By Tony Samuel, Father to Nadia

Bio Patient & Health Advocacy Summit 2018

The 7th annual Bio Patient & Health Advocacy Summit took place at the Hyatt Regency in Washington D.C. on October 25th and 26th . The Biotechnology Innovation Organization continues to bring patient advocacy organizations, government regulators and other BIO stakeholders together in one venue, to share ideas and drive critical discussions around rare diseases. In the 12 roundtable discussions, patient-focused care was a big part of every discussion. Best practices regarding coalition building and driving health policy were hot topics.

Getting access to transformative drugs and reducing the cost of innovative drug treatments were also an important topic for attendees. One patient advocate talked about a yearly $500,000 cost for rare drugs for her grandchild.

There were robust discussions around the need for patient groups to not only protect the privacy of patient data but to understand they are in the driver’s seat when negotiating with outside entities on what information can and should be shared. “It’s all about knowing your value and where you want to go as an organization”, said Leah Howard of the National Psoriasis Foundation.

Inclusive research in scientific data was another key roundtable discussion moderated by Gerren Wilson, Associate Director of Genentech/Roche. He talked about the “role unconscious bias plays in exacerbating disparities in clinical research” and the steps his company is taking to address this challenge.

Another important discussion was around lowering drug costs and expanding patient access to critical drugs. Anna Hyde, VP of the Arthritis Foundation stressed the importance for doctors “to be able to override insurance company decisions” which directed patients to specific drugs not approved by the patients’ doctor. Step therapy or fail first therapy continues to be an issue in the rare disease community.

As strong advocates for our family members, we understand the need for patient input throughout any and every process. It was good to hear this repeated theme throughout the BIO conference. As Alan Balch, CEO of the National Patient Advocate Foundation stated, “value is patient-centered”.

Below is a sample of a few of the committee discussion groups:

• Incorporating the Patient Voice in Drug Development
• Newborn Screening
• Access to Care in Medicare Part B
• Advancing Inclusive Research
• Personalized Medicine: “Is this Therapy Going to Work for Me?”
• Cell and Gene Therapy Editing

The Bio Patient & Health Advocacy Summit continues to deliver thoughtful discussions and networking opportunities for rare disease stakeholders.