August Monthly Call Agenda. Attendees: Teerith, Shahil, Steve, Carol, Emily, Abha, Jan, Marisa, Nancy, Dottie, and Melissa

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1 August Monthly Call Agenda Attendees: Teerith, Shahil, Steve, Carol, Emily, Abha, Jan, Marisa, Nancy, Dottie, and Melissa Federal Update: How Do You Measure Up? The latest edition of ACS CAN s annual report, How Do You Measure Up?: A Progress Report on State Legislative Activity to Reduce Cancer Incidence and Mortality, was released to the public on August 9. Now in its 16th year, the report rates states on the strength of policies, including smoke-free workplace laws, tobacco taxes, funding for tobacco prevention and cessation programs and cessation coverage under Medicaid, funding for cancer screening programs and indoor tanning restrictions for minors. The report also looks at whether states have accepted available federal funds to increase access to care through their Medicaid program, passed policies to increase patient quality of life, ensured patients who need oral chemotherapy drugs have the same access to them as they would to intravenous chemotherapy and adopted balanced approaches to provide access to pain medications. New this year is a special section, Hanging in the Balance, that each year will take a deeper dive on an ACS CAN priority issue and offer new data to support our work. This year we released our State Pain Report Card within this section, which evaluates state pain policies to see how well these bills balance the need to curb opioid abuse while maintaining access for cancer patients and survivors dealing with chronic pain who need these drugs to maintain their quality of life. Massachusetts scored 17 out of 24 possible points, telling us we have done great work in this area, but there is still more we can do. A color-coded system is used to identify how well a state is doing on the nine priority issues measure in the report. Green represents the goal position, showing that a state has adopted evidence-based policies and good practices; yellow indicates moderate movement toward the goal; and red shows where states are falling short. Massachusetts ranks 2 nd in the country, meeting benchmarks or is green in 6 out of the 9 categories. California is 1 st with 7 out of 9 categories in the green. We are green in Increased Access to Medicaid, Access to Palliative Care, Cigarette Tax Rates, Smoke-Free Laws, Medicaid Coverage of Tobacco Cessation, and Indoor Tanning Device Restrictions. We are yellow in Pain Policy and red in Breast & Cervical Cancer Early Detection and Tobacco Prevention Funding. The report indicates that while there has been some progress on implementing legislative solutions to prevent, manage and treat cancer, in almost every state, legislatures are missing opportunities to enact laws and policies that would save more lives. By passing the proven policies laid out in this report, state lawmakers could improve survival rates and reduce long-term health care costs that could be reinvested back into state economies. Appropriations Both the U.S. House and Senate Appropriations Committees have been diligently working to complete consideration of their Fiscal Year (FY) 2019 Labor, Health and Human Services, Education and Related

2 Agencies (LHHS) Appropriations bills. Although the bills have some differences in funding levels, they both make progress in funding for cancer research and prevention programs. The full House Appropriations Committee approved its Fiscal Year (FY) 2019 LHHS Appropriations bill on Wednesday, July 11. The House bill includes an increase of $1.25 billion for the National Institutes of Health (NIH), a $171 million increase for the National Cancer Institute (NCI), and level funding for cancer-related programs at the Centers for Disease Control (CDC). The full House vote on the bill is not expected until the House returns to Washington after the August recess. The Senate LHHS Appropriations Subcommittee and the full Senate Appropriations Committee approved that body s FY 2019 LHHS spending bill during the week of June 29. The Senate version of the bill includes a $2 billion funding increase for the NIH and a $190 million funding boost for the NCI. The bill also preserves funding for CDC cancer programs with an additional $2 million going to cancer registries to help track pediatric cancer cases as outlined in the STAR Act, and a $875,000 increase for skin cancer programs. While there is still some uncertainty, the LHHS bill could be paired with the Defense Appropriations bill and voted on the Senate floor sometime before September. The pairing of these bills is intended to increase their likelihood of passage. Just a reminder that Rep. Clark here in MA is a target, and Marisa and the team from CD5 are working on strengthening our relationship with her office. They will be dropping petitions off to her Cambridge office next week to ask her to continue to be a champion for this funding. UPDATE: Last night, the U.S. Senate approved an FY 2019 spending bill today that includes a $2 billion funding increase for the National Institutes of Health (NIH) and a $190 million funding boost for the National Cancer Institute (NCI). The bill preserves current funding levels for the Centers for Disease Control and Prevention (CDC) cancer screening and early detection programs and for the CDC s Office of Smoking and Health (OSH). The bill also provides $2 million for nationwide cancer registries and allocates $875,000 for programs dedicated to reducing skin cancer. Help us thank our Senators by sending them an , thanking them for approving the budget with a $2 billion funding increase for NIH and a $190 million funding boost to NCI. You can also share/retweet our social media posts as well. Senate Votes to Preserve FDA Authority Over Tobacco Products On Aug. 1, the U.S. Senate approved its FY 2019 Agriculture, Rural Development, Food and Drug Administration, and Related Agencies appropriations bill. The bill preserves the Food and Drug Administration s (FDA) authority over tobacco products and boosts funding for FDA s Oncology Center of Excellence (OCE) by $5 million. The OCE was created by the 21st Century Cures Act and works to ensure that the patient perspective is considered in the regulatory decision-making process through a patient-focused drug development program. It also creates a unified and collaborative scientific environment to quickly advance the development of innovative and effective oncology products for cancer patients.

