By KT Reporter
A number of sickle patients enrolled in the sickle cell clinic at Lira Regional Referral Hospital (LRRH) are going without the crisis-management medication- Hydroxyurea.
Hydroxyurea is a disease-modifying medication for sickle cell anemia that reduces painful crises, hospitalizations, and acute chest syndrome by increasing fetal hemoglobin (HbF) through making red blood cells larger, rounder, and more flexible thus preventing them from sickling.
Record shows at least 1,500 children and young adults from across Lango Sub region are enrolled into the sickle cell clinic. Dr. Andrew Odur, Acting LRR Hospital Director says not all of these people have been enrolled on care.
Early this week, the hospital received 200,000 doses of hydroxyurea to boost treatment and care for sickle cell patients.
Lango sub region has the highest sickle cell disease incidence in Uganda with a prevalence of 21 percent compared to the national prevalence of 13 percent. Nationally, in a year, an estimated 20,000 Ugandan children are born with sickle cell disease but without timely diagnosis and care, up to 80 percent will not live to see their fifth birthday.
Dr. Odur disclosed that at the time, the hospital has established a wellness clinic and lab to support early screening and prevention of disease in the region.
On Tuesday, the Ministry of health launched the national initiative for scaling up the prevention and management of sickle cell disease at a function held in Lira City. The launch was a commitment by the ministry and other stakeholders to exploring innovative pathways for sustainable financing, leveraging sovereign leadership, to grow in private investment, and align resources for long-term health sovereignty.
While presiding over the launch, Health Minister Dr. Jane Ruth Aceng Ocero who is also the Lira City Woman MP said the call is not just for funding.
“I am also using today to direct the Director General of Health Services to appoint a national task force to draft a policy framework for the prevention and treatment of sickle cell disease; to make sickle cell disease not a sentence of suffering, but a story of hopes,” she added.
The Minister urged community members and young couples to embrace early screening as a preventive measure for the disease. So far 7,500 learners from 12 out of 22 learning institutions across the Lango Sub region have been screened in the past few months.
At the same event, the Minister also launched the different task forces, citizen-led to strengthen government’s efforts against sickle cell disease, and the wellness center clinic laboratory at LRRH to support Lango sub region.
Dr. Odur believes that these initiatives will help in early diagnosis and treatment even at lower health facilities.
Acknowledging the disease’s high prevalence in Lango, Geoffrey Ocen Abia, a clan head (Awitong) and Deputy Minister of Health under Lango Cultural Institution announced that the institution is coming up with a by-law which forbids people from marrying when they are not screened for sickle cell disease.
Uganda was the first sub-Saharan African country to have a national sickle cell prevalence data and for optimal use of limited resources. The health ministry initiated targeted newborn screening in high-burden regions.
Currently, sickle cell clinics have been set up in over 100 public health facilities which are also participating in newborn screening across the country, and sickle cell programs have been mainstreamed within the non-communicable disease department.
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