In this MD Newsline exclusive interview with pediatric hematologist/oncologist Dr. Ahmar Zaidi, we discuss how funding and research compare for sickle cell disease and cystic fibrosis. We also discuss how to increase awareness of and funding for sickle cell disease.
How do sickle cell disease funding and research compare to the funding and research for other diseases?
Dr. Ahmar Zaidi:
“I’m sad to say that it compares very poorly. In 2017, a colleague of mine named J.J. Strouse analyzed the differences between sickle cell disease and cystic fibrosis NIH funding and foundation-level funding and looked at the number of patients affected by each disease. Of course, with cystic fibrosis, we have about 30,000 patients in the United States. With sickle cell disease, we have about 100,000 patients in the United States.
When we divide up the amount of federal and private funding, we see a huge discrepancy on the order of $800 total spent per patient with sickle cell disease and $10,500 total spent per patient with cystic fibrosis. Now, that disparity plays out obviously in progress. Right? At the same time that we only had one drug for sickle cell disease, there were almost a dozen for cystic fibrosis.
We’re now thankfully up to four FDA-approved drugs for sickle cell disease, but the disparity, of course, is going to be driven by the disparity in funding.”
How do you think we can increase funding for sickle cell disease?
Dr. Ahmar Zaidi:
“To me, it always comes down to funding. So the question we should be asking is, ‘why is there a lack of funding?’ Right? And really, the reason why there’s a lack of funding is that sickle cell disease is a disease of Brown and Black communities. We have to generate awareness around what sickle cell disease is, and we have to generate compassion around it.
Historically, the context of sickle cell disease is you have Linus Pauling, who wins a Nobel Prize for the molecular defect definition of sickle cell disease, and 10 years later, he’s in the newspaper talking about tattooing people with sickle cell disease or those who carry the gene on their forehead in efforts to eradicate them.
So you have a population that carries a lot of stigma with this diagnosis. So I think it’s been problematic getting open, ongoing conversations going, but now’s our chance to begin and really generate some real awareness around this disease and how patients with sickle cell disease are human beings. They have jobs, they go to school, and they’re athletes. These patients are human beings who contribute to society.
One of the things that’s been damaging to sickle cell disease is labeling it as a disease of pain. Because what you can surmise from that assumption, then, is that if an individual with sickle cell disease is not having pain, they’re doing well. And that’s a lie. We know that whether or not patients with sickle cell disease have pain, they’re dying 20 to 30 years younger than they should be.
We need to start thinking of sickle cell disease as a disease of decreased life expectancy. And that’s really where we’re going to get a little bit more awareness and funding if we start thinking of sickle cell disease in those terms.”
Responses have been condensed and lightly edited.