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

Always delivered on Taco Tuesday, the best day of the week!

SAVE THE DATE: Patients Rising Now is hosting our first in-person Fly-In, We the Patients, on June 14-15.  

Employer Trends: Better Benefit Design: Businesses are changing their health plan benefits to lower out-of-pocket costs and improve health care access for employees while saving on their bottom line. Our 2022 Health Plan Heroes small business honorees were highlighted in this piece in BenefitsPRO: Small Businesses Finding Hands-on Approach to Benefits is Key. 

Patients Demand Better Treatment; Patients Rising Supports a Ban on the QALY: Quality-adjusted life-years is a metric that discriminates against those who are sick and/or disabled. The problems associated of QALY-based pricing models are they:

  • produce results that are biased against patients with chronic and severe illnesses
  • discount the needs of elderly and disabled patients
  • are based on data observations that fail to meet even the most basic requirements for scientific credibility.  

The Protecting Health Care for All Patients Act would create real systemic change for Americans with chronic disease. If passed this legislaiton would remove the discriminatory metric that allows the goverment to decide what our lives are worth. 

Why Diversity Matters for Clinical Trials: FDA Statistics show that while minority communities (racial and ethnic) make up nearly 40% of the U.S. population, an overwhelming 75% of the 32,000 clinical trial participants for 53 new drugs approved in 2020 were white. Knowing that a higher number of chronic disease patients belong to minority subgroups, this underrepresentation could hurt patients. The FDA recently released a draft guidance for drug manufacturers that urges them to develop a Race and Ethnicity Diversity Plan early on in their clinical study that is based on the guidance. Patients Rising Now supports provisions in Cures 2.0 that will help address diversity issues. 

The Latest on the Patients Rising Podcast: 

Patients Rising Podcast is published every Friday with the purpose to update patients on issues in Washington that affect them.  Listen via your favorite podcast app, like AppleSpotifyGoogle 

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 NOW