Legislative sessions are underway, and ACS CAN is driving momentum on Capitol Hill and in statehouses.
A message from ACS CAN President Lisa Lacasse
Legislative sessions are underway, and ACS CAN is driving momentum on Capitol Hill and in statehouses as we advocate for our legislative priorities that will reduce the cancer burden for everyone this year and beyond.
I was thrilled to start 2024 by welcoming two new distinguished ACS CAN Board members, Dana Bernson, MPH and Margaret McCaffery, JD, as well as our newly appointed Board chair, Dr. Kimberly Jeffries Leonard, all outstanding champions for cancer patients and their families. Our Board leaders, our team and our volunteer network across the country are essential to our advocacy. ACS CAN's work is as crucial as ever as the U.S. is expected to exceed 2 million new cancer diagnoses for the first time this year, according to the American Cancer Society’s annual Cancer Facts and Figures released last month.
Federally, we are urging lawmakers to increase funding for cancer research at the National Institutes of Health (NIH) and National Cancer Institute (NCI) and increase funding for Centers for Disease Control and Prevention (CDC) programs as we quickly approach the March 8th continuing resolution deadline. We continue to elevate patient voices through impactful advertising targeting Capitol Hill, urging lawmakers to make time for real survivors like Caroline Torres Maldonado and Miguel Melendez.
We are also working to advance legislation that will ensure equitable access to care, including the Multi-Cancer Early Detection (MCED) Act, which would create a pathway for coverage for MCED tests for Medicare beneficiaries once FDA-approved and clinical benefit is shown, and the Prostate-Specific Antigen Screening for High-risk Insured Men (PSA Screening for HIM) Act, which aims to reduce prostate cancer disparities and improve health outcomes for those at highest risk by removing cost barriers to screening.
On the prevention front, we are urging the Biden Administration to finalize rules that eliminate menthol cigarettes and flavored cigars. While the FDA submitted final rules to the White House’s Office of Management and Budget in October, the Administration has continued to delay their release. Along with our partners, we have created significant pressure on the Administration to prohibit the sale of these addictive products. Read the joint op-ed in U.S. News & World Report by Dr. Knudsen and the CEOs of the American Heart Association and American Lung Association urging the White House to take swift action, along with advertising with coalition partners elevating Black leaders calling out Big Tobacco’s false narrative.
Across the country, ACS CAN volunteers have started gathering at their statehouses, asking lawmakers to make cancer a legislative priority this year. During Virginia’s Cancer Action Day, advocates urged lawmakers to support legislation that seeks to improve Virginians’ access to lifesaving medication and reduce the out-of-pocket financial burden for cancer patients. Among the advocates in attendance was Tiffany Freeman, who completed treatment for stage III colorectal cancer just weeks before the COVID-19 pandemic shutdown in 2020. “Thankfully, the high costs were not a barrier to my care, but the same cannot be said for many Virginians who’ve forgone care to avoid strapping medical debt,” Tiffany said of her experience. “No patient should have to choose between their physical and financial health.” And in Indiana, cancer patients, survivors and caregivers from across the state traveled to Indianapolis to meet with their elected officials, asking them to prioritize legislation that would reduce tobacco use and improve access to biomarker testing.
ACS CAN will keep up the drumbeat, raising the patient voice to policymakers, elected officials and candidates nationwide. ACS CAN is soon launching our Cancer Votes program to inform voters about candidates’ positions on cancer issues during this election year. ACS CAN and our volunteers will work to get candidates on the record on cancer priorities before the election, cultivate legislative champions for ACS CAN’s priorities, build relationships with candidates that extend into their legislative service, and hold lawmakers accountable post-election.
Thank you, as always, for your commitment to our important work.
Celebrating Black History Month
In honor of Black History month, ACS CAN is featuring social media and online content that highlights the importance of health equity and access to cancer care, raising awareness about cancer disparities in the Black community, and spotlighting the work of our Black Volunteer Caucus. We will also honor advancements made by Black leaders for equitable access to cancer care. Help us amplify and join us in celebrating Black history and culture this month and every month. Start by following us on ACS CAN on Twitter, Facebook, LinkedIn, Instagram, and Threads.
In Case You Missed It
ACS CAN hosted a well-attended reception to honor NIH Director Dr. Monica Bertagnolli. Partnering with Research!America and several other partner organizations that support critical funding for the NIH, we welcomed over 350 people, including 34 NIH Institute and Center Directors and 12 Members of Congress. Speakers included Sen. Shelley Moore Capito (R-WV), Sen. Bill Cassidy (R-LA), Sen. Chris VanHollen (D-MD), Rep. Rosa DeLauro (D-CT), Rep. Steny Hoyer (D-MD) and Rep. Greg Murphy (R-NC). We proudly honored Dr. Bertagnolli’s 30 years of impact as a world-renowned cancer surgeon and researcher, a fierce advocate for addressing healthcare disparities, former NCI director, and a staunch supporter of our work at ACS CAN.
