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ACS CAN Monthly Advocacy Update


Patient delegation visits Capitol Hill to oppose Senate health care bill 

In response to the Senate's accelerated legislative agenda to try and vote on health care legislation before the July 4 Congressional recess, ACS CAN patient volunteers from 14 of the 15 target states traveled to Washington, DC to make lawmakers aware of the opposition by patient communities to the Senate's Better Care Reconciliation Act (BCRA). The ACS CAN-led patient fly-in was held June 26-27 in coordination with 12 other organizations including: the American Diabetes Association, the American Heart Association, the American Lung Association, Consumers Union and the Cystic Fibrosis Foundation. The groups collectively flew in over 60 patients from all 15 target states. Senators from the target states are all critical members who could decide if the bill moves forward or not.  The patients participated in an ACS CAN-led training, and over 100 advocates, including patients and staff from participating organizations, met with members of Congress and congressional staff to ask Senators to vote NO on the BCRA legislation. 

Prior to meeting with their senators, ACS CAN patient volunteers participated in a radio media tour with interviews in many of our target states, including West Virginia Metro News Networks. ACS CAN also held a press conference with the other patient groups where Sen. Michael Bennet (CO) and Sen. Jon Tester (MT) expressed their opposition to the Senate bill, and patients shared personal stories of how the current health care law has helped them, as well as how they would be negatively impacted by the BCRA. Many national and regional outlets attended the event including: ABC News, CBS News, Fox News¸ The New York Times and The Washington Post. In addition, CNNAlaska Public Radio and Arizona PBS shadowed patients as they met with their senators. The lobby day was also covered by newspapers back at home, including The Knoxville News-Sentinel and the Arkansas Democrat-Gazette. Just hours after the press conference, patients and staff participating in meetings on Capitol Hill learned that the vote on the Senate bill would be postponed until after the July 4 recess.

In addition to the patient fly-in, ACS CAN completed more than 7,200 patch-through calls enabling volunteers to urge key senators to vote against the Senate bill.  As of early July, ACS CAN volunteers had contacted their senators with more than 15,700 emails. ACS CAN's #KeepUsCovered hashtag has been used on social media more than 4,700 times, generating almost 12 million impressions since its launch on May 5. And over the July 4 recess, ACS CAN volunteers attended townhalls and dropped off patient stories, letters and Medicaid polling results to their senators' district offices. 

Senate leadership indicated that they would continue to work on changes to the bill during the July 4 recess to attempt to gain additional support and try to vote again after the recess. ACS CAN continues to advocate for policies important for cancer patients and survivors that preserve critical patient protections necessary to keep health care affordable and accessible. 

Ongoing media coverage

Over the last month, as Senate health bill negotiations unfolded, ACS CAN has been an influential and prominent voice in the public debate playing out in the media. Nationally, our experts have been quoted in The Washington PostUSA TodayBloomberg NewsNPRLos Angeles Times and Time Magazine and have appeared on major cable news networks like MSNBC. We have also been a strong voice on Capitol Hill with articles in publications such as The Hill and Politico

ACS CAN also launched a national and regional advertising campaign that was highlighted in The New York Times. The campaign underscores the real risks to cancer patients and survivors posed by pending health care legislation. 

Regionally, ACS CAN staff have been concentrating media efforts in 15 target states and have successfully secured prominent media placements in all of them. Examples include West Virginia Public Media, the Philadelphia InquirerThe Sun Journal in Maine and local CBS News in Des Moines, Iowa. 

ACS CAN has been a part of the Protect Patient First Coalition, along with AARP, the American Heart Association, the American Diabetes Association and close to a dozen other organizations. Working through the coalition, ACS CAN staff helped organize media events in Cleveland, OHReno, NV and Denver, CO. The next event is scheduled to be held in West Virginia on July 13. 

Overall, since the Senate health care debate kicked off after Memorial Day Recess, ACS CAN has had more than 300 national and regional mentions on this issue in print, radio and TV. That total includes 79 national mentions, dozens of op-eds and letters to the editors including one in the Gwinnett Daily Post and another in the Billings Gazette.

