Don't miss ACS CAN’s National Forum on the Future of Health Care focusing on Patient Navigation on May 10.
Don't miss ACS CAN’s National Forum on the Future of Health Care focusing on Patient Navigation next Wednesday, May 10! Click to register now.
A message from ACS CAN President Lisa Lacasse
There is much happening in D.C. these days as discussions about increasing the nation's debt ceiling continue, along with the uncertain FY24 budget climate. Last week in a 217-215 vote, the U.S. House passed the Limit, Save, Grow Act, advancing provisions that would greatly restrict access to affordable care by proposing ineffective work requirements for Medicaid recipients. As an evidence-based organization, the data do not support increased employment through work requirements but rather results in an increase in the number of uninsured. We are also concerned with implications for reduction in funding for key priorities, including cancer research and prevention programs. This bill will not pass in the Senate, but we elevated our concerns to House leadership that such harmful provisions would roll back the nation's progress in the fight against cancer. We will leverage our collective might to mitigate appropriations reductions at the federal level that impact our cancer priorities. Read the full release.
On the tobacco front, we just marked a year since the U.S. Food and Drug Administration (FDA) released its proposed rules to prohibit menthol in cigarettes and eliminate all flavors in cigars. The rules are still not final. This inaction has allowed Big Tobacco to continue targeting these products to the Black community, who consistently report the highest prevalence of menthol cigarette use. Finalizing these rules would help combat health disparities and could save as many as 654,000 lives, including the lives of more than 238,000 African Americans, over the next 40 years, according to modeling studies. We are urging the FDA to swiftly finalize the rules and act immediately to eliminate harmful flavors in cigarettes and cigars. Read the full release.
In the courts, we've been taking a leadership role for public health groups in the Braidwood v. Becerra case that threatens access to preventive services. We worked with partners to convince the Department of Justice to file a motion asking the U.S. District Court to issue a stay on its judgment, then when the District Court failed to rule, bump that request up to the U.S. Court of Appeals for the Fifth Circuit. We led 15 other patient groups in filing an amicus brief in support of the DOJ's motion asking the Fifth Circuit to grant the stay. Our amicus brief urges the appeals court to put the lower court's March 30 ruling on hold, outlining critical services that would be lost to many such as lung cancer screening and colorectal screening for individuals ages 45-49.
We are also concerned about the recent U.S. District Court ruling undermining FDA authority in its scientific review and approval of pharmaceuticals. In the case of Alliance for Hippocratic Medicine v. FDA, ACS CAN joined 33 organizations representing patients with serious health conditions in applauding the Supreme Court's decision to pause rulings by lower courts that would have limited access to the FDA-approved drug mifepristone while litigation about the drug works its way through the courts. We joined an amicus brief educating the court about the implications of restricting access to FDA-approved drugs on patients, and why courts should not undermine the complex, evidence-based process where statutory authority on safety and efficacy has been granted to the agency by Congress. Read the full statement.
ACS CAN's New Mission Statement:
As we continue to work to advance our cancer priorities nationwide, I'm thrilled to share ACS CAN's new mission statement: To advocate for evidence-based public policies to reduce the cancer burden for everyone. This statement succinctly captures our work and compliments our shared vision with ACS: To end cancer as we know it, for everyone. Our mission and vision guide our campaign priorities nationwide. I'm honored to lead a team of driven and passionate advocates at ACS CAN, along with so many volunteers around the country working to elevate our cancer-fighting priorities for all patients and their families.
In Case You Missed it
State Lead Ambassador Summit
This past weekend was an amazing one for ACS CAN as I, along with ACS CAN Board Chair Maureen Mann and Board member, Phil O'Brien, joined our phenomenal ACS CAN volunteer leaders in Milwaukee, Wisconsin for our annual State Lead Ambassador (SLA) Summit. SLAs, and this year for the first time, Vice SLAs, members of our National Ambassador Team (NAT), SLA Emeritus members, along with staff partners gathered to celebrate our victories, share best practices and augment knowledge on a variety of key issues. A big thank you to the ACS CAN Grassroots Advocacy Team for facilitating necessary and important discussions with this community of volunteer leaders, and to every grassroots staff partner for their tremendous support of our dedicated volunteers.
