Sickle cell, a disease that has long haunted communities of color, most particularly the Black community, is now more treatable than ever before, according to health care experts applauding medical advances as they raise the curtain on September as National Sickle Cell Awareness Month.
“We now have four new drugs that have been approved by the FDA for sickle cell patients. Prior to that we only had one which was hydroxyurea and that was on the market for twenty years before we got the second drug approved,” said Beverly Francis-Gibson, president and CEO of The Sickle Cell Disease Association of America.
Now that the disease is more manageable, sickle-cell patients are living longer, according to medical researchers who note that the mortality rate remains high. The average life expectancy of sickle-cell patients is estimated to range from 35 to 40 years old.
Even so, the emergence of more treatment choices helps sickle-cell sufferers better manage the disease.
“They [the sickle cell community] were excited because there hadn’t been new drugs for 20 years. So, there was generally excitement in the sickle cell community about the fact that now we have more options and it’s about having options. Gene therapy is a big topic right now so there’s a lot of unknowns about gene therapy but there’s a lot of interest,” said Francis-Gibson.
Even with more treatment choices, Francis-Gibson pointed out, progress in finding a cure is hindered because not enough people finish or participate in the clinical trials.
“My hope is that one day there is a cure,” said Francis-Gibson. “I am seeing so many young people who are passing away from this disease needlessly.”
She said she wants pharmaceutical companies to re-evaluate the way clinical trials are conducted to accommodate the participants’ lifestyles.
“If you don’t have trials that get to completion then there is a likelihood that you are not going to have new drugs and it’s a ten [to] fifteen-year process. So, sometimes for the patient, it’s an obstacle.”