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August Advocacy Update

Media advocacy is a critical campaign tactic we use to apply public pressure on policymakers.

A message from ACS CAN President Lisa Lacasse

Alongside direct lobbying and grassroots engagement, media advocacy is a critical campaign tactic we utilize to apply public pressure on policymakers in an effort to advance our agenda at the federal, state and local levels. In July, our media advocacy work continued to amplify our mission priorities and underscored our commitment to health equity. Our federal and regional media advocacy team members are hard at work, successfully expanding our reach, pitching reporters and landing stories and placements that underline our priorities from tobacco control to access to care, increased funding for cancer research and beyond. This past month, I was particularly proud of the efforts our team continues to lead in diversifying the channels we're using to get our message out to legislators and their constituents.

ACS CAN recently partnered with Congressman Troy Carter (D-LA) to raise awareness for the disproportionate burden of prostate cancer on the Black community and advocate for the Prostate-Specific Antigen Screening for High-risk Insured Men (PSA Screening for HIM Act). We published a joint op-ed (p.9) by Dr. Knudsen and Congressman Carter in Urban One's Special Supplement distributed to member offices on the Hill. The piece states that the passage of PSA for HIM would remove significant barriers to care and improve outcomes for those at high risk of prostate cancer. The article shares the unfortunate reality that Black men have the highest incidence rate of prostate cancer in the world and are more than twice as likely to die from the disease than White men. Urban One Media has been the leading publication for Black Americans for over three decades, reaching 82% of Black America with 20 million unique viewers this year. We've continued our partnership with Urban One for our fifth year to keep cancer health disparities as an important topic and deciding factor in legislation and policy changes impacting this community.

ACS CAN Board Vice Chair Kimberly Jeffries Leonard, Ph.D., also leveraged her position as a leader in the non-profit and health care space to promote health equity from the cancer perspective, authoring an op-ed in NABJ Black News and Views. This publication by the National Association of Black Journalists is a new and trusted destination on issues affecting the Black community. The sponsored piece called on the FDA to finalize proposed rules to end the sale of Menthol cigarettes and to end Big Tobacco's aggressive marketing tactics in Black communities. The op-ed states, "By reducing tobacco use, the FDA could address a key driver of cancer-related health disparities that impact people from racial and ethnic groups. The FDA has the power to save as many as 654,000 lives, including the lives of more than 238,000 African Americans, over the next 40 years." A big thank you to Kimberly!  

And regionally, we continue to elevate the patient voice in rural and multicultural-focused outlets. In Missouri, ACS CAN volunteer Nedra Bramlett-Stevenson was interviewed in an article in the St. Louis American discussing Medicaid unwinding in the state and its impact on access to cancer screening. In Wisconsin, a letter to the editor (LTE) quoting ACS CAN volunteer and childhood cancer survivor Bridget Wallace ran in the Platteville Journal. In support of our postpartum Medicaid expansion campaign, Bridget highlighted the importance of ensuring everyone has access to affordable health care postpartum, when cancer risks are heightened. In the Marietta Times in Ohio, ACS CAN applauded Governor Mike DeWine for standing up for Ohio's youth, vetoing language from the state's operating budget bill which would have removed control from local governments. Additionally, Berta Pesantez, a cancer survivor and ACS CAN advocate, published an op-ed in Spanish sharing her biomarker story and urging New York Governor Hochul to sign a bill recently passed by the state legislature that would expand coverage for the testing. Berta also illuminated the fact that communities of color are disproportionately impacted when the cost of biomarker testing is not covered.

We are so proud of our advocates nationwide as they continue to raise their voices in this fight and use the media as an impactful way to get our message out that cancer impacts ALL communities.

Thanks for sharing our stories with your network.

