Did You Know About the Sickle-Cell Cure?
Health Breakthroughs: A series on treatments that help blacks but are out of reach for many.
While transplants, which cost $200,000 to $300,000, are slightly more available to children, Horwitz says, "I do not see many sickle-cell patients. To have access, they must be referred by a physician. If they don't have insurance, we advise them not to make the trip. This is a difficult time to get expensive treatments." He adds, "There is a great need for advocacy."
This is especially true when 17 percent of blacks under 65 -- the age group most likely to have sickle cell -- are on Medicaid, says Cara James, director of the Disparities Policy Project at the Kaiser Family Foundation. In order for Medicaid to cover a transplant, the patient must have had a stroke or else prove stroke risk. "In addition, 34 million blacks are uninsured, and not all insurance pays for transplants," she says.
With 25.8 percent of blacks living in poverty and 16.7 percent unemployed, "income-related inequities create other problems," James continues, including an inability to travel to top medical centers and the challenges involved in having to take long sick leaves. "So there's definitely a possibility that these treatments could exacerbate disparities," she says.
Reality Check: More Work to Be Done
For people living with sickle cell, new treatments are greatly appreciated, but Tosin Ola, a nurse and the founder of the activist organization Sickle Cell Warriors, understands the difficulty of access.
"Being able to have a sickle-cell cure seems very far-fetched to me. I've considered going to Hopkins, but financing the procedure keeps me away," says Ola, who lives in Portland, Ore., and pays $650 per month for medical insurance while working two jobs. "There's no clear way to a transplant for most sickle-cell patients," says Ola, who is also part of a passionate Facebook sickle-cell community of thousands.
"There certainly are barriers to transplants," says Dr. Lanetta Jordan, chief medical officer at the Sickle Cell Disease Association of America Inc. Jordan believes that advocacy is key. "We are going to have to fight to bring these treatments to our communities."
Ola, Jordan and other advocates suggest two paths: lobbying legislators for better insurance coverage and working with community liaisons at hospitals to demand advanced treatments.
"We want medical innovations like this that will add value and extend life," says Ruth Faden, director of Hopkins' Berman Institute of Bioethics. "But we must ask, how will these innovations impact disparities? There's a moral imperative to address these questions."
A Brighter Future
As for Andrew, he is on his way to getting his wish of a normal childhood. Surrounded by his siblings, cousins and grandparents, Andrew received his transplant on Nov. 16. Family members report that he was excited and in great spirits. It will now take a few weeks to learn if the procedure was completely successful -- leaving Andrew free of sickle cell and able to get back out on the court and play some ball.
For more information about sickle-cell research and other resources, click here.
Sheree Crute is a 2011 University of Southern California/Annenberg National Health Journalism fellow and journalist in Brooklyn, N.Y. This article is first in a series, funded by USC, about how the latest medical advances will affect health care disparities among African Americans.