Good Morning,

Happy Fall! Welcome to Terry’s Hot Take is a monthly resource for lawmakers by the Executive Director of Patients Rising, on behalf of the 133 million Americans (one-third of Americans!) living with chronic disease. 

Patients Rising Now Inaugural Advocacy Day:  Last week, October 27 and October 28, patients with chronic and rare diseases, and those caring for them, met with members of Congress. The patients and caregivers, representing every region of the country, shared their stories with lawmakers and asked for support on legislative action that would improve patient access to better benefits and more affordable care:

  • An improvement to step therapy policies by ensuring safe and timely access to needed treatments (H.R. 2163/S. 464: Safe Step Act of 2021)
  • Inclusion of patient input for FDA consideration of new drugs (H.R. 4472/S. 373, The BENEFIT Act of 2021)
  • Protection from unnecessary delays in care by streamlining and standardizing the prior authorization in the MA program (H.R. 3173/S. 3018: Improving Seniors’ Timely Access to Care Act of 2021)
  • Protection of the Accelerated Approval Pathway by the FDA, rejecting policy recommendations by the Medicaid and CHIP Payment and Access Commission (MACPAC) that would undermine the intent of the accelerated approval pathway for the patients who need those treatments quickly.

Senate Finance Committee Hearing & Pro-Patient Health Insurance Benefit Design: Patients Rising Executive Director, Terry Wilcox weighed in on the October 20 Senate Finance Committee hearing, Health Insurance Coverage in America: Current and Future Role of Federal Programs. A link to Patient Rising’s statement for the record can be found here. Here are the highlights:

  • Any federal policy solution aimed at reducing healthcare costs must include benefit design reform.
  • Healthcare costs must be transparent- patients have the right to know exactly who pockets their cash and for how much in each transaction.

How PBMs Hurt Patients and Independent Community-Based Pharmacies:report by the National Community Pharmacists Association (NCPA) highlights deals between pharmacy benefit managers (PBMs) and drug manufacturers that raise drug costs by 30%, because PBMs force manufacturers pay a rebate for their drug to be included on the health plan formulary. Such anti-competitive practices have led to independent pharmacies operating at a loss when filling prescriptions. States are losing money in the process as well, with PBMs overcharging state Medicaid programs.

  • Congressional Action: Prescription drug costs are disguised as “rebates” and “savings” and Congress should require more information be available to consumers.

Patients Rising Now Joins Letter Supporting Senate Finance Committee Prescription Drug Affordability Proposals: On behalf of millions of American patients who live with complex, chronic health conditions, Patients Rising Now joined 45 organizations to support the Senate Finance Committee’s focus on advancing policies and measures that improve prescription drug affordability and access for the American people. Specifically, we support the following policy solutions:

  1. Cap annual out-of-pocket costs for Medicare Part D beneficiaries, which would benefit millions of patients who rely on prescriptions to manage their health. 
  2. Create a “smoothing” mechanism in Medicare Part D to ensure seniors with expensive annual drug costs can pay their out-of-pocket expenses throughout the calendar year rather than all at once. 
  3. Pass rebate savings on to patients by basing cost-sharing on post-rebate drug prices rather than list prices. 
  4. Ensure insurance benefit design does not discriminate against vulnerable beneficiaries that place undue cost-sharing on patients who rely on prescription drugs. 
  5. Ensure patient copay assistance counts towards a beneficiary’s deductible and out-of-pocket expenses.

ICER’s Flawed Report on Hereditary Angioedema: Hereditary angioedema (HAE) is a rare genetic condition that causes swelling of the patient’s face, throat, hands, feet, and stomach and these swelling-attacks can be life-threatening. On August 24, 2021, the Institute for Clinical and Economic Review (ICER) released a revised version of a final evidence report. Unfortunately, while ICER tried to update its analysis, they made no effort to address the flaws in its underlying methodology. Congress should be aware of ICER’s continuous lack of credibility in the report’s failure to meet the required standards of normal science. 

Patients Rising Podcast: On the latest episode, Biomarker Testing for Better Treatments, we speak with guest Hilary Gee Goeckner at the American Cancer Society Cancer Action Network on why biomarker testing is so critical, the health equity implications, and how to expand access through policy.

Every month I hope to add value to your inbox by providing a look at legislation and regulation through the patient 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,




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.