A Bill for an Act to Establish the National Agency for Sickle Cell Disease and other Heritable Blood Disorder in Nigeria sponsored by Rep. Bamidele Salam, representing Ede North, Ede South, Egbedore and Ejigbo federal constituency of Osun state, has passed through second reading in the House of Representatives.
The motion for the second reading was moved by Salam and seconded by Rep. Ibrahim Isiaka representing Ifo and Ewekoro federal constituency of Ogun state after which it was unanimously passed by the House.
The bill is a proposed legislation that marks a significant step forward in the efforts to combat sickle cell on all fronts of research, surveillance, prevention and treatment.
While speaking on the essence of the bill, Rep. Salam recalled that Nigeria has the largest population of people with Sickle cell disease in the world, with over 150,000 babies born with it every year.
He said, sadly, there is no single legal framework in Nigeria for the prevention, control and treatment of this endemic disease.
He maintained that, at least 100,000 babies die from the disorder in Nigeria every year according to the World Health Organisation making it the number one sickle cell endemic country in Africa and as the country with the highest burden of sickle cell disorder in the world with over 40 million Nigerians being carriers of the sickle cell gene.
The bill therefore seeks to establish a national agency to constantly address all issues pertaining to prevention, management and treatment of the Sickle Cell Disease and other heritable blood disorder in the country.
The overall intendment of the bill is to improve the lives of people suffering from sickle cell disease, recognize the disease as a serious and debilitating illness, and allocate new resources to monitoring, researching and treating it.
Other objectives of the bill as enunciated in the legislative brief circulated by the Media office of the lawmaker include to formulate and implement policies, guidelines and strategies on sickle cell disease and other heritable blood disorders; facilitate the engagement of all tiers of government and all sectors on issues of sickle cell disease and other heritable blood disorders prevention, care and support and advocate for the mainstreaming of sickle cell disease and other heritable blood disorders interventions into all sectors of the country.
The Bill also seeks to promote, improve and support research and learning in sickle cell disease and other heritable blood disorders; create awareness on sickle cell disease and other heritable blood disorders; protect patients’ rights including the right to humane treatment and freedom from abuse; as well as promote and coordinate partnerships and collaborations with national and international organizations.
Speaking further on the bill, Rep. Salam noted that, “despite being one of the most common generic and blood diseases, and the fact that we have known about it for several decades, Nigerians with sickle cell disease continue to face a variety of barriers when trying to access care.
“Individuals with sickle cell disease not only suffer from chronic, debilitating pains and are at the risk for other serious complications, but many of them also lack access to the medicines they need.
“This bill will provide a means of ensuring that we have the resources to better understand this disease and to maintain access to services for those affected by it.
“Other diseases that impact a similar or even smaller number of people receive more attention, and at times, more resources to help the patients. It is not out of place to therefore allocate necessary resources to monitor, research and treat it. We owe it to those suffering every day to do everything possible to find a cure”.
Sickle cell disease is a group of blood disorder typically inherited from a person’s parents. The most common type is known as sickle cell anaemia.
Medical Science describes Sickle cell anaemia as a condition in which there are not enough healthy red blood cells to transport adequate oxygen through the body. This leads to a rigid, sickle-like shape under certain circumstances. These sickle shaped cells can stick to blood vessel walls blocking the flow of oxygen to organs, causing excruciating pains, popularly called crises.
With the scaling of the Second Reading in the House of Representatives, the Sickle Cell Bill will now be subjected to a Public hearing by the House Committee on Health.