Welcome to the July 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.
Patients Rising Now: First In-Person Fly-In: We the Patients Over fifty advocates came to Washington for our inaugural Fly-In, #WethePatients. Patients and caregivers attended over 45 meetings on Capitol Hill and covered the following topics:
- Pro-Patient Access (The Safe Step Act, The Improving Seniors Timely Access to Care Act, the Help Ensure Lower Patient Copays Act);
- Transparency (out-of-pocket expenses, drug pricing, drug rebates, co-pay accumulators and benefit design);
- UFA authorization (accelerated approval, generic drugs, the BENEFIT Act);
- PBMs and the QALY.
The Patient Need for the Pharmacy Benefit Manager Transparency Act: PBMs are a significant roadblock in the path of patients receiving treatment and care. Patients Rising Now submitted comments to the FTC on the various ways that tactics used by PBMs affect cost of treatment and access to care. PRN also supports the Pharmacy Benefit Manager Transparency Act (S.4293), which would increase transparency into the business practices of PBMs and prohibit deceptive and unfair practices that drive up prescription prices.
Patient Access to Care is in Jeopardy: The HHS Office of Inspector General reported significant challenges for patient access to routine care and treatment, mental and behavioral health care, and care in rural areas, and COVID-19 care. On top of that, hospitals are planning to cut certain essential services consequent to staffing shortages. While the solutions are varied, PRN supports efforts to sustain workforce efforts. Learn more here.
Patients Rising Now Thanks Lawmakers for Supporting Huntington’s Disease Legislation: PRN sent a letter to Senators Gillibrand & Cassidy and Congressmen Pascrell & Kinzinger for their support of The Huntington’s Disease Disability Insurance Access Acts of 2021 (S. 868 and H.R. 2050). These bills would remove the long waits and red tape that patients diagnosed with Huntington’s have experienced when seeking Medicare and treatment. Huntington’s Disease is a rare, genetic disease that leads to the progressive breakdown of cells in the brain. This causes the worsening of motor functions, cognitive ability, and the emergence of various psychiatric disorders such as depression.
Patients Rising Now Supports the Expanding Access to Low-Cost Generics Act of 2021: PRN penned a letter to Senators Murray, Burr, Tina Smith, and Braun regarding The Expanding Access to Low-Cost Generics Act of 2021 (S.2910). This legislation would revise parameters established in 1984 in the “Hatch-Waxman Act,” which provided excellent pathways for generic drug manufacturers to introduce generic versions of brand drugs to market. Before the Hatch-Waxman Act, only 19% of prescriptions were able to be filled with generics. After its enactment, almost 90% of prescriptions are. Before Hatch-Waxman, it would take years for generic drugs to enter the market even after a patent had expired. Since Hatch-Waxman, generics can enter the market almost immediately after patent expiration and with little to no interruption in a patient’s treatment.
The Latest on the Patients Rising Podcast:
- The Power of Patient Data
- The Future of Pharmacies
- Patients on Capitol Hill
- How Chronic Illness Impacts Families
- Patient Spotlight: Amy Gietzen, a patient with scleroderma from NY-26, highlights the need for greater research funding for scleroderma and rare disease (29:55).
Every month we hope to lend you a patient lens to legislation and regulation. If Patients Rising Now can be of assistance to your office, please reach out to me directly via firstname.lastname@example.org or at 202-750-4331.