Blog Post: Patients, Be Heard!

Recently, the Biden administration announced the first 10 drugs to be negotiated under the IRA’s Medicare Price Negotiations, the first step in the implementation of a policy that will ultimately destroy patient access to innovative and lifesaving treatments. The Centers for Medicare & Medicaid Services (CMS) has been put in charge of implementing these price controls but, up until recently, has been incredibly unspecific and unresponsive as to how they plan on incorporating patient feedback. After months of CMS dangling the idea of listening sessions over the heads of patients, CMS finally announced dates and specifics for these sessions and other opportunities for individuals to provide feedback. Patients now have a chance to be heard. 

The first victims of the IRA's drug price controls are Eliquis (blood clots), Jardiance (diabetes and heart failure), Xarelto (strokes and blood clots), Januvia (diabetes), Farxiga (diabetes and heart failure), Entresto (heart failure), Enbrel (arthritis), Imbruvica (blood cancers), Stelara (Crohn's disease), Fiasp (insulin product), and NovoLog (insulin product). If companies refuse to comply with the egregious price controls, they will be removed from Medicare, seriously harming American patients. 

CMS will hold 10 listening sessions between October 30 and November 15 to give patients, beneficiaries, caregivers, consumers, and patient organizations the opportunity to provide their own insight into the first round of “negotiations.” Each listening session will focus on one of the 10 drugs that were chosen to be negotiated. To sign up to speak at one of these listening sessions, you must register before October 2. Once everyone has registered, CMS will randomly select 20 people to give a public statement that cannot be more than 3 minutes long. While CMS has made the circumstances less than ideal, it is important that as many patients as possible sign up to increase the chances of a real patient perspective being heard. Additionally, patients can submit a letter calling out these policies before October 2. By showing our support at these listening sessions and submitting letters, we, as patients, can finally have our voices heard before it is too late.  

When writing a letter to CMS or thinking about what you should speak about, there are various things that you should consider. It is important for a patient or family member to lay out certain activities that you can now participate in or have become more efficient at as a result of the drug improving or alleviating your health condition’s symptoms. Additionally, CMS will be looking for how the drug meets an unmet need and any data that supports these claims. By showing the government the impact these drugs have on our lives, hopefully, we can ensure that price controls are implemented as sparingly as possible.  

The IRA’s Medicare Price Negotiations WILL have a drastic impact on medical innovation, harming millions of American patients. However, patients have a very small window to provide feedback on how this dangerous policy will be implemented through CMS. Patients and their families NEED to take advantage of this opportunity to show CMS how these price controls could drastically impact the lives of patients. Either by writing a letter, applying to speak at a listening session, or submitting your story to Survivors for Solutions website, you can make a real difference. This is OUR opportunity to take a stand for current and future patients!  

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Official Letter to Oversight Committee for the IRA: A Year In Review Hearing