On November 1st, Ady Barkan, co-founder of Be A Hero, widely-known advocate in the fight for health justice, and who got his start in health advocacy at UAEM, died of complications from amyotrophic lateral sclerosis (ALS) at 39 years old. When he was diagnosed in 2016, Ady chose to leverage his own powerful patient story to persuade policymakers to prioritize people over profit. He will be sorely missed but his impact and legacy to help transform the US healthcare system will continue.
Welcome to the Week in Review.
1. P4ADNow Urges Senate Leadership To Pass Competition Bills
- On Tuesday, over 60 organizations sent a letter, co-led by P4ADNow and AARP, to the Senate to advance a package of bipartisan bills to lower drug prices through reforms to our patent and regulatory systems and increased competition. The organizations — representing patients, consumers, seniors, churches, students, and disease advocacy groups — called on senators to urgently pass these reforms to lower prescription drug prices for millions of patients. The letter addressed to Senate leadership underscored that these reforms have significant bipartisan backing from a majority of voters and that this package of bills will save taxpayers $2.5-3 billion over the next 10 years. “Senators on both sides of the aisle have put in far too much work on these bills over several years to let this opportunity be lost,” said P4ADNow’s Merith Basey. “The moment is at hand to enact reforms that voters overwhelmingly support and which will help patients of all ages regardless of whether they get their health care in the private or public sector.” We urge the 118th Senate to ensure that patients and consumers are seeing relief from high drug prices and advance bipartisan legislation to curb abuses to our patent and regulatory systems and encourage generic and biosimilar competition coming to market. Congress, over to you! — (P4ADNow, MedPage City, Inside Health Policy, Campaign For Sustainable Rx Prices)
2. P4AD Patient Advocates At CMS Listening Sessions
- As part of the Medicare Drug Price Negotiation Program, Centers for Medicare and Medicaid Services (CMS) began its series of virtual patient-focused listening sessions this week. Dedicated P4AD patient advocates Judy Aiken and Bob Parant, shared their experiences with high drug prices and what Medicare negotiation would mean for them. “Enbrel’s high cost has been a burden, in cost and anxiety. A lower price for this drug will be life changing for me and thousands of other patients,” remarked Judy at the Enbrel listening session. While the sessions are intended to be an opportunity for patients, caregivers, and patient advocacy groups to share input related to the first 10 drugs eligible for Medicare negotiations, common Big Pharma talking points were clearly on display via numerous representatives of so-called advocacy groups. P4AD’s David Mitchell, who participated in the initial session for Eliquis, a blood thinner medication he relies on as a patient living with multiple myeloma, told Politico that “[Big] Pharma tried to hijack the first meeting with its paid front groups.” Next week, the listening sessions continue through November 15th. Keep an eye out for passionate P4AD patient advocates expected to share their lived experiences with unjustified high drug prices and what it means to have Medicare negotiate lower drug prices for their essential medicines. — (The White House, Protect Our Care, Politico)
3. Medicare Negotiations Will Bring Relief To Patients
- Patients on Medicare are eager for successful implementation of the historic program and will begin to feel relief when lower negotiated drug prices take effect in 2026. In an interview with MedPageToday, Centers for Medicare and Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure explainedhow patients and taxpayers will see relief from Medicare negotiation: “So it helps people in Medicare, but it also helps all of us as taxpayers who are supporting the Medicare system to make sure we’re getting the best deal.” Public Citizen released a report that called out Amgen for the drug company’s extensive patent abuses for its blockbuster drug Enbrel, one of the first selected drugs to be negotiated. Public Citizen argued that Medicare could have saved “$1,053,023,122 in less than four years” if competition had been allowed to come to market in 2019. Thankfully, patients on Medicare will see a lower negotiated price for this essential medication. — (MedPage Today, Public Citizen)
4. On The Horizon: Sickle Cell Disease Gene Therapy
- We are on the cusp of revolutionary cell and gene therapies coming to market that offer potentially curative benefits to patients. However, the looming question of how patients, taxpayers, and our health care system will pay for these treatments still remains to be answered. On Tuesday, the FDA advisory committee reviewed Exa-cel — a treatment using gene-editing tool CRISPR — which could become the first gene therapy for sickle cell disease if approved next month. Sickle cell disease affects 100,000 people in the U.S., and disproportionately impacts people who are Black or Brown. This cutting-edge, one-time treatment could save patients living with sickle cell disease from a lifetime of severe illness — but it’s expected multi-million dollar price tag will put this treatment out of reach for those who need it the most. “I’m worried that this will be a very highly lauded technology that people will not be able to use,” said Melissa Clearly, an assistant professor at the University of Michigan School of Public Health who studies sickle cell. In an op-ed for STAT News, Dr. Vivian G. Cheung wrote that “without targeted investment in medical infrastructure, these innovations will remain inaccessible to many.” Drugs don’t work if people can’t afford them. — (NBC, WPR, STAT)
Have a great weekend!