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2018 Patient & Health Advocacy Summit Registration

This event brings together patient advocacy organizations, academia, regulators, biotechnology industry, and other stakeholders for two days of robust programming to discuss timely policy issues and share best practices. The Summit also provides invaluable networking opportunities to advance partnership among stakeholders in the healthcare ecosystem. Last year, the Summit convened over 350 attendees from more than 200 different organizations.

Registration Deadline: Friday, October 19

Submit the form below to register for the BIO Patient & Health Advocacy Summit. Don't wait--space is limited!

IMPORTANT: If you are registering on behalf of someone else, or registering more than one person, you MUST use a unique email address for each registrant.

 

 

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Registration Now Open

Roundtable Discussions

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.

Best Practices in Creating Patient Centric Clinical Trials
Hosted by: Shire
Table 2

A discussion to explore successes, challenges and best practices in advancing rare disease R&D by integrating patients’ points of view during the discovery and development lifecycle including: 

  • Patient, caregiver and advocacy group input into clinical trial design and processes
  • Patient & patient advocacy group engagement with the FDA
  • Accelerating clinical trial recruitment
  • Patient registry creation and management to support patient reported outcome & natural history data collection

Discussion Leader:

Melanie Ivarsson, Director of Clinical Programs for Global Research and Development

 

Lilly Advocacy Dialogues: Listening Tour – What are Your Priorities?
Hosted by: Eli Lilly and Company                                                                
Table 1                                                                              

During this interactive conversation, Lilly Advocacy leadership wants to hear from YOU!  What are your organization’s key policy priorities both in the short term and over the long haul?  What are your concerns, and ideas as to how to address them.

Discussion Leaders:

Michele M. Oshman, Director, Federal Advocacy and Alliance Development

Tom Wallace, Senior Director, Global Advocacy and Professional Relations

 

The Future of Value 101:  Value Based Contracting
Hosted by: Bristol-Myers Squibb                                          
Table 6

Patients will be better served in a health care system based on value, but what does that mean? Join Bristol-Myers Squibb and their US Health Policy Lead, Stefanie Wiegand, for a 101 introductory discussion on value and how we can move towards value based contracting for healthcare services and products.

Discussion Leader:

Stefanie Wiegand, US Health Policy Lead

 

Personalized Medicine: “Is This Therapy Going to Work for Me?”
Hosted by: BIO
Table 3

A customizable healthcare model where medical decisions, practices, and/or products are tailored to the individual patient based on an individual’s genetic profile is no longer a fantasy. This discussion will focus on issues surrounding genetic testing such as access, privacy, targeted therapies, and whether patients should get tested.

Discussion Leader:

Phi D. Vu, JD, Director, Diagnostics and Personalized Medicine Policy

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Lunch Roundtable Discussions

2017 BIO Patient and Health Advocacy Summit Webinar Registration TY

Thank you for registering for the BIO Patient & Health Advocacy Summit: Programming and Partnering Webinar. 

You will receive a confirmation email shortly. If you have any questions about the Summit, please contact bioalliancedevelopment@bio.org

Next Steps

 

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Thank You for Registering for the Webinar!

Summit Attendee Experiences

“The Pancreatic Cancer Action Network is embarking on a new initiative called Precision Promise, a precision medicine clinical trial system for pancreatic cancer patients. We will be working with collaborators including researchers, clinicians, drug and diagnostic companies, and the FDA. We have funded clinical trials in the past, but never actually sponsored a clinical trial. Sponsoring clinical trials brings about new regulatory issues that we have not faced before, and the topics at the Summit are addressing some of those areas. My hope in attending the Summit is to better understand some of the issues we will be facing, how to address them and who the experts are that can help us.” - Julie Fleshman, President and CEO, Pancreatic Cancer Action Network

 

“The BIO Patient and Health Advocacy Summit enhanced ICAN's relationships with key stakeholders, as well as fellow advocates, which will help us to even more effectively handle upcoming challenges. I learned a tremendous amount from the speakers and learned an equal amount from the attendees. It was a real pleasure to meet so many fascinating people.” - Steve Horn, Director, State Government Relations, International Cancer Advocacy Network

 

“I began my career simply with the hope of doing something in my father's memory, but have since met many individuals whose personal stories and courage have added to my passion and commitment. I hope to connect with companies with a mutual focus on lung cancer to see how we may partner together.” - David LeDuc, Executive Director, Bonnie J. Addario Lung Cancer Foundation

 

