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When

Thursday, March 14, 2024 (9:30 AM - 3:00 PM) (EDT)

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Where

Venable LLP

600 Massachusetts Avenue, NW
Civiletti Conference Room

Washington, District of Columbia

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Zubair Ansari (Executive Director of Cancer Support Community)

Zubair Ansari

Executive Director of Cancer Support Community

I currently serve as Executive Director of the Cancer Support Community – Washington, D.C. with nearly 200 locations across the globe, Cancer Support Community assists all people, especially those impacted by health inequity, to better serve the DMV region.

Prior to this role, I was the Executive Director of Reimbursement for Luminis Health headquartered in Annapolis, Maryland. I led self-directed teams across multiple hospitals in Maryland with executive purview of consumer experience, planning, strategic growth, revenue cycle, and compliance for LuminisHealth. Previously, I served in senior leadership roles at the University of Maryland Medical System,Kaiser Permanente, and Johns Hopkins Medicine. At Johns Hopkins Medicine, I led the re-design of the clinical, financial, and quality assurance space for all international patients and students and more than twenty facilities across the globe for a $15 billion USD enterprise.

In addition to my U.S. roles, I was the Head of Business Advisory for King Faisal Specialist Hospital and Research Center (KFSHRC) based in Riyadh, Saudi Arabia. I led capital funding of $100 million USD for the King Faisal Foundation serving cancer patients across the nation and to improve care at the King Faisal National Children’s Cancer Center.

I am proud to be a past board member for the National Association for Healthcare Access Management (NAHAM) and the Healthcare Finance Institute (HFI) and member of the Healthcare Finance Management Association (HFMA). I am a trained six-sigma black belt, proficient in four languages, and completed my Bachelor of Arts degree in Sociology at Augustana College and Master of Science in Healthcare Administration at the University of Saint Francis - both in Illinois.

Anton Avanceña, PhD (Assistant Professor of Health Outcomes and Internal Medicine at The University of Texas at Austin)

Anton Avanceña, PhD

Assistant Professor of Health Outcomes and Internal Medicine at The University of Texas at Austin

Anton Avanceña (he, him) is an Assistant Professor of Health Outcomes and Internal Medicine (by courtesy) at the University of Texas at Austin. A decision scientist by training, Anton uses simulation modeling, economic evaluation, and real-world data analysis to understand the value of health policies and technologies. His recent work has focused on evaluating interventions for mental and behavioral health such as treatments for alcohol use disorder, depression, and PTSD. Anton is interested in incorporating health equity in value assessment and currently serves as chair of the Health Equity Research Special Interest Group of ISPOR. Anton trained in public health at the University of Michigan, UC San Francisco, and Santa Clara University.

Jonathan Campbell, MS, PhD (Chief Science Officer at National Pharmaceutical Council)

Jonathan Campbell, MS, PhD

Chief Science Officer at National Pharmaceutical Council

Jonathan D. (Jon) Campbell, MS, PhD, is the Chief Science Officer (CSO) of the National Pharmaceutical Council (NPC), which sponsors and conducts research on health policy issues related to the development and use of innovative biopharmaceuticals to improve the health of patients. NPC’s research contributes to the body of evidence that supports discussions and decisions about patient access to treatments, appropriate use, and the value innovative treatments provide to both patients and the health care system.

As CSO, Dr. Campbell leads NPC’s research agenda in concert with NPC’s board and research team. As a researcher and advocate for improving the U.S. healthcare system through sustainable access and biopharmaceutical innovation, Dr. Campbell is dedicated to conducting research that helps decision-makers understand the tradeoffs and consequences of health policies that impact patient access to treatments and the ecosystem of biopharmaceutical innovation.

Dr. Campbell shaped his career within academics. After training at the University of Washington, he joined the faculty at the University of Colorado Anschutz Medical Campus, earning multiple appointments in Pharmacy and Public Health from 2009 to 2020. During his academic career, Dr. Campbell gained insights on the work of biopharmaceutical manufacturers through a summer internship at Novartis in Basel, Switzerland (2004) and expanded his research and training network through a sabbatical in Budapest, Hungary with Syreon Research Institute (2018).

Prior to joining NPC, Dr. Campbell served as Senior Vice President for Health Economics at the Institute for Clinical and Economic Review (ICER), where he made contributions to ICER assessments and their value assessment methodology. Dr. Campbell is an author of over 250 manuscripts and abstracts in the field of health policy research and value assessment and holds an adjunct faculty appointment within the Center for Evaluation of Value and Risk in Health at Tufts University School of Medicine.

