Heather's Hangout

Sharing the people, places & little moments that make a difference.

Getting involved in cancer advocacy August 8, 2017

ACS HOPE lobby day

Hope makes everything worth fighting for. (ACS CAN Lights of Hope ceremony in DC)

After spending a week biking across Iowa with Team LIVESTRONG, raising funds and awareness for their programs and services for people facing cancer, I’m even more ready to work to improve healthcare, increase funding for cancer research and better treatment options, and support people affected by this crappy disease. And the sad thing about this disease’s impact is that there is much more to do. More than 1.7 million people will be diagnosed with cancer this year. It’s estimated more than 600,000 Americans will die from the disease. Too many. Unacceptable.

2

I’m honored to recently be ‘promoted’ in my volunteer role with the American Cancer Society Cancer Action Network to the team lead for my Congressional District. This means that I will be working more closely with our local, state and federal elected officials and their staff. To me, it means that I can help make a more positive difference in the lives of people facing cancer. I’ve enjoyed meeting with the local staff in our district and speaking about ACS CAN at local events. Healthcare is ever-changing today and there never seems to be an end to the work!

2

I’m really excited that I will be joining ACS CAN in Washington, DC in September. Hundreds of advocates will come together to meet with our home state federal officials to ensure cancer research, funding, preventive programs and more remain priorities for Congress. The highlight of the trip will be the Lights of Hope ceremony on the steps of the Lincoln Memorial. Here, more than 24,000 luminary bags will be lit to spell HOPE, a truly symbolic moment in our fight against cancer. Hope is something that I hold deep in my heart for every aspect of life. The luminary bags represent thousands of the cancer survivors and those we lost to cancer (Each bag is only $10. If you’d like to purchase a bag in honor or memory of someone special touched by cancer, click here.).

2

There are many ways for you to get involved in cancer advocacy. It’s as easy as advocating from your home if you want! Sending emails, posting to social media, writing letters to the editors and calling your representatives is easy and makes an important impact. If you think your voice doesn’t make a difference, think otherwise. ACS CAN advocates had the following impact on Congress’ attempts to repeal the Affordable Care Act without a reasonable replacement (since Jan. 2017):

2

–128,000 petition signatures/messages sent to members of Congress
–20,000 new ACS CAN member volunteers registered
–The #keepuscovered hashtag was used 16,000 times on social media (mostly Twitter), earning a reach of more than 42 million.
–30,000 calls were made to Hill offices (since February)

2

That’s quite an impact volunteers made on important issues! I encourage you to get involved in making a difference in the fight for better healthcare for everyone. Here are some organizations that are active in cancer advocacy and that I have experience with:

2

American Cancer Society Cancer Action Network. I believe that ACS CAN is one of the leading organizations advocating on behalf of people touched by cancer. Their influence is far-reaching and makes a positive impact (read the few stats above). There are many opportunities to work for positive change in your state by becoming an ambassador member.

2

LIVESTRONG. Many of the national cancer priorities are also priorities for LIVESTRONG’s advocacy work. Pushing for an increase in cancer research funding and stopping the repeal of the Affordable Care Act are recent actions. I attended the One Voice Against Cancer lobby day the past two years with LIVESTRONG, which was an amazing experience, and made a difference in cancer care.

2

National Coalition for Cancer Survivorship. NCCS works to improve quality of care and quality of life for anyone diagnosed with cancer. The organization advocates for better cancer care, improved research on new treatment options, and self-advocacy.

2

Cancer Support Community. This organization formed years ago when The Wellness Community and Gilda’s Club merged. CSC offers social and emotional support for people facing cancer, caregivers and more. The policy work of CSC often focuses on ensuring that emotional support is an essential part of treatment for the patient, family members and caregivers.

2

Cancer specific organizations. There are a lot of advocacy groups focused on specific cancer. For instance, I follow news from the Sarcoma Foundation of America as it focuses on bone cancers and get involved when needed. This organization works to advocate for increased funding for sarcoma-related research and treatments, as well as educate patients and the public on sarcoma. As a bone cancer survivor, these issues are obviously near and dear to my heart.

2
2

All of these organizations distribute electronic updates and advocacy alerts. At the very least, I encourage you to register to get informed on what’s happening in policy related to cancer. Positive change begins with one person. You can be that person!

 

Advocating with one voice against cancer June 12, 2017

HH_CapitolDCOVAC

Ready to make a difference!

I had an amazing experience last week. I had the privilege, honor and fun of representing LIVESTRONG at the One Voice Against Cancer (OVAC) lobby day in Washington, DC. I joined more than 100+ advocates from 35 states to have over 160 meetings with our legislative officials to ensure fighting cancer is a priority for our government.