New ACS CAN-sponsored survey reveals most Americans oppose cuts to Medicaid

A new nationwide survey finds eight in 10 (81 percent) Americans would oppose a health care bill if it includes deep cuts to Medicaid and 71 percent oppose moving the program to a lump sum or per-capita payment structure when they find out that structure would prohibit states from responding to the real-time needs of their residents.

The poll also found most Americans would oppose their states limiting Medicaid patients' access to certain high-cost drugs or cancer treatments (81 percent) and would also object to restricting access to preventive screenings and diagnostic tests such as mammograms, colonoscopies and MRIs (80 percent).  Nine in 10 people agree that someone with cancer should be able to remain enrolled in Medicaid all the way through treatment and follow-up care.

Additionally, more than 80 percent of Americans say they oppose charging older people more for their health coverage (89 percent) or allowing insurance companies to charge more to cover those with pre-existing conditions (84 percent).

The survey of 1,098 adults was conducted June 15-18 by PerryUndem research.

ACS CAN Encourages Governors to Voice Concerns over Proposed Cuts to Medicaid

On June 5, ahead of scheduled calls between a select group of governors and Senate leadership, ACS CAN sent a letter to state leaders detailing concerns about proposals to dramatically reduce Medicaid funding that would threaten safety nets for the nation's most vulnerable; allow medical underwriting that could reintroduce discrimination based on health history; waive minimum essential benefits requirements that guarantee coverage for cancer prevention and treatment; eliminate steady funding streams that subsidize affordable health coverage; and institute continuous coverage requirements that could discriminate against those who cannot work due to illness or who have to take leave to care for a loved one.

ACS CAN offers comments on state medicaid waivers

ACS CAN submitted comments expressing how proposals to Medicaid programs in three states create significant barriers to care for low-income Medicaid enrollees, particularly enrollees who are cancer patients and survivors.

Arkansas, Wisconsin, and Maine have sought waivers from the Centers for Medicare and Medicaid Services (CMS) to take alternative approaches to expanding eligibility for their state Medicaid programs, as provided under current law. CMS must approve all Medicaid waivers before they can be implemented. Recently, Arkansas submitted a proposed amendment to their Arkansas Works demonstration waiver at the state level that would eliminate coverage for enrollees with incomes between 101 to 138 percent of the federal poverty level (FPL). This would result in loss of coverage for a significant number of Arkansans who rely on the Medicaid program for health care coverage, including cancer patients and survivors. In addition to the eligibility reduction, Arkansas is also requesting to implement work requirements and lock-out periods on enrollees, as well as waive retroactive and presumptive eligibility determinations. These policies can be onerous for cancer patients who are often unable to work during treatment. Similarly, Wisconsin submitted a proposed amendment to their BadgerCare demonstration waiver at the state level that would require cost-sharing and limit Medicaid eligibility for certain enrollees, create lock-out periods to receiving care, require drug screenings and/or testing, and require certain enrollees to participate in work requirements or job training programs to remain eligible for health care coverage. ACS CAN expressed concern that these proposals would hinder cancer patients' ability to access the care they need for their treatments. Finally, Maine submitted a demonstration waiver application at the state level that would require enrollees to participate in work requirements or community service (that are often not appropriate for cancer patients), require cost-sharing for certain enrollees, require asset limitations for eligibility, create lock-out periods to receiving care, and waive retroactive and presumptive eligibility determinations for the program.

State & Local Advances

  • The California legislature and Gov. Jerry Brown reached an agreement on how to spend $1.2 billion in new revenue for Medi-Cal from Proposition 56, the tobacco tax approved by voters in November 2016. Gov. Brown had wanted to dedicate all the revenue toward the state's new share of costs for Medi-Cal expansion under the Affordable Care Act, while the California Medical Association wanted all the funds to go toward increasing Medi-Cal provider rates. The compromise allocates roughly half of the funding toward provider rate increases.
  • The Nevada legislature passed and Gov. Brian Sandoval signed four bills that will approve access to care in the state. Those new statutes include:
    • Prohibition against shifting drugs up to a higher drug formulary tier during a plan year for certain health plans;
    • Expansion of the Office of Minority Health to include health equity;
    • Biosimilar substitution authorization for prescription drugs; and
    • Increased access to clinical trials by minorities and other diverse community groups.
  • Colorado Gov. John Hickenlooper signed a step therapy prevention bill into law. The new law prohibits an insurance carrier from requiring that a covered person undergo step therapy and requires that the carrier provide coverage for a prescribed medication that is part of the carrier's medication formulary.
  • A synchronized prescription refill measure will go into effect in Texas on Sept. 1. Synchronized prescription refills adjust the refill dates on multiple medicines and allow patients to pick up all prescriptions at a single visit. Doing so measurably increases adherence to one's medication regimen. The Texas measure allows for prorated copays for partial refills.


