COP26 begins this weekend, and we’re wrapping up the Patient and Health Advocacy Summit with World Psoriasis Day and why patient stories matter. And, yeah, we buried the lede—there’s news on drug price controls at the end. (836 words, 4 minutes, 10 seconds)Also, this…
The only newsletter at the intersection of biotech, politics, and policy
October 29, 2021
COP26 begins this weekend, and we’re wrapping up the Patient and Health Advocacy Summit with World Psoriasis Day and why patient stories matter. And, yeah, we buried the lede—there’s news on drug price controls at the end. (836 words, 4 minutes, 10 seconds)
Also, this isn't a Halloween costume, it's our new look which officially rolls out Monday!
It's COP26 - here's what to know
Agriculture Secretary Tom Vilsack announced that 50+ countries and organizations (including BIO!) have joined a U.S. coalition for sustainable productivity growth—a promising sign ahead of critical climate meetings beginning Sunday.
What’s happening this weekend?COP26 begins Sunday in Glasgow. The UN climate summit will bring together governments, businesses, and other stakeholders to try to hammer out the details on how we’re actually going to curb emissions and keep warming to 1.5 C—Bloomberg has a helpful guide.
What they’re saying: “If we are going to end hunger, while minimizing environmental impacts, we must commit to developing and deploying new ways of doing things in agriculture,” said Secretary Vilsack.
BIO.org: GMOS and Gene Editing—Nothing to Be Afraid Of "This Halloween season, ghosts and ghouls are something to worry about! Genetic engineering? Not so much. Similar to scary campfire stories, every once in a while, someone will share a terrifying tale about how genetic engineering caused an impossible reaction to someone they know and promise it really happened. But you can be rest assured that just like the urban legends, these stories are not true. Here are some common truths to combat common misconceptions."
How to catch up on BIO's Patient & Health Advocacy Digital Summit:
The Patient and Health Advocacy Summit Day 2 brought together government, industry, and patient advocates to discuss everything from proposed legislation to how patients can engage in the policymaking process—catch up on the live blog or keep reading for more lessons learned.
1. Digital technology can improve healthcare
During COVID-19, telemedicine visits went from tens of thousands to millions practically overnight, said Anne Pariser, MD, Director of the Office of Rare Diseases Research at NIH’s National Center for Advancing Translational Sciences.
“This had a real leveling effect in terms of access,” especially for patients who normally had difficulty traveling to see a doctor.
2. We must protect the Accelerated Approval Pathway.
Developed to allow for faster approval of drugs for HIV-AIDS, the Accelerated Approval Pathway allows limited, more focused clinical trials for drugs that treat rare, life-threatening conditions.
More than 250 vital drugs have been approved through the program since the 1990s, but it’s now under threat. “I think it’s important that people understand, it does not compromise rigor. So it requires that there be the same level of efficacy and safety for products that go through this pathway,” said Annie Kennedy, Chief of Advocacy and Policy at the EveryLife Foundation.
3. When sharing your patient perspective with federal agencies, "focus on the disease."
"Focus on that clinical context. Focus on the disease," and not necessarily a particular drug or development program, said Theresa Mullin, PhD, Associate Director for Strategic Initiatives, U.S. FDA Center for Drug Evaluation and Research (CDER). “It's probably better and more useful to focus on your experience.”
“Try to bring a diversity of perspectives, because we really do want to hear from the full range of the community,” she continued.
Speaking of patients, it’s World Psoriasis Day, an annual day to build understanding of a misunderstood disease that affects 125 million people worldwide.
Psoriasis is NOT a skin condition—it’s a chronic disease that can lead to type 2 diabetes, cardiovascular disease, depression, or anxiety, as well as psoriatic arthritis, according to the National Psoriasis Foundation.
It’s “driven by an overly active immune system that can attack many areas of the body,”says Dr. Paul S. Yamauchi, clinical assistant professor of dermatology at the David Geffen School of Medicine at UCLA, using inflammatory immune cells that normally defend the body.
NBC News: Novavax seeks authorization for COVID vaccine in the U.K. “The submission is based on data from a late-stage trial involving 15,000 volunteers in the U.K., showing that the experimental vaccine was 96.4 percent effective against the original coronavirus strain.”
If we learned one thing from this week's Patient & Health Advocacy Summit, it’s that patient stories matter when it comes to drug R&D and health care policy.
Since launching the I am BIO campaign a year and a half ago, we’ve heard from a lot of inspiring patients and patient advocates—fighting for treatments, cures, and visibility.
President Biden’s Friday: Meeting with Pope Francis then holding bilateral meetings with Italian President Sergio Mattarella, Italian Prime Minister Mario Draghi, and French President Emanuel Macron (their first meeting after that submarine debacle).
What’s Happening on Capitol Hill: “The sweeping social spending package before Congress remains a work in progress and four industry lobbyists told POLITICO they aren’t celebrating just yet. But President Joe Biden’s Thursday pitch to Capitol Hill eliminates any effort to crack down on drug prices, a coup for the industry that has spent months pouring millions into lobbying and advertising campaigns,” says POLITICO. This is promising news for patients and future cures—but of course, we aren’t letting our guard down yet!