Patients and caretakers line up at a pharmacy in Mulago Hospital to get free medicines during a medical camp on May 1, 2023. PHOTO/TONNY ABET
By Tonny Abet
The Health Ministry has announced that successful negotiations with manufacturers of the life-saving medicine for Sickle Cell Disease (SCD), hydroxyurea, have resulted in a significant drop in drug prices by over fifty percent.
Dr. Charles Kiyaga, head of the sickle cell control program at the Ministry, stated that through advocacy with manufacturers, the price has decreased from Shs1, 500 to Shs600 per capsule, making the medication more accessible and affordable.
“The price of sickle cell disease medicines has reduced, especially hydroxyurea. The price has dropped by 60 percent in the last two years on the market. We are still advocating for it to go down to Shs500 or Shs400 per capsule. We, as a program, are doing a lot of advocacy and trying our best to ensure we provide free medicines in clinics we have set up,” Dr. Kiyaga said.
The high cost of the medication, coupled with low family incomes and limited care facilities for individuals with Sickle Cell Disease, have been identified by patients and caretakers as significant obstacles to improving survival rates and the overall quality of life.
According to Health Ministry data, around 20,000 children are born with the disease annually, with over 250,000 Ugandans currently affected by sickle cell disease.
Health experts estimate that between 50 to 80 percent of children with the disease die before reaching their fifth birthday, particularly in rural areas where access to proper care is lacking.
Retail pharmacies in Kampala currently offer hydroxyurea at prices ranging from Shs600 to Shs700 per capsule. Patients are required to take the medicine daily, as recommended by their doctor.
However, Mr. Ashiraf Ssebandeke, a sickle cell carrier from Bukomansimbi district and head of the non-governmental organization Action against SCD, said that people in rural areas have yet to benefit from the price reduction. His organization supports SCD patients in the eastern region.
“I haven’t heard of anyone buying hydroxyurea at that price of Shs600 [per capsule]. The price is between Shs900 to Shs1000 [per capsule] depending on the brand. Even in public facilities where people get it for free, the supply is not consistent,” he said.
Hydroxyurea plays a crucial role in preventing painful episodes of SCD and reducing the need for blood transfusions among patients with sickle cell anemia, although it does not offer a cure for the disease.
It promotes the production of normal blood cells, alleviating blockages caused by the abnormal shape of red blood cells in SCD.
But the medicine also comes with side effects such as nausea and weight gain.
Health experts currently consider bone marrow transplant, an expensive medical procedure available in foreign countries like India, as the only known cure for SCD.
Mr. Isaac Okello, a sickle cell advocate at Raising Hope International Friends (RHIF), also raised concerns about higher prices in certain areas, stating that “we have been getting cases upcountry where they are selling it (a capsule) at Shs2000, and it is hard to find in the market.”
He added, “The pharmacies in Kampala buy in bulk, and you cannot base [reduction in price] on them because their prices are a little lower. In community pharmacies, the price is higher. We thank the government because patients have been receiving the medicines for free at Mulago [Hospital].”
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