COLUMBIA, S.C. (WIS) - COVID-19 has placed thousands of South Carolinians with pre-existing conditions in difficult situations as they try to protect their health while waiting their turn in line for the vaccine.
Those with underlying health conditions that put them at high risk for severe disease are currently in phase 1c of the vaccine roll-out in South Carolina. The state currently remains in phase 1a and health officials do not expect to get to phase 1c until “late spring.”
One Columbia man with spinal muscular atrophy is calling for high-risk individuals to be moved up in line.
LaMondre Pough said it’s been a difficult year because he can’t quarantine due to his need for daily at-home medical care for his condition. However, he said getting COVID could be deadly for him.
“With a compromised respiratory system, contracting COVID-19 could absolutely be deadly for me and thousands of others like me,” Pough said.
The National Organization for Rare Disorders, along with other advocacy groups, wrote a letter to the CDC on February 17, calling on the agency to provide vaccine prioritization guidance for rare disease patients to all states.
Pough was diagnosed with spinal muscular atrophy, which is a rare progressive neuro-muscular disorder, at 18 months old.
“My single teenage mom was told that I would not live to be 5 years old, and if I did live beyond that, that I would in their words be a quote ‘complete vegetable,’” Pough said.
Beating all the odds, Pough is now 47, and he spends his time using his voice as a public speaker and a singer.
He said that he lost the ability to walk at 9 and the ability to feed himself around 25 years old. He lives by himself, but has a home health care service come to him three times a day. He said he can’t go to the restroom, get dressed, or eat without assistance.
“Here’s the issue I ran into -- because I cannot self-quarantine, I’ve been exposed twice to COVID-19 by people coming into my home to provide care,” Pough said.
He said he’s been advocating for local and national leaders to prioritize those with underlying conditions, like him, for the COVID-19 vaccine.
“If the person that is providing the care can get the vaccine because they are frontline workers and dealing with vulnerable populations, shouldn’t those vulnerable populations also be able to receive the vaccine as well?” Pough said.
Pough said there’s no cure spinal muscular atrophy, but one bright spot of this year has been seeing the results from the first FDA-approved at-home treatment, called Evrysdi.
“I simply take this refrigerated solution once daily,” he explained. “It’s as easy as taking a pill.”
The FDA approved Genentech’s Evrysdi in August of 2020. Its clinical trials showed improvements in motor function for Types 1, 2, and 3 of spinal muscular atrophy, also known as SMA.
Since starting it in October, Pough said he’s stronger and has more energy.
“I’ll tell you, I’m excited and absolutely amazed and thankful this is happening,” he said.
Pough said his 11-year-old cousin also has spinal muscular atrophy and has seen positive results from taking Evrysdi. He said that treatments for SMA didn’t exist until about five years ago, and he’s hopeful for what the future holds for her as more research is done.