By Sharon Rhoades
For more than 30 years migraine attacks limited my ability to spend time with family and friends, work to my fullest potential and plan for the future. Instead, the decadeslong search for both long-term and acute pain relief was my focus, so I cheered when the first-ever medication specifically developed for the prevention of migraine, a calcitonin gene-related peptide inhibitor, was approved by the U.S. Food and Drug Administration just last month. It offers new hope.
But I have real concerns that patients like me won’t be able to access this medication and others in development. On June 13 the Institute for Clinical and Economic Review, a think tank funded partly by the insurance industry, hosted a roundtable to discuss its “cost-benefit” analysis of available treatments for migraine, but seemingly weren’t concerned with patient perspective. Despite an unprecedented patient interest only four patients were allowed to speak during a brief 30-minute section of the six-hour meeting. Yet, ICER’s final recommendations may impact all patients when insurance companies use their analysis to determine patient cost-sharing and drug availability. It’s vital that patients and their doctors have access to the full range of medications to treat migraine and the decision shouldn’t be based on dollars and cents, but rather, need.
Migraines are a debilitating neurological disease and for those of us who suffer, it not only affects our health but every facet of our lives. We strive to not let migraines take our lives away, and often times that means suffering silently, and living in a world where everyday existence means “just pushing through.”
There is considerable pain and discomfort associated with not only the migraine but the pre-migraine and hangover, causing one migraine to have an impact that lasts days at a time. Due to the duration of a migraine and the frequency of them for many, experiences that others can enjoy, like a warm summer day, or my child’s birthday, is often riddled with pain. So I say without hesitation that migraines affect all aspects of our lives, our ability to work, to take care of our family and just enjoy life.
Medications from the CGRP class give me the hope that I may experience relief from the consistent debilitating, life-depleting pain. However, these medications are only beneficial if those that need it can access it, and not have to jump through hoops put into place by insurance companies based on biased recommendations.
In New York, we can urge support for S5022-C/A2317-C sponsored by Sen. Sue Serino, R-N.Y., and Assemblywoman Crystal Peoples-Stokes, D-Buffalo, since 2015. The bill will establish consumer safeguards to ensure that New Yorkers have access to life-saving and life-enhancing therapies through consistent coverage, stable formularies, and fair out-of-pocket costs. For more information, visit www.50statenetwork.org.
Sharon Rhoades, of East Aurora, is a volunteer advocate for the Global Healthy Living Foundation’s 50 State Network.