Confirmed victory

1) Cover abatacept treatment for Michelle Munro.2) Cover treatments – when they have shown efficacy, per the FDA, in related or similar diseases -- for those with orphan (rare) diseases.

This petition made change with 22 supporters!


Aetna is killing our dear friend Michelle and, in the short run, causing her intense pain and threatening her heart and, now, her trachea. Six weeks or so ago, Aetna suddenly decided to deny her the medication – called “abatacept” -- that has been slowing the progress of her rare autoimmune disease for the past two and a half years. So far she has missed two infusions and is hurting most days to the point she can't get out of bed.

Michelle has a rare degenerative autoimmune disease called Relapsing Polychondritis (RP), a disease affecting just 4 people in a million. Thirteen years ago she was given 3-5 years to live and a series of medications have kept her alive but had some terrible side-effects (impaired her vision, caused seizure-like activity, damaged her heart). This medication was different; it was improving her overall health, decreasing her painful flares, and apparently doing no more nervous system damage.

Why is Aetna suddenly denying her the medication? They say it was experimental; Michelle was part of a drug trial that has now ended. But the medicine was working for her and her doctor wants to continue it. These rare or “orphan” diseases will never be eligible for FDA-approved drugs because pharmaceutical companies will never find it profitable to invest in them. So doctors have to try medicines that have been shown to be effective for similar, more common diseases (in this case, for instance, rheumatoid arthritis).

Michelle’s doctor, an international expert in her disease, explains that, by Aetna’s logic, no treatment at all would be allowable for these orphan diseases. Insurers should grant equal coverage to insured individuals regardless of how common or how rare their disease or condition. Otherwise, people like Michelle, will pay premiums for nothing and be left to suffer unnecessarily and to die sooner than they should have. It’s simply wrong. Especially for a company that makes more than $47 billion in net profits annually.

 

Let’s tell Aetna and all health care insurers that our loved ones with orphan diseases deserve treatment, too. Otherwise, how can they claim it doesn’t violate the Affordable Care Act as a de facto denial of coverage for a pre-existing condition!!??

 



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Beth Reis needs your help with “Aetna: 1) Cover abatacept treatment for Michelle Munro.2) Cover treatments – when they have shown efficacy, per the FDA, in related or similar diseases -- for those with orphan (rare) diseases.”. Join Beth and 21 supporters today.