ACS CAN team members and volunteers gathered on Capitol Hill to deliver 700+ postcards written by ACS CAN volunteers urging their Senators to co-sponsor the PSA Screening for HIM Act. See our team in action on social media.
ACS CAN advocates joined the African American Tobacco Control Leadership Council at their Menthol Funeral in Washington, D.C. to honor the 45,000 Black lives lost to tobacco annually. Tobacco use is one of the primary causes of cancer-related health disparities. Along with our partners, we urged the White House to finalize the FDA rules to end the sale of menthol-flavored tobacco products.
After six months of relentless pressure from our team and volunteers, New York Governor Kathy Hochul signed our biomarker bill in late December. The new law will require all state-regulated health plans, including Medicaid, to cover comprehensive biomarker testing. ACS CAN was proud to see New York join thirteen other states that have enacted similar legislation, ensuring more New Yorkers have improved access to the most effective treatments for their cancer.
White House Cervical Cancer Forum: On January 25, I joined Dr. Debbie Saslow, Strategic Director, Screening & Vaccination at ACS and other champions for cancer patients and their loved ones at the White House Cervical Cancer Forum. Marking Cervical Cancer Awareness Month, the forum highlighted survivor voices along with calls to action from leaders in public health and patient advocacy to further Biden’s Cancer Moonshot. Dr. Saslow shared ACS and ACS CAN’s perspectives alongside advocates leading the way in cancer care on a panel that discussed opportunities to end cervical cancer as we know it.
National Minority Quality Forum Cancer Care Equity Summit
I was honored to be part of the kick-off plenary session at the National Minority Quality Forum’s Cancer Care Equity Summit with colleagues from the Prevent Cancer Foundation, Merck and the CEO Roundtable on Cancer. I had the opportunity to highlight the priorities of ACS CAN’s public policy agenda which focuses on reducing disparities in cancer incidence, mortality and care. Watch the replay here.
ACS CAN released a chartbook illustrating the important role Medicare plays in reducing suffering and death from cancer. The Medicare program serves patients across the cancer continuum. In fact, an estimated 1 million of those newly diagnosed with cancer in 2024 will rely on the Medicare program as their primary source of health care coverage. Given an individual’s cancer risk increases with age, Medicare plays a key role in reducing suffering and death from cancer.
Collaboration for Equitable Health Partner Training
As part of the Collaboration for Equitable Health, an initiative which brings together the efforts of ACS, ACS CAN, American Diabetes Association, and American Heart Association, supported by Bank of America, our community partners and team members from Atlanta, Charlotte, Chicago, Memphis, and St. Louis convened in Charlotte, NC for campaign training and planning sessions. Participants from each city honed their campaign plans to pass health equity policies that will address food insecurity, walkable communities, and access to insurance through Medicaid. There was tremendous energy during the convening and all participants committed to moving this important work forward in their communities with the goal of making policy changes in 2024 and 2025 For more information on the Collaboration for Equitable Health visit collaborationforequitablehealth.org.
State Updates
West Virginia Biomarker Testing Legislation
Delegate Steve Westfall recently introduced legislation that would increase access to biomarker testing for West Virginians. This legislation would remove barriers to biomarker testing in West Virginia, including lack of coverage by health insurance and Medicaid programs.
ACS CAN condemned the Ohio state legislature for overriding Governor DeWine’s important veto of a pre-emption bill, which will result in rolling back existing local laws regulating the sale of tobacco products and limiting what local governments can do to prevent people from starting to use tobacco and to help people quit. ACS CAN thanked Gov. DeWine for standing up for the health of Ohioans and expressed strong disappointment at this decision by state lawmakers, including successfully elevating the negative impact of this override through extensive media coverage.
Smoke-Free Casino Legislation In New Jersey
The New Jersey Senate Health, Human Services and Senior Citizens Committee hosted a hearing on Monday, January 29 to consider Senate Bill 1493, which aims to make Atlantic City casinos smoke-free. Casino workers should not have to choose between their health and receiving a paycheck. A recent poll revealed that Philadelphia-area adults living in both Pennsylvania and New Jersey are much more likely to visit Atlantic City casinos if they are 100% smoke-free.
