Advertisement

Medical officer reignites discussion on cure for sickle cell
Medical officer reignites discussion on cure for sickle cell

Medical officer reignites discussion on cure for sickle cell

A Consultant Paediatric in Hematology-Oncology, Dr Lawrence Faulkner, has reignited the discussion on the cure for sickle cell.

In Ghana and other parts of the world, the disease which is one of the world’s most devastating diseases, has brought pain to many homes and broken many relationships.

According to Dr Faulkner, who is also a specialist in Stem Cell Transplantation, the medical procedure used in curing leukaemia was also a solution for curing sickle cell, stressing that, although the procedure was not new, its application for the cure of sickle cell was at its nascent stage in Africa.

“In the West, it is primarily used for leukaemia but in countries like Ghana where there is a lot of sickle cell, the procedure can also be used to cure sickle cell disease (SCD) because you essentially substitute the bone marrow that produces red cells that have sickle with the bone marrow that produces normal red cell,” he told the Daily Graphic.

Currently, the medical interventions for curing the disease are  Bone Marrow Transplant and  Gene Therapy which cure it and Hydroxyurea which limits symptoms.
Experts say bone marrow is the substance in the centre of the bones that produces red blood cells. A person with SCD has bone marrow that produces red blood cells with defective haemoglobin S. But if that bone marrow is replaced with healthy bone marrow, a person's body may start to produce normal haemoglobin.

Procedure

With growing a success in hematopoietic stem cell transplant, Dr Faulkner said for the procedure to be successful, it required matching bone marrow from siblings or parents.

The procedure involves giving patients with sickle cell disease stem cells obtained from a donor in an effort to grow normal red blood cells.  If successful, their bone marrow will be taken over by the donor’s red blood cells and they will be free from sickle cell disease.  

Dr Faulkner, the Founder and Advisory Board Coordinator of Cure2Children Foundation, an Italian non-governmental organisation (NGO) that supports children with cancer and blood disorders, said currently, the treatment was available in the United States of America (USA) and Europe costing more than $120,000 but could cost about $12,000 in Ghana because the more the patients, the less the cost.

The World Health Organisation (WHO) describes the SCD as a genetic blood disorder that affects the haemoglobin within the red blood cells.

Experts say a person who has SCD can become more prone to infections because the damaged cells eventually clog the spleen.  A severe attack, known as sickle cell crisis, can cause pain because blood vessels can become blocked or the defective red blood cells can damage organs in the body.

WHO figures

According to the WHO figures in Ghana, 18,000 babies are born each year with SCD, with almost 50 per cent of them dying before age five.

Among some of the health problems associated with SCD are damage to the lungs, heart, kidney, liver and eyes, stroke, leg ulcers and difficulty in breathing.

Research shows the recurrent pain and complications (crisis) caused by the disease can interfere with many aspects of the patient’s life, including education, employment and psychosocial development.

However, according to the National Institute of Health (NIH) of the US thanks to advances in treatment, the life expectancy for Americans with SCD has dramatically increased over the last decades—from about 14 years in the 1970s to 40 to 50 years, and longer, today.

However, Dr Faulkner who is in Ghana to explore the possibility of establishing sickle cell treatment in the country, said the country would need “multiple sickle cell centres because ideally, for every 3 million people, there should be a centre.”

He said C2C Foundation had been able to establish similar facilities in India and Pakistan that were making progress with the Indian facilities almost independent of the foundation.

At a meeting with the Ministry of Health last Wednesday, Dr Faulkner and his team made a passionate appeal for government support to subsidise funding for the treatment in Ghana.

“If we can find a proper place to do it with proper guarantees of quality assurance. The whole programme need a conducive environment for the transplant, nurses and other medical officers properly trained.

“Those are the bottlenecks but if we start, we have to do it repeatedly, ideally, about 20 to 30 patients annually, it will be professionally and financially sustainable. The bottom line is money,” he said.

However the Deputy Minister of Health, Mr Kingsley Aboagye Gyedu, said the government was excited about the prospects of establishing such centres in Ghana but could not provide subsidies for treatment given the state of the economy.

He, however, said apart from financial support, the government was open to providing any other support possible to help the foundation work successfully in Ghana.

The Director of Policy, Planning, Monitoring and Evaluation of the Ministry of Health, said the country’s financial difficulties even made it impossible to screen children for sickle cell at birth.

Contributing to the discussions, Prof. Solomon F. Ofori-Acquah, the Dean of the College of Health Sciences of the University of Ghana (UG), said the recently opened UG Medical Centre was open for collaboration with the foundation with the first step being the provision of space at the centre.

True stories and cure

In Ghana, many relationships heading to the altar had to be stopped because the partners found out too late that they were carriers of sickle cell—AS/AS or AS/SS.

“It was a painful experience. Two years ago, we were preparing to get married when the counsellors demanded as part of the process that we do the Sickling test, it turned out we were both AS. We had to go our separate ways because of the dangers and the potential pain it could bring later if we ended up with a child with SS Sickling status,”Ms Mariette Gyan recalled.

A beneficiary of hematopoietic stem cell transplant, Ms Jennifer Nsenkyire, who underwent a successful transplant in November 2010 in the US, told the Daily Graphic that she had been totally cured from the disease that caused her so much pain, getting her admitted for two weeks in hospitals every month.

Ms Nsenkyire who was the first adult to undergo a successful transplant through stem cells donated by her mother under the watch of the NIH said: “I was blessed to undergo stem cell transplant in 2010 and by God's Grace got cured of sickle cell disease (SS). It'll be seven years come November 18 and I am amazed at how my life has changed. Thank God for this blessing,” she said.

Cautious optimism

While news of a cure sounds refreshing to many, Dr Sefakor Enam Bankas, the Founder of  Sickle Life, a SCD advocacy group, called for cautious optimism.

“There are a number of new interventions in the management of SCD, from Bone Marrow Transplant to Gene Therapy which cure it and Hydroxyurea which limits symptoms.

However, we need to be cautious in our optimism especially for people in Sub-Saharan Africa, Ghana, specifically,” she said.

Explaining her stance, she said most of those options were neither available, accessible nor affordable in the country or most parts of Africa and where they were available most people could not afford the thousands of dollars nor have a bone marrow donor required to accomplish the process.

“We are still grappling with basic things such as access to hematologists/paediatricians in this country to appropriately manage persons living with sickle cell, thus things such as strokes that can be relatively easily prevented are still common.

Connect With Us : 0242202447 | 0551484843 | 0266361755 | 059 199 7513 |