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FasterCures Quarterly Update: April 2023

Newsletter
FasterCures Quarterly Update: April 2023

In This Issue:

New FasterCures Publications
Convenings Recap
Policy Updates
ICYMI: FasterCures TRAIN Welcomes First Rare As One Mentees
FasterCures in the Media
Upcoming Event: 26th Annual Milken Institute Global Conference
Stay in the Know

New FasterCures Publications

  • Community-Based Infrastructure for Inclusive Research: Engaging the Private Sector
    FasterCures aims to bring together commercially and federally sponsored community-based research networks to involve more communities in clinical research and to realize an “ecosystem of excellence” in a better-coordinated national system. FasterCures’ newest issue brief examines the private-sector clinical research landscape to better understand the gaps sponsors and their partners are seeing and to identify opportunities for collective solutions.

  • Mapping the Journey: Building a Mutual Understanding for Diversity and Equity in Biomedical Research and Clinical Trials
    Biomedical and clinical research in the US has a long history of fostering systemic patterns of abuse of people of color and other marginalized identities. Clinical trials that do not adequately engage and enroll participants of diverse racial and ethnic backgrounds often result in medical tools and interventions that do not work well for all people. This report serves as a resource and guide to those who seek to drive a more accessible, equitable research enterprise.

  • What Can Global North Learn from Global South? Success Attributes from Past Epidemics and Pandemics
    Building on our respective work on lessons learned from COVID-19, Jacobs and FasterCures came together on a research study to examine a paradox of COVID-19: Why did some high-income countries that have historically ranked highly on pandemic readiness indices fare relatively worse in their initial response to COVID-19 than some low- and middle-income countries that have historically ranked lower? This report discusses the qualitative factors that drove international COVID-19 responses to facilitate greater bidirectional learning and dialogue among countries in the Global North and Global South.

Convenings Recap

  • Advances in Science Webinar Series
    In the first FasterCures’ Advances in Science webinar of 2023, Robert W. Eisinger, PhD, acting deputy director for the Division of Program Coordination, Planning, and Strategic Initiatives at the National Institutes of Health, hosted “Building Community-Engaged Research Platforms to Advance Understanding of Long COVID,” a conversation with Gary H. Gibbons, MD, director of the National Heart, Lung, and Blood Institute. View all series recordings on demand, and sign up for updates on upcoming webinars.

  • Preparing US Clinical Trials Infrastructure for Emergencies
    One actionable step to improve the R&D environment is to develop community-based clinical trial infrastructure. We believe this is important for many reasons, including future pandemic preparedness. On behalf of FasterCures, Esther Krofah, executive vice president of Milken Institute Health, participated in a White House Office of Science and Technology Policy virtual roundtable on this topic.

  • United Nations General Assembly Reception
    FasterCures’ work to advance early warning systems was noted in a reception after a briefing at the United Nations headquarters this February. The briefing addressed the importance of early warning systems design leveraging modern data logistics, the democratization of artificial intelligence tools, and the need to implement data-driven policies informed by science. To learn more about our work on this topic, please visit our Early Warning System page.

  • First Cup with FasterCures
    This February, we hosted another First Cup with FasterCures policy discussion with guest speaker Meena Seshamani, MD, deputy administrator and director of the Center for Medicare at the Centers for Medicare & Medicaid Services (CMS). She discussed how CMS will implement the Inflation Reduction Act. First Cup is an invite-only breakfast designed for policy experts to network and engage with colleagues across sectors in targeted discussions to advance public- and private-sector solutions that lead to accelerating biomedical innovation.

  • Building and Sustaining Diversity and Equity in Digital Health
    On February 28, FasterCures hosted a virtual workshop, focused on the current landscape of diversity and equity in digital health. Participants learned from key experts and engaged in a facilitated discussion to better understand the current challenges and potential solutions to ensure that digital health innovation and tools are representative and adequately reflect the diversity of underrepresented communities. A few key takeaways from the discussion were:

    • embedding equity into systems and processes purposefully and intentionally,

    • acknowledging historically underrepresented groups and why they’ve been historically underrepresented,

    • standardizing definitions for data sets and diversity to collect accurate data and perform accurate analysis, and

    • recognizing and trying to correct misaligned economic incentives.

  • Patient Engagement Virtual Roundtable
    FasterCures hosted the roundtable discussion, “Bridging the Nonprofit and For-Profit Divide for Research: Solutions for Better Stakeholder Alignment.” Speakers shared how they have partnered with both nonprofit and for-profit stakeholders to implement their patient engagement efforts and noted effective strategies for increasing diversity, equity, and inclusion initiatives in research, building trust in partnerships, and enhancing patient advocacy group capacity for future efforts. Meeting participants discussed solutions to overcome challenges in these areas, and FasterCures will use this information to contribute to future patient engagement activities and reports.

