Sickle cell patients at Jinja Regional Referral Hospital have gone about four months without hydroxyurea, a key medication used to manage the disease, forcing some patients to buy the drug themselves or go without treatment.
Hydroxyurea helps reduce painful crises and other complications in people with sickle cell disease by increasing foetal haemoglobin levels in the blood.
The concerns were raised on Monday during a visit to Jinja Regional Referral Hospital by Parliament’s Health Committee to assess the state of health services at the facility.
Dr Alfred Yayi, a Senior Executive Consultant at the hospital, said the sickle cell clinic at Nalufenya has about 1,500 registered patients, with up to 200 children attending on a busy clinic day. He said the hospital had not received hydroxyurea for about four months despite the drug being critical in managing sickle cell disease.
‘Hydroxyurea is a life-saving drug for our sickle cell clients,’ Dr Yayi said, adding that the shortage had shifted the burden to patients who must either purchase it or go without treatment.
He said patients who cannot afford the medicine risk a decline in their quality of life, while the hospital continues to engage National Medical Stores (NMS) over the supply.
Senior pharmacist at Jinja Regional Referral Hospital, Matthias Mayanja said the hospital requires about Shs4 billion annually to meet its medicines and supplies needs but currently operates on a budget of about Shs2.3 billion. He said the shortage had affected several medicines, including hydroxyurea, which had been out of stock for about four months.
Mr Mayanja said the hospital previously procured about 100 packs of hydroxyurea every two months using its medicines budget, but the quantity was insufficient for the number of sickle cell patients.
He said the drug was later placed under an NMS programme, meaning the hospital was no longer required to pay for it, but supplies have not been delivered consistently. He said the hospital had not received hydroxyurea in the previous two supply cycles, contributing to the prolonged stock-out.
Mr Mayanja said the hospital had contacted NMS over the shortage and was told that the medicine was not available at the time medicines were being packed for delivery.
Dr Timothy Batuwa, the Jinja South West MP and a member of Parliament’s Health Committee, said government policy requires hydroxyurea to be procured and provided free of charge at regional referral hospitals.
Dr Batuwa said the Health Committee had taken up the matter and would engage NMS management and, if necessary, the manufacturer to ensure the medicine is supplied, noting that Busoga is among the regions heavily burdened by sickle cell disease.
The committee’s deputy chairperson, Mubende MP Grania Nakazibwe, said the government should consider changing the supplier if the current arrangement cannot meet demand.
‘We cannot afford to lose patients just because the supplier whom they chose or who qualified cannot produce to their expectation,’ she said.
However, speaking to the Daily Monitor on Tuesday, NMS Principal Public Relations Officer Ms Sheila Nduhukire disputed the claim that the manufacturer had failed to supply hydroxyurea.
‘NMS has hydroxyurea in its stores, and the manufacturer has not in any way failed to supply the medicine to NMS,’ Ms Nduhukire said.
She also asked the hospital to clarify whether hydroxyurea had been included on its procurement plan.
The NMS response raises questions about whether the shortage at Jinja Regional Referral Hospital is linked to national availability, facility-level procurement planning or distribution.
Sickle cell burden
Uganda records an estimated 20,000 to 25,000 babies born with sickle cell disease each year, with nearly half reportedly dying before their fifth birthday, according to the Ministry of Health records.
In Busoga, about 5,000 children are estimated to be born with the condition annually, according to the Busoga Health Forum.
The Ministry of Health has included hydroxyurea on Uganda’s Essential Medicines List as part of efforts to improve treatment and management of sickle cell disease.