The Sickle Cell Disease (SCD) family is celebrating the first anniversary of being able to access hydroxyurea, one of the medication that greatly helps control the impact of sickle cell disease on patients, which was put on the national health insurance scheme (NHIS).
Last year at the Memorial Service of the late Professor Kwaku Ohene Frempong, an SCD expert who devoted almost all his career and resources to the disease, Vice-President Dr Mahamudu Bawumia announced that patients could now get the drug for free using their NHIS card.
That announcement was received with great joy because not only was the drug, nicknamed ‘wonder drug’, a great medical intervention to the incurable sickle cell anaemia, it also meant that patients and caregivers did not have to worry about the financial cost.
While the drug is one of the key and significant interventions in the management of SCD, patients still struggle to access it with their NHIS card, pushing those who cannot afford to buy it to sometimes skip their medication, a situation that threatens their health.
While general medical care for patients who suffer sickle cell anaemia, has greatly improved, the administration of Hydroxyurea, has significantly reduced the frequency of painful episodes and has thus been nicknamed the wonder drug.
It works by helping to prevent formation of sickle-shaped red blood cells, thereby decreasing the rate of painful episodes by 50 per cent as it raises the level of HbF and the haemoglobin level if only it is taken when and how it should be.
Hydroxyurea was first tested in SCD in 1984, but approved by the Food and Drug Administration (FDA) USA, for treating adults with the condition in 1998. In 2017, the FDA included children on the list.
The Food and Drugs Authority officially approved it for use in both adults and children in 2018, making Ghana the first country in Africa to commit to offering the global standard of care for people with SCD.
Until the introduction of the drug, it was quite a challenging time for both patients and caregivers dealing with the complications of sickle cell anaemia, summed up with the often bouts of excruciating pain triggered by one crises or the other.
Maame Yaa Korantemaa Amaniapong said her now 15-year-old son who was put on the drug in 2019 has seen a remarkable improvement in his health.
“Our visits to the hospital with crises have been very minimal. He has not had any blood transfusion since he was put on the drug and generally actively participates in sports activities.”
“Before then, I was apprehensive to let him take part in any physical activity such as playing football or running around.
Almost every three months, we had to psyche ourselves up that he was going to have blood transfused as his HB level would drop to very worrying levels.”
“Apart from the routine clinic visits, we have barely reported sick at the hospital. I know it’s by God grace, but also because of the wonder drug, hydroxyurea.
All I need to do is to ensure that he takes his medication religiously, drink a lot of water to keep hydrated and eat healthily,” Maame Korantemaa said.
This is also the testimony of most patients on the drug.
A prescription-only drug, prescription is given at the hospitals that run SCD clinics – the Korle Bu and Komfo Anokye Teaching Hospitals as well as the Greater Accra Regional (Ridge), Tema General and 37 Military Hospitals.
It can be purchased at a few pharmacy shops which also serve customers who present their NHIS cards and strictly by prescription.
Unfortunately, most patients are not able to take their medication as regularly as they should because the supply is rationed at most of the clinics.
Depending on the clinic appointments, a patient usually is given the prescription to cover three months, however at the pharmacy of these clinics, the drug is rationed to ensure that almost all the patients at least have to last a month.
This means that monthly, patients living at other places have to travel down to the designated areas to refill their prescription.
Also, similar to the challenges users of the NHIS card generally face, patients are not able to conveniently and easily access the drug at the private pharmacy shops.
One will be lucky to have a month’s supply.
The explanation given by some of these service providers is, that the drug is expensive and because there are delays in receiving the claims from the NHIA, they are careful not to have much money on that bill.
For instance, depending on his or her prescription, a patient could spend between GH¢250 to GH¢370 a month on the medication.
This situation leaves patients with no option than to skip the medication until they are able to get served again on the NHIS.
Make NHIS card work
The availability of hydroxyurea is the biggest intervention the government has made in bringing some relief to SCD patients. However, the frustrations may overshadow this.
It is therefore, important for the system to be made more efficient and effective so that SCD patients can live, that the drug will end the death sentence that was tagged to the condition in the past.
This the nation owes to the legacy of Prof. Ohene-Frempong, who before the country adopted the drug, strongly believed that it was the way to go and was thus prescribing to his patients in Ghana as part of his regular outreach programmes.