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!
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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!
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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.
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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.
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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!
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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
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