AACR CEO Margaret Foti with cancer survivor Cayden Addison, his mother Courtney, and his brother Christian

Policy and Advocacy

Science Policy and Government Affairs

In addition to fostering collaboration and innovation, the AACR advances its mission to prevent and cure all cancers by addressing the policy and regulatory challenges that can impede progress against cancer. The AACR Office of Science Policy and Government Affairs engages with lawmakers and regulators on behalf of the cancer research community, providing expert guidance on science-based policies to benefit cancer patients.

SCIENCE POLICY AND GOVERNMENT AFFAIRS COMMITTEE: ROY S. HERBST, MD, PHD, CHAIR

The AACR Science Policy and Government Affairs Committee identifies public issues of concern to the cancer research community and focuses on mechanisms for accelerating cancer research. Under the leadership of chair Roy S. Herbst, MD, PhD, the committee educates legislators and government agencies about these issues and advocates for increased funding for cancer research.

AACR Cancer Progress Report 2023. The annual AACR Cancer Progress Report is a cornerstone of the AACR’s efforts to educate legislators and the public about the critical value of cancer value research and to advocate for increased funding for the federal agencies that are vital for fueling progress against cancer in particular, the National Institutes of Health (NIH), the National Cancer Institute (NCI), and the Food and Drug Administration (FDA). AACR President (2023–2024) Philip D. Greenberg, MD, FAACR, CEO Margaret Foti, PhD, MD (hc), and cancer center directors Louis M. Weiner, MD, and Cheryl L. Willman, MD, gathered in Washington, D.C. with cancer survivors to mark the release of the thirteenth edition of this foundational report. The report underscored how recent advances across the clinical cancer care continuum are helping more patients live with and beyond their cancers, and it highlighted efforts to address the needs of an increasing number of cancer survivors.

AACR President Philip D. Greenberg at the policy briefing for the AACR Cancer Progress Report 2023.

Early-Career Hill Day. In March, the AACR and its Associate Member Council hosted 20 Associate Members from 11 states for the eighth annual AACR Early-career Hill Day. The delegation of early-career scientists participated in more than 40 meetings with their senators and representatives and asked them to support continued robust funding for the NIH and NCI. In addition to educating the scientist participants about the importance of advocacy for federal research funding, the event provided a unique opportunity for lawmakers to hear firsthand about the professional issues confronting cancer researchers in training and how the funding decisions they make impact progress against cancer.

Participants in the 2023 AACR Early-Career Hill Day

AACR/AACI Joint Hill Day. In May, the AACR and the Association of American Cancer Institutes (AACI) brought together nearly 100 advocates from 27 states—including cancer center directors, scientists, clinicians, and survivors—for their annual Hill Day. The participants met with the offices of more than 110 members of Congress or their staff to emphasize the critical impact that biomedical research funding has on the lives of cancer patients.
AACR President (2023-2024) Philip D. Greenberg, MD, FAACR, and AACR Science Policy and Government Affairs Committee chair Roy S. Herbst, MD, PhD, represented the AACR in meetings with the offices of legislators and appropriators to present the compelling case for increased funding for cancer research.

Philip D. Greenberg, MD, FAACR, and Roy S. Herbst, MD, PhD, at the AACR/AACI Joint Hill Day

Rally for Medical Research Hill Day. In September, more than 350 organizations representing patients, caregivers, researchers, and health care professionals participated in the 11th annual Rally for Medical Research Hill Day in Washington, D.C. More than 200 advocates representing more than 30 states learned about the appropriations process and effective strategies for communicating with lawmakers about the importance of robust annual funding increases for the NIH, and they put those skills to use while participating in more than 190 meetings with members of Congress.

Participants in the 2023 Rally for Medical Research

Survivor and Patient Advocacy

The AACR’s scientific programs and initiatives bring together scientists, clinicians, and other health care professionals and focus their efforts on improving the lives of cancer patients. Through its Survivor and Patient Advocacy programs, the AACR also educates and empowers patients, caregivers, and advocates, enabling them to approach their cancer journeys with knowledge and confidence.

AACR SCIENTIST↔︎SURVIVOR PROGRAM®: 25 YEARS OF CONNECTING COMMUNITIES

The AACR Scientist↔︎Survivor Program® (SSP) builds enduring partnerships among leaders of the scientific, survivor, and patient advocacy communities by convening them at AACR scientific meetings to engage with the latest innovative cancer science. Survivors and advocates attend focused lectures and scientific sessions with scientist mentors, fostering an exchange in which patients and advocates explore the biology behind treatment decisions and scientists learn about the impact their work has on the patient experience.

