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New paper finds barriers to pharmacogenomic testing in cancer care are impacting its adoption and creating disparities that impact diverse populations

A new paper released today in the Journal of Clinical Oncology 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.

A component of precision medicine, PGx testing examines how variations in a patient’s inherited genes may impact how they respond to drugs. PGx testing can lead to better clinical outcomes for people with cancer by improving the effectiveness of treatment or by reducing the risk of adverse drug reactions that can cause a patient to stop treatment, or in some cases, can result in death. Yet, the paper’s authors note that adoption of PGx testing into oncology care remains scarce, with devastating impact. Approximately 60% of patients with advanced cancer have been reported to be taking medications with known PGx interactions, and approximately 1,300 people die each year from the administration of a common chemotherapy drug for which a PGx test is available.

“Incorporating PGx testing into oncology is critical to making sure that people with cancer receive the right treatment at the right dosage based on their individual genetic makeup,” said Sharon P. Shriver, PhD, Project Manager, Science Policy, for the American Cancer Society Cancer Action Network (ACS CAN) and lead author. “Unfortunately, the lack of PGx testing necessary to safely adjust the dosing of oncology drugs has resulted in lives lost.”

The paper’s authors examined how current scientific understanding of the role of PGx in cancer care may be biased toward a greater understanding and more complete implementation of PGx for individuals of European descent compared to other genetic ancestry groups. This bias results from the fact that clinical trial participants and large genomic databases generally do not reflect the racial and ethnic diversity of the U.S. population or of cancer patients. This bias further has implications for several identified barriers preventing adoption of PGx testing in cancer care and ensuring all populations can benefit from it, including ambiguity and inconsistency in drug labeling; lack of infrastructure such as clinical decision support systems; insufficient provider and patient education; and inadequate insurance coverage of PGx testing and follow-up.

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 which included researchers, policymakers, industry representatives, and patient advocates.

“No one should be disadvantaged in their cancer journey,” said Mark E. Fleury, PhD, Principal, Policy Development - Emerging Science for ACS CAN and paper co-author. “When genetic ancestry is not considered or mischaracterized in PGx discovery and application, it can contribute to disparities in outcomes across racial and ethnic categories. The recommendations offered will help address barriers to facilitate equitable PGx discovery and application in cancer care so that all populations can benefit from them.”

ACS CAN is working to improve access to PGx testing through its state advocacy work to expand insurance coverage of comprehensive biomarker testing, which includes PGx testing. Biomarker testing is a critical step toward accessing precision medicine, including targeted therapies; however, not all patients who could benefit have access to the testing that can identify the best treatment for their condition. To date, 14 states have passed biomarker coverage legislation, which will help reduce disparities in access.

Sharon P. Shriver, PhD, ACS CAN, is the lead author of the paper. Other authors include Devon Adams RN, M.P.H., ACS CAN; Brittany Avin McKelvey, PhD, Friends of Cancer Research; Jeannine S. McCune, PharmD, PhD, City of Hope/Beckman Research Institute; Dale Miles, PhD, Genentech; Victoria M. Pratt, PhD, FACMG Agena Bioscience; Kristine Ashcraft, M.B.A., YouScript; Howard L. McLeod, PharmD, Utah Tech University; Hannah Williams, M.P.H., Color; and Mark E. Fleury, PhD, ACS CAN.

  • New survey highlights burden of medical debt, food insecurity

    Latest ACS CAN Survivor Views data finds affordability leading policy priority for cancer patients and survivors.

    On Feb. 14, the American Cancer Society Cancer Action Network (ACS CAN) released its latest Survivor Views survey. The survey, which asked participants to select their leading policy priorities for the year, shows that protecting free preventive cancer screenings and reducing the burden of medical debt are the top issues of concern for cancer patients and survivors.

    Policies to address the high costs of cancer have grown in support among those impacted by cancer, reflecting the urgency to address this issue in the U.S. In this most recent Survivor Views survey, 52% of respondents named protecting no-cost preventive care as one of their top three policy priorities, compared to 37% in 2020, while the importance of addressing medical debt increased from 33% in 2020 to 51% today.

    “The system is failing families touched by cancer as affordability continues to be one of the leading barriers to cancer care and causes of medical debt,” said Lisa Lacasse, president of ACS CAN. “With the ever-growing costs of medical care, it’s no surprise to see the individuals in active cancer treatment or with a recent cancer diagnosis elect free coverage of cancer preventive services and reduced medical debt as the leading health care issues facing them today. We need to prioritize policies that make health care affordable for everyone and make medical debt less prevalent to ensure everyone has a fighting chance against cancer.”

