Latest updates include the release of the Advocacy Accomplishments Report, illustrating ACS CAN's tremendous impact in 2023.
A message from ACS CAN President Lisa Lacasse
Throughout the last month, I've been grateful for the opportunities I've had to witness the collective strength of our team and volunteers as they work tirelessly to move our policy priorities forward. This week, we were proud to release ACS CAN's 2023 Advocacy Accomplishments Report, illustrating ACS CAN's tremendous impact last year. Please continue to share with your networks.
If you are following headlines, you'll know Congress has again pushed the deadline to pass a federal budget. Volunteers across the country continue to urge lawmakers to pass a budget that increases funding for cancer research at the National Institutes of Health (NIH) and National Cancer Institute (NCI), as well as funding for Centers for Disease Control and Prevention (CDC) programs, which are critical priorities for us.
Outlining our priorities and celebrating our impact, ACS CAN held our first Board meeting of 2024, which included a joint meeting with the American Cancer Society (ACS) Board in Philadelphia. During our meeting, Dr. Knudsen highlighted ACS CAN's incredible work in 2023 that touched 71.1M lives. The progress we’ve made towards increasing access to biomarker testing, reducing barriers to cancer screening, Medicaid expansion, and tobacco control efforts is thanks to our incredible team, volunteers and supporters. You are what makes ACS CAN so special!
In February, Black History Month was an opportunity to honor trailblazers who changed the face of cancer care. We were inspired by ACS’ African American/Black Employee and Engagement Group (EEG) Black History Month Webinar on “Navigating the Intersection: Black Leadership, DEI, & Health Equity," moderated by ACS Senior Vice President and Chief Diversity Officer Tawana Thomas-Johnson. A special thank you to ACS CAN Board Chair Dr. Kimberley Jeffries Leonard and ACS board members Dr. Robert Winn and Dr. Wayne A. I. Frederick for sharing their rich perspectives and insights on advancing equity across the cancer care continuum.
I also had the honor of attending our first-ever ACS CAN Affinity Group Roundtable in Chicago. (See photo at right.) When I became president of ACS CAN in 2019, I looked forward to a convening of volunteers and leaders who truly represent patient voices nationwide and the diversity of the communities impacted by cancer. Since then, we’ve grown our affinity groups— ACS CAN’s Black Volunteer Caucus, LGBTQIA+ and Allies Engagement Group, ACSi Se Puede, Asian and Pacific Islander Volunteer Caucus and Young Leaders Caucus— who are crucial to our progress in diversifying and expanding our grassroots network. We were thrilled to welcome Indigenous volunteers as well, as we look forward to strengthening our partnerships with Native Tribal Communities and supporting an emerging affinity group. As we continue to offer our full support and partnership to these leaders, I’m so excited about the impact we will continue to make and our power to influence public policies together.
ACS CAN Board Members Jose Ramos and Philip O’Brien were in attendance for these insightful days of listening and learning. Thanks to Jose and Phil and everyone on our team who helped make our Affinity Group Roundtable possible!
I’d like to also shout out our new Cancer Votes National Ambassador, Philip O’Brien, who will serve as brand ambassador for Cancer Votes to stakeholders, including donors, volunteers, and the media, ahead of this year’s elections.
And to round off a month of celebration, we are immensely proud that ACS CAN’s North Carolina Medicaid Expansion Campaign Team received one of the inaugural OneACS Awards in recognition for their long-term effort towards this win. This award is the highest honor given by ACS and ACS CAN for the exceptional contributions of individuals or teams toward our cancer mission. Their impact is helping illuminate a path forward to expand Medicaid in the 10 remaining states that have yet to do so, one of our top priorities for this year. ACS CAN is currently running ads in Georgia, Alabama, and Mississippi as part of our work to make that happen.
I am grateful for your continued partnership.
In Case You Missed It:
New Survey Finds Affordability Leading Policy Priority for Cancer Patients and Survivors
In ACS CAN’s most recent Survivor Views survey, 52% of respondents selected protecting no-cost preventive care, including cancer screenings, as their top policy priority, compared to 37% in 2020. The system is failing families touched by cancer as affordability continues to be one of the leading barriers to cancer care and a primary cause of medical debt. Today’s high cost of cancer care is also leading to food insecurity for patients, particularly for individuals with lower incomes and Black and Hispanic patients. More than 40% of cancer patients and survivors surveyed report that the cost of their cancer care has impacted their ability to afford to purchase food. Read more.
As part of ACS CAN’s ongoing commitment to making cancer care affordable for everyone, ACS CAN's 2024 Forum on the Future of Health Care on May 9th will focus on alleviating the burden of medical debt many cancer patients, survivors and their families face. Please register to join us in-person or virtually.
