Over 20,000 babies are born each year with Sickle Cell Disease and 80% die before their 5th birthday, according to the 2015 Uganda sickle cell surveillance study.
In a bid to reduce the Sickle Cell Disease burden in Uganda, the Ministry of Health yesterday launched a private-public partnership with Novartis, an international pharmaceutical company, one of the leading producers of Hydroxyurea, a drug for SCD.
The launch of the partnership took place at the Ministry of Health headquarters.
One of the major aims of the 5 year collaboration, Dr Charles Kiyaga, the National Sickle Cell Program Coordinator revealed, is to make the drug affordable.
“Through this collaboration, we want to make hydroxyurea available, accessible and affordable. It’s a drug that has transformed lives for people living with Sickle Cell in the western world but with in Africa, it has just come on the market,” Dr. Kiyaga said.
He said that more effort has until recently been on diagnostics and community sensitisation but very little has been done on improving care for the people living with the Sickle Cell Disease.
Dr Ruth Aceng, the Minister of Health said that although the country is focusing on managing the Covid-19 pandemic, there are other essential services that ought to be considered because they present a high burden of morbidity and mortality, SCD being one of them.
Through this partnership, Aceng said, the Ministry will be able to support training of health workers to care for children with SCD among many other programs lined up.
Aceng further noted that once the drug is availed on the market, there is also an immense need to reduce its cost to make it affordable for everyone.
“Right now a tablet of hydroxyurea costs between Shs 800-1500. The local population of Uganda cannot afford that. Even if it’s reduced to half the cost; it’s still unaffordable,” she explained.
Similarly, Sickle Cell satellite clinics will be opened up in various hospitals.
“We have centres of excellence in the regions with a high burden of sickle cell disease; Mulago National Referral Hospital, Jinja RRH, Mbale RRH, Soroti RRH, Lira RRH and Gulu RRH.
Dr Oyoo Charlse Akiya, Commissioner Health Services (Non-Communicable Disease) said that Non Communicable Diseases are on the increase in this country and are ranked one of the top 10 causes of morbidity in Uganda; sickle cell being part of them.
He said that the absence of data on NCDs has made it hard for programming to take place. He added,
“I am happy to note that national prevalence data exists for sickle cell disease, and it is what is facilitating programming and resource mobilisation.”
Racey Muchiiwa, the head of sub-Saharan Africa, Norvatis, said that this partnership is the second one taken after Ghana.
“I want to thank the Ministry of Health for the outstanding partnership and commitment to reduce the burden of Sickle Cell in Uganda. This partnership provides a framework for collaboration with the MoH to establish centres of excellence to treat and manage SCD. Additionally, it will help healthcare professionals have a more comprehensive vary of treatment options; particularly Hydroxyurea,” she said.
She also said that this partnership will offer support to various groups to create more awareness and help in fighting stigma among the patients.