Denied denied denied – despite evidence and persistence
Eloise
State: New York
Congressional District: NY12
Diseases
Cancer
Issues and Challenges
Eloise has encountered: Access to Medicine, Insurance Issues, Prior Authorization, Step-Therapy / Fail First
My Story
Multiple myeloma is a terminal blood cancer—your blood is flooded with cancerous plasma cells. Tumors infiltrate your bones. Your kidneys weaken. You become susceptible to any infection.
I was diagnosed with multiple myeloma almost 18 years ago. Dr. Google gave me three years, but new drugs are being approved at a staggering pace and those drugs have kept me alive. But getting those drugs has rarely been easy.
At diagnosis, I needed emergency surgery to replace two vertebrae in my neck that had been destroyed by a cancerous tumor. Radiation of the same area followed. And we had to decide what my first line of drug therapy should be.
I was in agonizing pain from the radiation, literally on top of the otherwise painful surgical site, and I had to wear a massive cervical collar for months which exacerbated the pain. I could hardly eat or even swallow. I couldn’t drive. I could barely move.
In 2007, the drug Velcade was standard of care first-line therapy. Velcade required two lengthy infusions each week, some distance from my home. Revlimid, an oral treatment I could take at home, had recently been approved but was still generally used as second-line therapy after Velcade failed. It would be easier to administer, it had a better side effect profile, it was proven effective. It wasn’t experimental. I wanted Revlimid. My doctor prescribed Revlimid. It was obvious to anyone who knew my situation that Revlimid made better sense.
But Revlimid was far more expensive. My insurer insisted I start with Velcade. We appealed. At internal review: denied. On appeal to an external physician (with unidentified credentials): denied. At a second level of review (unidentified credentials): denied. I was a practicing attorney so I played my last card: a letter on my legal letterhead making my case. Revlimid was finally approved after about 2 months of denials.
What about the patient who doesn’t have the “luxury” of appealing because their cancer markers are rising too quickly? What about the patient who doesn’t have a persistent doctor? What about the patient who doesn’t have legal advocacy skills and the letterhead to match? What about the patient with a terminal disease who is just too overwhelmed to fight this battle? Ironically, shortly after this, Revlimid became more common than Velcade as first-line therapy, and then both together became standard of care first-line.
This isn’t my only story of slogging through delayed prior authorization. This wasn’t the last time my disease or condition progressed while approval was delayed. I’ve escalated my case to supervisors and tearfully explained that my last PET scan showed “innumerable” tumors and I needed to start the new drug immediately. Insurers have lost my prior authorization requests, demanding that I restart the process. I’ve yelled at insurer employees in frustration. I recently spent an extra night in the hospital while the insurer delayed approval of an at-home antibiotic, a completely ironic and uneconomic result. I’ve never asked for an off-formulary drug. I’ve never asked for an unapproved drug, or a drug not to be used for its intended purpose. Yet time and time again, my medical providers—with impeccable credentials-- are second-guessed.
I aim to educate lawmakers, patients, and the general public about the need to limit prior authorization requirements and to advocate to implement laws needed to do so. I’m proud to spend what time I have left helping others avoid the perils of prior authorization.
My Motivation and Inspiration
I aim to educate lawmakers, patients, and the general public about the need to limit prior authorization requirements and to advocate to implement laws needed to do so. I’m proud to spend what time I have left helping others avoid the perils of prior authorization.
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