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ACS CAN Monthly Advocacy Update


New ACS CAN Report Details Common Patient Barriers to Cancer Clinical Trial Enrollment

On April 11, ACS CAN released a new report which examines the most common patient barriers to cancer clinical trial enrollment. The report, Barriers to Patient Enrollment in Therapeutic Clinical Trials for Cancer, detailed that only about one in four (27 percent) patients has access to clinical trials where they are being treated; yet if asked to enroll in an available trial, more than half of eligible patients typically agree to do so.

The report is meant to serve as a resource to inform discussion and actions aimed at addressing the barriers preventing patient participation in clinical trials and is accompanied by a set of 23 consensus recommendations endorsed by 15 organizations. These organizations range from patient advocacy groups, provider societies, medical institutions and the research industry.

ACS CAN, Other Patient Advocacy Groups Share Patient Perspective During Meeting with HHS Deputy Secretary  

On April 17, George Blough, West Virginia ACS CAN volunteer and Keysha Brooks-Coley, ACS CAN vice president of federal advocacy and strategic alliances, joined other patient advocacy groups at a meeting with U.S. Department of Health and Human Services (HHS)  Deputy Secretary Eric Hargan. Other participants included representatives and patients from, the American Heart Association, Juvenile Diabetes Research Foundation, the Leukemia and Lymphoma Society, the National Alliance on Mental Illness and the National Health Council.  

Representatives from the organizations were invited to share their perspectives on public policy issues on which HHS is actively working which include the rising cost of prescription drugs, affordability of health insurance coverage, value-based healthcare and the nation's opioid crisis. This was an important opportunity to articulate key cancer public policy goals for our mission and to engage with the administration.  

ACS CAN Files Comments on Short-Term Proposed Rule

On April 20,  ACS CAN filed comments in response to the Administration's proposed rule that would allow for the proliferation of short-term, limited-duration (STLD) plans. Currently short-term plans are only available for up to three months and are intended to fill brief gaps in coverage. The proposed rule would extend the availability of these plans up to 364 days and provide an option for indefinite renewability, allowing them to function like permanent health insurance without having to follow most of the permanent plan rules.  In our comments we expressed significant concern with extending the duration of STLD policies because these products are exempt from important consumer protections, such as prohibitions on lifetime and annual dollar limits, limits on the use of pre-existing condition exclusions, and the prohibition on medical underwriting. These protections are key to ensuring that individuals with cancer (including those in active treatment and survivors) have access to quality health care needed to treat their disease. Without these protections, individuals could find themselves enrolled in policies that fail to provide coverage of medically necessary services. Our comment letter urged the Administration to withdraw the proposed rule unless the needs of the patient community have been met.  

ACS CAN also led efforts to engage other organizations to weigh in with HHS Secretary Alex Azar, and joined more than 100 organizations representing patients, providers, and consumers to express concern with the proposed rule.

State & Local Activities

  • In Mississippi, an ACS CAN-supported medication-synchronization bill passed, benefitting patients by allowing them to synchronize all their prescriptions to be filled on the same date each month, eliminating the need for multiple visits to a pharmacy and improve a patients' ability to adhere to their required medications. This measure was signed into law by Governor Phil Bryant.
  • Gov. Scott Walker of Wisconsin signed the ACS CAN-supported biosimilars bill. This new law allows for biosimilar substitution at pharmacies and puts in place appropriate notification and safety requirements.
  • ACS CAN has endorsed a Utah ballot measure to expand access to health care through Medicaid. Signature collection has been completed and the measure has qualified for the November ballot.


Court Orders Tobacco Companies to Place Product Warnings on Packaging and Websites

Under a court order issued May 1 in the U.S. District Court for the District of Columbia, tobacco companies must soon publish statements on their websites by June 18 and on cigarette package inserts by Nov. 21 that tell the American public the truth about their deadly and addictive products.

