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Aetna is Denying ALS patients coverage for RADICAVA

This petition had 146,419 supporters

My sister-in-law Mary McCreary, who has ALS, is being denied coverage for a drug called Radicava by Aetna insurance.  I am copying her plea to get help as an explanation of why this medication is so important for her and how it can help her in battling this horrible disease. 

I would like to reach out to all of my Facebook friends for their help in urging Aetna to reconsider their coverage criteria for Radicava, recently approved by the FDA for the treatment of ALS. Aetna's extremely narrow and limited coverage criteria excludes such a large population of ALS patients that my provider's office, a major regional ALS clinic, is simply overwhelmed by the large number of appeals they need to file on their patients' behalf. My appeal is one of those. ALS is a progressive disease and time is of the essence. The delay in treatment caused by Aetna's restrictive coverage criteria is simply unconscionable.

I am 57 years old and was diagnosed with ALS in September 2014. Although the diagnosis was devastating, I have been relatively successful in dealing with the progressing symptoms of this disease for over 4 years now. I still prepare dinner for my family, do the laundry, manage some light housekeeping, meet friends for lunch, travel locally, pursue my scrapbooking hobby, and generally enjoy a fulfilling life surrounded by family and friends. Yet according to Aetna's narrow coverage criteria, they have deemed me too "ill" to benefit by a drug that is clinically proven to slow disease progression by 30%. If I would be able to enjoy the aforementioned activities 30% longer than I would have with no treatment, I say yes, please! It may not seem like much, but it is HUGE for an ALS patient trying to hang in there until more treatment options are found.

Medicare and other major carriers are providing coverage for Radicava, some with no pre-certification requirements at all, yet AETNA has denied coverage to myself and scores of others as a "medical necessity denial". I was denied coverage because I scored lower than a 2 on ONE of the 12 components on the ALS Functional Rating Scale. That component referred to my ability to climb stairs. Because I need to use the hand rails to climb stairs, I scored a 1 in that category. I was scheduled for knee replacement surgery prior to my diagnosis of ALS due to osteoarthritis in my left knee and the untreated osteoarthritis is a major contributing factor in my difficulty with climbing stairs. If I'm able to successfully appeal that reason for the denial of coverage, Aetna is likely to deny coverage because I fail to meet another criteria listed in their Clinical Policy Bulletin - disease duration of 2 years or less. I was diagnosed in September 2014, but I'm considered a slow progressor. ALS progression is very different for every patient and disease duration should most certainly not be a factor in coverage determination.

It is clear that Aetna's extremely restrictive coverage criteria was designed to protect their bottom line due to the regrettably high cost of the drug. But if Radicava can slow disease progression and allow patients like myself to enjoy their current quality of life months, or even years longer, how can Aetna, in good conscience, continue to deny coverage to so many? Please join me in urging Aetna to take another look at their coverage criteria and make the necessary revisions so that more ALS patients have an opportunity to not only survive longer, but to do so while maintaining their current quality of life.

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Shari Gibson needs your help with “Victory, but let's keep it going for all ALS patient covered by Aetna”. Join Shari and 146,418 supporters today.