RFK Jr. visits Charleston, discusses new Medicaid model

CHARLESTON, S.C. (WCSC) - A nationwide effort is set to bring transformative therapies to people on Medicaid who are diagnosed with sickle cell disease through a new model by U.S. Secretary of Health and Human Services Robert F. Kennedy Jr.

Kennedy visited the Holy City on Friday to meet with state elected officials and Lowcountry doctors during an annual conference put on by the National Council of Insurance Legislators.

“This is a real win-win for everybody,” Kennedy said.

He says this new model’s goal is to expand access to transformative therapies for people with Medicaid and mainly for those with sickle cell disease.

Director of the Center for Medicare and Medicaid Innovation Abe Sutton says those with sickle cell are currently treated for their symptoms, but Kennedy wants new gene therapies to focus on its root causes.

A handful of protestors stood outside the Francis Marion Hotel during this announcement in hopes of getting their message across to folks driving by.

“What I fear is a return to pre-existing conditions before we get insurance and things like that,” protestor Jennifer Small said. “And that’s totally ridiculous.”

Kennedy says he wants to create standardized insurance processes so people’s treatment can go from lasting months to just days. Plus, he wants to allow patients to make intuitive payments to manufacturers depending on whether the drug actually works for them.

He says people assume budget cuts translate to worse service, but it does not have to be that way.

“When we adopt cutting-edge technologies and make tough and fair negotiations with industry, we can cut costs and improve patient care,” Kennedy said.

Kennedy says 35 states have already applied to be involved in this new model, including South Carolina.

And one of the elected officials who met with Kennedy is South Carolina Lt. Gov. Pamela Evette, who says the Palmetto State is fourth per capita in the nation of people with sickle cell. She says talking with a sickle cell patient directly in the meeting helped enhance her perspective.

“Competition is what drives costs down,” Evette said. “So, as these start to be proven and more people get into this field and start producing more drugs, that will eventually bring the costs down also.”

South Carolina Sen. Tim Scott (R) also met with the small group and says it means a lot to him as he’s worked on sickle cell legislation for the past ten years. He says 60% of sickle cell funding comes through Medicaid, and he wants to make sure that stays intact.

He also brought up another personal concern with Kennedy.

“Frankly, I had some concerns that the Office of Minority Health was going to be eliminated, and I wanted to make sure that I got the assurances that I wanted from RFK that that was not the case,” Scott said. “It’s moving over to the American Hospital Association part of the istration. So, that was good news to hear that as well.”

The Medical University of South Carolina’s adult and pediatric blood and marrow transplant and cellular therapy program medical director, Dr. Michelle Hudspeth, says she’s hoping these changes become long-term.

“Someone in your family is going to be affected by a life-altering illness, and we never know what that day may be,” Hudspeth said. “And so, this is about the background of science and research coming to a point where we can truly change lives.”

Overall, the group agrees they want to make these life-changing solutions in a fiscally responsible way.

Hudspeth says the group hopes this model will get approved in South Carolina so these therapies can start right away. But for now, there’s no timeline of if or when it may happen.

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