American Cancer Society Cancer Action Network Massachusetts Ambassador News Massachusetts Ambassador News Fall 2014 ACS CAN Leadership Summit & Lobby Day: Advocating for our issues ACS CAN staff and volunteers from all 50 states took over Washington D.C. for our annual Leadership Summit & Lobby Day September 14-17, 2014. During the jam-packed week, our volunteers participated in workshops to prepare them for our meetings with Congress. Our focus was threefold: ask Congress to increase funding for cancer research through the National Institutes of Health and cancer prevention through the United States Centers for Disease Control and Prevention, increase access to and awareness of palliative care services to improve patient quality of life, and close a costly loophole that is unfairly charging those on Medicare to pay for preventive procedures during a screening colonoscopy. We are happy to report that a number of our members of Congress have already signed on in support of these bills! We will keep you posted on their progress. In addition to meetings on the Hill, a Lights of Hope ceremony took place on the evening of September 16. Each Light of Hope bag represents someone battling cancer or who lost the fight to this deadly disease. Over 15,000 bags were on display, a beautiful (but sad) sight and a reminder that our work is far from done. Volume 2, Issue 4 Interested in becoming an ACS CAN Ambassador? Legislative Ambassadors work closely with ACS CAN staff in support of local, state and federal grassroots advocacy activities within state and federal legislative districts. Ambassadors play an integral role in helping to achieve ACS CAN’s goal to make cancer a top national priority with elected officials throughout the country. Responsibilities include: - responding to and sharing ACS CAN action alerts - recruiting additional Ambassadors and ACS CAN members - Attending ACS CAN and ACS events, including Relay For Life, to promote advocacy and engage volunteers - participate in meetings with your lawmakers - submitting letters to the editor and assisting with other media activities - and more! No prior legislative experience needed! Contact [email protected] to learn more! 1|Page American Cancer Society Cancer Action Network Massachusetts Ambassador News Massachusetts staff had an award winning night! While in Washington D.C., Massachusetts staff received a double surprise with ACS CAN handing out awards to both Grassroots Manager Patricia Mallios and Director of Government Relations & Advocacy Marc Hymovitz. Patricia was given the Grassroots Professional of the Year Award and Marc was given the Alan Mills Award, the highest award ACS CAN bestows on a staff. ACT Lead Carole Seigel recognized for her years of advocacy work At Boston’s Making Strides Against Breast Cancer – the nation’s longest breast cancer walk – longtime ACT Lead Carole Seigel received the well-deserved honor of being awarded the Denise Merrill Fellowship in recognition of her years of dedication to ACS CAN and advocacy. Named after Denise Merrill, a passionate advocate who lost her battle with cancer at the young age of 38, the Fellowship is awarded annually during Boston’s Making Strides Against Breast Cancer event. We’d like to once again congratulate Carole and look forward to another year of working with her in the fight against cancer! 2|Page American Cancer Society Cancer Action Network Massachusetts Ambassador News Fighting back with Making Strides Against Breast Cancer Each October, ACS CAN joins our American Cancer Society coworkers and friends to celebrate breast cancer survivors, honor those who are no longer with us, and raise critical funds in the fight against cancer. Massachusetts organized six Making Strides Against Breast Cancer walks across the state: Boston, Worcester, Westfield, Pittsfield, Nantucket and Barnstable, bringing out tens of thousands of supporters, many of which learned a bit more about ACS CAN and advocacy while participating in the walk! ACS CAN has a presence at each event, talking with Strides participants who stop by our advocacy tent or table and sharing updates and announcements from the stage. We wanted to make our tent areas a bit more interactive and fun at our biggest events and piloted the “ACS CAN Café” in Boston and Worcester. The ACS CAN Café originated at Relay For Life events and turns the tent into a multi-station activity tent, inviting volunteers in to learn more about ACS CAN, sign a petition, share a message with their lawmaker in our photo booth and sign up to be an ACS CAN member. Boston was the first to pilot the ACS CAN Café and it was a huge success, with close to 1,100 petitions collected (at the tent and in the crowd), 60 pictures taken in the photo booth and more than 300 visitors to the tent, all in just a few hours! Boston Mayor Martin Walsh (pictured above) and House Speaker Robert Deleo (pictured on the left) both visited the tent and spoke with our advocacy volunteers about our priority issues. We’d like to thank Mayor Walsh and Speaker Deleo for visiting with us! Please check out a few pictures to from Making Strides Against Breast Cancer events in Boston, Pittsfield and Worcester. 3|Page American Cancer Society Cancer Action Network Massachusetts Ambassador News A Patient Advocate’s Perspective on the 2014 Quality Care and Palliative Care in Oncology Symposia ACT Lead Carole Seigel was asked to author a blog reporting back on her experience at the 2014 Quality Care Symposium and the Palliative Care in Oncology Symposium held in October in Boston. She received a Conquer Cancer Foundation Patient Advocate Scholarship to attend the Symposia. Great job Carole! I was catapulted into the world of cancer when my husband was diagnosed with pancreatic cancer at age 58. He lived for 27 months with a quality of life worth living thanks to his courage and the quality care and palliative support he received at Massachusetts General Hospital Cancer Center. It is critical to note that the quality of supportive care varies widely across our country from comprehensive cancer centers to community hospitals to public and private institutions. I have personally witnessed how every symptom chips away at having a great day when there are too few left and how no symptom is too minor to warrant treatment. For the past 15 years, I have attempted to speak for those whose cancer is too acute or too deadly to allow them to speak for themselves. The Quality Care Symposium followed two tracks. The first dealt primarily with the collection and analysis of data related to safety to translate the findings into actionable initiatives that would positively impact patient safety. Beginning about 30 years ago, the definition of safety began to include quality, in terms of recognizing cancer related