Decrease on the price of Sickle Cell medicine, stakeholders cry out

Dr Kiyaga Charles , the national sickle cell coordinator at the Ministry of Health says that Siclke cell has been with us and being a new area it has to be programmed

Decrease on the price of Sickle Cell medicine, stakeholders cry out

By John Kusolo

Dr Kiyaga Charles , the national sickle cell coordinator at the Ministry of Health says that Siclke cell has been with us and being a new area it has to be programmed . Any intervention is welcome. He made these remarks at the Uganda Sickle Cell convention 2022 held at Hotel Africana on June 23rd 2022 and will end on 24 June 2022

Sickle cell is a multi sectoral problem and solutions should be multi sectoral though the resources are limited. He also added that a policy on pre-marital testing and counselling will be put in place in collaboration with religious, cultural, and political leaders as a mechanism to decrease on new cases of sickle cell.

He also revealed that plans are also under way to include the medicine among government essential medical supplies so patients can access it for free in hospitals like anti-retroviral drugs.

The Ministry of Health has said it initiated talks with manufacturers and local vendors of the life-saving sickle cell medicine, hydroxyurea, to reduce the price by half and increase access.

Dr Charles Kiyaga, the national sickle cell coordinator, told this publication yesterday that plans are also underway to include the medicine among government essential medical supplies so patients can access it for free in hospitals like anti-retroviral drugs.

This development followed the increasing outcry of sickle cell patients that they cannot afford the medicine because of its high price. Hydroxyurea, the medicine which is taken daily is being sold at an average price of Shs1,700 per tablet, according to information from caretakers and patients.

“We are working with the manufacturers to see that they reduce the price. They have already told us that they reduced the price to Shs700. Now what we still need to do is to work with their vendors [in Uganda]. They said the selling price from their vendors is what pushes it higher,” Dr Kiyaga said. “So we are still discussing how to regulate the vendors so that the price doesn’t go that high. We want to see that each dose will be sold at around Shs800,” he added.

Dr Kiyaga said the rollout of free hydroxyurea has been limited by resources allocated towards the intervention. “We are trying a couple of approaches to ensure they get hydroxyurea free. But we are not yet there. We have just got a donation which we have distributed through the National Medical Stores. But the quantity is small. It cannot cover the needs of all patients,” he said. He didn’t reveal the exact amount. He added that Interventions should be evidence based not guess work.

Meanwhile, Dr. Deogratias Munube who has been working at the Mulago Sickle Cell Clinic for more than fifteen years says that currently, about three in every ten children admitted daily in the Acute Care Unit have a stroke.

“The background that many of us have is that stroke is for elderly people afflicted with hypertension, diabetes or a chronic disease,” Dr Munube said during an interview. “However, during my postgraduate studies, I saw many children with sickle cell coming in with stroke and this compelled me to research more about the condition.”

Munube who is also the only specialist handling sickle cell disease-related stroke at the country’s national referral hospital had found in an earlier study conducted in 2016 that the risk of stroke is highest during the first 10 years of one’s life and most prominent between five and 10 years.

Of the 100 children enrolled for the study, 7% suffered a stroke and majority of these had other health complications such as severe anemia, acute bacterial infection and pain crisis at the time of presentation.

“My initial work was to describe children who have sickle cell and how they present with stroke,” he explained. “I found that the commonest presentation was weakness in one part of their body and thus the inability to use that part such as the right upper limb or lower limb.”

This weakness is a result of the stroke blocking an artery that supplies blood to the brain, a condition scientifically called ischemic stroke. Consequently, the blockage reduces blood flow and oxygen to the brain, leading to brain damage.

Other presentations observed include abnormal behavior such as shouting or laughing unnecessarily, inability to respond to a parent’s call, drooling of saliva, drooping of the face and even blindness.

According to Ministry of Health statistics, 245,000 babies are born annually with sickle cell disease in Uganda. Other Speakers at the Uganda Sickles Cell Convention 2022 included Hon Dr. Charles Ayume, MP for Koboko and head of Health Committee in Parliament. The objectives of the convention were to share knowlegde, experience and best practises. The Platform brought together people from different backgrounds. The Sickle cell convention 2022 was organised by Raising Hope International Friends (RHIF), an organisation working with persons with sickle cell disease (SCD).