ICPPA 2024: Uganda a model country in Africa's sickle cell fight

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In the African region, 38,403 deaths from sickle cell disease were recorded in 2019, a 26% increase from 2000.

The burden of sickle cell stems from low investment in the efforts to combat the disease.

Many public health facilities across the region lack the services for prevention, early detection, and care for sickle cell disease. Inadequate personnel and lack of services at lower-level health facilities also hamper effective response to the disease.

In an interview with Dr Charles Kiyaga, the head of the sickle cell program in Uganda’s health ministry at the just concluded ICPPA 2024 in Dar es Salaam, Tanzania, he said Uganda ranks high and acts as an example to the rest of the world in the fight against sickle cell disease.

Uganda has between 600,000 to one million sickle cell warriors with over 20% of the population having a sickle cell trait.

According to Kiyaga, the Ministry of Health has for the past ten years been doing newborn screening in the highly burdened regions and these are free in all government.

“We are able to test like 50,000 babies per year and we have maintained that for the last 10 years, that's why we have tested over 500,000 babies,” Kiyaga explains.

According to the latest survey, Uganda gets over 1.7 million births every year. According to Kiyaga, the 50,000 newborn screenings done every year are not even 5%, which creates fear for the results already achieved.

In an interview with Dr Charles Kiyaga, the head of the sickle cell program in Uganda’s health ministry at the just concluded ICPPA 2024 in Dar es Salaam, Tanzania, he said Uganda ranks high and acts as an example to the rest of the world in the fight against sickle cell disease.

He however says Uganda has set up all health centre IIIs and IVs in highly burdened regions plus more than 200 sickle cell clinics around the country.

“We have an integrated health system where people can check their status whether in government facilities or private hospitals, and we are planning to bring testing closer to people so that they can test in all regions,” Kiyaga adds.

He advised Ugandans especially those intending to get married to first mandatory test for sickle cells. He also advised new parents to do a sickle cell test in the first two months after birth to help them know the status of their children.

“We are the one country in Africa that has framed sickle cell properly at the national level. Other countries are having siloed things, spearheaded by NGOs and research groups. But we are the first country to have mainstreamed sickle cell within the ministry of health.” Kiyaga explains.

Children perform at the conference.

“We are organised. We have a plan posted there, a strategic plan posted and everything. So, we are recommended. We are seen as peer leaders. We are recommended for funding by the World Bank.” he adds.

Despite, the successes achieved, he called for more funding from both the government and donors to help them double the newborn screening from 50,000 to 500,000 annually from the 1.7m births.

Sickle cell disease is a global genetic disease of public health concern. It is estimated that between 300,000 and 400,000 affected babies are born each year globally.

The vast majority of these births occur in sub-Saharan Africa, which accounts for 75% of the global burden, where, without early diagnosis and treatment, most of those affected children die in early life, with reported excess mortality reaching up to 92% by five years.

In Uganda, 300,000-400,000 children are born with sickle cell disease annually however many of the children who are not on medication do not survive their 5th birthday. Having the most robust sickle cell disease program in Sub-Saharan Africa.

Inclusive fight

Eunice Owino, a sickle cell warrior from Kenya credits her parents for saving her life because she was diagnosed with sickle cell at the age of eight months.

She says this was the beginning of her fight against the disease because she received treatment on time.

Owino says when you have an early diagnosis, then it means your parents will start you on better care, and you need to have a doctor that you walk your journey with and all you need is to make sure that you do your monthly check-ups.

As a warrior, she advises fellow warriors on how to live a good life.

“When it's very cold, drink hot or warm water to make sure that you are hydrating enough. So, when you start knowing the nuggets of how to manage your own self, then you'll live longer. Take your medication as prescribed by your doctor. Caretakers or parents need to be on the lookout because, with a warrior, you can be very fine and happy and then in the next minute, you can be rushed to the hospital of the disease.” Owino advises.

She called on stakeholders to include sickle cell warriors in every step they are coming up with in the fight against sickle cell.

“We need to be part of the decisions made, whether, in the development of our drugs or anything, it’s us who feel the pain. They know the science, we know the pain, they have the money, and we are the warriors. Let us know what is coming before it is out, we can advise them, and we are useful in every development” she leads

According to WHO Africa, Nigeria is the most heavily burdened country with sickle cell followed by DR Congo, Tanzania, and then Uganda which simplifies the need to double the sickle cell fight in Africa.