A Step Forward for Patient Navigation

The Center for Medicare and Medicaid Services (CMS) proposed a 2024 Medicare Physician Fee Schedule that includes coding changes to allow for reimbursement for some patient navigation services and expanded access to telehealth. We applaud CMS for taking this first step towards improving access to patient navigation services and advancing the Cancer Moonshot goal of cancer health equity. This step is critically important to our efforts to make patient navigation services accessible to everyone across the cancer continuum. We are encouraging Congress to build on this administrative action to pursue additional avenues to ensure services are widely available to all cancer patients who can benefit.

JAI Celebrates 15 Years of Action!

This month, we celebrate the 15th anniversary of ACS CAN's Judicial Advocacy Initiative (JAI). JAI was founded on the fact that ACS CAN must have a presence and influence in every branch of government to effectively advance our cancer mission. Through JAI, highly trained attorneys across the country contribute their expertise to further a wide range of mission goals. From its inception in August 2008 until December 2022, the program had resulted in $5.6 million in contributed services from law firms, with over $600,000 contributed in 2022 alone.

More importantly, JAI has enabled ACS CAN to take the leading role in representing patient groups in litigation that greatly impacts our policy agenda, particularly in the priority areas of access to health care and tobacco control. Through JAI, we elevate the scientific evidence and the cancer patient voice when important decisions are being made in the judicial branch of government. JAI attorneys write and submit amicus curiae (or "friend of the court") briefs in cases that determine whether statutes and regulations we fought for or against will stand. Through these briefs, we provide scientific or medical information relevant to a specific court case. Also, amicus briefs have proven impact: in a report spanning ten terms of the US Supreme Court, the justices cited amicus as authority in over half of their decisions.

I encourage you to visit our website to learn more about key cases in which ACS CAN has engaged via our JAI portfolio. Examples include: Defending the Affordable Care Act (ACA) in three different structural challenges that worked their way through the circuit courts and up to the US Supreme Court from 2010-2021; Advocating for the ability of Medicaid enrollees to continue using civil rights laws to enforce their benefits at the US Supreme Court; and Fighting for the rights of LGBTQ+ individuals to receive health care services without discrimination. 

Update on Unwinding

Medicaid unwinding and the subsequent coverage gaps continue to be a troubling national trend. At least 3,991,000 Medicaid enrollees have been disenrolled as of August 8, 2023, based on the most current data from 42 states and the District of Columbia. Overall, 38% of people with a completed renewal were disenrolled in reporting states. ACS CAN is urging CMS to gather detailed data and make it public promptly, which will properly inform the best path forward to ensure coverage isn't being erroneously stripped from those still eligible. We also urge CMS to use its authority to require a pause in coverage losses due to procedural reasons in states with concerning rates. Read more in our recent release.

In case you missed it:

In July, ACS CAN and ACS partnered with the Alaska Native Tribal Health Consortium to hold the first-ever Alaska Native Colorectal Cancer Research Symposium. The two-day event focused on why Alaska Natives have the highest colorectal cancer incidence rate in the world. ACS CAN Board of Directors member Dr. Bruce Waldholtz participated via Zoom, and ACS research leaders Dr. Robert Smith and Becky Siegel presented at the event, demonstrating our enterprise-wide commitment to solving health equity challenges.

The National Conference of Insurance Legislators (NCOIL) held their Summer Meeting in July. After almost two years of hard work, we advanced our ACS CAN biomarker legislation, the NCOIL Biomarker Testing Insurance Coverage Model Act through the health committee. This helps us create pathways for ongoing passage of this important legislation nationwide.

ACS CAN's 2023 Leadership Summit & Lobby Day (LS&LD) in Washington, DC is around the corner! Advocates from across the nation will join us September 17th-20th for a power-packed few days. LS&LD will kick off Sunday evening with our annual National Advocacy Leadership Awards Dinner honoring the remarkable work of our volunteers and colleagues. Monday is the Leadership Summit: a full day of keynotes, general sessions and breakouts to prepare for Hill visits with lawmakers urging support for our federal priorities. The annual CAN Opener, our ticketed dinner and dancing fundraiser, is on Monday night. Tuesday is Lobby Day, when our volunteers and their staff partners will spend the majority of the day on Capitol Hill. That night, participants will gather to honor and remember our loved ones at the Hope Walk – our display of Lights of Hope at Constitution Gardens on the National Mall. Finally, on Wednesday, we will round out with the President's Recognition Breakfast, followed by sessions and the closing lunch keynote. 