    The recent high costs of cancer care also is resulting in food insecurity for patients, particularly for individuals with lower incomes and Black and Hispanic patients. The survey found that more than 40% of cancer patients and survivors reported that the cost of their cancer care has impacted their ability to afford purchasing food and has them worried about running out of food. Approximately 40% of cancer patients and survivors reported accumulating debt to buy food while paying for their cancer care.

    The survey data was collected between Jan. 3 – 22, 2024. A total of 1,542 cancer patients and survivors who were treated or diagnosed within the past seven years responded to the questionnaire. Differences reported between groups are tested for statistical significance at a 95% confidence interval.

    Addressing medical debt in the U.S. is critical to reducing the cancer burden for everyone. ACS CAN has long supported public policies that help improve access to quality, affordable health insurance coverage that reduce the likelihood or severity of medical debt. Through its partnership with the Alliance to End Hunger coalition, ACS CAN continues to support policies that advance health equity by addressing food and nutrition insecurity for individuals, families, and communities. Learn more at fightcancer.org.

    Through ACS CAN’s Survivor Views initiative, ACS CAN receives direct feedback from cancer patients and survivors about their experiences and their perspectives on critical cancer-related issues. This information helps shape the development of policy positions and provides important evidence to support the enactment of these policies.

    For more information on Survivor Views, visit ACS CAN’s website at www.fightcancer.org/survivor-views.

    Like and share posts on X (formerly Twitter) from CEO Dr. Karen Knudsen and ACS CAN President Lisa Lacasse.



  • January Advocacy Update

    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 

    People2 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



  • Marking two years of the Moonshot Reignition

    ACS CAN calls on White House and Congress to prioritize tobacco control and cancer research.​

    On the two-year anniversary of the reignited Cancer Moonshot, the American Cancer Society Cancer Action Network (ACS CAN) is calling on the White House and Congress to reinforce their commitment to end cancer as we know it by taking key steps to prioritize cancer prevention and research. The administration has an opportunity to significantly reduce cancer diagnoses and deaths by finalizing proposed rules to end the sale of menthol cigarettes and all flavors in all cigars. Meanwhile, as Congress continues to debate Fiscal Year 2024 appropriations, it's imperative that lawmakers sustain and increase critical research and prevention funding in the fight against cancer.

    “ACS CAN is well aligned with the Moonshot's mission and remains steadfast in our commitment to improve the lives of people with cancer and their families,” said Dr. Karen E. Knudsen, CEO of ACS CAN. “The second anniversary of the Moonshot’s reignition is the perfect opportunity for the White House and Congress to take meaningful action to launch us closer to our shared goal.”

    Addressing tobacco use is a key strategy outlined in President Biden’s Cancer Moonshot plan, and the White House has an opportunity to make a significant impact on tobacco use by ending the sale of menthol in cigarettes and all flavors in all cigars. Tobacco is the number one cause of cancer deaths nationwide, and flavors like menthol have been proven to make it easier to start and harder to quit using these deadly products. The Food and Drug Administration has stated that a comprehensive end to the sale of menthol cigarettes is projected to result in 324,000 to 654,000 fewer smoking-related deaths.

    “There is no scientific rationale for permitting any flavored tobacco product to remain on the market,” said Knudsen. “Given 30% of all cancer deaths are due to smoking, if we want to reach the Moonshot goals, we must meaningfully address tobacco and we cannot do that without ending the sale of menthol cigarettes and all flavored cigars. ACS CAN stands ready to work with the administration to support implementation of the FDA’s rules and urges President Biden to act without further delay.”

    The need to prioritize efforts to prevent more cancers before they start and identify more lifesaving therapies extends to Congress. As lawmakers look to finalize FY2024 funding levels, a significant investment in the Centers for Disease Control and Prevention’s proven cancer screening programs and cancer research at the National Institutes of Health and National Cancer Institute must be made in order to continue to lower cancer mortality rates.

    “Sustained and increased funding for cancer discovery and prevention has been key to saving more lives from cancer year over year and is as critical now as ever,” said Lisa Lacasse, president of ACS CAN. “For the first time, this year more than 2 million people will hear the words ‘you have cancer.’ Congress needs to meet this pivotal moment and ensure lifesaving treatments and advancements continue for those diagnosed with this disease by building on our nation’s fiscal commitment to the fight against cancer.”

    ACS CAN will continue to work with the administration and Congress to end cancer as we know it, for everyone.


