PATIENT ADVOCACY FORUM - AGENDA

DECEMBER 13 - VIRTUAL

1:00 - 1:05 PM: Welcome

Stephen Rapundalo, PhD, President and CEO, Michbio

Dr. Rapundalo, has broad experience in the life sciences, with an extensive background in pharmaceutical research and development. Prior to joining MichBio in April 2006, he spent almost 20 years as a senior research scientist, project manager, and group leader with Parke-Davis Pharmaceutical Research and then Pfizer, Inc., primarily in the area of cardiovascular drug discovery.

Dr. Rapundalo also led a global interdisciplinary team that developed a strategic, operational and organizational change management program to improve Pfizer's worldwide R&D business processes. He has a strong background in innovation and is an internationally recognized expert in a number of technology areas including high-throughput screening and proteomics, among others.

Dr. Rapundalo has a superb record of scientific achievement with over 50 publications, book chapters, and monographs. He has served as a peer-reviewer for a variety of prominent scientific journals and national funding agencies. In addition, he continues to be active in a broad range of industry and governmental initiatives including intellectual property commercialization, talent recruitment and retention, science education and economic development.

Dr. Rapundalo has been a community advocate and civic leader for almost 20 years and formerly served as an elected member of the City Council in Ann Arbor, Michigan.

1:05 - 1:55 PM: What the November 2022 Election Outcomes Will Mean for Patients and Health Care

The national mid-term elections, along with state-level executive and legislative races, received a tremendous amount of attention and will have far-reaching implications for years to come. Policy pundits will assess federal and Michigan election results and their potential impact on how health policy and priorities will advance beginning in 2023 — and how patient advocacy groups can prepare for what’s next.

Melissa McKinley, President, Kelley Cawthorne

Lilly Melander, Director, State Government Affairs, Biotechnology Innovation Organization (BIO)

Aiken Hackett, Vice President, Federal Government Relations, Biotechnology Innovation Organization (BIO)

Ms. Aiken Hackett is the Vice President of Federal Government Relations at BIO, the national trade association representing the life sciences industry in Washington, DC. Since 2018, Aiken has led the organization’s federal advocacy and political strategy development driving BIO’s legislative agenda. Prior to joining BIO, she spent more than a decade in various government affairs roles within the physician community, both in Washington and Atlanta, including the American Medical Association, the American College of Rheumatology, and the Medical Association of Georgia. In those roles, she built broad coalition networks to advance various advocacy campaigns with an array of patient organizations and external stakeholders.

An Atlanta native, Aiken received a B.A. in both history & political science, and later a Master of Public Administration with a concentration in public policy, from the University of Georgia in Athens.

1:55 - 2:00 PM: Break

2:00 - 2:55 PM: Biomarker Screening: The Future of Precision Medicine and Improving Health Access

Biomarkers are biological characteristics helping increasingly in the prediction, cause, diagnosis, progression, and regression of disease, and as a consequence of therapeutic treatments or medical interventions. Scientific and medical experts will discuss the science and application of biomarker testing, including multi-cancer screening, and how biomarkers have advanced treatment for many patients and the critical need to make testing more accessible for Michiganders.

Eliot Codner, Biomarker Testing Account Executive, Genentech

Julia Feygin, PhD, Senior Medical Science Liaison, GRAIL

Dr. Julia Feygin received her bachelor’s and Ph.D. degrees from the University of Minnesota Department of Biomedical Engineering. Since transitioning to industry, Dr. Feygin has served in a broad range of roles spanning across all stages of medical technology development, from basic research and development through the regulatory approval process into commercial launch.

During her time at Boston Scientific, Dr. Feygin built and led the Global Scientific Affairs team, partnering with physician thought leaders around the world to shape the clinical and scientific narrative around key interventional cardiology and structural heart technologies. Dr. Feygin also served as the Vice President of Scientific and Clinical Affairs at AtCor Medical where she led strategic development efforts to drive adoption of a novel medical tools across different market segment and therapeutic areas.

She also built and led a national team at DaVita to integrate clinical research into approximately 300 medical centers across the country. In her current role at GRAIL, Dr. Feygin’s work is centered around furthering the science and clinical evidence on multi-cancer early detection testing and helping to enable broad access by clinicians and patients to potentially lifesaving technologies.

Dr. Feygin is a former Board Member of the Pinky Swear Foundation, a national non-profit organization that provides financial and emotional support to families dealing with childhood cancer.