symptoms. This second track focused on quality of life and end of life issues, which are key interests for me. There are disturbing measurements describing end-oflife care in this country, such as death occurring in an intensive care unit (ICU) or acute care hospital, radiation in the last 30 days of life, hospice care less than three days from death, chemotherapy in the last 14 days of life, and emergency room visits in the final 30 days. One-third to one-half of cancer patients report that they did not get adequate advice or help for the top three symptoms: pain, fatigue, or emotional distress. There was universal agreement, at least among those present at the symposium, that these measurements are unacceptable, and they define lowvalue care, which is estimated to cost $750 billion annually in the United States for treatment that is not evidenced-based medicine and is unwanted by the patient. The Palliative Care in Oncology Symposium further developed the concepts of patient-centered care and personalized medicine. Key topics discussed were changing the fee-for-service reimbursement model, which encourages overutilization; developing clinical pathways to ensure both symptom management and health utility; focusing on personalized care as evidenced by the NIH Patient-Centered Outcomes Research Institute; encouraging end-of-life discussions that honor advance directives; developing and adopting quality markers to measure outcomes; and defining palliative care more broadly to provide support and symptom management from the time of diagnosis until death, with hospice and morphine having a small but important place in this continuum. Now that palliative medicine is a separate discipline, there is a question of how the specialty will be part of cancer care. Will oncology providers manage supportive care with palliative specialist back-up, or will a team approach develop? Will care be fragmented? Will the science of toxicity be better served if palliative care specialists see cancer patients during the entire trajectory of the illness rather than in extreme cases? This is an interesting crossroad in cancer care, and patient advocates need to weigh in to the discussions by relating their experiences, one by one. Attending an American Society of Clinical Oncology (ASCO) symposium is educational and inspirational. It is humbling to be surrounded by health care providers who are united in their goal to provide the best possible care for their patients and witness their determination to explore new paths, yet hear them admit that at times they have fallen short. This experience energizes me to continue the advocacy and political work I do. 4|Page American Cancer Society Cancer Action Network Massachusetts Ambassador News Ambassador Spotlight: David Dumenigo David has been an active volunteer for ACS CAN for more than a year. Originally from Dighton but currently residing in Needham, David has been a welcome addition to the team and is quick to offer his time to assist with various projects around the state. How did you get involved with ACS CAN? I became aware of ACS CAN after visiting their table at AdMeTech’s annual Prostate Cancer Awareness day at the State House in Boston! Many nonprofit groups were there to gather support for and raise awareness of prostate cancer and Patricia Mallios was there representing ACS CAN and was able to connect me with their advocacy work. In our conversation she explained to me that ACS CAN works to not only raise awareness of various issues but also advocates for legislation at both the state & federal levels. Advocating for issues related to cancer prevention, cancer research, cancer treatment and more. Keeping in touch with Patricia and ACS CAN, I attended a couple volunteer retreats and brought my family to join me at one of the retreats, which was a lot of fun. Since getting involved with ACS CAN, I have volunteered at a couple Relay For Life events, talking with Relayers about advocacy and gathering signatures on petitions asking for support of palliative care services. In September, I attended a meeting with one of the gubernatorial candidates (Independent Evan Falchuk) as part of the Cancer Votes program and was able to ask the candidate how he would address the need for increased access to palliative care services, funding the state’s tobacco control program and regulating electronic cigarettes. I even attended a painting fundraiser this summer! It was been quite easy to stay involved with ACS CAN throughout the year! Why do you think advocacy is important? For me, advocacy is important because it helps to put a voice to a cause. Being an ACS CAN advocacy volunteer has helped me learn and develop what I believe in along with what others believe. It has been a great way to keep current with various legislative issues and the people most affected by these issues. Advocating has helped me learn that listening is just as important as explaining my perspective. Promoting and raising awareness about issues that are affecting not just me but others all over the state, country and world is just one thing I can do to help the common cause. What is your favorite memory or moment as an ACS CAN volunteer? As a member of ACS CAN, there has not been one specific memory or moment that has been my favorite. What has really caught my attention is the commitment and level of involvement that volunteers from all over the state have toward the Relay For Life events and different volunteer events organized by the American Cancer Society and ACS CAN! ACS CAN is in its own way a living and breathing group of people and volunteers. It has also been great to hear people open up about themselves and their families who have battled or are actively battling cancer as I tell them about my story or different ACS CAN campaigns such as palliative care. Tell us a little known fact about you: For my 9th birthday, I received 3 copies of the Lion King – it was the best thing ever! At the time, I didn’t realize I could only watch one at a time! 5|Page American Cancer Society Cancer Action Network Massachusetts Ambassador News Did you Know? The idea for the Great American Smokeout came from Massachusetts? At an event in Randolph in 1970, Arthur P. Mullaney asked people to give up cigarettes for a day and donate the money they would have spent on cigarettes to a high school scholarship fund. Save the Date! ACS CAN Massachusetts Lobby Day Wednesday March 25, 2015 Massachusetts State House Contact ACS CAN Massachusetts Marc Hymovitz Government Relations & Advocacy Director [email protected] 781-361-9661 Patricia Mallios Grassroots Manager [email protected] 508-270-4683 Marc Marc GET SOCIAL with us! Facebook.com/ACSCANMass @ACSCANMA www.ACSCAN.org/MA 6|Page
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