At the Summit, we shared our 2023 ACS CAN goal of impacting 15.1M lives in 2023 and our volunteer leaders' role in achieving that goal, part of an enterprise effort to measure the lives we are influencing every year through our work. There was much excitement in connecting and sharing ideas centered around our priorities of cancer prevention, including strong tobacco control, equitable access to quality affordable health care, and accelerating cures, all with a focus on keeping health equity, diversity and inclusion at the forefront.
We also centered on a core beacon of our advocacy -- to continue to show that every community impacted by cancer sees ACS CAN as a partner and a place where all are welcome and all are included and encouraged to elevate their voices in the fight against cancer. To build on this important work, we announced our plans to invest in diversity, equity and inclusion training for our leadership volunteers. More to come on that work over the coming months.
State Lead Ambassador Summit
This past weekend was an amazing one for ACS CAN as I, along with ACS CAN Board Chair Maureen Mann and Board member, Phil O'Brien, joined our phenomenal ACS CAN volunteer leaders in Milwaukee, Wisconsin for our annual State Lead Ambassador (SLA) Summit. SLAs, and this year for the first time, Vice SLAs, members of our National Ambassador Team (NAT), SLA Emeritus members, along with staff partners gathered to celebrate our victories, share best practices and augment knowledge on a variety of key issues. A big thank you to the ACS CAN Grassroots Advocacy Team for facilitating necessary and important discussions with this community of volunteer leaders, and to every grassroots staff partner for their tremendous support of our dedicated volunteers.
At the Summit, we shared our 2023 ACS CAN goal of impacting 15.1M lives in 2023 and our volunteer leaders' role in achieving that goal, part of an enterprise effort to measure the lives we are influencing every year through our work. There was much excitement in connecting and sharing ideas centered around our priorities of cancer prevention, including strong tobacco control, equitable access to quality affordable health care, and accelerating cures, all with a focus on keeping health equity, diversity and inclusion at the forefront.
We also centered on a core beacon of our advocacy -- to continue to show that every community impacted by cancer sees ACS CAN as a partner and a place where all are welcome and all are included and encouraged to elevate their voices in the fight against cancer. To build on this important work, we announced our plans to invest in diversity, equity and inclusion training for our leadership volunteers. More to come on that work over the coming months.
We recognize there's so much work to be done, and we will continue cultivating our ongoing health equity advocacy work, while supporting hardworking partner organizations in this space. Over the last months we've sponsored targeted events and continue to engage with dynamic organizations to expand our reach into diverse communities. Our partnerships include the National Coalition of 100 Black Women, Delta Sigma Theta Sorority, Inc., the Congressional Hispanic Caucus Institute's (CHCI) Health Issues Summit, National Indian Health Board's (NIHB), the National Tribal Health Conference, National Council of Urban Indian Health (NCUIH), The Congressional Hispanic Leadership Institute (CHLI), and the Asian Pacific American Institute for Congressional Studies (APAICS) Awards Gala.
State & Local Advances
With health equity and partnership advancements, I'm proud to continue to acknowledge our state and local access to care victories. ACS CAN's State and Local teams have accomplished so much in 2023 legislative sessions to date.
ACS CAN continues to work to make cancer a priority in all 50 states, DC, Puerto Rico, and Guam. This year alone, our teams nationwide successfully executed 44 Cancer Action Days mobilizing more than 800 volunteers to advocate for Medicaid expansion, tobacco control, biomarker testing coverage, funding for breast and cervical cancer early detection programs, patient navigation funding and more. I recently had the pleasure of heading to the West Coast for California's Cancer Action Day to join advocates in urging their lawmakers to support cancer priorities including a bill to expand insurance coverage of biomarker testing. From California, I went onto Phoenix to discuss our agenda with both the State Medicaid Director and the Department of Insurance and Finance Information. Relationships developed by our team in state capitals is critical to our success.
We have also celebrated recent wins in Kentucky, New Mexico, Georgia, Arkansas and Maryland, making it possible for more people to access the game changing advancement of biomarker testing. This is the necessary first step in opening the door to precision medicine and targeted treatments, improving quality of life and survivorship nationwide. In addition to C.A., we continue to make progress in many states to ensure equitable access to innovative therapies, including Minnesota, Massachusetts, Nevada, Oklahoma and Texas.
Increasing Access to Advancements in Care
Biomarkers testing is just the beginning of the possibilities of leveraging discovery and new technology in cancer care. In April, ACS CAN announced the launch of a prospective study of a new tool that would automatically identify relevant clinical trials for those diagnosed with cancer through one-button clinical trial matching integration within electronic health records (EHRs).