Journal of Clinical Oncology Publishes Paper on PGx Testing
A new paper released in the Journal of Clinical Oncology, co-authored by ACS CAN’s policy experts, Dr. Sharon Shriver, Devon Adams, Dr. Mark Fleury and external stakeholders, finds that while incorporating pharmacogenomic (PGx) testing into cancer care can help improve patient outcomes, barriers to PGx testing, discovery, and implementation are impacting its adoption and creating disparities that impact diverse populations. The paper highlights nine consensus recommendations ACS CAN released in June 2023 to promote more equitable PGx discovery and implementation for cancer patients. The recommendations, which address barriers in PGx discovery, policy, and application, were created by a working group of stakeholders including researchers, policymakers, industry representatives, and patient advocates.
ACS Study Finds People with Incarceration History Less Likely to Receive Health Care
In the Journal of the American Medical Association (JAMA) Health Forum, a new study led by researchers at the American Cancer Society (ACS) shows people with an incarceration history had worse access to and receipt of healthcare. Medicaid is an important source of health insurance for thousands of people who would not otherwise have access to care, including those who have been released from incarceration and are transitioning back to their communities.
Federal Updates
OVAC Lobby Day
Yesterday, about 20 ACS CAN volunteers joined more than 70 attendees for One Voice Against Cancer (OVAC) Lobby Day, representing over 20 OVAC member organizations. Volunteers visited more than 105 offices to advocate for final FY24 funding and introduce our FY25 funding requests. The timing is critical as Congress works toward the March 22nd continuing resolution deadline that will fund NIH, NCI and the CDC.
Childhood Cancer Action Day
ACS CAN volunteers recently traveled to Washington, D.C. from across the nation to join more than 200 other cancer patients, survivors and family members from 32 states and the District of Columbia in the nation’s capital for the 14th Annual Alliance for Childhood Cancer Action Days. This two-day event was organized by the Alliance for Childhood Cancer, of which ACS CAN is a member. The volunteers shared their personal stories and urged lawmakers to fund childhood cancer programs and support legislation to improve access to care. Participants asked lawmakers to fully fund the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act to improve the quality of life of childhood cancer patients, survivors and their families, and to cosponsor the Accelerating Kids’ Access to Care Act which would reduce regulatory burdens to allow greater access to out-of-state providers who can best meet the needs of childhood survivors. Additionally, they urged Congress to continue to make strong investments in the National Institutes for Health and the National Cancer Institute to help advance discoveries in the fight against childhood cancer. See news story from the event.
ACS CAN issued a letter to the National Institutes of Standards and Technology (NIST) commenting on the utilization of march-in rights (MIR) to lower prescription drug costs. Bolstered by the Bayh-Dole Act, the government-industry research ecosystem has been critical to today’s progress in cancer research. We share the Administration’s mission to lower drug costs, and no discovery that could improve public health should sit on a shelf or be inaccessible to the public. Nonetheless, we remain concerned about the effectiveness of utilizing march-in authority as a tool to effectively lower costs and its potential to jeopardize our nation’s impactful public-private partnership for cancer therapies.
In the Judiciary
Cancer Patients Access to Fertility Treatments
A recent decision by the Supreme Court of Alabama on the status of embryos has already caused multiple clinics in the State to pause in vitro fertilization treatments due to fear of criminal and civil liability against providers and patients. Dr. Knudsen issued a statement noting our deep concern about the negative impact this ruling may have on cancer patients, survivors and their families. Read this brief ACS CAN and our partner organizations issued in 2022 for more information on the intersection of cancer and reproductive health.
ACS CAN and Partners Defend FDA Authority to Regulate Flavored Cigars
ACS CAN and tobacco control partners filed an amicus brief in the federal district court in DC defending the FDA’s authority to regulate flavored cigars. The brief provides background on how the FDA is appropriately interpreting the Tobacco Control Act (TCA) in the Deeming Rule as applied to cigars, data on how manufacturers changed their cigars to add flavors after the TCA prohibited flavored cigarettes, as well as their marketing practices aimed at children.
- In late February, the US Court of Appeals for the Tenth Circuit upheld marketing denial orders (MDOs) issued by the FDA to manufacturers of flavored e-cigarettes for their products. This decision continued a great national trend: seven different circuit courts have now upheld the FDA’s MDOs for flavored e-cigarette products on the merits, while two circuits have struck them down.
On Monday the U.S. Court of Appeals for the Fifth Circuit heard oral arguments in Braidwood Management v. Becerra, a case that threatens access to evidence-based preventive services without cost-sharing as required under the Affordable Care Act (ACA). The services at-risk include those recommended by scientific experts at the U.S. Preventive Services Task Force (USPSTF), the Advisory Committee on Immunization Practices (ACIP) and the Health Resources and Services Administration (HRSA). ACS CAN has led three amicus briefs with 16 public health groups in the case, the most recent brief citing research that shows how cost-sharing decreases patients’ ability to receive care that can prevent disease, identify illness early and reduce the physical and financial burden of severe illnesses. ACS CAN issued a statement prior to oral arguments urging the appeals to uphold the law.