  • New ACS CAN report shows Medicare's role in saving lives from cancer 

    Report offers policy recommendations to strengthen Medicare Program.​​

    On Jan. 29, the American Cancer Society Cancer Action Network (ACS CAN) released a new report. Cancer in Medicare: An American Cancer Society Cancer Action Network Chartbook. It illustrates how the Medicare program serves patients across the cancer continuum as well as specific public policy recommendations to improve and strengthen the program.

    Because individual’s cancer risk increases with age, Medicare plays a key role in reducing suffering and death from cancer. ACS CAN’s Medicare Chartbook provides an overview of the Medicare program and its benefits, including how cancer impacts the program, the financial impact on program spending, the role of Congress in creating meaningful coverage changes for Medicare beneficiaries on cancer screening and the out-of-pocket costs for beneficiaries. The report also includes policy recommendations on how to improve the Medicare program for beneficiaries who have a history of cancer, are in active cancer treatment or who could potentially develop cancer.  

    In 2023, an estimated 1.7 million individuals living in the U.S. are projected to be diagnosed with cancer, 1 million of whom rely on the Medicare program as their primary source of health care coverage.  

    As Medicare currently only covers early detection tests for breast, cervical, colorectal, lung, and prostate cancers, ACS CAN continues to advocate for a clearer pathway toward evidence-based processes for early detection and cancer screenings through FDA approval of the Multi-Cancer Early Detection Screening Coverage Act and affordable access to patient navigation services to help end cancer as we know it, for everyone.



  • ACS CAN asks court to preserve protections in Affordable Care Act

    ​​Public health groups urge Fifth Circuit Court of Appeals to prevent discrimination against LGBTQ+ patients.​​

    The American Cancer Society Cancer Action Network (ACS CAN) and other public health groups are urging the U.S. Court of Appeals for the Fifth Circuit to preserve protections in the Affordable Care Act (ACA) for Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) patients receiving health care services when it hears oral arguments today in the case of Neese v. Becerra.

    The case is being appealed after a lower court ruled that section 1557 of the ACA does not prevent discrimination based on sexual orientation and gender identity, but rather only protects individuals based on the sex they were assigned to at birth. If upheld, the far-reaching ruling would severely limit the rights of LGBTQ+ individuals in the delivery of health care services. 

    The groups, which represent millions of people across the United States with serious and chronic health conditions and disabilities, filed an amicus brief in April 2023. In the brief, they argued that LGBTQ+ patients already face significant health disparities, and if the lower court ruling is allowed to stand, it would reduce protections for LGBTQ+ individuals against discrimination, which would worsen these disparities and lead to poorer health outcomes.

    Following is the groups’ joint statement:

    “It is vital that the anti-discrimination protections Congress adopted in the ACA remain in place. We strongly urge the Fifth Circuit to reject the U.S. District Court’s ruling, which would roll back anti-discrimination protections for LGBTQ+ people and hinder their ability to access health care quickly and without fear of discrimination. Timely medical care is critical for everyone. Discrimination based on sex, gender identity or sexual orientation has no place in America’s health care system. Such discrimination can be harmful to people with chronic conditions and disabilities, who must frequently rely on health care providers for access to lifesaving treatments.

    “LGBTQ+ people bear a disproportionate burden of some chronic illnesses, like cancer, HIV, and heart disease. Eliminating discriminatory barriers to care is critical to achieving better health outcomes for the millions of patients our organizations represent, including LGBTQ+ patients with chronic illnesses and disabilities. When LGBTQ+ people encounter discrimination or mistreatment from health care providers, they can become isolated from the health care system and hesitant to seek health care. LGBTQ+ patients in several surveys have reported avoiding or delaying care because of fears and concerns about discrimination, including a June 2023 survey of LGBTQ+ cancer patients and survivors.  If the lower court ruling is upheld, an already challenging situation will become worse.

    “As oral arguments are heard today, we urge the court to keep patients front and center by preserving these protections as intended by the law.”

    The groups include the American Cancer Society, American Cancer Society Cancer Action Network, Cancer Support Community, CancerCare, Crohn’s & Colitis Foundation, Cystic Fibrosis Foundation, Epilepsy Foundation, Hemophilia Federation of America, Judge David L. Bazelon Center for Mental Health Law , National LGBT Cancer Network, National Multiple Sclerosis Society, National Patient Advocate Foundation, National Organization for Rare Disorders, The AIDS Institute, The Leukemia & Lymphoma Society, The Susan G. Komen Breast Cancer Foundation, Inc., and WomenHeart: The National Coalition for Women with Heart Disease.  



