The horrendous cost of treating sickle cell disease

The horrendous cost of treating sickle cell disease

Observer staff reporter

Monday, January 28, 2019

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One in every 150 Jamaican babies will be born with sickle cell disease. Approximately 10 per cent of Jamaicans carry the S trait.

Cures are available, but they are costly. Sickle cell disease is a group of disorders that affects haemoglobin – the molecule in red blood cells that delivers oxygen to cells throughout the body.

Dr Monika Asnani, senior lecturer at the University of the West Indies’ (UWI) Sickle Cell Unit, explained in an interview with the Jamaica Observer last Thursday, ahead of the UWI’s annual Research Days to be held from February 6-8, that both bone marrow transplantation and gene therapy can treat this disease that 0.7 per cent of the population might have.

“There are cures available for sickle cell — bone marrow transplantation which is not available in the Caribbean yet, and [gene] therapy [which] continues to be investigated. With bone marrow transplantation one of the biggest things you need is somebody who matches you.

“Your bone marrow has to be a match. Currently we find that not even 15 per cent of people with sickle cell disease would have a match. So that’s one huge thing.

“After that, the sickle cell patient’s bone marrow would have to be totally killed by strong treatments, such as chemotherapy, in order to use the matching bone marrow,” Dr Asnani explained, adding that in the United States, where this treatment is free for citizens, the Government spends close to US$200,000 for each patient.

For gene therapy, Dr Asnani said, because the procedure is still in the investigational stage and is not available to the Caribbean, except for territories that are apart of larger colonies, it costs hundreds of thousands of dollars to access this treatment.

“I don’t know if I’d be incorrect to say that the team would have spent over US$1 million for the first person’s treatment. When it’s an investigation there are a lot of details to be attempted and so we are still learning. But if a company takes over that vector and produces that gene easily it could happen years from now.

“For gene therapy, your transplant comes from your cell. So if I had sickle cell disease my bone marrow is taken and a gene converted, or a corrective gene is inserted and I am given back my bone marrow.

“Why a body needs full match for anything is because the way our bodies are made we reject foreign things. So if I am to get a bone marrow from my blood sister it has a possibility of rejecting it.

“So that gets rid of having to put someone else under treatment, taking their bone marrow, and inserting it in you. The biggest thing is that you’re dealing with one person. In gene therapy, your own cells, a corrective gene is inserted and given back to you.

“When I went for my first patient’s gene therapy treatment it was amazing. If it becomes successful, and we’re all hoping -scientists, physicians, healthcare providers patients and families — that it will, then this is a therapy that has more potential of being taken into parts of the world where sickle cell disease has its highest burden — sub-Saharan Africa,” she said.

At the same time, Dr Asnani stressed that the costs have proven to be exorbitant for her patients to spend at a place where insurance is not available for them.

“There’s a lot we do to manage sickle disease. If we can get you when you are a baby and we work with the families that would be good. Our patients are living longer, but yet the lifespan is still about 20 years less than most countries where sickle cell is,” she noted.

Dr Asnani suggested that it could cost “a fortune” to establish bone marrow treatment and gene therapy treatment in the Caribbean.

“We would have to have haematologists who would be willing to do bone marrow transplantation on our patients. It requires a huge set-up. You can imagine, when you’re given chemotherapy to kill your existing bone marrow you need extremely sterile conditions, and all of those go into making that cost quite high.

“I have no doubt that we have the expertise here in Jamaica, whether we should be moving to gene therapy in the next few years might be a better bet because we are hoping that will be a cheaper process,” she added.

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