2

One Voice Against Cancer is a collaboration of national non-profits delivering a unified message on the need for increased cancer-related appropriations. OVAC has made great strides in getting Congress to increase funding for cancer research and prevention programs. But of course, the work is far from done. Not when one out of four deaths in the U.S. will be caused by cancer. I’ve been fortunate to advocate with several organizations in DC in the past. Last year, I attended OVAC with LIVESTRONG, refreshing my energy and drive to make a difference (read about last year’s experience!). So I was very excited to be selected to attend again.

2

I have always been interested in politics and love advocating on behalf of others affected by this disease. I wouldn’t say that I feel an obligation as a bone cancer survivor, yet I feel so grateful and blessed to be alive that it fills me with a deep satisfaction and I truly thrive in the environment. It’s so empowering and rewarding as a cancer survivor to work with other advocates, our elected officials and their staffs to make cancer research, prevention, programs and healthcare a priority. I have always believed that it take one person to make a positive change and I’m giddy when I think of the tremendous outcomes possible when all of us work together for positive change.

2

Our asks to our legislators included (check out the full details):

  • Support $36.2 billion for the National Institutes of Health
  • Support $6 billion to the National Cancer Institute
  • Support $514 million for the Centers for Disease and Control cancer prevention programs

Two other women from Michigan attended OVAC so we teamed up to attend five meetings with our various senators and Congressmen. All our legislators agreed that funding for cancer research and prevention is critical and also agreed that any slowing or cutting of funds would mean death for too many people. We know this budget process is going to be….challenging, to say the least, so we, of course, will continue to follow with the offices to ensure our representatives stay committed to helping millions of people.

This trip was also a bit poignant for me….last Thursday was 20 years since I started

OVAC_MIstats

Millions of reasons to advocate.

chemotherapy for bone cancer. I can vividly recall being at the hospital, port inserted in my chest and IV drip starting, waiting for the throwing up to begin and my hair to fall out (throwing up started four days later, my hair fell out six days later). To be in DC, almost exactly 20 years later, advocating for other cancer survivors and representing those no longer with us truly felt like a beautiful full circle.

2

One of my favorite pieces of this experience is, of course, the people who also attend as staff and advocates. We all come with our individual stories, whether we’re cancer survivors, caregivers, family members, friends of someone facing the disease. Yet we immediately have this common bond of cancer touching our lives, bringing us together in the fight. Each person’s story weaves into my heart and stays with me as I walk into legislative meetings and after I return home. Many of these people have become good friends, creating those bonds you know will travel long into your life. In these people, I actually smile at cancer because through the tears, sadness, anxiety and stress that cancer causes, I think of these friends and feel joy and laughter. Cancer causes such chaos and the people I meet are the beauty, the anchors to the chaos.

2

I was also honored to be asked to share my cancer story as our send-off speech. My cancer story can’t be shared without sharing my dad’s story, as our treatments and outcomes are forever intermingled. Both my dad and I are examples of the impact of cancer research and treatment. Not so many years before my diagnosis, amputation was a common treatment option. Thankfully, research, better treatment protocols and new technology led to advances in killing tumors and trying limb salvage so that my femur and part of my tibia were replaced with titanium rather than amputated.

2
HHOVACspeech

Sharing my family’s cancer stories

My dad wasn’t given a good prognosis when we received his multiple myeloma diagnosis. However, research and new treatment options kept us one step ahead of his cancer for six years, until there were no more new drugs to try. But I will forever be grateful for those six years with him, precious moments to create so many memories to hold in my heart and mind. I know that he is beside me every time I walk into an office to ask for support.

2

These are a few reasons that I advocate for funding for cancer research and prevention. There are millions more…..more than 1.7 million Americans will hear “You have cancer” this year, and more than 15.5 million cancer survivors will learn to navigate their new normal. Families and friends will say good bye to an estimated 1,645 people a day. So, yes, my friends, there is a lot of motivation to get involved.

2

Attending this year’s OVAC was another wonderful experience working to help others. I never tire of these experiences, for I am alive to celebrate another day. And I believe that each success we have ensures thousands of others will be alive to celebrate too.

2
2

You can get involved helping others touched by cancer too. If you don’t want to attend meetings or go to DC, that’s ok. We need people to send emails, make phone calls, use social media and do many other things too. Check out LIVESTRONG’s advocacy efforts, and the American Cancer Society Cancer Action Network also does a lot of work on state and federal issues.

 

 
%d bloggers like this: