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Chris Hansen's Monthly Advocacy Update


ACS CAN Hosts National Forum on the Future of Health Care

On April 11, leaders in business, government, advocacy, academia, and public policy participated in ACS CAN's sixth annual National Forum on the Future of Health Care in Washington, DC.

The goal of the day-long forum was to examine the next steps in changing our health care system – with a specific look at what cancer patients need from a health care system.

Experts explored the status of the current health care debate, changes needed to improve access and affordability, market stability, and potential approaches to system change at both the federal and state levels.

In conjunction with the forum, ACS CAN released a new report, The Costs of Cancer, which examines direct costs associated with cancer with a focus on typical out-of-pocket costs incurred by a cancer patient. The report provides the total amount of out-of-pocket costs U.S. cancer patients nationwide pay for cancer treatment and examines three hypothetical patients with different cancers and what each might pay under employer-sponsored insurance, an individual plan and through Medicare. It does not account for indirect costs surrounding a diagnosis (such as lost productivity/work, legal fees, etc.). The report also suggests state and federal policies that could address patient costs.

The report underscores the need for patients to look not only at monthly premiums, but also consider the value of their insurance through the lens of up-front costs, deductibles, out of pocket maximums and the adequacy of the coverage they receive for the cost.

House Republicans Withdraw Bills to Replace Health Care Law

On March 24, Republican leadership in the U.S. House of Representatives withdrew legislation to replace the health care law.

While preserving some patient protections, the legislation would have had the net effect of shifting health insurance costs to low and middle-income patients. And the inclusion of an increased age-rating would have proven particularly burdensome for cancer patients as incidents of cancer increase with age. The legislation would also have significantly reduced the standards of what constitutes quality insurance, curtailed Medicaid expansion and, over time, substantially reduced overall Medicaid funding.

ACS CAN's goal from the beginning has been to urge lawmakers on both sides of the aisle to fix the portions of the current law that are not functioning properly so that it is strengthened and improved in ways that reduce the national cancer burden. We have purposely positioned ourselves as a resource to help federal legislators do just that.  As part of that positioning, our staff and volunteers executed a deliberate campaign to educate lawmakers on the adverse impact certain aspects of the proposed legislation would have had on those with a history of cancer or are at risk.

We elevated the patients voice through volunteer mobilization, media advocacy, social media campaigns, direct lobbying and coalition work, placing a targeted effort on House and Senate members from 15 key states. Our "Keep Us Covered" Campaign placed the voice of cancer patients, survivors and their families front and center of the debate.

In meetings with lawmakers, patient stories were particularly effective at providing the cancer perspective and illustrating how insurance market reforms in the current law provided greater access to preventative screenings and quality comprehensive health insurance coverage.

The morning of March 24, before the legislation was ultimately withdrawn, ACS CAN communicated with Members of Congress about last-minute changes meant to appeal to conservative lawmakers. We expressed our concern that removing the essential health benefits standard requirement would be especially problematic for the cancer community.

Currently, while the House and Senate are in Recess through April 21, ACS CAN staff and volunteers are redoubling efforts to educate lawmakers by attending town halls and scheduling meetings with members in their districts – like this April 11 health care reform dialogue event with Sen. Susan Collins of Maine.

While efforts to repeal the health care law are currently delayed, changes continue to be considered. ACS CAN is closely monitoring developments.

CMS Releases Final ACA Market Stabilization Rule

Late yesterday, the Centers for Medicare and Medicaid Services (CMS) released a final rule aimed at stabilizing the Affordable Care Act's (ACA) individual health insurance market. The rule could impede patients' access to special enrollment periods (SEPs), reduce the number of Essential Community Providers with which plans must contract and decrease the actuarial value of some plans sold in the marketplace—leaving patients susceptible to higher out-of-pocket costs.

ACS CAN submitted detailed comments to CMS March 7, when the rule was first proposed. The final rule, which is largely unchanged from the proposed version, did not address the concerns raised by ACS CAN regarding potential impact on those with a history of cancer.


  • The Arkansas legislature passed a bill that will provide parity in health coverage between oral chemotherapy and IV administered chemotherapy. The legislature also passed a colorectal cancer screening bill setting up a state-wide screening program for underserved individuals. Gov. Asa Hutchinson signed both bills into law making Arkansas the 43rd state with oral chemotherapy parity.
  • On March 1, the Iowa legislature passed a bill allowing pharmacists to substitute interchangeable biologic medications. The measure, signed by Gov. Terry Branstad, met ACS CAN's patient protection standards and there is hope that the substitutions may prove less expensive. The law is effective July 1 and brings the count of states allowing biologic medication substitutions to 23.


President's Budget Proposes Cuts to Cancer Research

The President's budget proposal, released March 16, covers funding for the remainder of the current fiscal year (FY17) and next year (FY18). The federal government is the nation's largest single funder of cancer research and prevention. The budget submitted to Congress would:

  • cut funding of the National Institutes of Health (NIH) by $1.2 billion;
  • scale back programs at the Centers for Disease Control and Prevention (CDC), including funding for state cancer registries and tobacco control, by $65 million this year (FY17);
  • reduce funding to the NIH by an additional $5.8 billion next year, including an estimated $1 billion cut to the National Cancer Institute (NCI); and
  • cut funding for cancer prevention and other chronic disease programs by half and consolidate them into block grants for states.

