Kennedy Unveils Plan to Expand Access to Sickle Cell Treatment

CHARLESTON, S.C. — Health Secretary Robert F. Kennedy Jr. used a morning keynote address before a group of state lawmakers in Charleston, South Carolina, to unveil a new initiative intended to expand access to the latest treatments for sickle cell disease.

Kennedy offered few details in brief remarks that kicked off the National Council of Insurance Legislators’ four-day convention at Charleston’s historic Francis Marion Hotel.

What he did say was that he hopes the initiative — essentially a public-private partnership with manufacturers of gene therapies for sickle cell — would help to blunt some of the negative assumptions made about federal health policy since the Trump administration took office in January.

Back in Washington, D.C., critics of the administration have been loudly panning what’s said to be a draft budget proposal from the White House that would eliminate dozens of federal programs, including many in the health and healthcare arena.

“People assume that budget cuts translate into worse service for beneficiaries, but I don’t think it has to be that way,” Kennedy said.

“When we involve cutting-edge technologies and make tough but fair negotiations with the industry, we can cut costs and improve patient care,” he added. 

Kennedy said the new program would enable state Medicaid programs to get a lower price for gene therapy while also expanding coverage to more patients in need.

“It’s a real win-win for everybody,” he said.

Sickle cell disease — also called sickle cell anemia — is a group of inherited disorders that affect hemoglobin, the major protein that carries oxygen in red blood cells.

Normally, red blood cells are disc-shaped and flexible so they can move easily through the blood vessels. 

In sickle cell disease, red blood cells are misshapen, typically crescent- or “sickle”-shaped due to a gene mutation that affects the hemoglobin molecule. 

When red blood cells sickle, they do not bend or move easily and can block blood flow to the rest of the body, causing intense pain, damage to organs and, in many cases, premature death.

According to the National Heart, Lung, and Blood Institute, sickle cell disease affects more than 100,000 people in the United States and 8 million people worldwide. 

In the United States, nine of 10 people who have sickle cell disease are of African ancestry or identify as Black.

The National Council of Insurance Legislators is a member organization for state legislators serving on their states’ insurance and financial institutions committees.

Kennedy was expected to be joined at the Charleston event by Dr. Mehmet Oz, the newly minted administrator for the Centers for Medicare and Medicaid Services; however, Oz was a no-show.

Abe Sutton, the deputy administrator for the agency, spoke on his behalf.

Dan can be reached at [email protected] and @DanMcCue