Maine Voters Support Improving Health Outcomes
On Tuesday, January 30, Maine’s Joint Standing Committee on Health Coverage, Insurance and Financial Services considered LD 1577, which aims to expand coverage for biomarker testing to Mainers insured through state-regulated health plans, including Medicaid.
Federal Updates
HPV Cancers Awareness Week
In partnership with the HPV Coalition, ACS CAN’s Federal Team participated in the Congressional Briefing: Preventing HPV-Related Cancers through Vaccination and Screening. The briefing showcased how the HPV vaccine, screening, and early treatment are powerful tools to help end several cancers and highlighted actions that can be taken by Congress to achieve increase uptake of these modalities throughout the nation. Featured speakers included Rep. Kathy Castor (D-FL), Rep. Julia Letlow (R-LA) and Rep. Kim Schrier, MD (D-WA).
World Cancer Day
In celebration of World Cancer Day, the ACS CAN Federal Team and The Alliance for Cancer Care Equity (ACCE) worked with Rep. Terri Sewell (D-AL) to introduce a resolution in support of efforts to reduce inequities in cancer care. Reps. Robin Kelly (D-IL), Bonnie Watson Coleman (D-NJ), and Raul Grijalva (D-AZ) are cosponsors of the World Cancer Day Resolution. In partnership with ACCE we hosted a social media "take action" event, raising awareness for the Increasing Access to Lung Cancer Screening Act (H.R. 4286); The PSA for HIM Act (H.R. 1826/ S 2821); and The Comprehensive Cancer Survivorship Act (H.R. 4363/S 2213).
Proposed Safe Harbor from Anti-Kickback Statute
In response to an annual request from the Department of Health and Human Services (DHHS), ACS CAN, along with twenty partner organizations, proposed a safe harbor from the Anti-Kickback Statute that would allow clinical trial sponsors to provide financial support to trial participants to offset non-medical costs. Ensuring diversity in clinical trials is critical, and this safe harbor will help ensure that the makeup of participants in clinical trials is representative of the makeup of the U.S. population.
At The US Supreme Court
In an amicus brief filed in late January, ACS CAN and 24 public health and provider groups urged the justices to uphold the FDA’s scientific judgment in a case challenging the agency’s approval of the drug mifepristone. Our brief in Alliance for Hippocratic Medicine v FDA provided the high court with background on the importance of deferring to medical experts tasked with approving pharmaceuticals, as well as patients’ critical reliance on these treatments.
ACS CAN also renewed its call to the U.S. Supreme Court to uphold a long-standing precedent that directs courts to defer to federal agencies in their interpretation of statutes if those statutes are ambiguous in a statement issued before oral arguments. Although the arguments did not go well for the government, the statement and amicus brief filed in the case of Loper Bright v. Raimondo garnered extensive national media coverage for outlining how overturning the precedent could negatively impact implementation of Medicare and Medicaid laws.
Patient Protections of No Surprises Act Upheld by 2nd Circuit
ACS CAN applauded the US Court of Appeals for 2nd Circuit for its ruling in the case of Haller v. Health and Human Services (HHS), which preserved the patient protection provisions of the No Surprises Act (NSA). The NSA prohibits patients from receiving surprise bills for unexpected out-of-network costs.
In August, ACS CAN filed an amicus brief in the case, highlighting that nearly a quarter of cancer patients and survivors report having received a surprise medical bill prior to the passage of the NSA, leading to worse health outcomes and higher mortality rates. For the more than 1.9 million people in the U.S. expected to be diagnosed with cancer this year, preserving patient protections under the NSA is critical and gives more people a fighting chance at survival.
Advocacy in the News
People: 2 Million People Will Be Diagnosed with Cancer This Year — the Most Ever — Due to Rising Cancer Rates in Those Under 50
Washington Post: White House weighs menthol ban amid dueling health, political pressures
US News & World Report: How Many Deaths Will It Take Before America Ends the Sale of Menthol Cigarettes?
AP News: Ohio Legislature Puts Tobacco Control In The State's Hands After Governor's Veto
El Diario (Spanish): Ecuadorian cancer patient celebrates that more people in New York will be able to undergo the tests that helped save her life
Mississippi Today: Coalition of 36 organizations pushes lawmakers for Medicaid expansion in Mississippi
Argus Leader: Graciano Sarinana: Focus on Medicaid's expansion, not adding barriers
KTNV Las Vegas: Clark County lights iconic sign for cervical cancer awareness
ABC Columbia: “We could save lives” — American Cancer Society in SC calls for additional funding, Medicaid expansion