The court order is another important step in holding the tobacco companies accountable for decades of deception and wrongdoing and ensuring the public knows the facts about the deadly consequences of smoking and secondhand smoke. The case began when the Department of Justice sued the tobacco industry for violations of fraud and racketeering laws in 1999. The American Cancer Society and other public health groups intervened and became parties to the case in 2005. In 2006, U.S. District Judge Gladys Kessler issued a landmark judgment that industry had violated civil racketeering laws and lied to the American public for decades about the health effects of smoking and their marketing to kids. This order further implements the "corrective statements" the tobacco companies were first ordered to make by Judge Kessler in that judgement. Last November, the tobacco companies began disseminating the corrective statement through advertisements in newspapers and on the major television networks during primetime. The newspaper ads ended in March and the television ads will end in November.

State & Local Activities

  • The City of Los Altos, California passed a smoke-free ordinance that includes outdoor dining, service areas, public events and city-owned vehicles.
  • Voters in the Town of Basalt, Colorado passed a ballot measure to impose a local tax on cigarettes of $2 per pack, and a tax on other tobacco products, including e-cigarettes, of 40 percent of the retail price. The resulting revenue is dedicated to local health, addiction and tobacco prevention needs. Also, the Basalt Town Council unanimously passed an ordinance restricting the sale of tobacco products to adults age 21 and over.
  • ACS CAN helped defeat an effort in Connecticut which would have added a tobacco surcharge option to health insurance plans sold on the state exchange in 2019.
  • The City of Buhl, Idaho implemented a smoke-free parks ordinance.
  • In Illinois, with passage of ordinances in Peoria and Aurora in the past month, 23 municipalities with a total population of more than 4.4 million now have ordinances prohibiting the sale of tobacco products to anyone under the age of 21.
  • Nebraska's governor, Pete Ricketts, signed a budget package with an increased appropriation of $500,000 for the state's tobacco control program.
  • New York's Rockland County has become the 19th state locality to pass legislation raising the legal age of tobacco purchase to 21. Once this measure goes into effect in July, nearly 67 percent of the state's population will be covered by Tobacco 21 laws.
  • The Akron, Ohio City Council passed an ordinance prohibiting the sale of tobacco products to anyone under the age of 21.
  • In Oklahoma, ACS CAN defeated a legislative attempt to send a resolution to the voters that would have redirected tobacco settlement payments away from cancer prevention, tobacco cessation, and cancer research programs as originally intended and enacted by a state-wide vote in 2000. 


Childhood Cancer Advocates Urge More Research Funding

On April 24, ACS CAN staff and volunteers joined fellow members of the Alliance for Childhood Cancer for its seventh annual Childhood Cancer Action Day on Capitol Hill. The annual event serves to elevate pediatric cancer as a priority issue for Congress.

Advocates met with their representatives in Congress, shared personal stories and urged passage of the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act. TheSTAR Act, the most comprehensive childhood cancer bill ever introduced to Congress, would expand funding for childhood cancer research at the National Institutes of Health (NIH) and the National Cancer Institute (NCI). The bill would also better track childhood cancer rates and work to improve the quality of life for survivors.

In March, the U.S. Senate passed the measure and ACS CAN and our partners are working to ensure the U.S. House votes to pass the legislation as well.

In late 2016 the American Cancer Society and the Alliance for Childhood Cancer released a joint report "Translating Discovery into Cures for Children with Cancer: Childhood Cancer Research Landscape Report." The report marked the first time that statistics and information about childhood cancers were brought together with a critical analysis of challenges and opportunities related to pediatric cancer prevention and treatment.

State & Local Activities

With Gov. Kay Ivey's signature of Alabama's 2019 budget, ACS CAN successfully secured a $116,500 funding increase for the state's Breast and Cervical Cancer Early Detection Program. This brings a total of $500,000 allocated to the program serving low-income uninsured and underinsured women


Activities in the States

  • The governor of Kansas, Jeff Colyer, signed an ACS CAN-supported palliative care bill into law. The new law establishes an advisory council to bring together experts – including health care providers and patients – to address barriers to palliative care and to identify innovative solutions. It also creates a consumer and professional information program to help families and health care providers understand the benefits and opportunities available through palliative care. 
  • The South Carolina Legislature has sent an ACS CAN-supported palliative care bill to Gov. Henry McMaster's desk. The measure creates a task force to evaluate the state's needs and offer solutions to improve quality of life. 
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