”, he added.
On his position on religious institutions now insisting on genotype screening before marriage, the lawmaker remarked, “I commend both Christian and Muslim leaders for that. Initially, some people argued it was an infringement on their rights. But if you have ever seen someone in sickle cell crisis, you would understand. Love alone cannot sustain a marriage when you’re dealing with that level of pain.”
Senator Katung said: “The medication many patients rely on comes from London and must be ordered three months ahead. It is very expensive. What we want to promote is local production. We have pharmacology centres and pharmacists, why can’t we produce these drugs here?”
Besides, he noted that the bill also proposes treatment centres in every local government and centres of excellence in the six geopolitical zones, possibly attached to existing tertiary hospitals.
When asked if the bill should recommend mandatory pre-marriage genotype testing for Nigerians, the lawmaker said, “That issue came up from stakeholders; Nigeria is a very sensitive society, so we preferred that such proposals come from the public during the hearing. But yes, many experts are strongly recommending mandatory pre-marital testing because it is one of the most effective ways to drastically reduce the burden.”
