The ALS Association sent formal responses to Blue Cross Blue Shield of Illinois, New Mexico, Texas, Oklahoma, and Montana challenging their draft policies regarding coverage of Qalsody, approved by the FDA earlier this year for treatment of people living with ALS caused by the SOD1 gene mutation.
We spoke with Kara Nett Hinkley, national vice president of state policy at The ALS Association and member of the National Association of Insurance Commissioners' Consumer Advisory Board, to discuss some of the important work being done to break down barriers to accessing health care.
Accessing insurance coverage for durable medical equipment is critical for people with ALS. However, too many private insurers either refuse to cover or set up insurmountable barriers for patients who desperately need access to the equipment they need to survive. Learn from people living with ALS and their families around the country who are facing these difficult challenges every day.
For people living with ALS and their families, working with health insurance providers at all stages of the disease is a necessity to obtain the critical care and services they need. The ALS Association, local ALS care teams, and ALS multidisciplinary clinics can all be helpful in getting access to the care and equipment needed for people with ALS to live their lives as they choose.
As an occupational therapist, Katie Adams had a keen sense of what was happening to her body when her ALS symptoms first started and was pretty sure she knew why. Little did she know her intuition would not only prove to be correct but would lead her to fighting for access to the care and equipment she needed just to live.
Health insurers can play a critical role in making ALS livable for everyone, everywhere, but all too often barriers are erected that prevent people from accessing the health care services they need. We discuss the different barriers families affected by ALS have to face and The ALS Association's fight alongside them.
We continue to press Cigna to reverse course and make Relyvrio treatment available for people living with ALS on Cigna plans. While Cigna initially revised its policy, those changes were insufficient to ensure timely access to Relyvrio for people living with ALS.
ALS Association leaders and people living with ALS urged Maryland senators to advance legislation that would prohibit companies that offer life and disability insurance from using the results of genetic testing to deny coverage or influence pricing decisions. John Knowles, a caregiver for his wife, Teri, testified about the impact familial ALS has had on his family. Teri’s twin sister died in 2013, and another sister died in 2020 after living with ALS. John talked about the need for genetic testing for family members and the fear that the results could be used against them.
The ALS Association filed a formal objection to health insurer CIGNA for the company’s decision to exclude Relyvrio from its formulary. In a letter also shared with the Centers for Medicare and Medicaid Services and the Veterans Administration, the Association called on CIGNA to reverse its decision.
ALS Association leaders and advocates from the ALS community will press lawmakers in Maryland to pass legislation that would prevent insurance companies from using genetic testing information to deny coverage or influence price considerations.