  • ACS CAN urges White House to end sale of menthol cigarettes, flavored cigars

    National groups say finalizing rules is key to achieving Cancer Moonshot goals.​

    On Dec.13, the American Cancer Society Cancer Action Network joined 21 groups representing millions of cancer patients, survivors and caregivers, to send a letter to the White House supporting the U.S. Food and Drug Administration proposed rules to eliminate the sale of menthol in cigarettes and all flavors in cigars.

    The letter reads, in part, “Saving lives from cancer will take thoughtful public policy and programmatic efforts that leave no one behind. Our community combating cancer works to provide patient services, advance research, and advocate for evidence-based public policies designed to reduce pain and suffering due to cancer and reduce health care disparities. The elimination of menthol as a characterizing flavor in cigarettes is one of the most important public policy actions this administration can take to save lives from cancer and is fully supported by scientific evidence.”

    The following is a list of groups that signed the letter: American Cancer Society Cancer Action Network, American Association for Cancer Research, American Lung Association, Association for Clinical Oncology, Association of American Cancer Institutes, Bladder Cancer Advocacy Network, Dana-Farber Cancer Institute, Free ME from Lung Cancer, GO2 for Lung Cancer, Hope for Stomach Cancer, LiveLung, Lung Cancer Research Foundation, LUNGevity Foundation, Moffitt Cancer Center, National Comprehensive Cancer Network, National LGBT Cancer Network, Oncology Nursing Society, Pennsylvania Prostate Cancer Coalition, Prevent Cancer Foundation, Roswell Park Comprehensive Cancer Center, Streak For A Cure, Inc., Upstage Lung Cancer.

    ​​

  • December Advocacy Update

    Pres. Lacasse celebrates our 2023 wins and preparing for our wins to come.​

    A message from ACS CAN President Lisa Lacasse

    Tom Peters, the American writer once said, “celebrate what you want to see more of.” As we close out the year, we are doing just that. We’ve seen many victories in 2023 and made much headway towards wins critical to reducing the cancer burden in the future. 

    We’ve kept up a consistent drumbeat since January, reminding lawmakers of the critical importance of research conducted at the National Institutes of Health (NIH) and the National Cancer Institute (NCI) for cancer patients and their families. Now in Q4, we have not let up. We know that there will not be a final Fiscal Year 2024 spending bill before year-end, which means sustaining our momentum into 2024 to secure the highest possible funding increases for the NIH and NCI to continue making the promise of cancer research a reality. 

    Through our ads targeted to DC and in key districts this month, we will be as visible as possible to urge Congress to act as soon as they return. We are also activating our volunteers with a steady stream of actions directed at Congress and their staff. To support our effortswe invite you to call your U.S. House Representative or U.S. Senator to ask them to support the highest possible increases for cancer research and prevention programs in the FY24 spending bill.

    We are also steadily working to advance H.R. 2407/S. 2085, the Medicare Multi-Cancer Early Detection (MCED) Screening Coverage Act and H.R. 1826/S. 2821, the Prostate-Specific Antigen Screening for High-risk Insured Men Act (PSA Screening for HIM Act) and will continue our work into January. Tonight, the ACS CAN Black Volunteer Caucus is hosting a virtual postcard party to elevate the PSA Screening for HIM Act, so advocates can urge their Senators to support the bill. Please join us!

    In states, we remain proud of our all our biomarker wins this year, having made much progress to ensure everyone has access to this game-changing precision medicine. We celebrated as California Governor Gavin Newsom signed our biomarkers bill ensuring that more health insurance plans, including Medi-Cal, cover comprehensive biomarker testing. After a disappointing veto last year, California joined twelve other states that have enacted similar legislation.

    The start of December was monumental for North Carolina and for ACS CAN. On the first, Medicaid expansion took effect, giving close to 600,000 North Carolinians access to affordable health insurance through Medicaid. We were thrilled to see this decade-long fight culminate in this exciting achievement meaning access to care for so many. We will continue our work in 2024 to advocate for Medicaid expansion in the 10 states that have not yet done so. Please read and share my op-ed published last week in the NC Newsline.

    I hope you can join me in celebrating our 2023 wins and preparing for our wins to come. Thank you for your ongoing leadership in our work to end cancer as we know it through public policy advocacy, for everyone. I hope you all enjoy a wonderful holiday season!


    Breaking News

    Today, nearly two years after the U.S. Food and Drug Administration (FDA) released its proposed rules to eliminate menthol in cigarettes and all flavors in cigars, news reports are indicating the possible delay in the administration finalizing the rules. 

