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June Advocacy Update

Highlights include the 13th Annual National Forum on the Future of Health Care, Survivor Views data, and ACS Annual Meeting.

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A message from ACS CAN President Lisa Lacasse

Throughout these last weeks, we've worked to elevate critical solutions to address the nation's overwhelming medical debt problem. As advocates for cancer patients, survivors, and their loved ones, we are committed to advancing these solutions to ease the undue financial burden caused by a cancer diagnosis. This includes providing equitable access to cancer care, including expanding access to Medicaid in the 10 states that have refused to do so. We will not give up this fight. 

Our 13th Annual National Forum on the Future of Health Care focused specifically on the burden medical debt causes on patients and their families. The Forum featured keynotes as well as expert panels tackling this issue, including the causes, how to reduce the impact of existing debt, and innovative policy solutions to prevent and eliminate this debt. Panelists included physicians, policy experts, advocates, researchers and award-winning journalist Noam Levey, who emphasized the financial impact of medical debt on individuals and families nationwide coupled with existing wealth disparities. Volunteers and guest panelists shared their expertise and their personal stories. One panelist, storyteller Andy Janning, helped close the day saying, "Financial toxicity is nuanced, complicated, and chronic, and it needs everyone's voice." We agree, and ACS CAN is committed to raising these voices and continuing to seek innovative solutions as we work to address this critical issue. If you missed it, watch the replay.

At the Forum, ACS CAN shared new Survivor Views data, which amplifies the perspectives of cancer patients and survivors. Our latest survey of 1,284 cancer patients and survivors showed that nearly half have had medical debt, despite 98% being insured when the debt was incurred. The survey also emphasized the disproportionate impact medical debt has on communities of color as well as the rise in debt among younger patients. Please read the latest findings and share these important data with your networks if you haven't already. Increasing visibility of this issue is so vital to our efforts to reduce the cancer burden nationwide.

This week, I had the opportunity to meet with many of our partners at the ASCO Annual Meeting to talk about our ongoing work and how they can continue to support our mission. ACS CAN was proud to join Genentech and the National LGBT Cancer Network in sponsoring the first-ever Out at ASCO event to foster community and connections for LGBTQ+ people and allies. I also had the distinct pleasure of joining colleagues to present ACS CAN’s advocacy work and discuss the effectiveness of policy interventions to address financial toxicity with Natalie Dickson, MD, President and Chief Executive Officer at Tennessee Oncology and Osama Abdelghany, PharmD, Executive Director, Oncology Pharmacy Services at Yale New Haven Health (pictured above). We discussed the opportunities and shortcomings of current programs and interventions such as the 340B Drug Pricing Programsite neutral payments and step therapy. I shared specifically how ACS CAN works to ensure potential solutions are most beneficial to all patients.

The second half of 2024 is a critical time period for our work. We ask you to join us in fully leaning into our efforts in Cancer Votes as we move into the peak of electoral activity across the country. We remain committed to elevating our cancer priorities to all elected officials to ensure we are creating a lasting impact to reduce the overall burden of cancer, as well as the disproportionate strain it places on communities of color and on rural areas across the country.

Thank you for your continued commitment.

June is Pride Month! 

Honoring Pride is a year-round celebration and act of allyship. Still, June is a reminder at ACS CAN of the importance of creating a health care environment where everyone, regardless of their sexual orientation or gender identity, feels seen, heard and supported. As we celebrate Pride Month, we are dedicated to recognizing the unique challenges faced by LGBTQ+ individuals, particularly addressing health equity and access to care. Among these challenges are reduced access to health care and higher burdens of diseases such as cancer. Systemic discrimination, pervasive mistrust in the health care system, and low levels of cancer prevention, screening, and early detection contribute to these disparities, especially as LGBTQ+ individuals often face barriers to accessing high-quality care.

ACS CAN, along with our volunteer LGBTQIA+ and Allies and Engagement Group, is proudly participating in 35 Pride events across 23 states this month, with many more planned throughout the year. This Pride Month, help us amplify our dedication to fighting for policies that ensure the LGBTQ+ community has equitable access to quality care. If you haven't already, read the ACS' latest Cancer Statistics on how cancer impacts the LGBTQ+ community.

Cancer Votes Update 

We've made incredible impact so far through our Cancer Votes program including: 

  • 452 volunteers trained across 46 states, D.C., and Puerto Rico
  • 18 meetings with congressional campaign staffers
  • 23 candidates signed the Cancer Promise
  • 3 candidate roundtables
  • 3.4K+ advocates sent messages to presidential candidates 

These numbers just begin to tell the story of the impact ACS CAN volunteers have made through Cancer Votes in 2024. One highlight is the recent coffee chat our Cancer Votes volunteers had with Maryland U.S. Senate Candidate and Former Maryland Governor Larry Hogan. Volunteers shared their cancer stories and ACS CAN's legislative priorities with Hogan, who is a cancer survivor. Both candidates in this race, Angela Alsobrooks and Larry Hogan, have signed our Cancer Promise. ACS CAN staff and volunteers are also working to schedule a coffee chat with Alsobrooks.