Lights of Hope 2023 fundraising has begun in full force! On September 19, we are celebrating the 13th anniversary of Lights of Hope. We expect to display 10,000 Lights of Hope on site in Washington, DC, and more than 65,000 across the country. In addition to our Hope Walk in Washington, DC, ACS CAN volunteers are holding hundreds of Lights of Hope events nationwide. For those new to ACS CAN, each Light of Hope represents a loved one's cancer story—a survivor, someone in treatment, someone who passed from cancer, or a cancer caregiver. This event is a visual reminder to all elected officials of the strength of our collective voice and our role in this cancer fight – as well as a critical fundraiser for ACS CAN's public policy advocacy agenda. You can get involved by raising funds and donating to Lights of Hope.

Federal Updates

With Congress in recess until September, appropriations for critical cancer research funding is a major focus of our efforts. The Senate Appropriations Committee advanced its FY24 Labor Health and Human Services bill that increases federal cancer research funding spending levels. The bill includes $49.224 billion ($265 million increase) for the National Institutes of Health (NIH), including $7.38 billion ($60 million increase) for the National Cancer Institute (NCI) and maintains the current funding level of $1.5 billion for the Advanced Research Projects Agency for Health (ARPA-H). The bill maintains current funding levels for the Centers for Disease Control and Prevention (CDC) cancer screening programs, including the National Breast and Cervical Cancer Program and the Prostate Cancer Program. It includes a report encouraging outreach and initiatives among those at high risk, especially African American men. The bill also includes $5.5 million for the National Firefighter Registry for Cancer, an important tool for scientists as the registry recruits and enrolls participants. In a major win, the bill also includes $12.5 million to implement a trans-institute, trans-disease strategy to focus, expand, and intensify national research programs in palliative care at NIH.  

The FY24 Interior, Environment, and Related Agencies Appropriations bill received $42.695 billion in total funding. The bill also provided advanced appropriations for FY '25 Indian Health Service in the amount of $5.22 billion, which will provide essential health services to 2.5 million people across Indian Country. 

We appreciate the Committee's bipartisan efforts to prioritize cancer discovery given the tight budget environment, especially as we fight against the dangerous cuts proposed in the House. The House Appropriations Subcommittee on Labor Health and Human Services threatens dangerous cuts to federal cancer research, including a $3.8 billion cut for NIH, a $216 million cut for NCI and a $1 billion cut for ARPA-H. The cuts in this bill would roll back the clock on cancer advancements, reversing decades of progress and undermining our ability to leverage past investment to further future discovery. We continue to urge lawmakers to protect the nation's research foundation and increase funding for critical research that has ignited lifesaving advancements for those touched by cancer.

During the National Medical Association conference in New Orleans, ACS CAN and Zero Prostate Cancer co-hosted a prostate cancer screening and awareness event at the Abundant Life Church in New Orleans. ACS CAN staff served as a panelist to illustrate the importance of early detection, thanked Congressman Troy Carter (D-LA) for his leadership as an original co-sponsor of HR 1826, the PSA Screening for HIM Act, and his personal story and journey as a two-time prostate cancer survivor. Over 300 individuals registered for this event, and 109 were screened during the three-hour event. A total of 158 people were in attendance, and ACS CAN also emphasized support of the Multi-Cancer Early Detection (MCED) Act in the House and Senate. ACS CAN joined ACS at the conference, providing information at ACS's booth regarding the importance of PSA for HIM and MCED legislation in the House and Senate.