    We are disappointed to hear of this possibility. ACS CAN will continue to urge the White House to finalize rules ending the sale of menthol in cigarettes and flavors in cigars by the end of the year. The administration has an opportunity to leave a significant, lasting public health legacy, save lives and reach the Cancer Moonshot goals by finalizing these rules as written. We have also proudly joined 79 other public health organizations to show our support through paid advertisements in DC.

    Please be on the lookout for a full statement on our website from Dr. Knudsen today if the White House confirms this delay.


    In Case You Missed It

    We recently joined ACS CAN Idaho State Lead Ambassador and PhD candidate Cody Wolf to tour a cancer research lab and to see cancer research funding in action!

    Catch the replay!


    New NCI Director Appointed Following Dr. Monica Bertagnolli’s NIH Director Confirmation

    ACS CAN applauded Dr. Kimryn Rathmell’s appointment as the National Cancer Institute (NCI)’s new director, a role critical to ensuring ongoing innovation in oncology.  Dr. Rathmell is the Hugh Jackson Morgan Professor and Chair of Medicine at Vanderbilt University Medical Center (VUMC), and Physician-in-Chief for Vanderbilt University Adult Hospital and Clinics. A physician-scientist, Rathmell’s work focuses on the treatment and research of complex renal cell carcinomas. Her research has resulted in over 20 years of funding from the National Institutes of Health, and more than 200 articles in leading peer-reviewed journals. Read our full statement.


    Blue-button Clinical Trial Matching Update

    Earlier this year, we shared details on our exciting new initiative, Blue-Button Clinical Trials. Clinical trials provide cancer patients the opportunity to participate in research and development of new drugs and treatment approaches. Enrollment in cancer clinical trials hinges on patients successfully identifying trials for which they are a match based on their clinical characteristics. ACS CAN launched development and testing of a new tool, called “Blue-button” that can automatically identify relevant clinical trials through one-button clinical trial matching integration within electronic health records (EHRs).

    The first patient was successfully seen in the Blue-button study last week. All worked as expected and we will now expand at the University of Texas Southwestern Medical Center to include more clinicians. The second patient site as we expand is Tampa General Hospital. Read more about Blue-button.


    State Legislator Conferences Engagement

    ACS CAN recently sponsored the National Black Caucus of State Legislators (NBCSL) 47th Annual Legislative Conference in Nashville. NBCSL represents and serves the interests of African American State legislators. ACS CAN also sponsored the National Hispanic Caucus of State Legislators (NHCSL) 21st Annual Summit in Philadelphia. NHCSL is serves and represents the interests of Hispanic state legislators.

    ACS CAN will also present to state legislators at the Council of State Governments National Conference, December 7, to engage them in our biomarker campaign work.


    State Updates

    ACS CAN is working to ensure North Carolinians have access to enrollment information for North Carolina’s Medicaid expansion. You can amplify this information by sharing this link.

    In New York our efforts to get Governor Hochul to sign our biomarkers bill into law have continued to ramp up. ACS CAN launched a four-week ad campaign in 20 news outlets in support of the campaign to enact biomarker legislation. The four ads feature different coalition partners and ask people to call the governor. Follow ACS CAN NY on X for campaign updates.


    Federal Updates

    Yesterday, the 5th Circuit heard oral arguments in the tobacco industry challenge to the FDA rule requiring graphic warnings on cigarette packages and ads. We are in full support of the courts overturning the lower courts ruling on this and siding with the FDA. We strongly defend graphic warnings on cigarette packs and ads—to save more lives, the public must know the truth about the negative health effects of smoking. See our social post supporting theses graphic warnings.

    A Centers for Medicare and Medicaid Services (CMS) investigative study will examine the benefit of multi-cancer early detection tests for Medicare beneficiaries. Grail, LLC announced this morning that CMS and the Food and Drug Administration (FDA) approved an Investigational Device Exemption (IDE) study for the company’s Galleri multi-cancer early detection (MCED) test to evaluate the technology’s capacity to reduce late-stage cancer diagnoses for the large group of cancers without a traditional screening strategy. The study is expected to enroll up to 50,000 Medicare beneficiaries, including diverse and rural seniors to ensure robust Medicare data in populations traditionally underrepresented in studies. The IDE Study will also include a control arm. Read our full release.


