Cancer Advocacy: How You Can Make a Difference for Patients & Families

Individuals and organizations make a big difference when it comes to getting members of Congress to co-sponsor bills or submit requests for appropriations. If you missed our conversation on November 30 detailing ways you can be an advocate for cancer patients and families, read the highlights below and join us for our next guided discussion January 20, 2022.
December 3, 2021

Individuals and organizations make a big difference when it comes to getting members of Congress to co-sponsor bills or submit requests for appropriations. We talk with BrandiLee Sawyer, the Advocacy Director for the SHEPHERD Foundation, and Phylicia Woods, JD, MSW, Executive Director of the Cancer Policy Institute, Cancer Support Community, about why they are so passionate about cancer advocacy, and how you can get involved. Read the highlights below and join us for our next guided discussion January 20, 2022.

John Richter (G2G Consulting):

I want to thank everyone for coming to this amazing conversation about advocacy and how individuals and organizations really make a big difference when it comes to talking to members of Congress and why it's so important for getting members to co-sponsor bills or submit requests for appropriations. Most members of Congress and their staff won't know that they have constituents that want this unless constituents reach out and ask for it. We are really excited to be here today with two amazing panelists. With that I'm going to throw it over to BrandiLee and Phylicia to do a quick introduction of themselves and why they are so passionate about cancer advocacy.

BrandiLee Sawyer (SHEPHERD Foundation):
Finn Schafran, 3 years old

I am the mother of three boys, Gavin, Everett, and Finn. My youngest son, Finn, battled a very aggressive and rare cancer called rhabdomyosarcoma. He was diagnosed in 2016, and he battled for two and a half years. He went through relapse after relapse, and major surgeries, and a ton of chemo, a ton of radiation. His second surgery was so invasive, in order to get clear margins he actually was unable to walk.

I share all of that because the cancer community knows how awful cancer treatment is, and I just wanted to let you know that I'm with you and I see that, and I have lived it and experienced it. I know that it's hell on earth.

Tragically and very devastatingly, Finn died after his third relapse just shy of his 4th birthday, which was December three years ago. I always say I gained my advocacy voice when Finn died. I did not want what he went through to be lost or in vain. I wanted his perseverance and the journey that he went on to be heard and to be known, and to allow everybody to learn from the harsh reality that he went through and the places where we can improve in cancer treatment.

I try not to be incredibly negative, because it's very easy to be that way when you're a bereaved parent. I'm trying to see it in a light where we can make a difference, and that's why I resolved after Finn died to make a difference.

Phylicia Woods (Cancer Support Community):

Thank you, BrandiLee, for talking about your story. You know, cancer advocacy is all about personal stories, and it's all about making the connection of a personal story to advocacy and creating policy. I'm Phylicia Woods, Executive Director of the Cancer Policy Institute at Cancer Support Community.

Our organization is guided by our mission to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. We are focused on psychosocial well-being of patients and look beyond just the physical symptoms to what affects patients, caregivers, and their loved ones. So looking at mentally, emotionally, financially, and so forth. We're the largest professionally led nonprofit, with 50 affiliate partners in over 175 locations throughout the country. Specifically, we provide and deliver a comprehensive menu of personalized and essential services at no charge to anyone diagnosed with any cancer and to his or her loved ones.

CSC proudly and boldly uses our three pillars — patient services, insight, and advocacy — just to serve our community through engagement and public policy and advocacy at both the federal and state levels. We've become a leader in advancing the evidence phase and promoting patient-centered public policies to ensure that the patient voice is at the center of the national dialogue.

Just like BrandiLee, I have my own personal stories of why cancer advocacy is so important to me. Having families members who have battled with cancer, and some who have survived and others who have unfortunately succumbed, I know the importance of a collective voice, and that's how you really elevate and lift public policy to ensure that the people who policy makers are trying to better serve are actually better served.

JR:

Tell us a little bit about your background and some of the work that started your path in cancer advocacy.

PW:

I started off working on the Affordable Care Act, which really helped to educate me on why we needed better access to treatment, and it led me down a path of advocacy. Working on the Hill, I got to hear from different patient groups about what was important and what needed to be included in the legislation, and oftentimes my member would say we need to work on this part of the legislation to make sure patients have increased access, or an increase of innovation, and an increase of therapies and treatments.

I remember talking to my grandmother about the ACA and saying, well this would be helpful for you. And she's like, well then you need to work harder and work smarter to get this through. I'm like, I can't bend the arms of the legislators! But that advocacy work helped me with reaching out to patient groups and hearing their personal stories, just how they talked about their day-to-day of not being able to afford treatments. We would sit and go through the policies and say, well this would be helpful for this population, but what can we do for the collective? And that's why the ACA was such a high success, and continues to be. I believe that the collective voice really moves the needle.

I believe that the collective voice really moves the needle.
JR:

BrandiLee, can you talk about why we are here today and why advocacy is so important? When we started working together, it was not something that you were really familiar with, but you really great when talking to members of Congress and their staff. You've been able to explain how you've understood why advocacy on Capitol Hill is so important?