In Case You Missed It

The AAPI Volunteer Caucus, hosted a virtual event with the Oncology Nursing Society emphasizing cancer inequities among AANHPI people who face stereotypes, stigma, culture and language barriers. The presenters discussed how disaggregated data, representative and culturally component oncology care, and equitable and accessible patient navigation services can improve access to cancer care and cancer outcomes for AANHPI people. Watch the replay.

ACS CAN's volunteer Young Leaders Caucus hosted its first virtual event, Stories of Young Adult Survivorship. The panelists shared their own cancer stories and discussed issues important to young cancer patients and survivors, such as financial debt, mental health, fertility and the importance of connection during a person's cancer journey.

Insurance Coverage Eligibility Expanded to DACA Recipients

The U.S. Department of Health and Human Services has officially finalized a rule that expands insurance coverage eligibility to Deferred Action for Childhood Arrivals (DACA) recipients. Last year, ACS CAN passionately advocated for this proposed rule due to its potential to break down barriers preventing DACA recipients from accessing crucial health care services. Now, an estimated 100,000 previously uninsured DACA recipients are eligible for coverage through the marketplaces. This is a significant victory in our ongoing efforts to ensure that no one is left behind when it comes to accessing the care they need. However, we also recognize that the original proposal to make DACA recipients eligible for Medicaid or Children's Health Insurance Program (CHIP) did not come to fruition.

ACS Launched VOICES, to Study Cancer Risk and Outcomes for Black Women

ACS CAN is helping amplify the American Cancer Society's (ACS) VOICES of Black Women study, the largest population study of cancer risk and outcomes for Black women in the U.S. The study aims to better understand the lived experiences of Black women related to cancer incidence, mortality, and resilience. We look forward to data from the study informing evidence-based policies that could address disparities in cancer care faced by the community. Share about VOICES using this link.

State Updates

Colorado Governor Signs Biomarker Bill

Governor Jared Polis signed SB24-124, a bill that will allow more patients covered by insurance to have access to biomarker testing. Though the bill does not improve access to Medicaid enrollees, it will affect coverage plans for over 1 million Coloradans.

During ACS CAN's Board meeting in May, we were joined by Colorado Representative Anthony Hartsook (R) and Colorado Senator Dafna Michaelson Jenet (D), who shared about their bipartisan partnership to champion this biomarker legislation critical for families impacted by cancer. We were also joined by a long-time friend of ACS CAN, Colorado Lieutenant Governor Dianne Primavera who shared her cancer experience with us and her continued work advocating for cancer patients, survivors and their loved ones. 

Iowa Governor Signs Biomarker Bill

Governor Kim Reynolds signed legislation into law that will ensure Iowans covered by Medicaid and state-regulated insurance plans now have coverage for biomarker testing when medically appropriate. 

Tennessee Governor Signs PSA Screening for HIM Bill

Governor Bill Lee signed HB 2954, or the PSA Screening for HIM bill, making Tennessee the sixth state to enhance coverage of prostate cancer screenings for high-risk men. 

Federal Updates

On May 15, the Clinical Trial Modernization Act was introduced in the U.S. House of Representatives. This federal legislation will remove financial and geographic barriers for clinical trials. By allowing trial sponsors to defray costs, this bipartisan bill will encourage clinical trial enrollment by underrepresented populations. Sponsored by Representatives Raul Ruiz (D-CA) and Larry Bucshon (R-IN), this bipartisan bill would allow trial sponsors to cover costs associated with trial participation, including medical cost sharing like copays and non-medical expenses such as travel, parking, food, and lodging. Trial sponsors would also be able to provide patients with the necessary technology to facilitate remote participation in clinical trials. 

At the Courthouse

Advocates for graphic warnings on cigarette packages and advertisements celebrated in late May when the Court of Appeals for the Fifth Circuit declined to hear an en banc tobacco industry appeal of an earlier panel decision upholding the FDA's regulations. ACS and ACS CAN have supported graphic warnings at every phase since passage of the Tobacco Control Act mandated them in 2009. Although there is still a long road ahead, the Fifth Circuit declining to hear the appeal en banc is a major step towards seeing the warnings on every pack and ad.

In the longstanding racketeering case of U.S. v. Philip Morris in which ACS is an intervenor and the tobacco industry was convicted of massive fraud, ACS and other tobacco control partners recently agreed to a settlement that will result in 5,000 additional corrective statement signs at tobacco retailers across the nation.

Advocacy in the News 

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