The proposed cut to the NIH budget for next year would constitute the largest reduction in medical research funding in history. If enacted, these cuts would also wipe out funding for the Cancer Moonshot initiative approved by Congress late last year with strong bipartisan support and the enabled funding in the 21st Century Cures Act. It would, in effect, set the NIH back nearly 20 years and prove disastrous.

The current temporary spending bill expires at the end of April and Congress is working to complete a final FY 2017 spending bill.  ACS CAN's grassroots network has been actively engaged since the budget proposal was released. We are urging lawmakers from all parties to reject these steep budget cuts and sustain critical investment in lifesaving, innovative research and cancer prevention programs by increasing funding for the NIH this year. Roughly 12,000 volunteers have sent more than 36,000 messages to Members of Congress, urging them to protect medical research and prevention funding. Our "#NoCutsforCancer" hashtag has generated 750,000 impressions on Twitter and Instagram. We are also engaging representatives in their home districts during the House and Senate Recess to urge them to protect and expand cancer research funding.

We are particularly gratified that two of the most influential GOP lawmakers, Missouri Sen. Roy Blunt and Oklahoma Rep. Tom Cole, have spoken out against cuts and in support of NIH funding. Sen. Blunt and Rep. Cole each chair the subcommittee with jurisdiction over Health and Human Services appropriations. These key committees set funding levels for the NIH. Both Sen. Blunt and Rep. Cole have made known their intention to press instead for Congress to raise, rather than cut, the institutes' annual $32 billion budget.

ACS CAN continues mobilize and engage representatives in their home districts during the House and Senate Recess to urge them to support cancer research funding.


State & Local Advances

Kentucky passed legislation requiring all state insurers, including Medicaid and private insurers, to cover treatments recommended by the United States Preventive Services Task Force (USPSTF) for tobacco cessation. 

Notable tobacco control measures advanced in other communities as well.


  • Two new local smoke-free ordinances, both including e-cigarettes, recently passed in the cities of Brookshire and New Braunfels, Texas. Even without a statewide smoke-free law, the size of Texas coupled with its number of similar local laws, mean that only four other states protect more residents from secondhand smoke in all workplaces and public places.
  • The cities of West Covina and Benicia, California each enacted a smoke-free parks ordinance. Benicia's ordinance became effective immediately and prohibits smoking in all parks, recreation trails and recreation facilities.
  • Beverly Hills, California strengthened its smoke-free outdoor dining ordinance by adopting amendments extending smoking regulations surrounding open-air dining from 5 to 20 feet and include public rights-of-way such as sidewalks and alleyways.
  • In Pennsylvania, the Allegheny County Council, which includes the greater Pittsburgh area, passed an ACS CAN-backed measure to include e-cigarettes in the county's smoke-free law. The ordinance took effect on March 20.
  • On March 6, Howard County, Indiana passed a comprehensive smoke-free ordinance, including e-cigs, and simultaneously strengthened the existing ordinance in its county seat, Kokomo, by extending to bars and private clubs. The indoor measures were effective April 1, and will extend to events at outdoor parks on July 1.
  • On March 8, the Minneapolis Parks Board passed a policy making all city parks, recreation facilities, and buildings tobacco-free, including e-cigs and other tobacco products. Often ranked as the best city park system in the country, Minneapolis parks cover almost 7,000 acres and host over 21 million visits annually. The measure is effective May 8.


  • Guam currently has the highest adult smoking rate in the United States and its territories. On March 22, Guam's bill to raise the age of tobacco purchase to 21. A unanimous legislative vote was garnered by tireless advocacy of ACS CAN volunteers, including gathering over 1,500 petition signatures and presenting testimony by military veterans. The T21 measure (effective Jan 1, 2018) combined with last year's smoke-free law, should have a dramatic effect on future tobacco consumption.
  • Trenton, New Jersey raised the age of permissible sale of tobacco products from 19 to 21. The ACS CAN-backed measure became effective on March 8. 
  • On April 13, a newly-passed ordinance in Lane County, Oregon will prohibit anyone under age 21 from purchasing tobacco products.


Arkansas Passes Palliative Care Bill

Palliative care legislation which recently passed both legislative houses in Arkansas has been signed into law by Gov. Asa Hutchinson. This new law will call attention to the importance of palliative care by setting up a review committee and providing an outlet for the Arkansas Department of Health to share palliative care resources on its website. 


ACS CAN Hosts Group Effort to End Cervical Cancer Deaths Worldwide

On March 21, ACS CAN hosted a meeting of 23 organizations prepared to participate in an advocacy campaign to end cervical cancer deaths worldwide. The meeting, led in collaboration with Pink Ribbon Red Ribbon (PRRR), examined cervical cancer advocacy efforts to date, wrestled with messaging and approaches to Congress and executive branch agencies, and decided on follow-on actions. Pink Ribbon Red Ribbon, an independent affiliate of the George W. Bush Institute, is a global partnership of national governments, non-governmental (NGO) and multilateral organizations, foundations and corporations with a shared goal of reducing deaths from cervical cancer and breast cancer in low- and middle-income countries. 

Agreeing that cervical cancer should be a part of America's global health assistance program, the group is planning a Capitol Hill Day on April 25 in Washington, DC. Other advocacy actions underway include the circulation of sign-on letters to generate policymaker support and the inclusion of cervical cancer in future discussions with U.S. Government officials. These actions reinforce requests that ACS CAN and PRRR are making to congressional appropriators for specific language to be included in the FY18 State and Foreign Operations appropriations bill.

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