The Honorable Minister of Health,
The Quadrangle
Banjul.
Sir,
In commemorating world Sickle Cell Day, I take great pride in respectfully reminding you that there are many young Gambians affected by the disease suffering in silence yet have no one to fight for their cause.
Providing health care services to all Gambians is a requirement of the 1997 constitution. As the fight against the coronavirus spread; government, businesses, CSOs and individuals have undertaken unprecedented measures akin to a nation at war.
The country has been put into lockdown, schools, mosques and churches remain closed; and workers asked to sit at home. No economic cost has been too big to stem the spread of the disease. Coronavirus has inspired widespread drastic action and proving that it is possible to make dramatic changes and economic sacrifices to save lives.
But the lives of those suffering from the fatal disease called sickle cell anemia are not protected by the health ministry in charge of combating the covid-19. Nothing in the list of expenditure made so far from the D500 million approved by government and submitted to the National Assembly for scrutiny has appropriated enough resources to support patients with sickle cell diseases (SCD) or by procuring useful drugs including setting up specialized units within the hospitals across the country for treating SCD patients. Many of the thousands of Gambians with SCDs are poor and cannot afford the daily cocktail of drugs and painkillers to survive the disease.
Yet these are the most vulnerable people in our society and are at a higher risk of developing severe health complications given the high rate of deficiencies in their immune system with underlying respiratory illness associated with poor oxygenation.
Coronavirus infection and pneumonia is known to affect the respiratory system of its victims and can also induce sickling which is generally referred to as ‘crisis’. This happens when the flow of crescent-like blood cells block the flow of blood and oxygen in the body which can be very painful and sometimes last for a week or more.
According to health experts, “SCD is an inherited disease. Is a blood disease where children are born with it after inheriting a genetic mutation from each parent and when they have this, the red blood cells changed shape from a nice soft brown shape into a pointed curved-sickle-shape and this is very painful. It causes a lot of damage, blood doesn’t flow well into the blood vessels and organs are damaged”.
Fortunately, a new drug called ‘hydroxyurea’ has been refocused for the treatment of SCD and has been tested globally to boost hemoglobin levels of SCD thereby preventing the ‘sickling’ of the red blood cells.
The drug is widely available in rich countries but it is very very expensive and regrettably beyond the reach of thousands of thousands of SDC patients in poor countries like the Gambia. The Health Emergency Committee set up by government has the responsibility to protect the lives of all Gambians especially those that are the most vulnerable.
If it is possible to buy plastic buckets and pans at extraordinarily exorbitant prices for national assembly members, I do not see any reasons why they cannot include getting this new drug for distribution to affected patients as well as setting up dedicated units in all the referral hospitals across the country to curtail the deadly disease mostly affecting children in the country.
There is already a Sickle Cell Association with over hundred membership throughout the country but the lack of adequate resources has been hampering their work for the past seven years. There is a village called Tankular in Kiang Keneba in the Nuimis where 90 percent of the inhabitants have the SCD. That village is generally referred as ‘sickle cell village’ because of the high incidence of intermarriage among inhabitants which increase the spread of the disease.
The number of people suffering from the disease in the country is estimated to be almost 5 percent of the population. But because of bad publicity, many sufferers of the disease with middle-income family backgrounds prefer not to come forward for fear of stigmatization.
While the economic impact of this coronavirus pandemic is a concern to many, patients and families of those with SCD have been (and still) grappling with pain and trauma for some time now. The COVID-19 outbreak stands to exacerbate their challenges.
They have been suffering in silence for long and their plight can no longer be ignored. The number of children dying from sickle cell disease far outstrips the recorded deaths from covid-19 so far. Supporting these patients is both a moral and constitutional requirement. As they say “the live you save may be your own”.
Having sickle cell disease should not be a death sentence in the Gambia.
Written by: Morro Gaye
