Healthcare Policy Pop - Patients Rising Now

Latest Episodes:

Drug Supply Shortage Emergency + PASTEUR Act Jun 29, 2023

Show notes

Dr. Marion Mass, a pediatrician, has seen up close and personal what supply chain shortages can do; a news article from Oncology Business Review says that the proportion of oral cancer drugs that needed prior authorization increased from 53 percent to 96 percent between 2010 and 2019; Diane Talbert, patient correspondent from MD-05, discusses the devastating effects of prior authorization; and Ella Balasa, a cystic fibrosis patient advocate, tells us the importance of the PASTEUR Act being reintroduced.

Healthcare Policy Pop Episode: Crises in Drug Shortages + Medical Supplies

Frank Pallone Jr. News Release: Pallone Calls on E&C Republican Leaders to Address National Shortages Crisis as Part of PAHPA Reauthorization

Oncology Business Review News Article: Cancer Drugs Needing Prior Authorization Almost Doubled, Lives at Risk

Patients Rising Stories

PASTEUR Act

RSV Vaccines + Patient Experience Data Jun 27, 2023

Show notes

Ronda Miller-Ernest, a Pediatric Nurse Practitioner for more than 30 years, discusses the importance of RSV vaccines and the Vaccines for Children Program in the wake of an ACIP meeting; the FDA has opened up its public comment period for guidance regarding how to incorporate patient experiences into the drug development and regulatory review process; Jodie Solari, Communications Lead for the Galactosemia Foundation, explains a clinical trial took place where the drug did not meet all of the FDA’s established markers, but the improvements to families should not be ignored; and the FDA and several other agencies are some of the few recipients of increased funding thanks to a new bill from the Senate Committee on Appropriations.

Patients Rising Podcast Webpage: The Fight Against RSV Revs Up

CDC Webpage: ACIP Presentation Slides – June 21-23, 2023 Meeting

CDC Webpage: Vaccines for Children Program

FDA Comment Period Webpage

Galactosemia Foundation Webpage

Health Policies that Hurt Community Pharmacists Jun 22, 2023

Show notes

Anne Cassity, Senior Vice President of Government Affairs at the National Community Pharmacists Association, says community pharmacists are concerned about several PBM tactics that make delivering care more costly to them and the patients; several bills that address PBM tactics have been introduced in the Senate and House; Amy Gietzen, co-founder of “Waiting Room Entertainment” from New York’s 26th district, explains what her organization aims to do for other patients like her; and patients are watching the increase of prescription drug affordability boards in state legislatures across the country.

Senate Finance PBM Bill

Waiting Room Entertainment

Pagosa Daily Post News Article: Colorado Panel Will Decide Which Medicine to Make Affordable

Patients Call for PBM Reforms Jun 15, 2023

Show notes

Terry Wilcox, CEO of Patients Rising Now, outlines the top priorities for this year’s We the Patients Fly-In, including PBM reform; and Dorothea Lantz, a caregiver from Florida’s 27th Congressional District, says its important for lawmakers to listen to people who live with healthcare policy issues every day because they know the intricacies of what they deal with.

Patients Rising Now Webpage

Patients on Capitol Hill Jun 13, 2023

Show notes

Michael Riotto, a patient advocate from PA-01, says the QALY is top of mind for him as he attends the 2023 Patients Rising Now ‘We The Patients’ Fly-In; Tomiyo Williams, a patient advocate from GA-6, shares how step therapy policies hurt her daughter’s care. Patients will also be talking about the Dental and Optometric Care Access Act at the Fly-In; and Patients Rising awards eleven companies with its annual “Health Plan Hero” distinction, which recognizes companies with stellar health plans.

