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Program Overview

The BIO Patient & Health Advocacy Summit program is expanding! This year's lineup will feature discussions with thought leaders from the patient advocacy community and the biotechnology industry, as well as several new programs and workshops to make your Summit experience even more fulfilling.

Below is an overview of the 2017 program to give you an idea of the format of this event:

Monday, October 2

Pre-Summit Workshop
10:30 AM - 12:00 PM
Grand Ballroom

Balancing Access and Affordability: Bringing Innovative Medicines to Patients        

The price of new drugs is the subject of intense discussion among policymakers and healthcare stakeholders. New treatments often improve the quality of life for patients and their families and reduce reliance on other parts of the healthcare system. As patient advocacy and patient-driven research organizations are increasingly influencing the dialogue around drug development and coverage, it is important to examine how to account for the value a new medicine brings to a patient while balancing the cost with the benefits of that treatment. Join a hands-on interactive exercise that will provide a first-person perspective on the various and often complex factors that go into the decision-making that ultimately leads to the development and delivery of novel medicines. Attendees will have the opportunity to vote on and discuss the key questions that must be considered when investing in a new therapy and bringing a new treatment to market.

Moderator – Debbie Hart, Founding President and CEO, BioNJ


  • Margaret Anderson, Managing Director, Deloitte Consulting LLP
  • Joel Beetsch, Vice President, Patient Advocacy, Celgene
  • Linda House, President, Cancer Support Community 

Lunch Roundtable Discussions
12:30 PM - 1:30 PM
Grand Ballroom

A new opportunity to network with peers from the healthcare community, the roundtable discussions will bring together Summit attendees from different stakeholder organizations, as well as the biotechnology industry, for robust discussions led by roundtable hosts. View this session in detail.

Networking Break
​1:30 PM - 1:45 

Opening Remarks and Session One: Patient-Centric Clinical Trials: An Examination of Innovative Partnerships in Trial Design 
1:45 PM - 3:00 PM 
Grand Ballroom

In a rapidly changing healthcare landscape, the commitment for biopharmaceutical companies to integrate the patient experience into the drug development process is accelerating through partnerships. These partnerships can be mutually advantageous for industry and the patient, as they foster insight into the direct needs of the patient to improve the research and development for advancing new therapies. This panel will highlight successful collaborations that led to impactful partnerships between industry and patient advocates and explore how these collaborations are fundamentally changing industry’s approach to clinical trial design and recruitment. 

Moderator - Julie Gerberding, MD, MPH, Executive Vice President & Chief Patient Officer, Strategic Communications, Global Public Policy and Population Health, Merck


  • Zachary Hallinan, Project Manager, Clinical Trials Transformation Initiative (CTTI)
  • Amy Kant, Reinvention Director, National Niemann-Pick Disease Foundation
  • TJ Sharpe, Patient and Blogger, Patient #1 Blog 
  • ​Sharon Tan, Global Project Head, Sanofi 

Best Practice Seminars: Two Session Choices
3:15 PM - 4:30 PM 
Grand Ballroom and Chinese Room

Track One: Making Your Voice Heard: Lessons Learned in Planning an Externally Led Patient-Focused Drug Development Meeting  

As part of the U.S. Food and Drug Administration’s (FDA) goals under the Prescription Drug User Fee Act (PDUFA V), the Agency committed to hosting more than twenty Patient-Focused Drug Development (PFDD) meetings to hear directly from patients, patient advocates, and caretakers about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments in order to help to better inform regulatory decision-making. Under PDUFA VI, what started as compelling information will be turned into meaningful, usable data that may even add to the drug label to help all doctors and patients get the greatest benefits from medicines. Patient advocacy organizations that host their own meetings will add incalculable value to what is already a strong foundation for the ultimate goal of making patient perspectives, views, and true understanding of their disease an integral and essential continuing part of drug development and review. Learn how three different disease communities planned and executed externally-led PFDD meetings and engage in a discussion as the panelists share best practices and considerations for planning your own PFDD meeting.  

Moderator – John Maraganore, PhD, Chief Executive Officer, Alnylam Pharmaceuticals


  • Rosangel Cruz, MA BS, Associate Research Director, Cure SMA
  • Isabelle Lousada, President and CEO, Amyloidosis Research Consortium
  • Pujita Vaidya, Acting Director, Decision Support and Analysis Team, Office of Strategic Programs, Center for Drug Evaluation and Research (CDER), Food and Drug Administration (FDA)
  • Patrick Wildman, Vice President, Advocacy and Government Relations, Lupus Foundation of America

Track Two: Advancing Your Agenda: Best Practices in State Advocacy 

Changes to the development and delivery of healthcare come from advocacy at all levels of government. While much of the focus today is on the healthcare debate happening at the federal level, states are actively involved in regulating health insurance and patient care. From utilization management to changes to the structure of federal and state-based healthcare programs, policy proposals that could impact the accessibility of therapies and treatments for patients are being considered in state legislatures across the country.  Hear from three organizations as they share how their organizations are shaping public policy and engaging lawmakers. This session will examine how your organization can build a successful state advocacy campaign, effectively engage your grassroots network, and consider the opportunities and challenges of working with a coalition to build awareness and engage lawmakers. 