Dr. Campbell is passionate about mentoring others and enjoys supporting individuals working to deepen their expertise in the health economics and outcomes research field. Dr. Campbell’s training includes graduate degrees in pharmaceutical outcomes research (PhD) and biostatistics (MS) from the University of Washington. He graduated Phi Beta Kappa with Bachelor of Arts degrees in mathematics and chemistry from St. Olaf College.

Richard Chapman, PhD (Chief Science Officer at Innovation and Value Initiative)

Richard Chapman, PhD

Chief Science Officer at Innovation and Value Initiative

Rick Chapman, PhD, brings decades of health economics and outcomes research (HEOR) expertise to his role as Chief Science Officer. Chapman was Director of Health Economics at the Institute for Clinical and Economic Review prior to IVI, where he led development of economic evaluations that accompanied rigorous reviews of clinical evidence. Formerly, he was VP of HEOR at Avalere Health. Before that, Chapman was a principal in HEOR at IMS Health, and a research analyst at the Center for Risk Analysis at the Harvard School of Public Health.

Chapman holds a PhD in health policy with a concentration in decision sciences from Harvard University. He also holds an MS in health policy and management from the Harvard School of Public Health.

Sneha Dave (Executive Director of Generation Patient)

Sneha Dave

Executive Director of Generation Patient

Sneha graduated from Indiana University in May 2020 where she majored in chronic illness advocacy as well as journalism. She created Generation Patient to develop support systems for adolescents and young adults with chronic conditions across the U.S. and internationally. She is proud to work with a team composed entirely of young adults with chronic conditions and also to keep Generation Patient and CCYAN independent from the pharmaceutical and insurance industries. Sneha has completed an undergraduate research fellowship in health policy at Harvard T.H. Chan School of Public Health. Sneha has spoken on Capitol Hill, featured nationally on C-SPAN, and is a past contributor for U.S. News and World Report. She has served on the Democratic National Committee Disability Policy Subcommittee and recently joined the Midwest Comparative Effectiveness Public Advisory Council, an independent appraisal committee of the Institute for Clinical and Economic Review. She also serves on the FDA Patient Engagement Collaborative, in a grantmaking committee with the Robert Wood Johnson Foundation, and as part of the advisory board for the Yale Collaboration Regulatory Rigor, Integrity, and Transparency. Sneha was awarded two academic fellowships with the Association of Health Care Journalists. For her work, she was selected as one of the most influential teenagers in 2018 by the We Are Family Foundation and was recognized as an American Association of People with Disabilities Emerging Leader in 2020.

Ilisa Halpern Paul, MPP (Senior Policy Advisor at Venable LLP)

Ilisa Halpern Paul, MPP

Senior Policy Advisor at Venable LLP

Ilisa Halpern Paul is a senior policy advisor at Venable LLP in the firm’s Washington, DC office. Ilisa co-leads the firm’s Federal Health Policy team, drawing on more than 30 years of recorded success in helping established and start-up healthcare companies, health and hospital systems, provider associations, and nonprofit patient advocacy organizations advance their legislative, regulatory, and business goals before Congress and the executive branch. Ilisa represents some of the country’s most significant integrated health systems, medical and nursing professional societies, and other entities involved in the direct delivery of healthcare. Ilisa provides direct lobbying representation and strategic counsel regarding legislative, regulatory, and grassroots advocacy; public policy development; coalition-building; and third-party stakeholder alliance engagement. She is a frequently sought-after keynote speaker, panelist, meeting facilitator, and moderator of in-person and on-line discussions and webinars. Ilisa earned a BA in English from UCLA and a master of public policy from Georgetown University. Prior to her more than 20 years of serving clients as an external advisor-consultant, Ilisa ran the federal government relations departments at the American Public Health Association and the American Cancer Society. A native of California, Ilisa began her public policy career working on Capitol Hill as a legislative staffer to U.S. Senator Dianne Feinstein (D-CA). She is the proud wife of Scott Paul and mom to twin 15-year-old boys. Ilisa and her family live in Bethesda, Maryland with their rescue dog, Coco.

