In a bid to curb the rising incidences of Sickle Cell disease in Uganda, the Ministry of Health is calling for the adaptation of Sickle Cell disease screening to all partners before marriage just like it is done for HIV/AIDS.
This comes amidst a surging percentage of 25% Sickle Cell disease presence in Uganda, with over 25,000 new babies born annually with the life threatening illness with 80% of these dying before annually due to improper management.
It was a sombre moment as Uganda lit candles remembering children and persons who have lost the battle to Sickle Cell disease.
Lydia Byuma, a mother of three children, also lit a candle for her deceased son Ibrahim Matovu who died aged 29 years after defying the odds that most children die before the age of 5.
Byuma’s son succumbed to kidney failure a condition that may have been triggered by the sickle cell disease. She says it is devastating that persons with sickle cell can not access proper medicines.
Byuma’s pain was palpable as she explained that, “In Mulago, we only get Panadol and Follic Acid. Hydroxyurea, which we still have as a wonder drug for Sickle Cell patients is expensive. 100 tablets go for 100,000/-”
Philip Wabulya shared a story of sacrifice as he put everything on the line to ensure his son had a bone marrow transplant to prolong or save his life.
Wabulya said that he took his son for the transplant in India where the estimated medical bill would be $40,000. The family ended up paying $100,000.
Christopher Ndugwa who has treated most persons with Sickle Cell spoke for parents who are pained that the government has failed to integrate Sickle Cell disease management in the mainstream. Many of the drugs cost is still unmanageable for the average Ugandan.
Ndugwa said the hope of every parent with a child with the disease is that Hydroxyurea will be included in the government essential drug list.
Susan Nabadda, director of Uganda National Health Labaratory, said they are forced to use the available drugs to treat patients for now.
According to information available from World Health Organization (WHO), Sickle Cell Anaemia is a major genetic disease that affects many countries in Africa. Sickle cell anaemia prevalence in many of these countries is between 20% and 30% while in some parts of Uganda, it is as high as 45%
To curb these the ministry is opting for compulsory screening of all partners before marriage to reduce on the number of children born with the disease.
Ministry of Health Permanent Secretary Dr Diana Atwine said that,”If we test, no babies will be born with sicklecell, this way we shall reduce infant mortality because sickle cell contributes 30% of infant mortality.”
A Sickle Cell trait test costs Shs80,000 at a private facility in Kampala. The Uganda National health laboratories in Butabika is currently carrying out free sickle cell testing