ACS CAN leads Capitol Hill briefing on cancer prevention

ACS CAN continues to actively advocate for strong Congressional support for cancer research and prevention funding on various fronts. On June 15, ACS CAN held a Capitol Hill briefing on the various ways cancer prevention efforts funded by the Centers for Disease Control and Prevention (CDC) impact the fight against cancer and finding cures. The briefing was moderated by Rich Wender, MD, chief cancer control officer of the American Cancer Society and attended by congressional staff members, health care professionals and cancer advocates.

The three panelists included breast cancer survivor and ACS and ACS CAN volunteer Debbie Pearsall, YMCA Senior Director of Health Partnerships and Policy Katie Adamson and Board Member for the National Cancer Registrars Association Nadine Walker. Each of the panelists discussed the critical importance of prevention, survivor support and data collection and analysis.

Through direct lobbying and grassroots engagement, ACS CAN continues to push back against the administration's proposed cuts to cancer research and prevention funding. We expect the House Appropriations Committee to begin its process of moving its FY 2018 Labor-HHS Appropriations bill as early as mid-July. The bill will likely include less overall funding than the FY17 version of the bill, but it remains unclear how the committee will navigate its fiscal challenges.

Throughout the summer, ACS CAN grassroots advocates will meet with their representatives when lawmakers return home for Congressional district work as well as the month-long August recess.

ACS CAN supports efforts to develop an Office of Patient Engagement at FDA

On June 12, ACS CAN, joined by over 80 other organizations, submitted a letter providing support and feedback to the U.S. Food and Drug Administration (FDA) regarding the creation of an Office of Patient Affairs.  FDA had sought input from stakeholders on creating a centralized office that that would help coordinate the increasing opportunities for patient involvement at FDA.

ACS CAN has long worked to increase the role of patients at FDA and was successful in writing the Patient Representative program into law in 2012. The Patient Representative Program gives patients (who have been through training and cleared of conflicts) a seat at the table when FDA meets with drug sponsors to decide whether drugs or medical devices should be approved. The comment letter encouraged FDA to build upon these past advances, avoiding creation of duplicative offices that serve similar purposes, while adding more services like helping patients with expanded access requests. 

State advances

  • The Nevada legislature and Gov. Brian Sandoval have approved state funding of $1 million over two years, for Women Health Connection, the state's breast and cervical cancer care program. Nevada has never previously provided state funding for the program in its 20-year history.
  • The Cancer Prevention and Research Institute of Texas received full funding of over $300 million annually for 2018-19. Ninety percent of the funding is earmarked for research and 10 percent is earmarked for prevention and early detection. A separate measure extends the institute's sunset review date from 2021 to 2023.


Corrective statements

In 1999, the DOJ sued the nation's largest cigarette manufacturers and tobacco trade organizations in the U.S. District Court for the District of Columbia ("District Court"), claiming civil fraud and racketeering violations under the Racketeer Influenced and Corrupt Organizations (RICO) Act. After more than a decade of litigation, the deadline has passed for all final appeals on the content of the corrective statements required in USA v. Philip Morris et al. Judge Gladys Kessler has entered an order and memorandum with these statements. Once final, the statements will appear in television and radio ads as well as in package inserts and on industry websites. The tobacco industry must use this final text for the corrective statements.

New youth tobacco data supports continued funding for CDC tobacco prevention and control

 On June 15, the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) released results of the National Youth Tobacco Survey. The data reveals a decrease of tobacco use in recent years among youth in grades 6-12. In 2016, 3.9 million middle school and high school students used tobacco products, down from 4.7 million students in 2015. Youth use of electronic cigarettes declined from 5.3 percent to 4.3 percent for middle school students and from 16 percent to 11.3 percent for high school students.