    Advocacy in the News - Highlights

    • VoxPatients don’t know how to navigate the US health system — and it’s costing them 
    • Fierce HealthcareCMS wants feedback on how Medicare drug negotiations should evolve. Researchers, advocates, drugmakers all have notes 
    • The HillWhite House taps Vanderbilt oncologist to lead National Cancer Institute 
    • Buffalo News The Editorial Board: Here's medical and environmental legislation that Gov. Hochul should sign 
    • Guam Daily PostLocal doctor asks Congress to make cancer a national priority 
    • El CentralMichigan Must Stand Up to Big Tobacco 
    • MundoNowMan Survives Lung Cancer (Spanish) 
    • Univision WLIIBrave Puerto Ricans fight tooth and nail for the rights of cancer patients (Spanish) 
    • Spectrum News North CarolinaMedicaid expansion goes into effect December 1 

  • November Advocacy Update

    We celebrate long fought for victories and continued long-term strategy to advance our priorities.

    A message from ACS CAN President Lisa Lacasse

    At ACS CAN, we know it often takes many years of advocacy and substantial effort from our team and volunteers to move critical legislation forward on behalf of cancer patients, survivors and their families. This past month, we’ve celebrated long fought for victories and continued long-term strategy to advance our federal and state priorities. We’ve also underscored our reputation as the nation’s leading cancer advocacy organization.

    In late October, we celebrated an encouraging state win in Michigan after leveraging our grassroots, grasstops and media advocacy power. After 15 years of tremendous work, oral chemo fairness legislation was passed and signed by Governor Gretchen Whitmer. This legislation can give chronically ill patients more affordable access to the cancer treatment they need and ensure that patient out-of-pocket costs for oral and intravenous (IV) chemotherapy are similar. Michigan now joins 43 other states that have passed similar legislation.

    Yesterday we applauded the Senate’s confirmation of Dr. Monica Bertagnolli as the new director of the National Institutes of Health (NIH). ACS CAN has advocated for her confirmation since her nomination by President Biden in May and we are thrilled to partner with this long-time advocate and ally in our work to end cancer as we know it.

    Last week, the Centers for Medicare and Medicaid Services (CMS) released their final rule for the 2024 Medicare Physician Fee Schedule, finalizing a new reimbursement code for patient navigation services focused on patients with serious illnesses like cancer. This is a critical milestone for us, and we will be working hard to elevate and accelerate building sustainable patient navigation services across the entire cancer continuum.

    Federally, although there has been leadership change in the House of Representatives, our priorities and strategic approaches are steadfast, urging Congress to prioritize cancer in the FY24 budget. We are activating our volunteers with a steady stream of actions to remind lawmakers about the need for increased funding for the National Cancer Institute (NCI) and National Institutes of Health (NIH). We are also steadily working to advance the Medicare Multi-Cancer Early Detection (MCED) Screening Coverage Act and the Prostate-Specific Antigen Screening for High-risk Insured Men Act (PSA Screening for HIM Act). We are proud that through our advocacy, both bills have gained bipartisan cosponsors this month and MCED has gained the active support of a bipartisan majority of members in both the House and Senate.


    Join us for a virtual cancer research lab tour and Q&A tomorrow, Thursday, November 9, 2023 7:30 PM - 8:00 PM ET. In this virtual event, step inside a cancer research lab and learn about what happens with cancer research funding and what's at stake when Congress negotiates a budget. Leading the tour will be Cody Wolf, a PhD candidate at Boise State University and ACS CAN State Lead Ambassador in Idaho. For those that can't make the live stream, it will be recorded and available to watch across our national social channels.


    In Case You Missed It

    Check out ACS CAN’s first influencer videos. As part of our diverse volunteer recruitment campaign, we’re working with key influencers in the cancer and health equity space on social media to engage a diverse group of prospective volunteers to join ACS CAN. The influencers filmed videos encouraging audiences to share their reason for being a cancer advocate, and the videos will run in social ads across Facebook, Instagram, Snapchat, and TikTok. Two of the videos were also used in joint posts on ACS CAN’s Instagram, the first featuring Joel Bervell, a medical student whose health equity videos have informed millions on Instagram and TikTok; and the second featuring Dr. Jen Caudle, a board-certified physician who has reached millions across the country with her medical expertise via both social media and television. So far, the organic videos have gained 27K engagements and plays, and the video ads are launching this week. Watch and share Joel’s video here and Dr. Caudle’s video here.


    On Monday ACS CAN participated in a Centers for Medicare & Medicaid Services (CMS) Listening Session as part of the Medicare Drug Price Negotiation Program. The virtual public Listening Sessions provide an opportunity for patients, beneficiaries, caregivers, consumer and patient organizations, and other interested parties to share input relevant to drugs selected for the first round of negotiations. I gave remarks during the session on Imbruvica, medication used to treat certain types of leukemia and lymphoma and the only oncology drug on the list. See the remaining sessions here.