State and Local Updates

  • The Pennsylvania Legislature passed, and Governor Shapiro certified the 2023-24 budget that includes important cancer prevention and treatment priorities for Pennsylvanians. The budget includes a $2.563 million funding allocation for the Pennsylvania Breast & Cervical Cancer Early Detection Program (PA BCCEDP) that will go a long way toward lowering cancer incidence and mortality rates, especially for under- and uninsured Pennsylvanians. 
  • Our California team completed a busy month in July. They mobilized the annual California Cancer Caucus legislative briefing, drawing more than 70 legislators, staff and cancer professionals. The event was titled "Biomarker Testing: The Future of Patient Care and Improved Outcomes" and was moderated by ACS CAN State and Local Campaigns Access to Care Director Hilary Gee Goeckner. Additionally, over 145 people attended our virtual 2023 California Legislative Policy Roundtable. State Leader Ambassador and ACS CAN Board Member Kay Coleman was the moderator.  
  • The Alabama team collaborated with the state and local campaigns team to purchase billboard space around Montgomery calling for Medicaid expansion. See this piece from about the billboard campaign and veterans in the coverage gap, quoting ACS CAN government relations director Jane Adams. The team amplified the billboard buzz with this op-ed focusing on veterans and Medicaid expansion from the point-of-view of a volunteer who works at the VA. 
  • In Alaska, Governor Mike Dunleavy signed legislation that will extend eligibility for postpartum Medicaid. This bill means more individuals are more likely to have access to reliable primary care postpartum, which will improve health outcomes and access to screening for cancer and chronic diseases.  
  • The Washington State team hosted the 2nd Annual Cancer Coalition Summit with 50+ attendees, including lawmakers and prominent government relations directors from across the health care continuum. The coalition is truly a partnership, whereby ACS CAN gives its partners a platform to speak to a wide range of stakeholders with ACS CAN as the convener. 

We're keeping our eye on the following issues in states.

  • A new investigative report revealed that the federal government has been aware of the risks radioactive waste posed to communities in St. Louis for 75 years but failed to act. We're ensuring that health concerns voiced by Missouri communities are amplified, and the well-being of residents is a priority. 
  • In New York, ACS CAN and 50+ partner organizations signed a letter urging Governor Kathy Hochul to sign S1196, which would align insurance coverage of biomarker testing with the latest medical evidence. Biomarker testing connects patients with the most effective treatment. A lack of action to expand coverage and access to biomarker testing could exacerbate disparities in access to care. Legislation comparable to S1196 has passed and been signed into law in Arizona, Arkansas, Georgia, Illinois, Kentucky, Louisiana, Maryland, Minnesota, New Mexico, Oklahoma, Rhode Island, and Texas with overwhelming bipartisan support.
  • The Oregon Legislature amended state law to require eight additional tobacco manufacturers to make "equity payments" for every unit of their product sold. The funds, expected to amount to $4-5 million annually, are to be allocated for the Oregon Health Plan. Also, a bill to remove patient cost sharing for follow-up breast exams was approved. 

Advocacy in the News - Highlights

CNN - Big Tobacco posts warning signs at 220,000 US stores, wrapping up ongoing lawsuit since 1999

CNN Health - Drug shortages' effects on cancer research may be felt for years to come

POLITICOPro - Bernie Sanders is personally stopping Biden's top medical research nominee - and he's not budging

News-Medical Life Sciences - Black cancer survivors face higher risk of cardiovascular disease

Becker's Hospital Review - Cancer drug shortages wreak havoc on clinical trials

Healio - Community affluence, insurance mediate CV mortality among Black, white cancer survivors

Cancer Health - Proposed Rule on Short-Term Health Plans Would Strengthen Patient Protections

Cancer Health - Medicaid Expansion Increases Palliative Care for Advanced Cancer Patients

Washington Informer - Legislation Banning PFAS from Firefighter Equipment; Medicare to Cover Multi-Cancer Screenings

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