MoH Launches Revised Guidelines for Management of Sickle Cell Disease

The Ministry of Health has launched revised national guidelines for the management and prevention of sickle cell disease, targeting high-burden regions like Lango and Acholi. The old guideline is expiring this year.

Sickle cell disease is more prevalent in the Lango, with Alebtong district having the highest prevalence of 24 percent, almost double the national average of 13.3 percent. Currently, the sickle cell centre of excellence at the Lira Regional Referral Hospital handles over 1,400 patients living with sickle cell disease.

The guidelines includes the integration of sickle cell in the non- communicable disease register for screening, integration of sickle cell in the new born register, a patient health passport for sickle cell warriors, integration of sickle cell in the longitudinal register for non- communicable diseases and a clinical chart through which longitudinal care will be offered to the patients.

During the commemoration of World Sickle Cell Day held at Mayor’s Garden in Lira City, Health Minister, who is also the Lira City Woman MP Dr. Jane Ruth Aceng Ocero said that the new guidelines are aimed at streamlining diagnosis, care, and community education to curb the country’s rising burden of sickle cell disease.

Dr. Aceng advised people intending to marry to test their partners to ensure that both are not sickle cell carriers to avoid having children with sickle cell disease.

Luo bit:

//Cue in: “Pe iya oko…

Cue out: … inwongo en okene.”

Translation: “Do not enter marriage before you are screened for sickle cell. If both you and your boyfriend are tested and found to be carriers, go back and critically think about it. If you want to produce a child to suffer, then go ahead because love is complicated, but if you want us to prevent this disease, please do not continue, stop there, because people are many people in this world, you will find another partner.”

She, however, issued a disclaimer saying, “I'm not saying people with sickle cell disease should not marry. Whether a man or woman who is a carrier should marry, but the most important thing is that his wife or husband should not be a carrier.” 

According to Aceng, the Ministry is working around the clock to ensure that the disease is controlled and those already affected receive the best care.

Luo bite:

//Cue in: “Kodi program ame…

Cue out: … jo Uganda duc.”//

Translation: “The same kind of program we have at Lira Hospital is also available in 13 other regional hospitals across the country, and then we have almost 200 smaller clinics to help people living with sickle cell, but that is not enough; we need more, and that burden is on me. I must care for every Ugandan.”

Dr. Charles Kiyaga, the National Coordinator for the Sickle Cell Program at the Ministry of Health, explained that since the disease burden is still high, the new guidelines will help to mainstream the care for sickle cell disease.

//Cue in: “It is still…

Cue in: … sickle cell disease.”//

Meanwhile, Dr. Andrew Odur, the Director of Lira Referral Hospital, warned against intermarriages within clans and a low level of screening, which he blames on the high prevalence of SCD in the Lango sub-region.

Luo bite:

//Cue in: “Wan otye onyomere…

Cue out: … ite cung atek.”//

Translations: “We are marrying within close relatives because our clans have broken away into many more clans which is a huge challenge that if not addressed, the number of sickle cell disease will keep increasing. Cultural leaders, this is the time for you to work hard.”

He also called for more vigilance and care, saying the facility is overwhelmed with patients demanding specialised treatment and regular blood transfusions.

Medical experts used the occasion to emphasise the importance of premarital screening and public awareness as key tools in fighting the disease.