    Pam Traxel, ACS CAN Senior Vice President, Alliance Development and Philanthropy and I represented ACS CAN and the American Cancer Society to join our strategic partner Exact Sciences at the Nasdaq Closing Bell last Friday in Times Square in NYC. See my post on X.


    ACS CAN hosted another successful Priorities and Partners meeting in October. This annual meeting is geared toward state government relations staff to learn more about state legislative policy trends and issues to help them prepare for the 2024 legislative sessions. This event is also an opportunity to network with partners to share our policy priorities with each other to inform ACS CAN’s policy agenda for 2024.


    ACS and ACS CAN played a prominent role in Rep. Debbie Wasserman Schultz’s Cancer Survivorship Summit in October. Speakers included First Lady Jill Biden, US Secretary of Veterans Affairs Denis McDonough, Ambassador Nancy Brinker and Special Guest Martina Navratilova. Jelani Murrain, ACS CAN Director, Federal Relations, served as moderator for a discussion highlighting social determinants of health and their impact on survivors. Dr. Arif Kamal, ACS Chief Patient Officer, served as a panelist in a discussion highlighting patient navigators and caregivers. Dr. Farhad Islami, ACS Senior Scientific Director, Cancer Disparity Research, served as a panelist in a discussion highlighting social determinants of health and their impact on survivors.


    ACS CAN Board Members in the News

    Karen Winkfield, MD, PhD, has been named to the 2023 Class of ASTRO Fellows. Twenty-nine distinguished members of the American Society for Radiation Oncology (ASTRO) this year were named Fellows of ASTRO. The ASTRO Fellow designation, FASTRO, honors individuals who have contributed significantly to the Society through committee work, other volunteer service and to the field of radiation oncology in the areas of research, education, patient care or leadership. Active, International and Emeritus members are nominated for fellowship by current ASTRO Fellows and supported by leaders in the field. Congratulations Dr. Winkfield!

    Read this op-ed by ACS CAN Board member David Ford: Cancer Survivor Presses for Funding, Early Detection to Reduce Disparities in Black Communities."As a prostate cancer survivor and member of the American Cancer Society Cancer Action Network’s (ACS CAN) Board of Directors, I believe that everyone should have a fair and just opportunity to prevent, detect, treat, and survive cancer. I know that having equitable access to screening is critical to reducing prostate cancer deaths and saving more lives, especially in the Black community.” A big thank you to Dave Ford for raising your important voice in this fight.


    New Medical Debt Survey

    Last week ACS CAN, in partnership with the Leukemia & Lymphoma Society, and RIP Medical Debt, released a new and telling national poll conducted by PerryUndem Research to create a national picture of experiences and attitudes on medical debt. We know that over a hundred million Americans (1 in 3) struggle with the weight of medical debt. Nearly half of U.S. adults delay or skip medical care due to high costs. Those with chronic health conditions like cancer are even more vulnerable to medical debt and the hardships of expensive medical care, treatments, and medication. Results from the poll indicated more than 6 in 10 U.S. adults say they would be unable to afford the cost of cancer if they were diagnosed tomorrow. 

    The poll further found that with overwhelming bipartisan support, 90% of U.S. adults agree that elected officials should pass policies that protect people with serious illnesses like cancer from medical debt and harassment from collection agencies.


    Survivor Views: Drug Shortages

    As you know, the current drug shortage has become a serious and life-threatening issue for cancer patients across the country. According to ACS CAN’s latest Survivor Views survey, one in every 10 patients in active treatment cites impacts of the shortage on their care to address shortages in the short and long term:

    • Providing FDA with needed funding and authorities to understand and address shortages in the short term.
    • Examining federal payment policies that may prevent the possibility of price increases on extremely low-cost injectables that are in shortage (E.g. Medicaid inflationary rebate).
    • Creating market incentives that promote high quality manufacturing and increased supply buffers for critical oncology drugs.

    Moving forward, ACS CAN will continue to evaluate all options and remains open to supporting other policies to reach our objectives. However, it is critical that all policies be evaluated as part of a comprehensive package as opposed to stand-alone proposals that only address one aspect of the shortage. 


    Cancer Votes

    This year we activated our Cancer Votes program to target two local races in Memphis and St. Louis, where ACS CAN is working to reduce cancer disparities. We asked the candidates questions about the social determinants of health, including food insecurity to inform voters about each candidate’s stance on these issues. Learn more by viewing the voter guides we published for the Memphis Mayoral Race and the St. Louis Board of Aldermen Race. Cancer Votes plans for the 2024 election cycle are officially underway and will kick off in January with an expanded reach across federal races and focus on higher impact engagement opportunities. Stay tuned!