Diane Taglioli-Hura, Public Health Researcher, Henry Ford & Patient Advocate

2:55 - 3:00 PM: Break

3:00 - 3:55 PM: Patients Engaging: Empowering Your Voice

Patients are essential partners in developing measurable value in healthcare. Their voices should be heard by all stakeholders in the healthcare continuum – innovators, manufacturers, providers, payers, regulators and policymakers – from scientific discovery to care delivery and management. The key to patient empowerment is to be knowledgeable and actively engaged on matters related to healthcare access. Key opinion leaders will talk about how to ensure patient preferences in decision-making while achieving improved outcomes and better experiences.

Jessica Scott, MD, JD, President, Legacy Health Strategies

Jessica Scott, MD, JD is a Patient Engagement leader who brings to Legacy Health Strategies a combined acumen of medicine and law, together with innovative thinking allows her to drive culture change in medical product development within organizations which results in mutually beneficial outcomes for patients and industry. She is also an experienced ambassador for medical policy issues and patient engagement to organizations and agencies on a global level.

Dr Scott is known as a credible and trusted thought-leader and collaborator, bringing novel solutions, digital strategies, and patient-centered approaches to biotech, med tech and pharmaceutical industries and across multi-stakeholder groups.

Dr Scott has deep knowledge of the pharmaceutical industry with senior leadership positions at both GlaxoSmithKline and Takeda where her focus has been on building patient perspectives into the process of R&D, enhancing trust and fostering a sense of true partnership with patients. She leads by inspiring others and engendering high levels of engagement with skillful, timely, and consistent delivery of initiatives and solutions that bring more medicines of value to patients, faster.

Dr Scott has received awards for innovative and impactful work in Patient Engagement including the Trail Blazer Award and PharmaVoice100 as one of the top 100 most inspiring leaders in the industry. She is actively involved as a strategic advisor to Bioethics International, Patient Focused Medicines Development, DIA Patient Advisory Council and remains actively licensed to practice law in North Carolina where she also practiced as a Family Physician for over a decade.

John Lewis, Executive Director, Heart Valve Voice US

John Lewis was named Executive Director of Heart Valve Voice US in August 2019. He has an extensive background in communications, patient advocacy, alliance development and non-profit management.

Most recently, he headed his own health communications and advocacy consultancy, Intersect Strategies, LLC. Prior to this, for eight years he served in senior positions with the Association of Clinical Research Organizations where he led policy development, public affairs and government relations.

Earlier in his career: he was a partner in a successful boutique public relations and advertising agency; directed marketing, public relations and investor relations for a technology start-up; and was marketing leader for a global clinical research organization.

He holds a Bachelor of Arts in Political Science from Duquesne University and a Master of Arts in Communication from American University.

Laura Bonnell, Executive Director, The Bonnell Foundation (Moderator)

The idea for The Bonnell Foundation: Living with Cystic Fibrosis came about after Molly and Emily (Laura’s daughters) were diagnosed with CF. Laura and husband Joe, with 9 siblings between them, had no history of CF in their family. Laura (and Joe) discovered they were carriers of the genetic disease after their daughters were diagnosed. It was then she realized there was a need for a Foundation that worked with CF families. It was years before Bonnell was able to get the Foundation up and running. A news reporter for 25 years (employed at WWJ and WJR most of her career) Laura was able to use her media talent and connections to get the word out about cystic fibrosis. Bonnell spoke in Lansing to talk about the importance of having CF on the list of diseases for newborn screening (officially added in 2007).

For 16 years the Bonnells raised funds for the Great Strides Walk for the CF Foundation and Laura was a speaker at the Tennis Auction Ball in 1995. Celebrity softball games became a fundraiser in 1999 with the wives of the Detroit Tigers kicking off the inaugural game. Then the Portraits of cystic fibrosis calendars were born in 2003. Both events raised about $100,000, some going to the CF Foundation and the University of Michigan. In 2010 Laura started the Bonnell Foundation. The Foundation helps families with lung transplant grants, financial assistance and college scholarships. As of this writing, we’ve given out about $500,000. Bonnell is currently the State Ambassador for the National Organization of Rare Disorders (NORD).

3:55 - 4:00 PM: Break

4:00 - 4:55 PM: Policy Priorities: Setting a Legislative Agenda for 2023

A new legislative season begins in January 2023 and what will be foremost on patient minds when it comes to policy priorities? Results from a pre-Forum survey of patient groups will be presented and discussed. A framework for a policy agenda will be developed that will serve as a common rallying point that patient groups and industry can partner around.

Stacy Reliford, Alliance Development Manager, Pfizer