Annie Kennedy (Chief of Policy, Advocacy and Patient Engagement at EveryLife Foundation for Rare Diseases)

Annie Kennedy

Chief of Policy, Advocacy and Patient Engagement at EveryLife Foundation for Rare Diseases

A veteran leader in the rare disease patient focused drug development movement, Annie joined the EveryLife Foundation in 2018, where she’s led the Cost of Delayed Diagnosis: A Health Economic Study, the National Economic Burden of Rare Disease study, the development of the ICD Code Roadmap, and the community-driven Guide to Patient Involvement in Rare Disease Therapy Development. Annie previously held leadership roles at Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA) where she led landmark legislative, regulatory, newborn screening, transitions, and access policy efforts. She is a sought-after advisor to patient-centered organizations and initiatives across the nonprofit and government sectors. Annie’s community roles include service on the Board of Directors of Cure SMA, the Patient Driven Values in Healthcare Evaluation (PAVE) Steering Committee, the Patient Centered- Core Impact Set (PC-CIS) Steering Committee, the National Health Council’s PCORI Valuation Group, the Innovation and Value Initiative (IVI) Patient Advisory Committee, the National Duchenne Newborn Screening Pilot Steering Committee, the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council, a co-lead with IVI Engaging Patients with Rare Disease in Identifying Meaningful Approaches to CER and Value Assessment (PCORI award), and as a member of the NIH National Center for Advancing Translational Sciences (NCATS) Advisory Council and the Cures Accelerator Network (CAN) Advisory Board.

Annie has served within the community for nearly three decades through her roles with Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA). In that time she helped lead legislative efforts around passage and implementation of the MD-CARE Act (2001, 2008, 2014), the Patient Focused Impact Assessment Act (PFIA) which became the Patient Experience Data provision within the 21st Century Cures Act (sec 3001), engagement with the FDA and Industry around regulatory policy and therapeutic pipelines, led access efforts as the first therapies were approved in Duchenne, and engaged with ICER around the development of the modified framework for the valuation of ultra-rare diseases.

Annie’s community roles include service on the Board of Directors of Cure SMA, the PFDD Works coalition, the Patient Driven Values in Healthcare Evaluation (PAVE) Steering Committee, FasterCures Cures for Life Initiative, the National Health Council’s PCORI Valuation Group, the Innovation and Value Initiative (IVI) Patient Advisory Committee, the National Duchenne Newborn Screening Pilot Program Steering Committee, the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council, the State Rare Disease Education Initiative (STRiDE) National Steering Committee, and as a member of the NIH National Center for Advancing Translational Sciences (NCATS) Advisory Council and the Cures Accelerator Network (CAN) Advisory Board.

Bellinda King-Kallimanis, PhD (Senior Director of Patient-Focused Research at LUNGevity Foundation)

Bellinda King-Kallimanis, PhD

Senior Director of Patient-Focused Research at LUNGevity Foundation

Bellinda is Senior Director of Patient-Focused Research at LUNGevity Foundation. In her work at LUNGevity she aims to ensure that patient and caregiver voices are incorporated in decision making across a wide variety of stakeholders and has built a Citizen Scientist program to aid this. Prior to joining LUNGevity, she worked at the US Food and Drug Administration Oncology Center of Excellence on the Patient Focused Drug Development team. There, she worked on the development and launch of Project Patient Voice, a resource for patients and caregivers along with their healthcare providers to look at patient-reported symptom data collected from cancer clinical trials.

Bellinda also has experience in industry and academia and has published over 70 peer-reviewed papers. She received her Bachelor of Social Science and Master of Science in applied statistics from Swinburne University of Technology in Melbourne, Australia, and her PhD in psychometrics from the Academic Medical Center in Amsterdam, Netherlands.

Meng Li, PhD (Assistant Professor at CEVR, Tufts Medical Center)

Meng Li, PhD

Assistant Professor at CEVR, Tufts Medical Center

Meng Li is an Assistant Professor at the Center for the Evaluation of Value and Risk in Health at Tufts Medical Center and a nonresident fellow at the Leonard D. Schaeffer Center for Health Policy & Economics at the University of Southern California. Her research focuses on defining and measuring novel elements of value for medical technologies, as well as healthcare innovation and pricing.

Prior to joining CEVR, she was an Assistant Professor at the Department of Health Services Research at the University of Texas MD Anderson Cancer Center. She completed her PhD in Pharmaceutical Outcomes Research & Policy at the University of Washington. Her paper “Incorporating real option value in valuing innovation: a way forward” was awarded the First Prize in IVI’s Valuing Innovation Project Call for Papers in 2023.

