Welcome to Terry’s Hot Take, a monthly resource for lawmakers by the Executive Director of Patients Rising, on behalf of the 10 million Americans living with chronic disease. 

Terry’s Hot Takes:

  • Biden Administration & the 117th Congress: A new Administration and Congress, on the heels of a global public health crisis that highlighted the need for U.S. healthcare reform, is the perfect opportunity for Washington to solve real problems that have plagued patients for years. Alongside patients, I look forward to working with the new Administration and Congress on key policy priorities, such as:
    • affordability and access for patients;
    • transparency for drug pricing;
    • innovation and access to treatments; 
    • promote healthcare systems that expedite patient access to these treatments.
  • Patients Rising Now Comments On ICER Draft Evidence Report On January 22, 2021, the Institute for Clinical and Economic Review (ICER) released its Draft Evidence Report entitled, “Belimumab and Voclosporin for Lupus Nephritis: Effectiveness and Value.” Our comment letter raised concerns on the report’s:
    • failure to contextualize quality-of-life issues for lupus nephritis patients; 
    • the narrow focus on nephritis only as a sequela of lupus;
    • assumptions about the price of voclosporin based on outdated data.  
  • Patients Rising Endorses Medigap Expansion bill to help those with End Stage Renal Disease (link to statement on website)
    • “Kidney disease doesn’t care whether you’re young or old, so the law shouldn’t discriminate either,” said Terry Wilcox, Executive Director and co-Founder of Patients Rising. “Patients shouldn’t have to choose between sustaining their life or going bankrupt. Every patient must be allowed to get insurance to cover high-dollar, life-sustaining dialysis, regardless of their age. Congresswomen Axne and Beutler are doing the right thing, looking out for a lot of patients who have been ignored.”
  • ICYMI: Patients Rising released the Pro-Patient Agenda as the Senate confirmed Secretary Xavier Becerra:
    • Pro-patient priorities for the agency that will end arbitrary metrics used by ICER that devalue the lives of patients, get patients out of the middle of the drug price wars, and reform healthcare finance. 
    • We break down the January E.O. to explain how to take advantage of this special enrollment period and provide additional resources for those who are recently laid off or are uninsured.
  • Patients Rising Podcast examines Barriers to Rare Disease Treatment. Rare Disease day was February 28, and on a recent Patients Rising Podcast, we discuss the challenges patients have accessing new medical innovations and drug therapies for rare disease. This week’s Patient Correspondent is Lillian Isabella, from NYC, Congressional District 10. 

Every month I will add value to your inbox by providing 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,

Terry

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.