When I was diagnosed at age 22 with ALS, a fatal disease without a cure, I knew I was going to have to fight for my life. I just didn’t know I would also have to fight against insurance companies denying me access to life-extending treatments.
Amyotrophic lateral sclerosis, or ALS, takes your ability to walk, talk, eat, and eventually breathe. The average lifespan after diagnosis is two to five years. About 10% of cases, including mine, are familial.
After my diagnosis, my doctors prescribed Qalsody, the only treatment specifically approved for people living with SOD1-ALS, my genetic form of ALS. My family and I fought tirelessly to get my insurance provider, Blue Cross Blue Shield of Texas, to cover the drug. After months of appeals and public advocacy, they agreed to cover the medication — for just six months. Once that approval period ends, I will once again at the mercy of an insurance system that treats human life as just another line on a balance sheet.
Despite receiving FDA approval, Qalsody remains inaccessible to most patients because insurers deem it “not medically necessary.” In its denial letter to me, Blue Cross Blue Shield Texas stated: “There have not been enough studies done to show that this drug improves health outcomes in patients with your condition. The clinical benefit has not been established. That is why this request is denied.”
SOD1-ALS is a rapidly progressing form of the disease, so every minute counts for those of us living with it. The insurers’ demand for more evidence overlooks the significant impact Qalsody has already shown in clinical trials — and in my own life. My motor function has improved: Though my muscles still aren’t strong enough to hold me up or be useful, I can now move them. Furthermore, my neurofilament light chain (NfL) levels — an indicator of ALS progression — have dropped as low as 57, down from a peak of 291. Perhaps most importantly, I simply feel great and haven’t experienced any side effects.
This is the promise of modern medicine: the chance to live longer lives with better quality of life. Yet the same insurers who approved this drug for a temporary period are now poised to deny it again, effectively telling me that my life is not worth the cost.
This isn’t just my story. Every day, people like me are denied access to treatments. Chris Spalding, a 66-year-old man living with ALS in Texas, had his claim for Radicava, another FDA-approved ALS treatment, rejected because he uses a banister to walk up the stairs. His insurance company claimed this proved he was too advanced in his ALS to benefit from Radicava. Chris was plunged into a months-long fight with his insurance company that included an administrative law judge and led him to film himself walking without the use of the banister. Just to access his medication. It’s crazy.
These denials are not about medical necessity; they are about cost-saving measures by companies that prioritize profits over patients’ lives. The price tag of ALS treatments is undeniably high —around $200,000 per year for Qalsody — but for patients like me, that price is the difference between living and dying. Without insurance coverage, most ALS patients simply cannot afford these drugs.
It’s important to remember that these medications have already been through the rigorous process of FDA approval. Qalsody was granted approval through the FDA’s accelerated pathway — a program designed to expedite the approval of drugs for life-threatening conditions. This pathway exists because, when it comes to diseases like ALS, time is not a luxury we patients have. By the time long-term studies confirm benefits, many of us may not be here to see the results. The accelerated approval program recognizes that people living with ALS are often willing to accept some risks in exchange for the chance to slow down the progression of their disease.
Yet insurance companies refuse to follow suit, hiding behind bureaucratic guidelines to justify their denials. They ignore the real-world experiences of patients who are already benefiting from these treatments, and they disregard the suffering caused by withholding care.
There is now precedent, however. On Monday, the Centers for Medicare and Medicaid Services issued a first-of-its-kind directive requiring Medicare Advantage plans to cover Qalsody. That won’t help me, but I am grateful to hear many others with ALS will have an easier time accessing this medication.
ALS is a fatal disease. Every moment matters. The delays and denials by insurance companies do not just hurt us — they accelerate the very suffering that these treatments are designed to prevent. We are not asking for miracles; we are asking for access to the medications that give us a fighting chance to hold on to our independence, our dignity, and our lives.
I urge insurers to put our lives first, and I ask policymakers to hold these companies accountable. Denying coverage for FDA-approved ALS treatments is not just a business decision — it feels cruel.
Shelby Kinsey is an advocate who was diagnosed with ALS in 2024. She lives in Grandfalls, Texas, with her mom, her full-time caregiver.
Disclosure: Qalsody is made by Biogen; the ALS Association, which connected Kinsey to STAT for this essay, has received financial support from Biogen for the August 2025 ALS Nexus event.