This event brings together volunteer advocates from cancer organizations from around the country to provide an unified voice focused on long-term, sustained funding for cancer research and prevention on the federal level. It’s one of my favorite advocacy events of the year and I’m so honored to be again selected by LIVESTRONG to attend. I joined 97 advocates from 32 states. We attended a total of 142 meetings with our U.S. senators and representatives.
I joined other advocates to ensure there is a strong united voice as we meet with our legislators to keep fighting cancer a priority. Always. There are more than 15.5 million cancer survivors in the U.S. – this is awesome! However, more than 600,000 still die each year from this disease, my dad being one of them. There are an estimated 1.7 million new cancers each year, people who will hear “you have cancer.” This year, I am included in that statistic. Again. My third cancer.
This trip is personal.
My advocacy work has always been personal – diagnosed at 21 with osteosarcoma (bone cancer), melanoma at 27 and breast cancer this year, plus my sister’s bout with melanoma last year and our dad’s death to multiple myeloma. Research and new treatment options impact my family in profound ways.
This year provided a deeper impact for me – I was in DC 17 days post-final chemo and four days before 20 radiation doses begin. I could talk for hours about the impact research and preventive programs have on my current breast cancer diagnosis and treatment options (read this blog post for more details on research’s impact on this third cancer journey).
My situation hit home a bit more when several friends hugged me hello, held on a little longer and said they had been worried I might not make the trip due to chemo. Oh no, this trip was every motivator that I needed to plow through chemo, exercise almost daily between treatments and set a goal. I admit I’m exhausted physically and mentally from this third cancer, and my emotions fluctuate all over as I’m constantly overwhelmed with the situation and then gratitude at the love and support I feel from others. But in some weird way, all of that pushes me to get off the couch and be a better advocate. To help others. This disease needs to end. Fighting cancer fuels my energy and passion. Being an advocate, working with others touched by the disease, meeting inspiring people, seeing positive outcomes – all of this and more bring me lots of joy.
The many voices of cancer
The people I meet at these advocacy events are who bring stories to life, faces to our asks. The beautiful women, a sarcoma and breast cancer survivor, who made up my Michigan team. So many other brave, courageous people sharing their own and others’ voices. Many of these people who touch my life have become dear friends and impact me in profound, special ways. Forever part of my heart. They are the many reasons I use my voice to push for positive change in this fight against a disease that knows no boundaries when it touches someone’s life.
The important asks
We met with our legislators to ask for support of the following:
Support a funding level of at least $41.6 billion in FY 2020 for the National Institutes of Health (NIH)
Support a $6.5 billion budget for the National Cancer Institute (NCI)
Provide $555 million for cancer prevention activities at the Centers for Disease Prevention and Control (CDC), including $70 million for the National Program of Cancer Registries.
Raise the budget cap – without action by Congress, the non defense discretionary budget cap for FY 2020 will fall $55 billion below the FY 2019 level, causing catastrophic funding and program results at the NIH, NCI and CDC.
Advocating is sometimes not for the faint of heart. Many days it feels like protecting people with pre-existing conditions, preventing cuts to research funding, ensuring access to affordable care and more are ongoing battles in today’s political climate.
But as I a reflect on the fact that we had six precious years with my dad when we were originally given three months; when I marvel that I am alive and healthy after three cancers; when I can laugh and hang out with my younger sister after her melanoma diagnosis; when I can appreciate the hundreds of people who have touched by my life since my first diagnosis; and if I can help one person never hear the words ‘you have cancer,’ then it’s worth all of the time, energy, tears and cheers in this fight against cancer.
Your voice can help make a difference too! Contact your state’s federal senators and representatives to ask them to support cancer research and prevention programs. You can also get involved with organizations like LIVESTRONG and the American Cancer Society Cancer Action Network.