  • Research Partnership Maturity Model Interactive Workshop
    As part of our efforts to support patient organizations in The Research Acceleration and Innovation Network and the Rare As One Mentorship Program, FasterCures hosted the Research Partnership Maturity Model Interactive Workshop in Santa Monica, California, on March 21. Over 25 patient organization leaders convened for this one-day workshop to discuss how they can utilize FasterCures’ Research Partnership Maturity Model to develop strategies for advancing research partnerships and catalyzing biomedical research. FasterCures plans to host similar workshops for patient organizations that participate in these networks in the future.

  • Newly Launched NCATS Alliance
    The National Center for Advancing Translational Sciences (NCATS) is a key player in research to deliver new and innovative treatments to patients faster. FasterCures is proud to be a founding member of the NCATS Alliance, which seeks to advance its critical work by educating the public and policymakers about the vital role of NCATS and the need for sustained appropriations. View and download the kickoff webinar.

  • Science | Business Roundtable
    On behalf of FasterCures, Esther Krofah, executive vice president of Milken Institute Health, joined a roundtable hosted by Science | Business that included high-level stakeholders across academia, research, industry, and policy who are actively working on prevention, preparedness, and response efforts. Experts discussed the need for US, European, and international policymakers to join forces ahead of future outbreaks and the role of the EU and its member states in the World Health Organization pandemic treaty’s drafting and negotiating process. As a follow-up, Science | Business will publish a list of policy recommendations coming out of the roundtable to inform the treaty’s drafting process.

Policy Updates

  • Clinical Research Infrastructure and Emergency Clinical Trials
    FasterCures responded to the Office of Science and Technology Policy’s request for information on clinical research infrastructure and emergency clinical trials. Addressing common gaps can help integrate community sites consistently and seamlessly into clinical research, broadening access and better preparing a resilient and responsive system. We suggested approaches to build coordination, expand the clinical research workforce to include non-traditional workers, leverage existing resources to better include community sites, and integrate a growing commercial sector working to address these gaps. Read our comment letter.

  • Pandemic and All-Hazards Preparedness Act Reauthorization
    FasterCures submitted comments on the Congressional request for information regarding the Pandemic and All-Hazards Preparedness Act (PAHPA) reauthorization. We believe PAHPA provides numerous opportunities to strengthen the nation’s response to a future pandemic and other hazards. Priorities should include:

    • the enactment of the PASTEUR Act in the reauthorization of PAHPA to address the financial challenges affecting antibiotic development,

    • establishing and investing in robust early warning capabilities as a core component of bio surveillance activities, and

    • long-term commitments for public-private partnerships (such as the Strategic National Stockpile and Supply Chain Control Tower) with enhanced coordination to support pharmaceutical supply chain resilience.

     

    Read our comment letters to the House Energy and Commerce Committee and the Senate Health, Education, Labor, and Pensions Committee.

  • FDA CBER OTAT Public Patient-Focused Drug Development Listening Meeting—Patient Perspectives on Gene Therapy Products
    FasterCures submitted comments to the FDA’s Center for Biologics Evaluation and Research (CBER) Office of Tissues and Advanced Therapies (OTAT) as part of the Patient-Focused Drug Development Meeting on Patient Perspectives on Gene Therapy Products held on November 15, 2022. From our years of work bringing together our community of stakeholders, we found that a common challenge is variability in knowledge and understanding of gene therapies among patients, caregivers, payers, providers, and payers. To ensure that patients can make the most informed decisions, we recommend the FDA:

    • help make credible information about gene therapies easier for patients and caregivers to find,

    • identify and correct areas where the current educational resources do not match patients’ needs, and

    • invest in provider education.

ICYMI: TRAIN Welcomes First Rare As One Mentees

In partnership with the Chan Zuckerberg Initiative (CZI) Rare As One (RAO) Program, FasterCures is coordinating mentorship opportunities to deepen relationships within the nonprofit disease-research community and support RAO organizations as they develop patient-driven research networks and make progress toward treatments and cures. Our first cycle has been completed, and FasterCures welcomed the cycle one participants of the CZI and FasterCures’ RAO Mentorship Program into TRAIN.

As a reminder, applications to TRAIN are accepted on an ongoing basis. If you are looking to advance your research efforts and make new connections with other R&D leaders, apply here today!

FasterCures in the Media

Upcoming Event: 26th Annual Milken Institute Global Conference

Join the conversation on shaping the future at the 26th annual Milken Institute Global Conference from April 30 to May 3, 2023. Bringing together thought and industry leaders from across the spectrum, this year’s theme of “Advancing a Thriving World” will tackle the most pressing challenges and capitalize on the most exciting opportunities of our time.

Stay in the Know