This past week, the Biotechnology Innovation Organization (BIO) hosted its annual patient advocacy summit, the Patient Advocacy Changemakers Event (PACE), in Washington, D.C. The theme for this year’s summit was “Breaking Barriers to 21^st Century Access,” emphasizing the importance of ensuring innovative medicines reach patients who need them.  

“By putting patients first, we stay focused on why we work so hard every day to ensure that our laws and policies help forward science, innovation, and access to life-changing medicines,” said BIO President and CEO John F. Crowley. The BIO “PACE is a moment to connect one-on-one with the patient advocates who sit at the heart of our mission to advance patient-focused public policies.” 

CBSA’s Vice President and Counsel for Policy + Advocacy, Amy Berenbaum Goodman, represented Colorado’s thriving life sciences ecosystem at the event and participated in a panel discussion on Strategies for Success, during which attendees heard “from leading advocates whose efforts resulted in positive change.” Goodman sat on the panel with Hilary Gee Goeckner, Director of State & Local Campaigns at the American Cancer Society Cancer Action Network (ACS CAN); Mark Hobraczk, Public Policy Director at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis); and Brian Warren, BIO’s Vice President of State Government Affairs. The panel was moderated by Dmitri Siegel, U.S. Government Affairs, Policy & Alliance at Bristol Myers Squibb. The discussion highlighted wins achieved for patients and the life sciences ecosystem in 2025 and the state of play going into 2026. 

In an article summarizing the event, “BIO PACE 2025: Patients need to ensure state policies enable access to medicine,” BIO highlighted Goodman’s perspective about the importance of the patient voice and CBSA’s role as the representative of Colorado’s life sciences ecosystem:

“We have been trying really hard to not only be out there representing the life sciences ecosystem itself, but also all of the patients that our members serve,” said Amy Goodman, VP and Counsel, Policy + Advocacy, Colorado BioScience Association. “We try to be partners and also elevate your voices in other ways, as well.” 

When summarizing what attendees learned at the BIO PACE, BIO highlighted Prescription Drug Affordability Boards (PDABs) as a key topic: “There is still a growing threat to patient access from state boards to control prices, but officials are beginning to listen when patients explain the problems caused by PDABs.” CBSA’s Policy Blog: Colorado PDAB Sets First Upper Payment Limit from October 7, 2025, laid out how Colorado became the first state PDAB to take the landmark step of setting an Upper Payment Limit (UPL) on a drug—an ill-conceived mechanism to control drug costs. 

BIO’s PACE 2025 article featured a section (excerpt included below) about how patients are finally being heard on PDAB, which included comments from CBSA’s Amy Goodman: 

Patients finally being heard on PDABs 

Along with Medicaid cuts, PDABs – state boards that seek to cap prices for prescription drugs – were another major concern for everyone at the conference. (PDABs also came up at a recent BIO Coffee Chat.) These boards have been widely criticized for harming innovation in medicines and limiting states’ access to prescription drugs. Yet several states have passed PDAB legislation, Colorado has begun using its PDAB to set prices, and other states are considering establishing them. 

“At BIO, we’re looking right now at about 10 states where we could potentially see legislation introduced next year on these,” said [Patrick Plues, BIO’s Senior VP, State Government Affairs & Affiliate Relations]. 

[Kari Lato, Director of Policy & Advocacy, Rx4good, and founder of the Rare & Ready Coalition,] founded the Rare & Ready Coalition in 2022 with the priority of dealing with PDABs, because “we found some really negative consequences of these PDABs when it comes to the rare disease community.” 

“PDABs are really just bureaucratic panels that have insurers, pharmacists, state officials, and health economists on it—and no patients,” Lato said. “PDABs do not lower copayments. They do not reduce premiums. So far, of the four PDABs that already exist right now, they’ve spent over $15 million in taxpayer money, and patients have not seen a dime of savings.” 

Fortunately, states are beginning to listen to patients and patient advocates. 

“In the most recent Colorado PDAB meetings, although they set an upper payment limit for the first time, without going through a rigorous process that we think at a fair minimum really needed to take place, we were heartened at least a little bit to see that several PDAB members were acknowledging issues, finally, that patients and other stakeholders have been raising for a long time about unintended consequences,” said [Amy Goodman, VP and Counsel, Policy + Advocacy, Colorado BioScience Association]. 

[Mark Hobraczk, Public Policy Director, AiArthritis] noted similar progress in other states. 

“We have also seen an acknowledgement that patient input hasn’t been meaningful, and that they are looking for ways to finally address that. So whether it’s Colorado or Maryland or some of these other PDABs, there has been an acknowledgement of that.” 

Other key topics discussed at the BIO PACE included: 

IRA: The Inflation Reduction Act (IRA) is increasingly impacting patient access through tighter utilization management by insurers, advocates said. Meanwhile, there are concerns that delayed reimbursements will hurt small community pharmacies—and by extension patient access. 
 
340B: Though Congress created this program to help safety-net hospitals care for underinsured patients, it became a profit generator for wealthy hospitals. Patient advocates want reform. 
 
Medicaid cuts: The pain of reduced federal funding will play out in state legislatures as Medicaid budgets are cut, but advocates urged push-back through patients’ stories. Read more. 
 
Vaccine hesitancy: Several things this year have mobilized advocates to try to protect vaccine access at the state and federal level, said Phyllis Arthur, BIO EVP & Head of Healthcare Policy and Programs, who moderated a panel on vaccines. Read more. 
 
Small but mighty miracles: While Genetically Targeted Technologies work wonders, the Inflation Reduction Act (IRA) restrictions on small molecule drugs make it hard to support the development of these innovations. The MINI Act is one proposed solution. 
 
BIO’s view: “When we think about 21st-century access for patients, it’s a constellation of policy challenges that need to come together to be truly addressed: the pediatric priority review voucher program, the PDUFA process, 340B reforms, the Safe Step Act, and more,” said Michele Oshman, BIO’s Chief Patient Advocate and Head, Patient Advocacy Center of Excellence. “We need to ensure that the policy that shapes the 21st-century innovation environment is also creating a 21st-century access environment for patients.”