“This is an incredible opportunity to connect with stakeholders to learn more about potential collaborations, regulatory issues and the strength in bringing the patients voice early on in the process of therapy development to treat diseases. It would be wonderful to engage with other advocacy groups and other stakeholders that may see our vision and want to join forces in translating therapies for the Charcot-MarieTooth Community. In addition, we would hope that our experiences and successes could help others.” - Allison Moore, CEO, Hereditary Neuropathy Foundation

 

“The opportunity to learn what is working and not working in other areas and the opportunity to learn the needs of other diseases should provide an additional framework in which to operate. The more informed and trained an advocate can be the better chance of making a difference in someone's life.” - Stewart Perry, Secretary, National Diabetes Volunteer Leadership Council

 

Learning from other non-profits is essential to growing our mission and vision. The American Brain Coalition strives to constantly be aware of what other scientific non-profits are working on so we can align and collaborate.” - Katie Sale, Executive Director, American Brain Coalition

 

“The BIO Patient & Health Advocacy Summit is a very powerful intersection of pharma, biotech, and advocacy. The exchange of challenges, ideas, concerns, and opportunities at this BIO conferences is a very powerful force in refining the perspectives, thinking, and impacting future plans of those attending. The setting is modest in size allowing not just for superficial networking, rather there is time and space for in depth conversation and follow-up.” - Dean Suhr, President, MLD Foundation

 

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Summit Attendee Experiences

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.

Thursday, October 25

Opening Remarks
Location: Gallery Ballroom
10:30 AM

Julie Gerbering, MD, MPH, Executive Vice President, Communications, Global Policy, and Population Health & Chief Patient Officer, Merck

Landscape Analysis on Best Practices for Engaging with Industry        
Location: Gallery Ballroom
10:35 AM - 12:00 PM

Patient advocate organizations and the biopharmaceutical industry share a commitment of improving the lives of patients, and often work together to better understand the patients served, raise awareness and understanding of a disease, and to advance patient-focused public policies. Many organizations, including BIO, have developed guiding principles of engagement for interactions with industry and stakeholder groups. This panel will explore the various best practice guidelines and will highlight some of the best practices learned in collaborations between the biopharmaceutical industry and patient advocacy organizations.

Moderator
Kim Love, MPP, Director, Strategic Alliance Development, Bristol-Myers Squibb 

Speakers
Leah Howard, JD, Chief Operating Officer, National Psoriasis Foundation
Michele Oshman, Director, Federal Advocacy, Eli Lilly and Company
Eleanor Perfetto, PhD, MS, Senior Vice President, Strategic Initiatives, National Health Council
Susan Stein, MPH, Founder, CEO and President, Connexion Healthcare
 

Lunch Roundtable Discussions
Location: Salon Rooms/ Gallery Ballroom
12:00 PM - 1:30 PM

An 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.

Access to Care in Medicare Part B
Hosted by: Bristol-Myers Squibb

Advancing Inclusive Research
Hosted by: Genentech

Lilly Advocacy Dialogues: Listening Tour - What are Your Priorities?
Hosted by: Eli Lilly and Company

Newborn Screening
Hosted by: Biogen

Opening Remarks
Location: Gallery Ballroom
1:40 PM - 1:45 PM

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

Session One: Ensuring Patient Access and Affordability
Location: Gallery Ballroom

1:45 PM - 3:00 PM 

In a world of continual innovation in biopharmaceuticals, how do we ensure patients have access to the medicines that work to meet their individual needs? This panel will cover the importance of understanding policies that may pose as barriers to access such as the acceleration of high patient cost-sharing and barriers to patient assistance programs, including co-pay accumulators, more adoption of utilization management tools like step-therapy, and the drive toward using cost-effectiveness analyses in coverage decisions. Panelists will provide insights into how patient advocate groups can respond as well as prepare themselves and their populations for these changes.

Speakers
Alan Balch, PhD, Chief Executive Officer, Patient Advocate Foundation and National Patient Advocate Foundation 
Donna Cryer, JD, President and CEO, Global Liver Institute 
Anna Hyde, Vice President, Advocacy and Access, Arthritis Foundation 
Carl Schmid, Deputy Executive Director, The AIDs Institute 

Networking Break
Location: Salon Foyer
3:00 PM - 3:15 PM

Session Two: The Trump Administration's Blueprint: What's Next?
Location: Gallery Ballroom
3:15 PM - 4:30 PM 

Join us to hear from key members of the Administration as they discuss the Trump Administration’s efforts to lower drug prices and reduce patient out of pocket costs, as outlined in the American Patients First blueprint released earlier this year. 

