Patient advocates unite to share stories in D.C.

A busy Monday brings all the highlights from BIO's Patient and Health Advocacy Summit last week, plus what BIO's talking about at the World Food Prize event in Iowa tomorrow. (793 words, 3 minutes, 57 seconds)

PHAS: Patient advocates unite to share stories, address barriers to treatment

Patient advocates from across the country gathered in Washington, D.C., last week for the BIO Patient and Health Advocacy Summit (PHAS). Bio.News was on the scene to capture the highlights.

Why it matters: Patients face a number of barriers when seeking treatment and care. Whether it is delays or denials of coverage by healthcare insurance companies or poorly designed/misused legislation, such barriers can be devastating for patients and caregivers.

What we’re talking about: Patient advocates discussed issues including alternative funding programs, coverage for accelerated approval drugs, step therapy, prescription drug affordability boards, and much more—and how patient stories can help regulators understand the impact.

“We’re talking about storytelling, and storytelling for impact,” said Michele Oshman, SVP and Head of Patient Advocacy at BIO. “How do we make sure that folks know how to tell their story and can advocate on Capitol Hill on behalf of the patients that they serve?”

The bottom line: “The advice that I would have for biotech innovators would be to make sure—before you start anything—make an effort to involve patients in the development process. There are no better people to help you understand what individual communities need than patients themselves,” said Melanie Lendnal, SVP of Policy & Advocacy at the ALS Association.

Read more on Bio.News.

ICYMI: I am BIO Podcast on the power of patient advocacy

A family fighting rare disease, a biopharma startup, and an organization seeking congressional support for new rare disease drugs shared their journeys in the most recent episode of the I am BIO Podcast.

Why it matters: A rare disease afflicts fewer than 200,000 U.S. patients, but with over 7,000 rare diseases identified in the U.S., many are impacted.

One family’s fight: Courtney and Joe Dion founded the Dion Foundation for Children with Rare Disease after their son and daughter developed limb-girdle muscular dystrophy (LGMD), a degenerative, genetic muscle disorder.

Reasons for hope: Atamyo Therapeutics’ gene therapy for LGMD is ready for clinical trial, says CEO Stephane Degove. The Dion Foundation is providing financial and clinical trial support.

What’s needed now: Reauthorization of the Pediatric Priority Review Voucher (PRV) program, which awards makers of approved rare disease drugs a voucher for priority Food and Drug Administration (FDA) review for a future drug. Drug makers can also fund future research by selling the voucher to another company. The program is up for renewal in December.  

Listen to the episode at www.bio.org/podcast or wherever you get your podcasts.

BIO’s World Food Prize panel to explore global food security through crop genetics

Means for improving global food security by ensuring smallholder farmers have access to the latest innovations in crop genetics will be explored in a 2024 World Food Prize panel discussion cosponsored by BIO.

The details: The panel will take place on Tuesday, Oct. 29, at 8pm alongside the World Food Prize’s premier annual event at the Iowa Events Center in Des Moines. BIO is cosponsoring the panel with USAID and 2Blades, whose mission is “to advance plant science discoveries into safe, effective, and long-lasting solutions to crop losses caused by diseases, insects, and weeds.”

Why it matters: “The widening production gap between commercial and smallholder farmers stems from the highly fragmented nature of the path that connects innovations in the lab with farmers in the field,” says an announcement for the panel.

The importance of smallholders: “Approximately 97 percent of the world’s farmers farm on less than 10 hectares (about 25 acres) of land,” according to Bayer Global, another BIO member participating in the panel. They often feed more than half the population in their regions.

Learn more at Bio.News.

What Else to Read This Week

Have superbugs met their match with generative AI? “By vastly accelerating the antibiotic discovery process, generative AI—together with sound public policy—could play a part in solving the life-and-death struggle against [antimicrobial resistance],” writes Dr. Akhila Kosaraju, CEO and president of Phare Bio, in Stanford Social Innovation Review.

Rep. Adrian Smith (R-NE) urges action on the Mexico corn ban. “Last month, I worked with bipartisan colleagues to send a letter urging the administration to conduct robust engagement with stakeholders and Mexican leaders as Mexico considers constitutional reforms which compromise its [U.S.-Mexico-Canada Agreement] commitments and could hurt American agricultural producers,” he says in a recent column.

MIT recognizes two BIO members. ICYMI, MIT Technology Review named LanzaJet and Pivot Bio among 15 Climate Tech Companies to Watch, companies the editors “think have the best shot at making a difference on climate change.” Read more here.

The BIO Intellectual Property Counsels Committee Conference returns to D.C. in November. Taking place Nov. 18-20, the conference delivers the latest insights from biotech IP experts, as well as networking events. You'll come away with practical information you can put into use at your organization the next day. Learn more and register here.

Beltway Report: What's Ahead in Washington

Congress remains in recess until after the election.