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Advancing care for sickle cell disease

Today June 19, Uganda will join the rest of the world to commemorate the world sickle cell day.

This day is dedicated towards promoting public knowledge and raising awareness about the sickle cell disease, while highlighting the challenges faced by the people living with the condition. The global theme is “10 years of global awareness, advocacy and education.”

On December 22, 2008, the United Nations General Assembly adopted Resolution A/63/L63 that recognizes sickle cell disease as a public health problem and “one of the world’s foremost genetic diseases.”

This resolution was a call to action for member states and the organizations of the United Nations system to raise awareness of sickle cell anaemia on June 19 of each year at international and national levels. In Uganda, this day will be commemorated under the theme “Advancing care for sickle cell disease.”

The focus on care is an attestation of complications associated with this lifelong condition. Sickle cell disease causes episodes of severe pain, acute illness and progressive organ damage. This results from the sticky and stiff red blood cells which clog tiny blood vessels.

Most of the sickle cell manifestations can easily be controlled. Sadly, the interventions are not accessed by the most vulnerable groups, especially children under five years, adolescents and pregnant women. The biggest challenge to date is access to accurate diagnosis.  

In addition, the availability of adequately trained health professional and specialized health care facilities are insufficient. This situation is further compromised by the access to effective medicines, vaccines and safe blood transfusions. We have achieved significant milestones like starting the haematology oncology fellowship in Mulago by Baylor College/Texas children’s Hospital to train adult haematologists to offer specialized care to sickle cell patients.

In Africa, Uganda has the fifth highest sickle cell burden with over 25,000 babies born every year. Up to 90 per cent of those born die before their fifth birthday. The survivors suffer end-organ damage, which shortens their lifespan.

Sickle cell crises interfere with a patient’s life, especially regarding education, work and psychosocial development. This situation is aggravated by limited and inaccessible formal social support structures to aid patients and families cope better with the psychosocial burden of sickle cell disease. This is further coupled with stigmatization and discrimination of people living with sickle cell disease, causing isolation from family and society.

Through a research collaboration of Uganda Sickle Cell Rescue Foundation and Clarke International University, stigma has been identified as a major issue affecting care and quality of life for persons living with sickle cell disease in Uganda.

In one study carried out in Lubaga division, we have learnt that 68.7 per cent of the participants indicated that they would not marry someone with sickle cell disease. In another study carried out in secondary schools, 54.4 per cent of the students interviewed in Butambala district indicated that their peers with sickle cell should not have equal rights.

This highlights the need to educate and sensitize the community about this disease with a focus on the general conceptualization to address stigma.

To date, screening and associated genetic counselling is the only prevention strategy available to reduce sickle cell in Uganda.

Through screening, a person can find out their genotype which information is crucial during selections of partners. Persons who carry a sickle cell gene and normal haemoglobin gene, also known as carriers, pose the biggest challenge. It is our collective responsibility to take the sickle cell screening test, which is now freely available in most government facilities.

Sickle cell testing is now also available for our new born babies. This service can be accessed at most major facilities across the country. The sad reality is, the majority of our population is neither aware of the service nor understands the value of early diagnosis.

When babies are identified early, they can start on the necessary care and treatment options to ensure that they have a good quality of life.

Bone marrow transplant has been the only cure available. In Uganda, Hydroxyurea, the only disease-modifying drug in sickle cell, is not yet available for our patients. This medication is not available in the government supply chain, meaning that patients have to buy it.

Our appeal is for the ministry of Health to fast-track the process to avail this essential medicine to persons living with sickle cell disease.

As we commemorate this year’s world sickle cell day, we urge the ministry of health to declare sickle cell as a major disease burden in this country.

In addition, we request the ministry of Health to prioritize sickle cell care and management through availing medications and vaccines to sickle cell patients. We call upon religious leaders to support this initiative through promotion of sickle cell testing and screening before marrying couples.  

The author is a person living with sickle cell, working with Uganda Sickle Cell Rescue Foundation.

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