In April, the AACR celebrated the 25th anniversary of the founding of the SSP program with a special acknowledgement during the Opening Ceremony of the AACR Annual Meeting 2023. AACR CEO Margaret Foti, PhD, MD (hc), recognized program founder Anna D. Barker, PhD, FAACR, during the ceremony, and SSP participants were brought on stage so that Annual Meeting attendees could thank them and their fellow advocates around the world for their contributions to improving the lives of patients with cancer.

Patient advocates on stage during the Opening Ceremony at the AACR Annual Meeting 2023

VIRTUAL PATIENT ADVOCATE FORUMS

Under the leadership of SSP founder Anna D. Barker, PhD, FAACR, this regular series of educational sessions addressed several critical topics in 2023, including the impact of advanced technologies on cancer research; the evolution of FDA regulatory science and its impact on cancer; and the future of drug discovery and development. Since the launch of the series in October 2020, these excellent forums have garnered an audience of nearly 3,000 people in 60 countries around the world.

AACR CONFERENCES AND WORKSHOPS: PATIENTS AS PARTNERS IN CANCER RESEARCH

The AACR Survivor and Patient Advocacy program amplified the voices of patient advocates in 2023, organizing patient advocate sessions at several AACR conferences and workshops to educate participating scientists about the value of patient input in the research process:

AACR Annual Meeting 2023. Patient advocate Patricia Spears moderated a special session on "Patient and Community Advocate Partners in Cancer Research," which showcased examples of how researchers and patient advocates are collaborating in research programs and scientific studies to drive progress against cancer.
16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved. In September, two-time breast cancer survivor and patient advocate Ivis C. Febus-Sampayo moderated a session titled "Advocacy at the Bench: A Discussion about Building a Diverse, Equitable, and Inclusive Cancer Community," which highlighted patient advocacy efforts that are addressing barriers to diversity, equity, and inclusion.
AACR Special Conference in Cancer Research: Ovarian Cancer. At this conference in October, Kunle Odunsi, MD, PhD, chaired a special session on "Exploring the Role and Impact of Patients: A Collaborative Approach to Cancer Research." Participants addressed topics such as health policy, community outreach, models of advocate participation, and the future of such collaborations.
Translational Cancer Research for Basic Scientists Workshop. At this workshop in November, George D. Demetri, MD, FAACR, and Ryan B. Corcoran, MD, PhD, chaired a session titled “Understanding the Role and Impact of Patients: Patient-Partnered Cancer Research.” Patient advocates Julie Krause, Bob Riter, and Patricia Spears shared strategies for engaging patients in research projects.
ASCO/AACR Workshop on Methods in Clinical Cancer Research. Held in July, this long-running workshop trains clinical fellows and junior faculty clinical researchers in the essentials of effective clinical trial designs of therapeutic interventions in the treatment of cancer. Throughout the intensive week-long course, patient advocates Carole Baas, Diana T. Chingos, Everett E. Dodson, Jill Feldman, Manju George, Sanford Jeames, Josh Mailman, and Cassadie Moravek joined the faculty in small group discussion sessions with the trainees and worked with protocol development groups to assist them in refining their clinical trial designs.

As the founder of Hope for Stomach Cancer—a nonprofit that promotes prevention and early detection of stomach cancer and provides resources on treatment, survivorship, and caregiving—Aki Smith supports hundreds of stomach cancer patients and their families each year. However, she began her journey as a caregiver for one person.

Aki’s father, Shigeo Tsuruoka, was diagnosed with stage 3B stomach cancer in 2014 and was given an initial prognosis of six months. As she helped her father navigate the medical system, Aki noted several challenges that she and Shigeo had to overcome. As a Japanese immigrant, her father was at increased risk for stomach cancer; in addition, his limited proficiency with the English language and the fact that he sought care at a community hospital instead of a comprehensive cancer center may have led to an initial misdiagnosis that delayed his treatment. Further, Aki had to file appeals with Shigeo’s Medicare provider to ensure that his care would be covered.