"Research shows that cancer patients are interested in participation in clinical trials, but the way we've gone about matching them to trials to date has been siloed and largely manual, putting an undue burden on patients or providers to conduct extensive research or be left with a false sense of limited options," said Mark Fleury, Ph.D., Policy Principal for ACS CAN and lead investigator on the project. "With just a few clicks in a medical record, this tool has the potential to quickly identify comprehensive trial availability within the region, and by doing so will increase opportunities for patients to maximize access to the latest cancer innovation within their community." Read the full release.
Along with this exciting potential, we were happy to hear news break that fellow cancer advocate Dr. Monica Bertagnolli, NCI director, will be nominated by President Biden to be the director of the NIH. Dr. Bertagnolli at the helm of NIH will only stand to further our mission.
Federal Action
As noted above, the debt ceiling remains a current issue that demands our attention. Speaker Kevin McCarthy recently passed the Limit, Save, Grow Act of 2023 in the U.S. House of Representatives that would raise the debt ceiling $1.5 trillion in exchange for spending cuts.
ACS CAN immediately sent a formal response to Speaker McCarthy and Leader Jeffries regarding Limit, Save, Grow Act of 2023, the Republican Debt Limit Proposal. ACS CAN has serious concerns about the impact of the recently passed legislation on cancer patients, survivors, and those at risk of cancer. Our letter offers comments on the Medicaid Work Requirements and Spending Caps provisions.
In addition, ACS CAN issued a public statement opposing Medicaid work requirement federal legislation.
We are also pleased to note that the Alan Reinstein Ban Asbestos Act (S1609/HR 2402) was introduced by Senator Jeff Merkley (D-OR) and Congresswoman Suzanne Bonamici (D-OR) March 30, 2023. This legislation, which is a total ban on all asbestos entering the United States, is supported by ACS CAN and the International Association of Firefighters (IAFF).
In Case You Missed it:
ACS CAN’s 12th annual National Forum on the Future of Health Care is Next Wednesday! As part of ACS CAN’s ongoing commitment to increasing access to care and addressing disparities, the 2023 conference will focus on how patient navigation services provide an avenue for cancer patients and survivors to overcome some of the barriers and challenges they face throughout their cancer care journey. Register Here.
Emerging Leaders Summit: This June we are hosting our first ever Advocacy Summit in Chicago for emerging leaders. ACS CAN will be standing up a new affinity group in 2023 to formalize an advocacy leadership structure for volunteers 18-35 years old. This new group will focus on recruitment, retention, and engagement of what is currently an important and underrepresented age group in our volunteer base. The summit will kick off this recruitment effort, and event registration will open soon.
Childhood Cancer Lobby Day: Last week, 11 volunteers from ACS CAN traveled to Washington, D.C., from across the nation to join more than 200 other cancer patients, survivors and family members from 34 states and the District of Columbia in the nation’s capital for the 12th Annual Alliance for Childhood Cancer Action Days, a two-day event organized by the Alliance for Childhood Cancer, of which ACS CAN is a member. Participants asked 144 lawmakers to fully fund the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act and fully fund the Childhood Cancer Data Initiative (CCDI) to improve the quality of life of childhood cancer patients, survivors and their families. They also asked lawmakers 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 photos on Facebook, Instagram, and LinkedIn and read this interview featuring two of our volunteers who attended the event.
Advocacy in the News - Highlights
U.S. News & World Report - Biden to Nominate Head of National Cancer Institute to Run NIH
CBS News - For uninsured people with cancer, access to care can be "very random"
PBS - Why some cancer patients will fall off a Medicaid coverage cliff this summer
The New York Times - Black Smokers at Center of New York Fight to Ban Menthol Cigarettes
Kaiser Health News - For Uninsured People With Cancer, Securing Care Can Be Like Spinning a Roulette Wheel
JAMA Medical News - After a Texas Judge Invalidated the ACA’s No-Cost Mandate for Common Preventive Care Under Private Insurance, What Can Patients Expect?
The ASCO Post - E-Cigarette Use Increased Significantly Among Younger U.S. Adults Between 2019 and 2021
Medscape - What Will Vaping Lead To? Emerging Research Shows Damage, and Addiction
Becker's Healthcare - American Cancer Society, West Virginia U use EHRs to match patients with clinical trials
