On World Sickle Cell Day (19th June 2021) the Vice President of the Republic of Ghana, His Excellency Dr. Mahamudu Bawumia, announced through his Facebook and Instagram pages that hydroxyurea, a disease-modifying therapy for sickle cell disease (SCD) will now be provided under the National Health Insurance Scheme (NHIS) to improve the health of people living with SCD in Ghana.

This announcement followed a meeting he convened on 8th June 2021, with stakeholders including Professor Kwaku Ohene-Frempong, President of the Sickle Cell Foundation of Ghana (Foundation), Hon. Kwaku Agyemang-Manu, Minister for Health, Dr. Lydia Dsane-Selby, Chief Executive, National Health Insurance Authority (NHIA), Dr. Patrick Kumah Aboagye, Director General, Ghana Health Service (GHS), Dr. Anthony Nsiah Asare, Special Advisor to the President on Health, and Mr. Roland Hammond-Addo of Novartis.

The Foundation is extremely gratified by the government’s decision to cover the cost of hydroxyurea, a global standard treatment for persons living with severe SCD under the National Health Insurance Scheme (NHIS). This will come as a great relief to thousands of Ghanaians.

In January 2019, when Ghana (represented by the Ministry of Health, GHS, and the Foundation) and Novartis established the Public-Private Partnership to improve the diagnosis and treatment of SCD, the planned initiatives included Novartis’ plan to make their own hydroxyurea and also to help make it more easily available in the country.

The benefits of hydroxyurea can be significant and, the treatment requires careful management. Therefore, the Foundation, Novartis, and Ghanaian experts developed a treatment programme called Ahodwo Programme. The term Ahodwo was chosen to convey the “relief” that hydroxyurea provides for those who suffer from SCD.

Teams of more than forty doctors, nurses, and pharmacists from 11 leading SCD treatment centres were organized into the Ahodwo Treatment Group. The group adopted a Treatment Protocol and a system to jointly manage and carefully monitor the safe use of hydroxyurea on a large scale for people with SCD.

With funding and technical assistance from Novartis and Dimagi Inc. (USA) respectively, the Foundation developed a mobile application called “Ahodwo Hydroxyurea Dosing App”. The App makes it easier for health professionals to register hydroxyurea-eligible people with SCD and jointly manage their treatment.

To provide greater access to hydroxyurea for all who need it at the 11 Treatment Centres, Novartis donated a large supply of hydroxyurea to the Ministry of Health (MoH) for use in the Ahodwo Programme at no cost to the participants.

More than 2,800 children and adults living with SCD are currently on treatment in the Ahodwo Programme and an additional 12 Treatment Centres will be added in the next few weeks.

With this major decision of government on behalf of the thousands of Ghanaians living with SCD and their families, the Sickle Cell Foundation of Ghana will do the following:

Translate policy into action: work the MoH, the GHS, and the NHIA, and to help translate the government policy into an implementation plan;

Train Healthcare Professionals: work with the Teaching Hospitals, other public and private health institutions to expand the training of healthcare professionals in the safe use of hydroxyurea for people with SCD; and,

Develop educational materials: develop educational materials and programmes to inform people with SCD, their families and caregivers and the public about hydroxyurea and SCD.

A few facts about hydroxyurea and its use in SCD:

Hydroxyurea is not new: Hydroxyurea is an old medicine that has been used for decades to treat several diseases in which the body overproduces abnormal or normal cells.

Hydroxyurea has been extensively researched: Hydroxyurea was found to be possibly helpful in the treatment of SCD in the 1980s and, following extensive and definitive research, it was first licensed in the United States in 1998 for treatment of SCD to reduce pain episodes (“crises”) and other major complications of the disease.

We know how it works: Hydroxyurea works in SCD mainly by increasing the production of baby (foetal) haemoglobin (HbF) inside red blood cells; the higher the HbF, the less likely that the cell will turn into a sickle cell.

It is not for everyone with SCD: Hydroxyurea is used for people with severe types of SCD, this includes both children and adults.

It requires careful monitoring: Hydroxyurea is a “strong” medicine with a few manageable side effects; so, its use requires careful monitoring with blood tests to ensure safety and must be supervised by trained doctors, nurses, and pharmacists working together.

It is not a medicine you should just go and buy: Hydroxyurea is not a medicine that should be simply bought from a pharmacy and taken without careful monitoring and supervision by a trained healthcare professional.

It should be taken once a day, everyday: Hydroxyurea is NOT a cure for SCD, and it is not medicine to take only when you have acute illness; it must be taken once daily at carefully selected and changing doses to achieve its maximum benefits.

It is approved for use in Ghana: In 2018, Novartis, the global medicines company, applied for and obtained approval for its hydroxyurea from the Ghana Food and Drugs Authority, specifically for treatment of SCD.

It is the global standard of care: Globally, hydroxyurea has become the most common standard medicine used regularly to reduce the pain and serious illness of people with SCD; it has improved the health and lives of thousands and prolonged the lives of adults with SCD.

Thousands have experienced its benefit: A few thousand Ghanaian children and adults with SCD have experienced the benefits of hydroxyurea. It is expected that many more thousands will experience similar relief (Ahodwo) from their pain as a benefit of the decision of our government to provide them hydroxyurea.