ALS Awareness Month: Young woman's journey with new ALS treatment
Houston - ALS or amyotrophic lateral sclerosis is a neurological disease that robs people of using every muscle in their body, affecting their ability to walk, breathe, and eat. It typically occurs later in life, but a young woman in her 20s is fighting it and trying to pave the way for others to get better treatments.
Now Shelby Kinsey wants everyone to realize our community can still help during this ALS Awareness month! She recently graduated from Texas Tech. She felt great at the time and was hopeful for her bright future. Now this go-getter is fighting for her life because of the shocking diagnosis of ALS, also known as Lou Gehrig's Disease.
"It all started back in about April of last year. I was serving tables and I had fallen one day and about a week or two after that I noticed I couldn't really go upstairs anymore. I was falling a lot and then I've just progressed from there. It's been doctor after doctor. Nobody knew what was wrong until they were able to diagnose me on January 17th of this year," explains Shelby.
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It progressed quickly from Shelby using crutches to relying on a wheelchair. She has been working with the ALS Association to get her insurance company to cover a new FDA-approved treatment of Qalsody, a medication specifically designed to target her type of genetic ALS (SOD1).
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"All insurances are paying for it but Blue Cross Blue Shield, who is our insurance company. They just feel that it's too experimental, and it's not medically necessary. The problem is this medication is only for ALS patients with the SOD1 gene and only probably 500 patients in the United States, so I'm not sure there will ever be enough data to support what they're wanting. They gave us administrative approval with Shelby, being what they call living, breathing documentation. So, she will be what is the deciding factor in six months whether they continue or not paying for it," explains Stacey, Shelby's mother.
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She says they are already seeing a difference after receiving four doses through lumbar punctures.
"It should take quite some time, but we definitely see a progression of things slowing, my biomarkers have dropped already so that is a very good sign, but it will probably be a few more doses before we physically see a difference," explains Shelby.
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30,000 people are living with ALS and are not expected to live five years past diagnosis. Even with the grim statistics, Shelby's loving family remains optimistic.
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"We are actually really good. Shelby has such an amazing spirit. She's so sweet and she's always happy and she just makes it easy to deal with all of this because you know, she never worries about herself. It's always everybody else first and it's just so hard to be sad around her," says Stacey. Shelby and her mom say their faith and prayers help keep them strong.
Something that started out ten years ago as a simple challenge, then turned into a global mission to end ALS, is being thanked for the latest treatments. The viral ice bucket challenge raised more than 115-million dollars in a few months to help research new treatments and it's underway again to finally find a cure.