South Carolinians to rally this weekend for access to Alzheimer’s treatment drugs
COLUMBIA, S.C. (WCSC) - In March, nearly 1,000 people from all 50 states gathered outside the White House, holding signs and demanding access to Alzheimer’s treatments.
This weekend, South Carolinians will make that same call at a rally in Columbia.
“The people who have early stages are asking us to let them and their doctors choose their medical treatment and not bar them from access,” Taylor Wilson of the South Carolina chapter of the Alzheimer’s Association said.
Within the next month, the FDA is expected to decide if it will approve Lecanemab, a drug that appears to slow the progression of Alzheimer’s.
The Centers for Medicare & Medicaid Services initially said they would not cover the cost for all patients, with the drug priced at more than $26,000 a year out of pocket.
Now CMS said it will pay for it, but only if doctors take part in a data registry that has yet to be rolled out.
“People who have this disease, who are progressing out of the range where they can actually receive the treatment, number in 2,000 a day,” Wilson said. “So those 2,000 a day don’t have time for the creation of a registry or for those details to be released or for even the physicians and physicians’ offices to learn about the registry.”
Right now, an estimated 110,000 South Carolinians are living with Alzheimer’s and related dementia in South Carolina, a number that is expected to keep rising.
Advocates say this access is what they have been fighting for on their Walks to End Alzheimer’s across the country every year: for people to have more time with their loved ones.
Laura Joseph has been part of that fight and plans to attend Saturday’s rally in Columbia.
“I lost my Gran to Alzheimer’s when I was 14,” Joseph said. “If she had access to the treatments that we have today, we would’ve been able to have more time together.”
For Joseph — who also saw the effects of the disease daily firsthand as a pharmacist — the fight has become more personal.
She has seizures and was recently diagnosed with a condition that has been linked to the early stages of Alzheimer’s for some people.
“It could be that some of these medications could help me in the future, but if I don’t have access to them … then that’s putting me potentially at a disadvantage,” Joseph said.
The statewide rally for access to Alzheimer’s treatment will be this Saturday, June 17, in Columbia.
It’ll happen at Martin Luther King Jr. Park at 2300 Greene St. from 10 to 11 a.m.
Organizers expect advocates from all across the state will be there, as similar rallies will be held in all 50 states this month.
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