In 2016, Aki founded Hope for Stomach Cancer to help other patients and caregivers overcome these same challenges. As a new advocate, she participated in the AACR Scientist↔︎Survivor Program® at the AACR Annual Meeting 2017, an “amazing” experience that gave her access to leading experts in gastrointestinal cancer. She returned to the AACR Annual Meeting with Hope for Stomach Cancer—presenting an advocate poster in 2022 and exhibiting in the Advocacy Partners Pavilion in 2022 and 2023—noting that “attending the AACR Annual Meeting always seems to bring about something positive.”

In September, Aki delivered the Advocate Keynote Address to kick off the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved. She noted that while her father is currently in remission, the factors that challenged him during his care—such as age, socioeconomic status, location, and race—promote disparities in cancer incidence and treatment if left unaddressed. Her goal for Hope for Stomach Cancer is to help patients overcome those challenges: “We aim to create the navigational tools we wished we had.”

Learn more about Aki’s story on the AACR blog.

CANCER TODAY MAGAZINE

Cancer Today is the AACR’s award-winning magazine and website for cancer patients, survivors, and caregivers. Published since 2011, the magazine has addressed important cancer topics in a comprehensive, understandable way. Cancer Today is a vital resource for those navigating a cancer diagnosis, treatment, or survival. Among the most read stories published in 2023 were the following:

Cervical Cancer Found at Later Stages After 65. A study found women 65 and older were more likely to have cervical cancer diagnoses at a later stage than younger women.
Coffee Time. Recent studies have found that a cup of coffee is associated with reduced risk of endometrial and liver cancers.
Preventing Nerve Damage. Compression and cold therapy may limit chemotherapy-induced peripheral neuropathy, research finds.
Sex and Gender Minorities Face Disparities in Breast Cancer Care. Lesbians, bisexual women, and transgender men had a longer wait for diagnosis and a higher risk of recurrence.
Deconstructing Peripheral Neuropathy and Chemo Brain. Researchers explore mechanisms of chemotherapy-related neurotoxicity.
More Prostate Cancer Patients Choose Surveillance. Men are increasingly opting to put off treatment for low-risk prostate cancer, and doctors say it’s a good thing.

Distinguished Public Service Awards

The AACR Distinguished Public Service Award recognizes individuals whose extraordinary work has exemplified the AACR’s mission to prevent and cure all cancers through research, education, communication, collaboration, science policy, advocacy, and funding for cancer research. During the Opening Ceremony at the AACR Annual Meeting 2023, the AACR honored two inspiring patient advocates who have also served as advocate mentors in the AACR SSP program.

Phyllis Pettit Nassi, MSW
Associate Director of Research and Science, Special Populations
Huntsman Cancer Institute at the University of Utah
Salt Lake City, Utah

An AACR member since 2010, Ms. Pettit Nassi is an enrolled member of the Otoe-Missouria Tribe and member of the Cherokee Nation whose work has profoundly impacted tribal, rural, and frontier communities and improved quality of life and access to cancer care. She served as a member of the AACR Cancer Disparities Progress Report Advisory Committee in 2022 and as program committee cochair for the 12th AACR Conference on The Science of Cancer Health Disparities in Racial/Ethnic Minorites and the Medically Underserved in 2019. She received the Distinguished Public Service Award in recognition of her longstanding commitment as a patient advocate for American Indian Tribes across the Mountain West and beyond, and for an unwavering commitment to improving health literacy and clinical trial enrollment among American Indian populations.

Jane Perlmutter, PhD, MBA
President and Founder
Gemini Group
Ann Arbor, Michigan

A survivor of breast, esophageal, and lung cancer herself, Dr. Perlmutter has been a member of the AACR since 2006. She has served on the steering committees and as the lead advocate on the ISPY and TAPUR trials, and as chair of the Patient-Centered Outcomes Research Institute (PCORI) Patient Engagement Advisory Panel. She has also served on numerous other advisory boards, committees, and task forces—including the Alliance for Clinical Trials, with the goal of integrating patient concerns and priorities into large clinical trials and other cancer research initiatives. She received the Distinguished Public Service Award in recognition of her unparalleled leadership as a patient advocate, including through the AACR’s Scientist↔︎Survivor Program®; her dedication to improving the patient experience through innovative clinical trial designs; and for efforts to ensure that the patient voice is included in research and trial design, accelerating patient access to new treatments and drastically improving their quality of life and overall survivorship.