3 Tobacco Control Effective Aug. 1, all public housing agencies in the nation, which includes multi-family and low-income housing, are smoke-free. The change is a result of a U.S Department of Housing and Urban Development (HUD) rule adopted in The new rule prohibits the use of all combustible (burned) tobacco products, including cigarettes, cigars, pipes and waterpipes in all living units, indoor common areas, administrative offices and all outdoor areas within 25 feet of housing and office buildings. Access to Care On July 10, the Administration announced that it is eliminating most funding for organizations that assist Americans in accessing health coverage through the individual insurance exchanges, commonly referred to as navigators. Navigator funding was first reduced in August This second round of cuts will dramatically slash current funding by more than 72 percent, from $36.8 million to $10 million. The Administration is also urging navigators to promote short-term health plans and association health plans (AHPs), which do not offer protections for people with pre-existing conditions like cancer. AHPs and short-term plans have a long history of leaving enrollees saddled with medical debt while also denying coverage for even basic medical care. This action is one of many initiatives by the Administration that will jeopardize access to affordable, adequate health insurance coverage for people with cancer and other serious and chronic conditions. On July 23, ACS CAN joined 189 patient, consumer, and provider organizations in a letter urging the Administration to restore this funding, noting that the Department of Health and Human Services (HHS) has cut funding for outreach and enrollment activities by more than 80 percent since Access to information about coverage options and costs obtained through outreach and navigators positively impacts enrollment and helps families select a plan that meets their health care needs. An elimination of such funding will make it prohibitively more difficult for many to access coverage and will further contribute to the destabilization of insurance markets and result in higher premiums for many enrollees. Interested in attending a Town Hall held by your federal Representative or Senator? Check out and to see when your lawmaker or staff will be in the community. Let Melissa know and she ll provide you with talking points and a question you can ask around access to care. State Update: Access to Care The House and Senate agreed to a conference committee compromise opioid bill. The final bill deals mostly with addiction treatment but also seeks to help patients suffering from chronic pain, including pain due to a cancer diagnosis. ACS CAN supported language was included that will establish a program through which physicians can consult a team of pain-management specialists. The experts will advise them on pain therapies and refer them to local practitioners of alternative treatments. Another provision in the bill will require health insurers to cover the full array of pain treatments, which could include acupuncture, chiropractic and physical therapy to name a few. Before the requirement goes into

4 effect, the Health Policy Commission would study the issue and recommend to the Department of Insurance which therapies should be required. The bill was signed by Governor Baker on August 9 th. Other: Sharing your cancer story As promised in the meeting reminder, I wanted to share with you information on what ACS CAN does with the cancer stories you share. In the reminder for this, I shared a Story Collection Tool that we have online for volunteers and advocates to share their cancer stories with us. The stories you share with ACS CAN are vital to moving the mission of ACS CAN forward, the same way you sharing your story with your lawmakers is vital to impress upon them the importance of supporting policies that impact the lives of cancer patients. ACS CAN takes the stories you share and reviews them, and enters them into our story bank. It sounds weird right? But if you think about it, that is how we are able to respond to lawmaker requests for stories. To find volunteers to speak at Lights of Hope. Or volunteers to participate on press conferences about access to care, or in an ad campaign about palliative care. By taking your stories, and saving them by topic, we are able to have examples at our finger tips about why closing the colorectal cancer screening loophole bill is important to those on Medicare. We have a compelling story that is going to stay in the minds of our lawmakers when they are talking with their colleagues on the hill about the college student who survived a testicular cancer diagnosis his freshman year when the same diagnosis 20 years ago would have killed him. There are times the media reaches out to us and asks us for stories. We also go to our story bank during those times, and before we share a story, we reach out to you to make sure that you re comfortable with us sharing your story with the media. The choice is always yours, and you can tell us no. Your story has an impact and sharing it in writing with ACS CAN will help us make that impact reach farther. Think about how cancer has touched your life. How have you or those you love been impacted by cancer? Why are you here, volunteering with ACS CAN? Take some time and share your story with ACS CAN. Lights of Hope The American Cancer Society Cancer Action Network (ACS CAN) will be honoring those who have been touched by cancer and remembering those lost, with a Lights of Hope ceremony during the 2018 Leadership Summit and Lobby Day in Washington, D.C. Lights of Hope bearing the names of those touched by cancer will line the Lincoln Memorial Reflecting Pool during the evening of September 25, 2018 in an experience to fight back against cancer at the Nation s Capitol. You have a unique opportunity to participate by either selling bags or making a contribution to honor or remember a loved one with a Light of HOPE. If you are interested helping support the work of ACS CAN through fundraising, this is an easy way to do it. Let me know if you d like a kit to get you started. Bags are only $10 each and are an easy way to raise funds to support our mission. Making Strides Against Breast Cancer There are 3 Making Strides Against Breast Cancer walks in MA this year. Making Strides is a 1-3 mile walk that where participants raise funds. ACS CAN is asked to have a presence at each event. This

5 year s events are: Boston on September 30 Worcester on October 14 Cape Cod on October 14 All 3 walks are looking for volunteers to come to the event for 2 to 3 hours and asked participants to sign a petition for increased funding for cancer research at the federal level. We will give you talking points and provide all the materials. If you are interested/available to attend and help out, please let me know. Patti Morris is leading the planning for the Boston walk, and I will be coordinating the other two walks. Massachusetts Summit Save the date! On October 20 th ACS CAN will be hosting a volunteer summit. We will be inviting all current ACS CAN volunteers, as well as anyone who might be interested in becoming a volunteer. The focus of the day will be on celebrating our 2018 wins and looking at the year ahead. We ll take a deep dive into some of our state and federal issues, as well as give you tips on being a year-round advocate. Next call Due to Leadership Summit and Lobby Day, we will not be holding a September call. Our next call will be October 25 at 6:30pm. The call-in number is +1 (917) and the passcode is #.

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