By Ssebandeke Ashiraf
Akiror Kevina was a seven month old with sickle cell disease from Odokurun village in Amuria District. She suffered anemia, one of the challenges caused by sickle cell disease during the Covid-19 lockdown and her parents couldn’t transport her to the hospital for blood transfusion. By the time the ban on public transport was lifted she had graduated to acute anemia. On Monday June 8, Akiror was rushed to Katakwi General Hospital where she had been attending the sickle cell clinic. Due to her deteriorating health condition she was referred to Soroti Regional Referral Hospital. Unfortunately, she passed on while still in the ambulance at Katakwi Hospital. Her parents lost their daughter who was the third child in the family to die due to sickle cell related complications.
As Uganda joins the rest of the world on 19th June to commemorate World Sickle Cell Day, Covid-19 pandemic has had serious negative effects on people living with sickle cell disease. Many are unable to access the required treatment, honor doctor appointments and get drug refills.
Akiror’s story is not in any form different from that of Barasa in Busia who used to receive treatment from Tanaka Hospital in Busia, Kenya. Since the closure of Uganda-Kenya border he hasn’t been to hospital which has resulted into deteriorating health.
Being immunosuppressed, people with sickle cell disease are at high risk of being infected by corona virus.
SCD Marshall Plan
We call upon people living with sickle cell disease and their families to adhere to Covid-19 guidelines from relevant authorities to stay safe during this period of uncertainty. The fear of getting a painful crisis and failing to access the health facility sends many into panic. This anxiety, stress and the pain all have to be managed in a way that is going to keep you out of hospital by all means.
Before the outbreak of Covid-19, Uganda had registered progress in sickle cell awareness, treatment, research and diagnosis. If nothing is done to salvage the situation we may have the clock turn anticlockwise.
It’s high time we have a Sickle Cell ‘Marshall Plan to consolidate the gains and drive progress before its too late. According to Uganda Sickle Cell Survey of 2015, 0.78% of Ugandans have sickle cell disease. World Health Organization predicts that if nothing is done the number of people living with sickle cell disease will increase by the year 2030.
As we navigate through this period of corona pandemic sickle cell messages need to be relayed alongside Covid-19 to keep the public aware of sickle cell
The rising cases of sickle cell is not only a health challenge but affect the economic and social sector of the country.
A Sickle Cell Marshall Plan needs to prioritize access to medical services for individuals living with sickle cell disease in all parts of the country. This will ensure that there are sickle cell clinics in all health units from health centre IV to referral hospitals. During this period of lockdown most patients travel distances of more than 100 kilometers to access sickle cell clinics. This has negatively affected their lives. If there was sickle cell clinics everywhere we wouldn’t have faced that challenge.
The plan will have to stress building community awareness and empowerment as foundation for working on challenges affecting each community. Communities need to be empowered to be at the centre of solving problems affecting them.
Research should be a major component to help people living with sickle cell disease stay healthy during the period of corona virus and post covid -19 era. Research that focus on using locally available resources to come up with drugs for treatment and eventually a cure needs to be at the apex of the Sickle Cell Marshall Plan.
As we navigate through this period of corona pandemic sickle cell messages need to be relayed alongside Covid-19 to keep the public aware of sickle cell.
If we don’t develop the Sickle Cell Marshall Plan now we shall have a post Covid -19 era with more new cases of sickle cell, rise in deaths, and poor quality of life. We need to act now to save the gains of the more than 20 years of sickle cell advocacy in Uganda.
Ashiraf is Executive Director, Action Against Sickle Cell Disease, Uganda
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