State Updates
Patient Advocates Applaud Governor’s Proposals Alleviating Pennsylvanians’ Medical Debt
In his 2024-25 Executive Budget, Pennsylvania Governor Shapiro proposed a $4 million investment to wipe out as much as $400 million in Pennsylvanians’ medical debt and maintain funding for the Pennsylvania Breast & Cervical Cancer Early Detection Program (PA BCCEDP) as well as tobacco prevention and cessation programs. ACS CAN joins our partners in applauding Governor Shapiro’s proposed investment and is eager to support this executive proposal along with all other efforts that seek to reduce the impact of medical debt on patients and their families. Additionally, we continue to work to get a biomarker coverage bill passed in PA that would change the status quo and ensure equitable access to this testing.
Indiana Senate Votes to Remove Barriers to Precision Treatments
The Indiana Senate passed Senate Bill 273, sending the bill to the Governor for signature, which will ensure biomarker testing is covered by more insurance plans in the State. Biomarker testing is a game changer in the fight against cancer and an essential step in accessing precision medicine treatments. This legislation will help address a significant barrier and bring the promise of precision medicine to more Hoosiers, no matter their income or where they live.
Budget Takes Michigan in the Right Direction
Michigan Governor Gretchen Whitmer introduced her proposed budget, which increases funding for programs addressing tobacco use in the state. Investing in measures to combat tobacco consumption is needed to counteract the $308.4 million per year that tobacco companies are spending to market their deadly and addictive products in Michigan. As lawmakers make their way through the budget, ACS CAN calls on the legislature to keep the additional funding proposed by the Governor.
Smoke-free Policies Pass in California
ACS CAN’s Voice Inspiring Valley Action (VIVA) volunteers helped pass a tobacco-free campus policy at West Hill Community College. The second reading for final review and approval will be held on March 12th. The VIVA Team organized a Spanish Spokesperson Training for 20 adult promotoras/community health workers to discuss sharing their public comments and stories with city council in support of comprehensive smoke-free ordinance that includes ensuring smoke-free multi-unit housing in Madera.
Wisconsin Assembly adjourns After Prioritizing Palliative Care and Nutrition
ACS CAN has been working on passing palliative care policy in Wisconsin since 2017, which recently passed in the Assembly. As this legislation has never gotten past a hearing before, this is significant progress. A Healthy Food Incentives bill that would double dollars for SNAP purchases of fresh fruits also passed the Assembly, and a full-floor vote on this measure in the Senate is possible between now and mid-March. Finally, the WI team and volunteers successfully defeated a Tobacco Bar bill and Farm Bureau bill, both detrimental to our overall efforts to reduce the cancer burden in the state.
ACS CAN Testifies in Favor of Legislation Defining Palliative Care in South Dakota
ACS CAN testified in favor of legislation which created a definition of palliative care in South Dakota’s state statute, thus allowing for the Department of Health and healthcare systems to apply for federal grants for in-home care for cancer patients. The bill passed unanimously in the House Health and Human Services Committee and now moves to the House floor for a vote.
Wyoming and Montana Team Advocate to Close the Coverage Gap
The ACS CAN Wyoming and Montana team held Cancer Action Day and legislative meetings on Medicaid with key policymakers in Wyoming. Our film about Wyomingites in the coverage gap debuted at the Wyoming Nurses Association’s legislative reception, with 75 people in attendance. The following day, 25 volunteers and partners attended the largest CAD ever held in the state.
Advocacy in the News
•Fortune: Public health advocates urge action on menthol, applaud accomplishments like patient navigation as Biden admin celebrates 2nd anniv. of ‘cancer moonshot’
•Flow Space: Cancer Rates Are Rising in People Under 50. Here’s Why & How to Lower Your Risk
•KFF: Southern Lawmakers Rethink Long-Standing Opposition to Medicaid Expansion
•CNN: Alabama attorney general’s office says it has ‘no intention’ to prosecute IVF families, providers
•WLFI: Indiana lawmakers pass legislation for access to biomarker testing
•AP: Bill would let Atlantic City casinos keep smoking with some more restrictions
•Washington State Standard: State lawmakers won’t require insurers to cover tests cancer survivors say are crucial
•Wyoming News Now: This is Wy: Wyomingites stories from the Health Coverage Gap
•PBS News Hour : How Louisiana cancer patients navigate the ‘hidden’ costs of participating in clinical trials