BLS:

For me personally, advocacy wasn't anything I thought about. I used to hate politics, and I kind of roped all politics into one lump thing that I was learning in high school. It was overwhelming and seemed too convoluted for me to understand or ever want to get involved in, because I didn't think I would ever make a difference with the matters I cared about or that the majority of people cared about. Embarrassingly, I wouldn't even do my research when it came time for elections. I think it's important to point that out because there are a lot of people like me who feel like maybe we're not smart enough to understand it, or our vote's not going to matter.

It couldn't be farther from the truth. Every single person makes a difference, whether you're calling and writing a letter, whether you're going to Capitol Hill, you're sending an email — it's all of the individual people who are collectively joining together to let their voices be heard. If you are not contributing your voice to that, then that's one fewer person that Capitol Hill is hearing from.

Every single person makes a difference, whether you're calling and writing a letter, whether you're going to Capitol Hill, you're sending an email — it's all of the individual people who are collectively joining together to let their voices be heard. If you are not contributing your voice to that, then that's one fewer person that Capitol Hill is hearing from.

Because of Finn's death, one of the gaps in the system that I saw was molecular diagnostics at the time of diagnosis. Through a friend of a friend I got connected to David Hysong, the CEO and founder of SHEPHERD, and I reached out to them for treatment options for Finn. They were a very new biotech at the time when Finn was still alive. So they didn't have anything for his particular cancer at the time, but we stayed in contact and just a mother's pleas to David, days before Finn died I told him, "I'm not a scientist, I'm just a mom, but I need to make a difference, because this cannot keep happening."

We get to this point where our loved one dies or they're left with these debilitating health effects after their cancer treatment. Cancer treatment is so harsh, so barbaric. We just have to do better.

It was therapeutic for me to share Finn's story, and that felt good to let his legacy live on, to know that I was making a difference to sit in the offices of these legislators or their staff. Those ladies and gentlemen are some of the hardest workers you'll ever meet, and they were taking notes, they were in tears, and they became passionate about what we were asking them and advocating in regards to our bill and the molecular diagnostics.

The only way we're going to make a difference is if we all join together and all let our voices be heard for the legislation and matters that need to be addressed.

JR:

Thank you so much, BrandiLee.

I know she was talking about particularly molecular diagnostics, and I want to pull up a bill that SHEPHERD has worked on with Congress. It's taken a long time, advocating for the bill, making changes so it would be introduced in a bipartisan manner and get as much support as we can. I'm using this as an example of what are in bills and how we can advocate for bills.

The Cancer Patient Equity Act (H.R. 5377) was recently introduced in a bipartisan manner in the House by Congressman Butterfield, a Democrat from North Carolina, and Gus Bilirakis, a Republican from Florida.

Right now there are about 400 forms of cancer. 380 of those are rare. That makes about 95% of all cancers rare. And a lot of these cancers lack an FDA-targeted therapy. A lot of times that is because we just don't have the research on that particular type of cancer. We don't have the cell lines, we don't have the diagnostics for that particular type of cancer. Molecular diagnostics are really important in guiding the treatment options, allowing us to get more precision medicine options, or understand better what the drivers are — what will work and what won't work.

Private insurance rarely covers molecular diagnostics, and Medicare, Medicaid and CHIP will only cover it for a select number of cancers at first diagnosis (ovarian and breast cancer). They will cover them for all at second diagnosis, but by that time the patient has already gone through chemotherapy or radiation, which could change the molecular makeup of that tumor or cell, so molecular diagnostics at this point misses the initial drivers of that patient’s cancer, which is vital to assessing the best treatment and advancing our understanding cancer subtypes and future therapeutic development.

What H.R. 5377 does is require Medicare, Medicaid and CHIP to mandate coverage for these molecular diagnostics at first diagnosis. This coverage would provide a critical component to ensuring accurate diagnosis and enabling next-generation targeted therapies for patients, particularly for cancers without a modern standard of care, robust clinical trials or therapies that may provide more hope. Many times, private insurances will then cover these diagnostics once Medicare and Medicaid and CHIP cover these.

The Cancer Patient Equity Act (H.R. 5377):

Molecular Diagnostics:

Mandates coverage for molecular diagnostics at the time of diagnosis for patients on Medicare, Medicaid and CHIP

  • Molecular diagnostics are a critical component of providing accurate diagnoses and enabling the use of next-generation targeted therapies.
  • That information is especially important for cancers without modern standards of care, where clinical trials and targeted therapies may provide more hope for an improved outcome than typical chemotherapy and radiation regimens.
Education and Awareness:

Coordinates an education and awareness program on genetic testing

  • This bill will create an education and awareness programs in coordination with the Department of Health and Human Services and the Director of the National Human Genome Research Institute for physicians and the general public on what genomic testing is, how it is used, and the role of genetic counselors.
  • It will also encourage the inclusion of the importance of molecular diagnostics at diagnosis and reoccurrence of cancer during graduate medical and continuing medical education.

To hear more about the Cancer Patient Equity Act of 2021 (H.R. 5377) and other cancer-related legislation, please watch the full recorded webinar below or on our YouTube channel at youtu.be/RnciAjfyUEI.

To get involved, check out the Cancer Advocacy Toolkit provided by SHEPHERD Foundation at rarecancertoolkit.com, and register for our next conversation January 20th at 7:00pm ET on our Events page here.