How sickle cell is turning back the clock of economic development

By Ashiraf Ssebandeke  

Yesterday, June 19, was World Sickle Cell Day. It is celebrated to raise awareness about sickle cell disease.

Sickle cell is an inherited blood disorder. The burden of sickle cell is not only on health as it is portrayed, but also the on economy of the country. The recent surveys revealed that 0.7% of children (133 of 1,000) in Uganda have sickle cell disease.

Any child with sickle cell disease will have to take daily preventive dosages of folic acid, antibiotics, multi-vitamins and weekly dosage of antimalarial until they are five years of age. By the time the child make five years of age going by the market value of the above drug, the parent would have spent over sh1m only on daily preventive drugs. That cost excludes charge for medical investigations, cost of diagnostic procedures, drugs, blood transfusions, transportations, surgeries and other hospital services. It is estimated that 20,000 babies are born with sickle cell every year in Uganda.

Since March this year ‘Joan' not her real name a 25 year lady living with sickle cell disease has been admitted six times in three different hospitals in Kampala. The hospital admissions have cost her over sh15m excluding other costs which were not part of the hospital bill. The sickness has crippled her work and family members who have to take care of her. Despite this spending, Joan and her family could not engage in any income generating activity.

Joan is lucky that she has hospitals in her proximity and at least can access medical treatment. There are many cases of people living with sickle cell disease, who have medical bills beyond their limit. Some who cannot afford to go to different hospitals like Joan are forced to stay home and resort to herbs for treatment, which result into premature deaths and physical disabilities. Those who get admitted and fail to clear the bills end up being held in hospital till they clear the bills with each day attracting fines.

A number of parents with children having sickle cell disease have lost their jobs as they could not balance work and frequent hospitalisation of their children. This has affected the economy as it loses the productive human resource which would have contributed to the economic growth to take Uganda to a middle income country by 2019. Poor health status of children with sickle cell disease could also reduce caregivers' employability and worsen the socioeconomic burden of families.

The absence of nationwide new born screening also makes early diagnosis not easy and expensive. A colleague narrated to me how they had to spend a lot of money on investigations for unexplained pains of their baby. It was after a number of visits to different hospitals and clinics that she was told that their daughter had sickle cell. Had there been a new-born baby screening facilities, the child would have been diagnosed before these traumatising and expensive events.

It is important to note that in addition to the figures reported, the health care for patients with sickle cell disease are hidden, non-transparent costs and uncompensated services. These include unemployment, frequent calls to consult moreover not factored into their calculations.

Quality care for patients with this disease is extremely expensive, not easily accessible and chronic in nature. Unless a universal cure is available, the disease will continue to be expensive with chronic expenditure.

If Uganda wants to attain a middle income country status by 2019 and also achieve vision 2040, it should invest in prevention, control and management of sickle cell disease to cut on the health expenditure.

The writer is the public relations officer of the Sickle Cell Network Uganda and the country representative of the African Sickle Cell News Nigeria