Prior Authorization Delays in Myeloma Care: A Patient’s Fight for Revlimid

The International Myeloma Foundation continues to share this collection of patient and care partner stories from those who have completed the first course of the Legislative Advocacy Master Class (LAMC). The IMF hopes that these unique and compelling stories will help raise awareness about the disease, inspire action, and make an impact in changing healthcare laws and policies for the betterment of the myeloma community.  

(EDITOR’S NOTE: The Legislative Advocacy Master Class is a 10-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.” The stories in this blog series were taken from the now-completed first class, where participants submitted their stories as final projects to graduate from the course. The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact in changing healthcare laws and policies. If you have questions or inquiries, or would like to sign up for future LAMC summer and fall courses, please email Michael Riotto at [email protected].)  

This week’s blog was written by Eloise Feinstein, who was diagnosed with myeloma 18 years ago. She has encountered issues and challenges in accessing medicine, prior authorization, step-therapy/fail first, and insurance issues. Eloise relates her story of being denied Revlimid three times by her insurer before finally getting approval. She “aims to educate lawmakers, patients, and the general public about the need to limit prior authorization requirements and advocates for the implementation of laws needed to do so.” Here is Eloise’s 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® (bortezomib) 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® (lenalidomide). 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 two 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.**

About the Advocacy Master Class

At Patients Rising, we believe that patients and caregivers hold the power to move the needle in healthcare and create a better tomorrow for all patients and caregivers by raising their voice! That is why we offer our Advocacy Master Class in collaboration with the International Myeloma Foundation (IMF). The master class is designed to train patients, caregivers, and citizens in the art of healthcare advocacy.   
  
This course is a truly comprehensive way to learn how participants can raise their voice and create a better tomorrow for all patients and caregivers.  The IMF, in collaboration with Patient Rising, is spearheading the Advocacy Master Class. For more information on the Advocacy Master Class, email Michael Riotto at [email protected].  

About Patients Rising 

Patient Rising’s mission is “empowering every patient in America to advocate for reforms placing them, alongside their doctors, in control of their healthcare choices” with a bold vision: “Healthcare is personal. By partnering with patients, we envision a future where every individual has healthcare options that align with their unique needs and circumstances.” To know more about the advocacy organization, visit PatientsRising.org.  
  

**Please note the opinions expressed in this blog are solely of Eloise Feinstein. While multiple myeloma is an incurable cancer, many treatments are enabling patients to live longer, better quality lives. We encourage you to learn more about myeloma by exploring the IMF website. For general information about myeloma, visit What Is Multiple Myeloma? as well as our FAQ. To learn more about specific drug therapies, visit Multiple Myeloma Medications. Since myeloma is a complex disease, each patient has a different experience with it. If you have have a question of a personal nature, please contact our InfoLine Coordinators at 800.452.2873 or [email protected] (Please do not send email attachments or lab reports.).