The House of Representatives is presently considering a Bill seeking to establish the National Agency for the Prevention and Treatment of Sickle Cell Disease and Other Heritable Blood Disorder. The Bill was presented by Rep. Bamidele Salam, representing Ede North/Ede South/Egbedore/Ejigbo Federal Constituency in the House of Representatives, on Thursday 13th February, 2020.
Titled ‘National Agency for Sickle Cell Disease and Other Heritable Blood Disorder (Prevention and Treatment) Bill, 2020’, the bill seeks the enactment of an Act of parliament that will establish an Agency whose functions will include the following, among others:
a. Formulate and Implement policies, guidelines and strategies on sickle cell disease and other heritable blood disorders.
b. 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.
c. Promote, improve and support research and learning in sickle cell disease and heritable blood disorders.
d. Offer counselling and advocacy to patients and couples intending to get married.
e. Protect Patients’ rights including the right to human treatment and freedom from abuse
f. Facilitate affordable treatment and general Medicare for patients of sickle cell disease and other heritable blood disorder.
This Agency as being proposed by Bamidele Salam through this bill, will have in place, a functional management structure that will provide leadership for the Agency and spearhead advocacy for the prevention, control and management of the sickle cell disease and other heritable blood disorder. The Board while facilitating funding to the Agency, will also facilitate National and International partnerships and collaboration for the purpose of enhancing Nigeria’s control initiatives on the sickle cell disease and hereditary blood disorder pandemic.
The Bill, expected to go through second reading in a matter of days, is expected to finally give structure to the management of sickle cell diseases in the country. The Agency that the Bill is seeking to create, will also facilitate proper synergy between government, nongovernmental organization and Civil Society Groups to achieve greater success in the management, prevention and control of sickle cell diseases.
Rep. Bamidele Salam speaking on the Bill, stated that it is high time government directed more dedicated and structured action towards the prevention and control of sickle cell diseases in Nigeria. He stated that “health conditions as important as sickle cell diseases need to receive focused attention that is built on organised structures and management framework. This Bill will establish that structure and framework that we require to prevent and control sickle cell diseases in the country, while also providing adequate medicare coverage for present patients.”