PACE: Patient access matters to everyone

PACE: BIO’s 15th annual patient advocacy event focuses on access

BIO’s 15th annual Patient Advocacy Changemakers Event (PACE) in Washington DC Oct. 22-23 gathers advocates and the biotech industry to discuss their shared goal of getting innovative new therapies to patients.

Why it matters: “If we simply innovate and we don't ensure access for everybody in need, we will have failed. And that's why this conference is so important,” says BIO President & CEO John F. Crowley.

What PACE does: “Bring together people living with disease, people who care for those living with disease, researchers, government policymakers, and industry leaders in a forum to discuss all the different ways in which we can partner, share ideas, and advance therapies for everybody in need,” Crowley says.

Learning, sharing, networking: As always, PACE enables patient advocates to learn more about key policy issues, share ideas, and network with the community, including innovators.

A strong policy focus: PACE is adding specialized breakout sessions to support organizations' strategic advocacy goals.

Baseball’s “Iron Man” Cal Ripken Jr., a Major League legend and successful business leader and philanthropist, is the keynote speaker. Ripken will tell Crowley about his own patient journey and describe lessons he has learned on and off the field about perseverance, resilience, and finding the strength to show up.

Access and hope: “Getting 21st Century medicines to patients requires a 21st century approach to affordability and access, and PACE brings patients, advocates, and BIO members together to shape access today and deliver hope for tomorrow,” says Michele Oshman Chief Patient Advocate and Senior Vice President of Alliance Development.

Read More on Bio.News.

Read: Bio.News interview with PACE panelist from Tigerlily.

Floridians pack hearing to oppose reduced vaccine requirements for school kids

Floridians filled an Oct. 8 public hearing to oppose a Florida Department of Health proposed rule that would reduce the number of vaccines required for attending public school or daycare.

Why it matters: “Vaccination requirements have been instrumental in reducing, and in some cases eliminating deadly diseases. Removing these requirements would reverse decades of scientific and public health progress without evidence-based justification,” per BIO’s written comments.

Floridian voters back vaccination: 79% of Florida voters “support Florida’s long-standing school entry vaccine requirements,” a recent poll shows.

What they said at the hearing:

• Evelyn, 7-year-old cancer survivor who returned to school after chemo: “Mommy and Daddy knew I would be safe because everybody got their vaccine shots when I couldn't.”
• Angela Moore, registered nurse: “We have seen children whose parents have denied them safe and effective vaccines be afflicted by diseases that my generation and the generation before me had the luxury of protection from.”
• Cass Miller, parent: “For families, an outbreak is not just a statistic; it means missing childcare, a parent missing work.”
• Shelly Pedraza, Florida PTA President Elect: “Florida PTA opposes the removal of these vaccine requirements.”
• Teachers: There’s a health risk to themselves and their families.

Exemptions already available: Florida Surgeon General Joseph Ladapo, MD, the new rule’s proponent, claimed the change would improve “parents right to choose,” but Florida already allows for religious and medical exemptions to school vaccine requirements.

BIO’s view: “We are deeply concerned that the proposed changes, if enacted, will decrease immunization coverage in Florida and leave many vulnerable to preventable infectious diseases,” BIO’s written comments say.

Read more on Bio.News.

What Else to Read

BIO applauds FDA proposal for a new rare-disease framework. The Food and Drug Administration (FDA) announced an initiative to develop a “fit-for-purpose framework” for rare disease drug development “by considering the nuances of each disease, patient needs, product type,” and the challenges of small patient populations. BIO's statement: “BIO has long advocated for fit-for-purpose approaches that maintain rigorous scientific standards while recognizing the challenges of small patient populations, complex diseases, and significant unmet need. For millions of patients and families facing a rare disease, time matters. Every delay can mean disease progression, lost opportunities, and more time waiting for a treatment.” FDA scheduled an Oct. 28 hybrid meeting to seek input on the initiative. Read more here.

Merck and GSK expand in Pennsylvania’s Montgomery County life sciences cluster.Merck on Oct. 14 inaugurated the state-of-the-art ADVANCE research facility, which integrates robotic systems and AI capabilities to streamline ongoing clinical development programs. The $550 million addition at Merck’s West Point Campus, where the company has had a presence since 1953, is part of Merck’s $70 billion commitment to domestic manufacturing and R&D. GSK on Oct. 9 announced plans for an $800 million expansion in Upper Merion Township to establish a biopharmaceutical innovation and manufacturing hub, integrating commercial production, R&D, and advanced digital capabilities. GSK, with U.S. headquarters in Philadelphia, announced an $800 million investment in Marietta, PA in 2024. Pennsylvania Gov. Josh Shapiro praised expansions by Merck and GSK.

Genentech documentary celebrates 50th year of the “original biotech” company.“The Impossible Bet” was produced in collaboration with The New York Times’ T Brand Studio to explore Genentech’s growth and impact and reflect on the role patients have played in the industry’s development. The film follows a lively story about the first modern drug discovery of human insulin and a breast cancer treatment, as well as the patient influence on “compassionate use.” Read more on Bio.News.

Zealand Pharma opens new research hub in Cambridge, MA. BIO member Zealand Pharma officially opened the firm's primary U.S. address Oct. 1. "In December, we presented our ambition to become a leader in obesity and metabolic health. This research hub is a commitment to achieve that ambition. Tomorrow, our scientists begin research here, joining colleagues in Copenhagen, and I am excited to see this long-term investment and bridging between two leading life science communities flourish," said Adam Steensberg, President and CEO of Zealand Pharma. Read more here.

South Dakota biotech can help America beat China writes South Dakota Biotech Executive Director Joni Ekstrum. The state’s policymakers are doing good work to protect American innovation in defense and the semiconductor industries, she writes. “But military hardware and advanced electronics aren’t the only innovations America will need to secure its future. To overcome the threat posed by China, our leaders must also help strengthen another South Dakota industry: our growing biotechnology sector,” she writes. Read more here.

Beltway Report

Both the House and Senate are back home campaigning through the election. They will return the week of Nov. 9.