What patient advocates said at BIO 2024

Starting a new week with a look back at what patient advocates said at BIO 2024, and why patient stories matter—plus, rising temperatures nationwide are a reminder of the need to advance biotech solutions. (640 words, 3 minutes, 12 seconds)

BIO 2024: What patient advocates said about AFPs, Medicare Part D, and PDABs

Patients and patient advocates took center stage at the 2024 BIO International Convention—here are a few things they said about key policy issues.

Alternative Funding Programs (AFPs)remove specialty drugs from an insurer’s formulary, then make patients apply to drug makers’ charitable patient assistant programs (PAPs). AFPs get charity drugs for free and take a fee from insurance companies, who save money.

AFPs “present a serious danger to patient access for cancer patients as well as other serious chronic conditions,” said Cancer Care’s Kim Czubaruk in an interview. “This takes valuable time away—whether a patient is ultimately approved and can get their medication from a patient assistance program or not.”

AFPs can become an obstacle to drug access “even for our most savvy patients,” said the Cystic Fibrosis Foundation’s Theresa Alban during the panel.

Prescription Drug Affordability Boards (PDABs) are state boards that aim to cap, control, and dictate the price of drugs that manufacturers can charge. States are looking at the Inflation Reduction Act’s Maximum Fair Prices (MFPs) as a factor to establish upper payment limits.

“I think it’s important to note, from a patient perspective, that the advertisements and promotions for PDABs very largely promote that they will save out-of-pocket costs for all patients in the state, and neither one is true,” said AiArthritis CEO Tiffany Westrich-Robertson in an interview after the session.

The better news: “It was about time we had a cap in Medicare Part D—the only public health care system in the United States that at the time did not have a cap,” said the National Health Council’s Eric Gascho during a session on the pluses and minuses of the Inflation Reduction Act.

Why the patient voice matters: “Patient advocates can play a really critical role in helping us design clinical studies that really mean more to patients,” said Anthony Mancini, EVP and COO of Genmab, in an interview. “They can help us really with deeper insights into the patient perspective on the unmet need. They can help us with the endpoints to make sure those endpoints really matter to patients. And they can also help us with patient participation and retention in clinical studies.” 

Keep cool and carry on – with biotech

A dangerous heat wave threatening the Atlantic coast and the Midwest, and forest fires raging in California, are reminders of the need to address the greenhouse gas emissions contributing to temperature rise.

What's happening: A punishing heat dome of steadily climbing temperatures in the Midwest, the Northeast, and the Mid-Atlantic mean extreme heat advisories for 22.6 million Americans this week, with many more at risk.

What biotech can do: “Industrial biotechnology represents one promising technology that can save energy and significantly reduce CO2 emissions when based on sustainable and renewable resources,” say researchers in Nature.

Sustainable aviation fuels (SAFs), like those developed by BIO members LanzaJet and Virent, can reduce emissions from air travel by as much as 70%.

Other biotech solutions include…produce engineered to reduce food waste, alternatives to synthetic fertilizers, animal feed additives to reduce methane emissions, plant-based proteins to help cut agriculture’s GHG emissions, and biobased fuels and other materials.

What policymakers can do: A new congressional caucus has joined White House efforts to get SAFs off the ground. Streamlining regulation of biotech for plants, animals, and microorganisms, and a greenlight for methane-reducing feed, promise faster action in efforts to cut agriculture’s GHGs.

BIO’s view: “When you look at the many ways in which biotech companies are rising to the challenge of reducing and mitigating climate impacts … there is no question that biotech is ‘climate tech,’” says Beth Ellikidis, VP for Agriculture and Environment at BIO.

President Biden’s Monday: Oval Office meeting with Secretary General Jens Stoltenberg of NATO, who last week pushed for looser restrictions on the use of U.S. weapons to strike inside Russia, per POLITICO.

What’s Happening on Capitol Hill: No hearings today.