State & Local Advances

  • The San Francisco, California Board of Supervisors unanimously passed, and Mayor Ed Lee signed, what is believed to be the strongest law in the country limiting sales of flavored tobacco products. The law, which will take effect April 1, 2018, prohibits sale of all flavored tobacco products, including menthol, anywhere in the City and County of San Francisco. The San Francisco law is already being viewed as a model elsewhere, and two other Bay area jurisdictions—the City of Oakland and Contra Costa County—are debating similar ordinances.
  • Texas has three new local smoke-free ordinances that include e-cigarettes in Hidalgo, La Joya and Del Rio. In addition, the city of Austin expanded its existing smoke-free ordinance to include e-cigarettes.  


ACS CAN-led annual Patient Quality of Life Coalition (PQLC) Lobby Day brings more than 90 advocates to DC

On June 28, the Patient Quality of Life Coalition (PQLC) held its fourth annual Capitol Hill Lobby Day. The PQLC is an ACS CAN-led coalition of over 40 patient, provider and research organizations with a shared goal of advancing the interests of patients and families facing serious illness, and providing greater patient access to palliative care services. This year, nearly 90 volunteers from all over the country participated in over 90 meetings, including 25 member-level meetings. Three ACS CAN volunteers from Washington, Kansas, and Indiana participated in the lobby day. Volunteers called on their members of Congress and senators to cosponsor the Palliative Care and Hospice Education and Training Act (PCHETA). If passed, PCHETA would ensure health professionals are better trained in palliative care, establish a national campaign to inform patients, families, and providers about the benefits of palliative care, and increase NIH research funding of palliative care. Currently, PCHETA has 131 bipartisan cosponsors in the House, including 25 members of the House Energy and Commerce Committee. In the Senate, PCHETA has seven cosponsors, including three members of the Health Education Labor and Pensions (HELP) Committee. The House Energy and Commerce Committee, and the Senate HELP Committee have jurisdiction over the legislation.

State activity

  • Texas has removed the automatic four-year sunset for the state's palliative care advisory council which was established in the 2015 legislative session.


ACS CAN responds to nutrition labeling delays

Menu Labeling

On May 4, the U.S. Food and Drug Administration (FDA) announced a one-year delay in the compliance date for menu labeling, to May 7, 2018.  Menu labeling had been scheduled to take effect on May 5, 2017.  In addition to the delay, FDA also requested comments on several potential changes that would weaken the menu labeling requirements, which were initially required by the Affordable Care Act and finalized through regulations in December 2014.

ACS CAN released a press statement and submitted comments to FDA, opposing the delay in implementation and any changes to the menu labeling requirements that make it more difficult for people to access and use the information to make better choices when eating out.  ACS CAN has supported requiring menu labeling in a consistent, easy-to-understand format in chain restaurants and similar retailers throughout the legislative and regulatory process.  Providing people with useful information that supports their making healthy choices can help to prevent the one on five cancer cases caused by poor diet, physical inactivity and excess weight.

Nutrition Facts Label

FDA also announced in June its intent to delay implementation of the updated Nutrition Facts Label, which was finalized in July 2016 and scheduled to take effect in July 2018 for large companies and July 2019 for smaller companies.  The updated Nutrition Facts label includes information about added sugars content - which provides additional calories without any nutrients - and makes calorie information larger and more prominent.  ACS CAN released a press statement opposing the delay, the length of which has not yet been announced.  ACS CAN also plans to submit formal comments to FDA opposing any delays or changes to the requirements when the details are officially released.  The updated Nutrition Facts label makes it easier for people to make food and beverage choices that support their eating a healthy diet and managing their weight, reducing their long-term cancer risk.

State advances

  • Michigan governor Rick Snyder is expected to sign a budget package which includes several ACS CAN-supported appropriations measures to increase healthy food access.  The measures include:
    • An additional $125,000 (50 percent increase) for a program to help schools add locally grown fresh fruits and vegetables to their lunchrooms;
    • A $250,000 state appropriation (matched by federal funds) to provide wireless point-of-sale systems for Supplemental Nutrition Assistance Program (SNAP) recipients at farmer's markets; and
    • Authorization language for up to $1.5 million in grants for refrigeration and other equipment to enable corner stores to sell fresh fruits and vegetables. 
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