Welcome to the February LOVE edition of Terry’s Hot Take, a monthly resource for lawmakers by the Executive Director of Patients Rising, on behalf of the 133 million Americans living with chronic disease.

All Together Now: DIR Fees Are Not Rebates.  The CMS proposed rule to cut PBM fees is only a baby step forward in healthcare transparency, as it continues to allow PBMs to keep drug manufacturers’ rebates instead of passing those to the patient. A genuine step toward lowering drug costs would be giving the patient the rebates, discounts and coupons that they believe they are getting, returning an estimated $180 billion to patients every year, while this proposal would return an estimated $9 billion annually.

Proposed Drug Supply Chain Rule is Mere Table Ante for Broader ‘Rebate’ Reform

Passing rebates onto seniors at the pharmacy counter will produce $30 billion in savings. But Build Back Better would terminate this rule completely, moving the savings from patients to offset other programs. Read about meaningful drug supply chain reforms that directly benefit patients in my latest op-ed in The Hill.

HHS Report will Offer Little Cost Savings to Patients. Patients, especially those in underserved communities need relief at the pharmacy counter, but Medicare negotiations only saves the government money – not patients at the pharmacy. Read more here.

Patients Rising NOW Supports Patients’ Rights to Access to Approved Treatments that Might Work. The CMS decision to limit an Alzheimer’s treatment to those in clinical trials only further deepens health inequities and sets a dangerous precedent for future treatment innovation. Patients say let the FDA do its work! More here.  Plus the WSJ Ed Board weighs in. 

The Latest on the Patients Rising Podcast: On our latest episode, CMS, FDA and You, we examine CMS’ draft coverage decision that limits access to a new Alzheimer’s treatment. Plus, the FDA’s hearing aid proposal and lack of access to COVID-19 treatments.

  • Other recent weekly episodes:
  • Hear from Megan Moyer, Public Policy Director at Disability Rights Oregon (14:46). She details why the quality-adjusted life year (QALY) is a discriminatory metric, yet is still used to score diseases and treatments. Not only is it used at the state level in Oregon, but also in Congressional CBO scores.
  • You can listen to these episodes and subscribe to Patients Rising Podcast via your favorite podcast app, like Apple PodcastSpotifyGoogle Podcast
    • Patients Rising Podcast is published every Friday with the purpose to update patients on issues in Washington that affect them. Each week patients are interviewed on policy challenges that come with treating their disease, along with new information on the latest health issues and legal help for patients.

Every month we hope to lend a patient lens to legislation and regulation. If Patients Rising can be of assistance to your office, please reach out to me directly via twilcox@patientsrising.org or at 202-750-4331.

Take care,


Patients Rising is a 100,000 member-organization of patients with chronic illness. We work with patients to advocate for access to the treatments, innovations and care they need, through our numerous patient programs and initiatives, including Patients Rising Concierge, Patients Rising University, Voices of Value, and Patients Rising NOW, educating patients about the legislative process, and empowering them to advocate for reforms and legislation aimed at advancing patient access, affordability, and transparency in healthcare.