Kistein Monkhouse, MPA (Founder of Patient Orator)

Kistein Monkhouse, MPA

Founder of Patient Orator

Kistein Monkhouse, a public health advocate and former frontline healthcare worker, is the founder of Patient Orator, a digital platform aiming to improve patient-provider communication and tackle health disparities. Her work extends to award-winning documentary production, including "Humanizing Health Care" and "The Cost of Abortion Bans." Beyond entrepreneurship, Monkhouse actively contributes to various not-for-profit boards, advocating for health equity and amplifying the patient voice.

Eberechukwu Onukwugha, MS, PhD (Professor at University of Maryland School of Pharmacy)

Eberechukwu Onukwugha, MS, PhD

Professor at University of Maryland School of Pharmacy

Eberechukwu Onukwugha, PhD is a Professor in the Department of Practice, Sciences, and Health Outcomes Research at the University of Maryland School of Pharmacy and is the Executive Director of Pharmaceutical Research Computing at the University of Maryland School of Pharmacy. She received a Bachelor of Arts in economics and French from the University at Albany, State University of New York, a Master of Science in agricultural and applied economics as well as a Doctor of Philosophy in economics (concentration: econometrics) from Virginia Polytechnic Institute and State University (Virginia Tech). Dr. Onukwugha completed a two-year postdoctoral fellowship in pharmacoeconomics and health outcomes research at the University of Maryland School of Pharmacy. She was a recipient of the PhRMA Foundation’s Post-Doctoral Fellowship in health economics and outcomes research.

Dr. Onukwugha’s research interests are in cost analysis, health disparities, and medical decision-making by individuals and institutions. She has approximately 20 years of experience conducting health economics and outcomes research using administrative medical and pharmacy claims, hospital discharge, and prospectively-collected data. She uses linked data to investigate the role of contextual (e.g., hospital, physician, and geographic) factors in explaining health outcomes and processes of care. She examines the costs and health outcomes associated with health-related decisions as well as the institutional and environmental context framing individuals’ health-related decisions. The health-related decisions of interest include the decision to receive guideline-recommended treatment, self-care following a hospital discharge, and healthcare resource utilization among adults diagnosed with chronic conditions.

Dr. Onukwugha has authored or co-authored over 120 peer-reviewed articles in health economics and outcomes research. Her research has been published in journals such as Cancer, Ethnicity & Disease, JCO: Clinical Cancer Informatics, PharmacoEconomics, Neurology, Value in Health, Journal of Hospital Medicine, Medical Care, Journal of Managed Care & Specialty Pharmacy, Journal of Oncology Practice, Journal of General Internal Medicine, and Medical Decision Making. Dr. Onukwugha is an Editorial Board member for PharmacoEconomics and an Associate Editor for Ethnicity & Disease. She co-chairs the scientific review committee for the PhRMA Foundation’s Value Assessment and Health Outcomes Research program.

Jason Spangler, MD, MPH, FACPM (Chief Executive Officer at Innovation and Value Initiative)

Jason Spangler, MD, MPH, FACPM

Chief Executive Officer at Innovation and Value Initiative

For nearly two decades, Dr. Spangler, IVI’s Chief Executive Officer, has worked in the professional health policy and public health sector with pharmaceutical and non-profit organizations. Dr. Spangler joins IVI from his most recent role as Executive Medical Director and Director and Head of Global HTA Policy Strategy & Engagement for Amgen, Inc.

Dr. Spangler earned his MD at the Pennsylvania State University College of Medicine in 1998 and his Master of Public Health from Johns Hopkins Bloomberg School of Public Health in 2002. His commitment to public health, preventive medicine, and health equity date back to his medical school residency, during which he served as a medical team leader for free clinics in Costa Rica, a resident coordinator for free clinics for homeless around UPMC, and a clinical educator in the International Medical Corps in Kosovo.

After serving one year as Chief Resident, Dr. Spangler joined Pfizer Global Pharmaceuticals as a Public Health and Health Policy Consultant. He remained in this role for three years and then moved on to the Partnership for Prevention, where he started as a Managing Senior Fellow and was promoted to Chief Medical Officer until he was recruited to Amgen.

Dionne Stalling (Executive Director of Rare And Black)

Dionne Stalling

Executive Director of Rare And Black

Dionne L. Stalling stands at the forefront of a movement dedicated to amplifying the
voices of Black patients within the healthcare landscape. As the esteemed founder and
executive director of Rare And Black, she has tirelessly championed the cause of
ensuring that Black patients' voices are not only heard but also valued and integrated
into the fabric of medical decision-making.

