Summit to foster industry and patient group collaboration

Dec 4, 2018
Summit to foster industry and patient group collaboration

Industry and advocacy groups came together to foster collaboration on a shared purpose – improving the lives of people living with disease across the USA – at this year’s Biotechnology Innovation Organization (BIO) Patient and Health Advocacy Summit in Washington, DC at the end of October.

Mary Bordoni, Director of Alliance Development at BIO, the trade association for the biotechnology industry, talked to Change Together about the event.

“The program was kept pretty high level, but there were also key takeaways on specific policy issues for groups to take back and educate their patient populations on. With patient advocacy groups coming from all over the country, we tried to provide them with a 101 on some of the key policy issues,” explained Mary.

Among the policy issues covered were barriers to accessibility of new, innovative treatments, and new legislation the healthcare community hopes will help to ease the opioid crisis.

Issues relating to health insurance, including the worrying addition of a “co-pay accumulator” to many policies, were also discussed.

“We have come across certain barriers that are making it difficult for patients to access and afford therapies,” said Mary, adding that many people were abandoning their medicines because the co-pay accumulator shifted the burden of cost from insurer to patient.

“The summit offered some key takeaways on helping patients navigate their insurance plans and what things to look out for.”

The event also looked at examples of best practice for groups looking to work with industry.

Representatives from the National Health Council, the trade association for patient advocacy groups, spoke about the organization’s work. Mary explained that the council had developed the gold standard on how advocacy organizations should engage with industry.

Mary said: “We hope groups went away with a better sense of how to interact with industry. We also had a discussion on what information we could provide to enhance collaboration.”

Collaboration was a key theme of the summit, not just between industry and advocacy, but among patient organizations themselves.

“The summit gives groups a chance to engage with other patient organizations, to find out how they are structured, but also how they can work together,” said Mary.

“Some groups said they had met with others at the summit and had really learned a lot. They were able to form collaborations that are really worthwhile.”

Overall, the summit is designed to offer something for everyone, Mary went on.

“Patient groups benefit because it gives them a good overview of barriers to access and how good policy could help overcome some of those barriers.”

“On the industry side, it is an opportunity to discuss collaboration and to learn about patient populations, and how we can continue to engage throughout the drug development process.”

And for BIO?

“For us, it’s about being able to provide a platform for engagement to our member companies and patient advocacy groups. The groups are a trusted partner to BIO, and they help us with many of the policy issues we face,” said Mary.

For more information on BIO click here. []

Summit to foster industry and patient group collaboration

Astellas Patient Advocacy is a function within Corporate Affairs at Astellas that focuses on creating, building and maintaining third-party relationships. We serve as a conduit between Astellas and external stakeholders to help improve patient outcomes, improve access issues and address patients’ unmet needs head on.

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