Moderator
Janet McUlsky, MBA, Senior Director, National Alliance Development 

Speakers
Dan Best, Senior Advisor to the Secretary for Drug Pricing Reform, Food and Drug Administration, U.S. Department of Health and Human Services 
John O’Brien, MPH, Advisor to the Secretary for Health Policy, U.S. Department of Health and Human Services

Closing Remarks 
Location: Gallery Ballroom
4:30 PM - 4:45 PM

Robert Coughlin, President & CEO, Massachusetts Biotechnology Council

Networking Reception
Location: Salon Rooms/ Salon Foyer
5:00 PM - 6:30 PM


 

Friday, October 26

Networking Breakfast
Location: Salon Rooms/ Salon Foyer
8:00 AM - 9:00 AM

Session Three: Opioid Addiction: Changing the Paradigm for Treating Pain and Addiction
Location: Gallery Ballroom
9:00 AM - 10:15 AM

Understanding the biology underlying pain and addiction are critical to supporting the discovery of novel and safer treatments for both pain and addiction as well as for ensuring that patients receive the right treatment at the right time, with the right support, and without stigma.  This session will include a presentation followed by panel discussion regarding how we might best treat individuals suffering from pain while also doing our best to prevent addiction. The panel discussion will focus on three key areas, including the need to (1) better understand the biology of pain and addiction (2) ensure patients suffering from pain or addiction are able to receive the right support, without stigma, and (3) stimulate research and development of innovative treatments that effectively treat pain and opioid addiction and prevent abuse.

Moderator
Richard Pops, Chairman and CEO, Alkermes 

Speakers
Nicole Hemmenway, Interim CEO, US Pain Foundation
Justin Luke Riley, President & CEO, Young People in Recovery 
Peter Strumph, MBA, President, CEO, and Founder, Amygdala Neurosciences
Amir Tamiz, PhD, Director, Division of Translational Research, National Institute of Neurological Disorders and Stroke, National Institute of Health 

Background materials:
The State of Innovation in Highly Prevalent Chronic Diseases: Pain and Addiction Therapeutics
BIO’s Pain and Addiction Recommendations

Networking Break
Location: Salon Foyer
10:15 AM - 10:30 AM

Session Four: FDA Update- Current Activities on Patient Experience Data
Location: Gallery Ballroom
10:30 - 11:45 AM

With the Prescription Drug User Fee Agreement V the Food and Drug Administration (FDA) worked along with other stakeholders including patient organizations and industry sponsors to further advance the systematic collection of patient experiences to inform drug development and review. In late 2017, the FDA held their first public meeting on “Patient-Focused Drug Development: Guidance 1 – Collecting Comprehensive and Representative Input” and during the summer of 2018, the Agency released the first draft guidance on the topic. This fall, the FDA held their second public meeting “Patient-Focused Drug Development Guidance: Methods to Identify What is Important to Patients and Select, Develop, or Modify Fit-for-Purpose Clinical Outcomes Assessments” to help inform additional patient-focused drug development guidance. This panel discussion will cover some of the key themes identified at the fall public meeting as well as how we can better support integration of patient experience data throughout the product lifecycle moving forward. 

Moderator
Paul Hastings, President and CEO, Nkarta Therapeutics, Inc

Speakers
Laurie Burke, MPH, Founder, LORA Group
Cartier Esham, PhD, Executive Vice President, Emerging Companies Section and Vice President, Science and Regulatory, Biotechnology Innovation Organization
Annie Kennedy, Senior Vice President, Legislation & Public Policy, Parent Project Muscular Dystrophy 
Pujita Vaidya, MPH, Acting Director, Decision Support and Analysis Team, Office of Program and Strategic Analysis, Food and Drug Administration  

Closing Remarks
Location: Gallery Ballroom

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

BIO One-on-One Partnering™
Location: Salon Rooms
12:00 PM - 3:30 PM

*Updated September 20, 2018. Subject to change.

Questions? Contact BIOAllianceDevelopment@bio.org.

 

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Program Overview

2016 BIO Patient and Health Advocacy Summit Media Registration TY Page

Thank you for registering to cover and promote the 2016 BIO Patient & Health Advocacy Summit! 

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Thank You for Registering as Media

2018 BIO Patient and Health Advocacy Summit Registration TY

Thank you for registering for the 2018 BIO Patient & Health Advocacy Summit! 

You will receive a confirmation email shortly. If you have any questions about the Summit, please contact bioalliancedevelopment@bio.org

Next Steps

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