Patients Rising Now Webpage: We The Patients Fly-In

U.S. Representatives News Release: Carter, Clarke, Sessions introduce bill to Ensure Access to Quality Dental and Optometric Care

Patients Rising Podcast Webpage: Better Care, Lower Costs

Video: Stop Vision Benefit Manager Abuses

Michael Riotto's Story

CMS' New Power Jun 08, 2023

Show notes

The Patient Access and Affordability Project, a program of Patients Rising, releases principles for CMS to harness the power of patients as the agency implements the Inflation Reduction Act; CMS is foregoing some of the normal requirements for adequate public comment and review times; Patients Rising Now submitted a letter of support for Bill S0799 in Rhode Island and signed onto a joint testimony against a bill limiting patient access to biomarker testing.

Patient Access and Affordability Project Webpage: CMS Principles

Patient Access and Affordability Project Webpage

Patients Rising Now Webpage: Rhode Island Letter

Rhode Island State Legislature Webpage: Senate Bill 799

Patients Rising Now Webpage: Biomarker Letter

CMS Alzheimer's Decisions + No Data Jun 06, 2023

Show notes

Russ Paulsen, Chief Operating Officer for UsAgainstAlzheimer’s, explains how some recent coverage decisions from CMS are affecting thousands of patients a day; ACIP’s public comment period RSV vaccines is officially open; Tony Newberne, a patient advocate from NC’s 14th congressional district, discusses his policy priorities, including QALY reforms, as he gets ready for Patients Rising Now’s Washington D.C. We The Patients Fly-In; and Patients Rising Now has submitted a letter to the Massachusetts Joint Committee on Health Care Financing supporting bill S754 which would mandate comprehensive coverage for obesity treatment.

UsAgainstAlzheimer’s Webpage: New Poll: Huge Majorities Want Medicare to Cover Cost of Alzheimer’s Drugs

CDC Webpage: ACIP Meeting Information

Massachusetts Legislature Webpage: Bill S.754

UHC Prior Authorization Changes Jun 01, 2023

Show notes

Dr. Bruce Hennessy, a gastroenterologist with the American Society for Gastrointestinal Endoscopy, discusses UnitedHealthcare’s decision to require new prior authorization for 61 procedures, including colonoscopies. In response to provider and patient concerns, UHC has amended its prior authorization requirements.

The Medicaid work requirement has been stripped from the debt ceiling negotiations bill; Valerie Jensen, Associate Director for Drug Shortages in the Center for Drug Evaluation and Research at the FDA, outlines the challenges and potential solutions to the ongoing drug shortages; and the Consumer Product Safety Commission recently released some new stock photos that include people with physical disabilities.

UnitedHealth backs off contentious prior authorization plan

UnitedHealthcare Letter

FDA Report: Drug Shortages

NPR News Article: People with disabilities aren't often seen in stock photos. The CPSC is changing that

Patients Vulnerable to PBM Tactics May 25, 2023

Show notes

On Wednesday, 19 bills were set to be marked up including the PATIENT Act of 2023, and a 340B transparency bill; the House Committee on Oversight and Accountability held a hearing to investigate PBMs; and Patients Rising Now has compiled a Patient Impact Report on the impacts of PBM practices on patients.

House Committee on Energy and Commerce Markup

Buddy Carter Report: PBM Abuses

Patients Rising Now Webpage: Patient Impact Report – Pharmacy Benefit Managers

Action Needed Against Alternative Funding Vendors May 23, 2023

Show notes

The House Energy and Commerce Health Subcommittee planned to markup 17 bills, but instead, the subcommittee only worked on six; Federal Trade Commission expands its probe into pharmacy benefit managers and group purchasing organizations; Carl Schmid, Executive Director of the HIV and Hepatitis Policy Institute, explains what alternative funding vendors are and how they’re another deterrent to patients getting affordable care; and the House Appropriations Committee releases an FDA funding bill.

Patients Rising Now Statement: Patients Rising Now CEO Wilcox Offers Statement on Senate Introduction of Copay Accumulator Legislation

House Energy and Commerce Health Subcommittee Meeting

Fierce Healthcare News Article: FTC expands probe into pharmacy benefit managers to GPOs

Patients Rising Webpage: Patients Rising Stories