Moderator - Tim Martin, Director, United States Government Affairs, Amgen


  • Tim Boyd, Director of State Policy, National Organization for Rare Disorders (NORD)
  • Patrick Stone, Director, State Government Relations, National Psoriasis Foundation 
  • Pam Traxel, Senior Vice President of Alliance Development and Philanthropy, American Cancer Society, Cancer Action Network
  • Madelaine A. Feldman, MD, Vice President, Coalition of State Rheumatology Organizations, Alliance for Transparent and Affordable Prescriptions

Closing Remarks with Julie Gerberding, MD, MPH
4:30 PM - 4:45 PM
Grand Ballroom and Chinese Room

Tuesday, October 3

Networking Breakfast
8:30 AM - 9:30 AM

Opening Remarks and Session Two: Understanding the Science of Caregiving: Bringing the Caregiver’s Voice to the Forefront
9:30 AM - 10:45 AM
Grand Ballroom

Providing care and support for a loved one facing an illness can be overwhelming. While there are many common experiences, such as balancing the care provided with caring for themselves, each caregiver’s journey and perspective is unique. The role of the caregiver is crucial, but their needs are often left unaddressed and support is often lacking. Engage in a discussion about the myriad of roles a caregiver plays for a deeper understanding of the unmet needs of caregivers and explore the ways in which industry can support them.    

Moderator: Christine Verini, RPh., Chief Business Development Officer, CancerCare


  • Hala Durrah, Family Caregiver, Pateint Family Centered Care Advocate
  • Scott Williams, Vice President, Head of Global Patient Advocacy and Strategic Partnerships, EMD Serono​
  • Lisa Winstel, Chief Operating Officer, Caregiver Action Network 

Fireside Chat with Theresa Mullin, PhD, Director, Office of Strategic Programs, Center for Drug Evaluation and Research, US Food and Drug Administration, moderated by Marc Boutin, Chief Executive Officer, National Health Council
11:00 AM - 12:00 PM
Grand Ballroom

Closing Remarks 
12:00 PM - 12:15 PM
Grand Ballroom

Personalized Medicine Workshop
1:00 PM - 4:00 PM
Grand Ballroom

The promise of personalized medicine is to get the right treatment to the right patient at the right time through the use of cutting edge diagnostic technologies and targeted therapies. New to the BIO Patient and Health Advocacy Summit this year is a Personalized Medicine Workshop that will offer a unique opportunity for patient groups to engage with other stakeholders to learn more about this emerging field of medicine. The workshop will feature expert-led discussions centered around the challenges associated with integrating personalized medicine into the clinic, considerations for assessing the value of personalized medicine, and the role that patient organizations play in advancing personalized medicine.

The Personalized Medicine Landscape
1:00 PM – 2:15 PM

Scientific and technical breakthroughs have enabled the promise of Personalized Medicine. However, many policy challenges must be addressed before we can fully realize the potential of personalized medicine to tailor medical treatment to each patient based on genetic, environmental, and lifestyle factors. This panel will bring together experts to provide an overview of the scientific foundation of personalized medicine, the regulatory oversight needed to advance this field, ethical and privacy considerations for providers and patients, and the impact of personalized medicine on the patient community.

Moderator - Daryl Pritchard, Senior Vice President, Science Policy, Personalized Medicine Coalition


• Stephanie Devaney, PhD, Deputy Director, All of Us Research Program

• Sherri Millis, PhD, Foundation Medicine

Personalized Medicine in Practice: Barriers and Opportunities
2:30 PM – 3:45 PM

Expert panelists from different stakeholder perspectives come together to discuss their role and approach to the field of personalized medicine, how they implement it in their daily work, and share some of the lessons learned/recommendations on how we can decrease the time it takes to get personalized medicines and diagnostics from the laboratory to the clinic. The theme of the discussion will focus on access to personalized medicines and how the patient community can help advance this field.

Moderator - Mark Fleury, PhD, Principal, Policy Development, American Cancer Society Cancer Action Network (ACS CAN)


• Rasika Kalamegham, PhD, Group Director, US Regulatory Policy, Genentech

• Timothy L. Cannon, MD, Clinical Director, Molecular Tumor Board and Personalized Medicine Initiative, Inova

• Andrea Ferris, President and Chairman, LUNGevity Foundation

*Updated September 21, 2017. Program subject to change. 

Questions? Contact