At the helm of Rare And Black, Dionne has spearheaded groundbreaking initiatives
aimed at addressing the systemic disparities that have long marginalized Black patients
within the realm of healthcare. With an unwavering commitment to equity and
inclusivity, she has worked tirelessly to dismantle barriers to access and elevate the
visibility of underrepresented voices within medical research, treatment, and advocacy.

A graduate of Washington University's esteemed Community Research Fellows
program, Dionne embodies the intersection of academic rigor and lived experience.
Armed with a profound understanding of community-based research methodologies,
she harnesses the power of data to advocate for marginalized communities and drive
evidence-based interventions that yield tangible, transformative outcomes.

In addition to her pioneering work with Rare And Black, Dionne serves as a principal at
Athari Strategies, a distinguished health equity consulting firm renowned for its
innovative approaches to addressing disparities within the healthcare system. Drawing
upon her wealth of experience and expertise, Dionne provides invaluable guidance to
organizations seeking to cultivate more inclusive and equitable practices, thereby
paving the way for transformative change within the field of healthcare.

Dionne's impact extends far beyond the confines of any single organization. As a
trusted advisor and thought leader, she sits on numerous advisory boards spanning
multidisciplinary medical specialties, where her insights and perspectives are sought
after by esteemed institutions such as Washington University, Tufts University,
University of Texas at Austin, and Ohio State University, among others. Her unique blend
of strategic acumen and lived experience as a patient with nine rare diseases has
positioned her as a formidable force in shaping the future of healthcare.

With a steadfast dedication to advancing health equity and amplifying the voices of
marginalized communities, Dionne L. Stalling stands as an exemplary leader, inspiring
change and driving progress at every turn. Her tireless advocacy, unwavering resilience,
and boundless compassion serve as a beacon of hope for countless individuals whose
voices have long been silenced or overlooked. In Dionne's vision of a more equitable
healthcare landscape, every patient—regardless of race, ethnicity, or medical
condition—has the opportunity to be seen, valued, and heard.

Simu Thomas, PhD (VP and Global Head HEOR and GMC at Alexion, AstraZeneca Rare Disease)

Simu Thomas, PhD

VP and Global Head HEOR and GMC at Alexion, AstraZeneca Rare Disease

Simu Thomas is the Vice president and Global Head of Health Economics & Outcomes Research and Global Medical Communications at Alexion, AstraZeneca Rare Diseases. Simu brings over 20 years of leadership experience in the areas of Value, HEOR, RWE and Access, building and leading capabilities across the world.

Prior to Alexion, Simu as the Global Head of Value & Access for Rare Diseases at Novartis, Global Head for the Cell & Gene Therapy Unit, where he developed the Value Access strategy for rare diseases and the first CART therapy approved in the world. He was also the founding architect of the IMI HARMONY data initiative with public and EFPIA private partners in Europe, as the leading industry partner in the consortium. Simu ran the Economic Modeling organization at Novartis, was the Global Head of HEOR for Neuroscience and Ophthalmic franchises and US Oncology.

He has authored more than 35 manuscripts and 80 congress presentations and co-authored book chapters in the field of Health Economics. Simu holds a PhD in Pharmaceutical Economics from the University of Maryland and MS in Pharmacy Administration from the University of Toledo and Pharmacy degrees from Birla Institute of Technology and Sciences. Simu also serves as Adjunct Assistant Professor at University of Maryland and Rutgers University of New Jersey.

Melanie Whittington, PhD, MS (Senior Fellow at CEVR, Tufts Medical Center)

Melanie Whittington, PhD, MS

Senior Fellow at CEVR, Tufts Medical Center

Melanie Whittington is a Senior Fellow at the Center for the Evaluation of Value and Risk in Health (CEVR) where she advises on CEVR projects related to value assessment, economic modeling, and CEVR databases. Her research is dedicated to developing and applying novel methods for value assessment. She is also the Principal and Founder of Valusphere where she advises on health technology assessment and provides training to value assessment stakeholders.

Prior to joining CEVR, she was the Director of Health Economics for the Institute for Clinical Economic Review (ICER) where she led the cost-effectiveness analyses and budget impact analyses within ICER reviews. She remains on ICER's Health Economics Council. She is an active member of the International Society for Pharmacoeconomics and Outcomes Research and was the 2022 recipient of the Bernie J. O'Brien New Investigator Award.

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