Greetings and May the 4th be with you!

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

      • On our most recent Patients Rising Podcast episode, Organ Transplant and Financial Strain, Dr. Bob Goldberg and I discuss H.R. 3. 
      • Read our statement on H.R. 3 – Patients with chronic and rare diseases are waiting for innovative drugs, and H.R. 3 could deny them these advancements.
  • Patients Rising NOW joined 30 organizations in sending a letter to House Leadership raising concerns over international reference pricing proposals.
  • Ending Medicaid Coverage of Accelerated Approval Therapies: Patient Pain, No Gain: To shore up their COVID-battered budgets, many states are looking to cut Medicaid spending.  Some states are seeking permission to halt Medicaid coverage of prescription drugs that have received “accelerated approval” from the FDA.  Teonna Woolford – CEO of the Sickle Cell Reproductive Health Education Directive – and I explain in this op-ed why this is bad for patients, and just plain bad policy.
  • Third Party Drug Pricing Reviews: Should Government Trust Them? On April 23, 2021, the Patient Access & Affordability Project examined the faulty measures used by third parties to analyze objective drug pricing recommendations. One of these faulty measures – and possibly the most problematic – is the quality-adjusted life year (QALY). While many have acknowledged the QALY’s shortcomings, relatively few decision-makers have tried to replace it. Until now. A recent article by Dr. Paul Langley of the University of Minnesota and Dr. Stephen McKenna of the  University of Manchester outlines an alternative they have developed to the mathematically impossible QALY. Lawmakers should take note, given the discriminatory nature of the QALY against the disabled, the chronically ill, and the elderly.  
  • Call To Action: If you are interested in working on this issue and learning more, please reach out to our organization:
  • How the American Rescue Plan Helps Patients: The $1.9 trillion American Rescue Plan aims to help patients with affordable coverage, expanded eligibility and help address racial disparities. However, the impact will not be felt until later this year since most of enrollment for 2021 has already occurred. Patients Rising NOW is helping spread the word that these new options are available to patients.
  • Patients Rising Podcast: We go inside the FDA with Acting Commissioner, Dr. Janet Woodcock and talk about the accelerated approval for rare and chronic disease treatments, improving clinical trials, and assessing the cost-effectiveness of medications.  
    • Other recent weekly episodes:
      • My Life is Worth It! 
      • Why Your Care Costs So Much
      • We hear from patient correspondent Nichole David from Ohio, Congressional District 11 (45:51). She highlights the importance of health literacy in improving outcomes, and her challenges living with fibromyalgia and chronic pain.   
    • You can listen to these episodes and subscribe to Patients Rising Podcast via your favorite podcast app- Apple PodcastSpotifyGoogle Podcast and more!
    • 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 I hope to add value to your inbox by helping look at legislation and regulation through a patient-focused lens. If Patients Rising can be of assistance to your office, please reach out to me directly via or at 202-750-4331.

Take Care,