My Top 5 Takeaways from the BIO Patient & Health Advocacy Summit

I recently attended the BIO Patient & Health Advocacy Summit in Washington DC with The diaTribe Foundation’s Kelly Close. The two-day conference was chockfull of valuable workshops and panel discussions dedicated to bringing patient voices to the forefront of diabetic therapies and regulation – finally, a conference truly focused on patients and patient advocacy!

Read on below for my top 5 takeaways from the conference.

1. Groups can advocate better for patients than can a patient alone. If I called an insurance company by myself and asked its executives to talk about patient-centered diabetes coverage, I doubt I’d get much of a response. But Leah McCormick Howard, Vice President of Government Relations and Advocacy of the National Psoriasis Foundation, had a different idea. She gathered a group together of psoriasis advocates, healthcare providers, regulators, and payers, and worked to help payers understand psoriasis and its impact on people’s lives. Their efforts were successful in raising awareness about psoriasis, and may even translate to better medication coverage in the long run. Through using many voices, Ms. Howard was able to achieve much more than could a single voice alone.   

2. Insurance companies DO care about patients’ wellbeing. Panelist Patricia Salber, a principal of Zia Healthcare Consultants, seemed to believe that if insurance companies understood more about the impact of a disease, they would be more inclined to cover treatments that patients value most. She suggested contacting the Chief Medical Officer and explaining the impact of the disease in question and how the treatments/medications could help one’s improve quality of life. She did, however, say that not all “chiefs” are created equal; some have more power than others. The Chief Medical Officer is not the final voice, but a good place to start. The key is to find someone who will listen and plead your case.

3. The need for patients and patient advocates to have a voice in drug development and treatment is gradually becoming accepted as a best practice. No one at the conference, speaker or attendee, disputed this fact. However, there is still a lot of work to do before this practice becomes commonplace. Speakers discussed the various guides and charts being generated to determine how best to incorporate patient input. While no practical, standardized applications yet have been accepted, it is encouraging to know that companies and government organizations are now aware of the importance of patient-centered care and ready to take action.

4. A need exists to evaluate drugs and drug treatment in a fuller and more definitive way. Dr. Al Bensen III, Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern Medicine, presented what he called “Evidence Blocks,” which evaluate drugs on five criteria: Efficacy, Safety, Quality of Evidence, Consistency of Evidence, and Affordability. According to Dr. Bensen, these criteria are quite useful for drug companies, insurance companies, and patients, and could drive the way research is conducted. The key takeaway for me was the fact that drugs can and should be evaluated based on how they improve quality of life, not only if they can lengthen life. While this concept seems so obvious to us as patients, it is encouraging to see it finally starting to take hold in industry and government.

5. Finally, patients, we need patience. This is only the beginning. Patients are becoming a conversation and a consideration. However, companies are still trying to figure out how to best engage patients, where to find them, and how to include patients from diverse backgrounds. Websites seem to be the go-to answer to engage patients right now. Personally, I would like companies to reach out specifically to me, with a letter, an email, or a phone call, rather than make it my job to find them on my own.

Ultimately, I found the discussions at the BIO conference encouraging, and I look forward to following these important conversations in the future. Maybe I’ll even attend a meeting as a patient representative and give my thoughts – I have lots to say!

Background on BIO:

BIO (Biotechnology Innovation Organization), the conference organizer, is the world’s largest trade association of biotechnology companies and other institutions (www.BIO.org). One of its missions is to bring together stakeholders from different organizations and government for the purpose of advancing healthcare and supporting public policies.

Notable workshops during the two-day conference included “PDUFA VI (Prescription Drug User Fee Act) and the Patient Voice in Drug Development;” “Keeping Pace with Patient-Driven Drug Development: Overcoming Emerging Legal and Regulatory Challenges;” “Best Practices for Industry and Patient Organization Collaboration in Clinical Trials;” “Patient Perspectives in the Development of Value Assessment Frameworks;” and “Innovative Strategies to Enhance Patient Care: Engaging with Payers to Influence the Coverage Debate.” The workshops were varied but all highlighted the importance of including the patient voice.