Pain, trauma of sickle cell patients must end

A 26-year-old Purchasing and Supply student in one of the country’s technical universities mounted the podium to narrate her ordeal some years past as a person living with the sickle cell disease. The occasion was the formal launch of a major partnership between the government and one of the giants in global medicines, Novartis, in Accra last Wednesday.

The auditorium for the event, before she appeared, was one of smiles and joy until she began painting a graphic picture of her harrowing experience. Suddenly, the entire hall went silent to the extent that the sound of a pin drop could be heard.

Some of the participants were teary while others who held back their tears, listened with rapt attention in order not to lose a word of the story being told.

As the story unfolded, it painted a helpless situation until she broke the news of what had kept and relieved her of the excruciating pains and the state of confusion and despair that the dreaded disease, sickle cell, brought on her.

Thousands of people in the country are going through this similar ordeal. Their situations have brought, in many instances, untold hardships to their parents and families. In such instances, the rich and poor all suffer the same level of disruption because when one least expects, that is when the disease strikes and that disrupts every activity. This is because patients need all the attention to emotionally soothe their pain.

At the event, it was revealed that up to an average of about 10 per cent of the 15,000 newborn babies in the country every year, die before the age of five. Those who are able to survive have their lives disrupted in many ways because when they are in crisis, they are forced to abandon everything else for no fault of theirs. Marriages have broken down because parents who once lived happily but unfortunately have their child or children diagnosed to be having the sickle cell disease, have the joy in living together truncated and in some instances, divorce sets in.

It is against this background and more that the Daily Graphic finds the intervention planned by the government to roll people living with the disease onto the National Health Insurance Scheme (NHIS) as not only refreshing, but a heart-warming development.

According to the government, it is working with partners to ensure that people living with sickle cell diseases (SCDs) have access to Hydroxyurea, a more efficient drug for treatment, in the country through the NHIS.

The Vice-President, Dr Mahamudu Bawumia, who announced this at the ceremony, said: “We have the opportunity as Ghana to be the first African country to ensure that access to Hydroxyurea and its associated treatment costs are granted through the NHIS to every Ghanaian whose doctors and nurses prescribe this medicine for them.”

We commend Novartis for the partnership with the government because it provides the opportunity for Ghana to become the first African country to commit to offering the global standard of care for its people living with the sickle cell disease.

The partners are to work together on screening and diagnosis, treatment and disease management, and elevating basic clinical research and scientific capabilities.

Ghana is noted for taking the lead in many of such programmes meant to change lives. We, therefore, express the hope that once Novartis has played its part of the bargain, the government too will work tirelessly to play its role.

The smiles on the faces of people living with sickle cell diseases must not be truncated through inaction. Their pain and trauma must end. The agony and stigma must be no more. It is our prayer that we all as citizens will back this laudable initiative to make it succeed in our own interest.