Stakeholders want National Assembly to pass sickle cell bill

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Participants at a conference on Sickle Cell Disease (SCD) have called on the National Assembly to pass a bill on sickle cell control and management to better insure the life of the people living with the disease.

* 1,500 children born yearly with disease, 3.6m Nigerians affected
* Pfizer, SCSSN want introduction of SCD education in schools’ curriculum

Participants at a conference on Sickle Cell Disease (SCD) have called on the National Assembly to pass a bill on sickle cell control and management to better insure the life of the people living with the disease.

The conference, organised last week in Enugu by the Sickle Cell Support Society of Nigeria (SCSSN), was supported by Pfizer pharmaceuticals.

The participants, which include stakeholders, partners and sponsors from different part of the world also called for more support from governments at all levels on the treatment, management and control of the genetic disorder in Nigeria to reduce the 1,500 children born every year with the disease.

The theme of the conference was “Reducing the burden of Sickle cell disease in our communities.” The call was led by the keynote speaker and professor of Haematology at the Muhumbili University of Tanzania, Lucio Luzzatto; Medical Director of Pfizer, Dr. Kodjo Soroh; Professor of Pediatric Hematology and Chairman, SCSSN, Adekunle Adekile; Director, Comprehensive Sickle Cell Centre in Ghana, Prof. Kwaku Frempong; and Vice-Chairman of SCSSN in Nigeria, Prof Obiageli Nnodu.

They advised that the high death rate of sickle cell disorder can be prevented through proper management and increased disease awareness programmes in rural areas.

Adekile called on the government to support the Sickle Cell Society in order to reduce the burden of the disease in the communities. He also identified poor leadership on the part of the government as being responsible for the snail paced action against sickle cell in Nigeria and called on the National Assembly to revisit the Sickle Cell Act brought before the house four years ago with a view to passing it.

Adekile said: “The chunk of the problem lies on the Government because over the years, they have paid lip service to Sickle Cell Disease control and management. The Government should make policies on SCD a serious one so that life of patients can be insured. The National Assembly should revisit and possibly pass the Sickle Cell Act to ensure that people with the disease are covered.”

According to Adekile, sickle cell is a disease that is common all over the world, particularly in Nigeria, which has the largest burden with a total number of 1,500 children born every year with the disease.

Adekile said that the problem of Sickle cell is pervasive and many of the patients live in the rural areas, pointing out that the care in the tertiary or secondary centres are not enough. He regretted that the government has not paid adequate attention to tackling SCD noting that the disease cannot be controlled until a comprehensive National policy for the control and management of the patients is introduced

Frempong said that most people who are born with SCD in Africa are not diagnosed and many of them die as children. He observed that governments are not aware of the impact of SCD on childhood mortality while noting that there is no country in the whole of Africa that has programmes for new born screening.

“Our government must step up measures and provide some supplements so that people can be treated as the medical cost is usually beyond what people can manage,” he said.

Soroh said Pfizer would continue to support activities on how policies can be improved to adequately impact on Sickle cell patients.

He said there is no way government can better manage the situation without making policies that will guarantee treatment for people with the disease. Pfizer a major sponsor for the 2017 SCSSN conference expressed their commitment to partner with the Government and stakeholders that are willing to make feasible policies towards reducing the burden of Sickle Cell in the country.