Representing all facets of the patient stakeholder community, participants in BIO’s eighth Patient and Health Advocacy Summit (#BIOSummit19) came together to proclaim: “I am BIO.” But as Dr. Julie Gerberding, executive vice president and chief patent officer at Merck and Co., who acted as the event’s chief convener, added: “I am BIO, but we need BIO.”
“We’re poised on the precipice of scientific possibility, there’s enormous potential for science to keep that innovation engine alive,” Dr. Gerberding said. “There’s an incredible unmet need, so many places where we need new medicines. But current policy proposals present existential threats to innovation.”
The clash between limitless scientific innovation and divisive political forces dominated the two-day conference at the Park Hyatt in Washington, D.C. At the same time, the growing strength of the patient advocacy community brought hope for the future.
“We have two moral imperatives: Ensure no patient goes without their medicine because of their out-of-pocket costs, and ensure access isn’t expanded at the expense of innovation for patients still waiting for a cure,” said Jim Greenwood, President and CEO of BIO.
Participants learned how the FDA is making important progress in creating effective patient engagement processes and shared best practices for raising awareness about areas of unmet needs.
There also was detailed discussion about H.R. 3 – a proposal in Congress to lower drug prices by imposing international reference pricing on government programs and the commercial market, as well as the Trump administration’s proposal to apply international reference pricing to certain drugs reimbursed by Medicare Part B.
Senator Tim Scott (R-SC) provided a window into bipartisan efforts in the Senate to address the drug pricing debate.
“We need to honor our commitment to patients and keep alive and healthy the R&D that is for future patients,” Sen. Scott said. “If we are going to remain at the cutting edge of medicine we are going to have to be proactive as a Congress. We are going to have to sit down and figure out where the two sides come together and get to yes, and then we’re going to have to be willing to put the rest of it to the side.”
Participants were treated to a lively political download during lunchtime, from veteran Washington journalist Amy Walter with the Cook Report.
“It’s easy to get trapped in the cycle of outrage, everything for these past two years has been norm busting,” Walter said. “The thing I worry about more than people disagreeing is the disengagement of well-meaning people and the ones who could do the most worth. The vacuum is going to be filled, and it will be filled with really bad people with really bad intentions. Staying engaged is the most important thing you can do.”
From one panel to the next, there was a common refrain about the need to focus on the needs of the patient – and bring each individual patient story to the forefront.
The second day of the summit helped patients find ways to tell the most meaningful and memorable stories possible, while also giving patients and advocacy groups the tools they need to engage with value assessment frameworks.
“Focus on your story,” said Anna Hyde, vice-president of advocacy and access at the Arthritis Foundation. “Don’t worry about all the data and the policies. You’re here to put the human face what we’re talking about.”
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