    Federal Updates

    • ACS CAN filed a friend-of-the-court brief defending the ability of immigrants to access Medicaid without it adversely affecting their immigration status in the case of Texas v Mayorkas in U.S. District Court in the Southern District of Texas. The brief was filed along with other public health organizations urging the court to uphold the administration’s 2022 “public charge” policy, providing scientific data regarding enrollment in Medicaid and the correlation between access and the use of preventive health services that lower health care costs and improves patient outcomes . Read the release 
    • ACS CAN submitted a letter to the Centers for Medicare and Medicaid Services commenting on draft guidance related to the maximum monthly cap on patient co-payments under prescription drug plans, referred to as the Medicare Prescription Payment Plan, which will begin in plan year 2025. Read the release. 
    • ACS CAN and 21 other advocacy groups sent a letter to the Centers for Medicare & Medicaid Services (CMS) offering recommendations on how the agency should consider pharmaceutical therapeutic alternatives to selected oncology drugs for 2026 Medicare plans as the administration heads into the negotiation process laid out in the Inflation Reduction Act (IRA). Read the release.  
    • The American Cancer Society Cancer Action Network and The Susan G. Komen Center for Public Policy hosted a Congressional Briefing: The Screening for Communities to Receive Early and Equitable Needed Services (SCREENS) for Cancer Act Thursday, October 26, 2023. The Congressional Briefing featured Congressman Joe Morelle (NY-25), House Appropriations Committee and Ranking Member of the Committee on House Administration; Congressman Brian Fitzpatrick (PA-14), Member of the House Appropriations Committee and Ranking Member of the Committee on House Administration; Lisa C. Richardson, MD, MPH, Director of CDC’s Division of Cancer Prevention and Control (DCPC) and cancer survivor, and New York ACT lead Mary Catherine Johnson.   
    • ACS CAN's Angela Sailor, Director of Federal Strategic Alliances, Health Equity, made remarks regarding the impact of breast and cervical cancer. Other speakers highlighted the importance of The National Breast and Cervical Cancer Early Detection Program (NBCCEDP), a partnership between the Centers for Disease Control and Prevention (CDC) and state health departments.
    • ACS CAN sponsored the Asian & Pacific Islander American Health Forum’s 13th Annual VOICES Conference. Staff attended sessions featuring HHS Secretary Xavier Becerra, attended panel discussions on the importance of diversity in clinical trials and participated in a roundtable luncheon to learn more about the health equity issues facing the Asian American, Native Hawaiian and Pacific Islander (AANHPI) communities.

    State Updates

    • In Michigan, after more than 15 years of advocacy, the State legislature oral chemotherapy fairness legislation. Read the full release. 
    • In Ohio, we awarded Gov. Mike DeWine the National Distinguished Advocacy Award, the most prestigious award presented by ACS CAN. The award recognizes his significant contributions to advance Ohio’s tobacco control policy, including his commitment to preventing laws in Ohio that would have limited local governments’ efforts to reduce tobacco use and proposing to end the sale of flavored tobacco products to stop Big Tobacco’s deliberate marketing to Ohio’s youth. 
    • In efforts to get legislators to sign onto a letter to Governor Hochul in support of the New York biomarker bill, ACS CAN launched a four-week ad campaign in 20 news outlets in support of the campaign to enact biomarker legislation. The four ads feature different coalition partners and ask people to call the governor. Follow ACS CAN NY on X for campaign updates. 

    Advocacy in the News - Highlights

    • POLITICOWhy health care experts are so concerned about fishing boats 
    • CNN HealthUS adults living alone may face higher risk of cancer death, study suggests 
    • Black Star NewsCancer Survivor Presses For Funding, Early Detection To Reduce Disparities In Black Communities 
    • Los Angeles Times: Bill to allow Amsterdam-style cannabis cafes in California goes up in smoke with Newsom veto 
    • Mississippi Today: ‘It is a moral obligation’: Faith leaders, advocates, doctors cite Christianity as reason to expand Medicaid 
    • Highland County PressGovernor DeWine receives National Distinguished Advocacy Award for championing lifesaving tobacco control policy 
    • The Cancer Letter: High-risk investments by ARPA-H aim to catalyze a new era in cancer research 
    • GongwerWhitmer Signs Oral Chemo, Local Gov't Reimbursement Bills
    • ASCO PostPatients and Survivors of Cancer May Be Impacted by U.S. Drug Shortages 

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