Home Blog Advocacy Blog Colorectal Cancer Survivor Advocates at the White House Colorectal Cancer Survivor Advocates at the White House August 23, 2022 • By Fight CRC Advocacy Blog Share on Facebook Share on LinkedIn Share on Twitter Copy this URL Share via Email Paula Chambers Raney didn’t wake up one morning thinking, “Today’s the day I will become an advocate.” Instead, advocacy came to her following a colorectal cancer diagnosis in January 2015. Seven years later, on July 25, 2022, Chambers Raney had the opportunity to go to the White House to speak as a survivor and advocate on behalf of the entire colorectal cancer community. In February, President Biden relaunched the Cancer Moonshot and issued a call to action to prioritize progress on cancer screening and to ensure that all Americans benefit from advances in cancer prevention. Fight CRC convened a group of colorectal cancer patient advocacy and business leaders to answer that call in which all of the stakeholders chose to unite to support efforts that speak to their shared commitment to helping increase access to colorectal cancer screening for all Americans. Fight CRC, which carries patients and survivors at the heart of all they do, extended the invitation to Chambers Raney who reflects – with much emotion, passion, and gratitude – about the opportunity to attend, and the importance of telling her story to the people who can make a difference in the care, treatment, and outcomes for people with colorectal cancer: Those sitting at the White House table with her. Facing a Colorectal Cancer Diagnosis Back in 2015, when Chambers Raney was newly diagnosed with colorectal cancer, she thought her story was unique. But as she has shared her story through the years, Chambers Raney has come to find out that her story, unfortunately, is the story of far too many people. For more than a year before her diagnosis, Chambers Raney experienced signs and symptoms, and she spent too much time and money at doctor’s and specialist’s offices, and urgent care trying to get to the root of what was causing her – sometimes discomfort, but frequently – unmanageable pain. When Chambers Raney finally landed in the ER for the second time in a week, one of the doctors suggested a scan, which until then hadn’t been done. The scan revealed a large mass in her colon. Now facing a colorectal cancer diagnosis, Chambers Raney was in a dark space: She didn’t have health insurance, and she was afraid she was going to die. The hospital helped Chambers Raney sign up for the Affordable Care Act (ACA) after she had received emergency care and her surgery. Ironically, if her cancer was stage IV, Texas automatically would have granted disability and healthcare coverage. Because she was diagnosed at stage III initially, Chambers Raney was ineligible for financial assistance. The hospital told her there was nothing they could offer to help her. They directed her to apply for emergency services, which fresh out of surgery, she was unable to do. In 2015, same-sex marriages were not recognized in Texas, so her wife, Lara, was unable to apply for financial assistance in Chambers Raney’s place as she healed from surgery. Together, they were frustrated that their 30 years together meant nothing legally, and as a result, they were unable to get financial assistance. "We didn’t know what we needed until one of us couldn’t work. One of the hardest things about going through this was having to ask for help." –Paula Chambers Raney Chambers Raney and Lara were legally married in Texas in summer 2015, when the Supreme Court ruled in favor of same-sex marriage. At that point, Chambers Raney was able to get covered through her wife's insurance. “We have a $7,500 deductible, which I meet almost every year. It's hard to catch up financially, but we are grateful for the life we have. We know it could have gone a different way,” said Chambers Raney. From Houston to the White House On July 25, 2022, Chambers Raney’s colorectal cancer story came full circle. In 2016 when then-Vice President Joe Biden and Dr. Jill Biden introduced the Cancer Moonshot, Chambers Raney and her wife Lara were invited to a luncheon in Houston to be part of a launch event. Chambers Raney could never have imagined that just a few years later, she would be invited to a seat in the White House as part of the reignited Cancer Moonshot. In her own words, Chambers Raney recounts her journey from patient to advocate, and why she feels so passionately about making sure what happened to her doesn’t happen to other people. 5 Things That Paved Paula Chambers Raney’s Way to the White House 1. Getting Connected to Fight Colorectal Cancer My introduction to Fight CRC came after my surgery in January 2015, when I attended a conference. Healing from surgery, walking with a cane, and feeling traumatized by all I had been through, I met a beautiful strong woman, who introduced herself as Candace Henley. After meeting Candace and hearing her story, I was so inspired by her. She works with many organizations. She started her own organization called the Blue Hat Foundation. She inspired me to get involved in Houston. Paula Chambers Raney and Candace Henley: September 2021, six years later I met people online and talking about my experience was very helpful. I met other colorectal cancer survivors who looked like me; who were my age; and who had the same issue: Nobody believed them. Nobody listened to them. They were misdiagnosed. They were told they were too young for colorectal cancer. I met one person after another with this same story. When I found myself in this community, I knew that I wanted to do more. We were all fired up about what had happened to us. And we saw people were dying. I knew I had to do more. Candace told me about Fight CRC, and I intended to go to Call-on Congress the following year. Then I was invited to serve as a Fight CRC Ambassador. I looked up Fight CRC’s website, and I was like, ‘Yes!’ What Fight CRC does is exactly what I am interested in.’ When I saw that Fight CRC went to Washington, D.C., I realized the opportunity to speak with senators and members of Congress, and I could share my story about what happened to me when I was diagnosed with colorectal cancer so young. I could also speak about how much the ACA meant to me: The need for coverage for people like me in a country that has so much. No one should fall through the cracks. 2. Taking Advocacy to a Whole New Level Fight CRC works with the top doctors. They talk to the people in charge. They talk to the people that hold the purse strings, and Fight CRC is nonpartisan. Fight CRC gave me training in 2018. When Fight CRC gave me training, it took my advocacy to a whole new level. Fight CRC has taught me so much – not just about my advocacy – but about the way that I interact with people on a daily basis. There has to be a point where we come together and talk. There has to be a point where we can sit down at a table and hash things out. 3. Getting a Seat at the Table Nothing has made an impact on me like being in that room on Monday, July 25, 2022, in Washington, D.C. There are songs about having a seat at the table. And I had one. But it wasn’t for me. That day was not about me: It was for everyone who is with us now and who has passed within the colorectal cancer community. Somebody asked me if I was nervous that day, and I said I was nervous every single day up until that day. I didn't even sleep the night before. I brought notes to the table. But when it was my turn to speak, I said a prayer, and I said, ‘Speak through me, all my friends I have lost, all those people who have lost their mom, or their brothers or their sisters. What do you want these people at the table to know? Because right now I’m going to say it for you.’ And that's what I did. I was not nervous, and I got these wings with the help of Fight CRC. They really have prepared me for this, and I’m forever grateful. 4. Sharing My Story Things happened very fast. I was working on hosting the Houston Climb for a Cure, and I received a call asking me to join Fight CRC at the White House, and I said, ‘Yes! This sounds like an amazing opportunity!’ And then I said, ‘Let me talk to Lara.’ Lara said, ‘Do you know what you’re about to do?’ I told Lara, ‘I am very clear on what I need to do, and I am absolutely the right person to do this.’ What I am doing is sharing my story. This is what happened to me. I don’t have to exaggerate. I don’t have to make it flashy. I don’t have to tone it down. This is what my experience was, and everyone at the table needed to hear it. I knew that I could do this with the strength of doing this for everyone who can’t. I am so glad I said, ‘Yes!’ At no time, did I think about saying, ‘No.’ My mentor, Candace Henley, has made it very clear to me that when it is your time to speak, if you have faith, you will rise to the occasion. My life was spared. What happened to me — in my opinion – was a miracle. I never believed in miracles before. I could have taken it and said, ‘I’m done. I’m done with cancer,’ and walked away. And that’s OK. That’s totally OK to do. I know people who have done that. They are too fatigued by fighting cancer and losing people they love. People have to do what keeps them healthy and sane. But I knew I could do this. So I did. I came to the White House, and I took my seat at the table as a survivor advocating for all the people who couldn’t physically be there, as well as those who have passed away. And I will continue to advocate. 5. Get Started Advocating Today There's so much more work to be done. I wonder if I said enough, and can I do more? I know There's some more I can do – more we can all do – but it had to start somewhere. And I'm glad it started. I thought advocates had to be a certain type of person: a ‘goody two-shoes’ or 'do-gooders.' I thought advocates were people with a lot of money that made large donations to charity, or that I needed to have a lot of money to make an impact as an advocate. I thought I needed a Rolodex filled with names and phone numbers of people to call. I never realized an advocate could be a regular lady like me. I’m not exactly poor, but I don’t have a lot of money. But I do have everything I need. I know my rights. I know the laws. I know who my representatives are in my town and state. But I am a regular person, and I was scared. I wondered, ‘Who’s going to listen to me?’ I’m also a little goofy. I wondered if I could be serious. I thought there was a certain type of person that became an advocate because they were people who were listened to.I was wrong! My story is what happened to me, and it was a problem – and it still is a problem – that needs to be addressed. Unlike European countries, if we, Americans, get sick, and we cannot financially cover our bills, we will go broke. We don’t have a safety net in place. That is a real problem. It doesn’t matter who you are or where you come from. In this country, you deserve health care; you deserve to be treated with dignity and respect; and we have the resources. Our country has the capability, but it’s not being done. We can do better. We must do better. Recently Olivia Newton-John passed away from breast cancer. She was a 30-year survivor. How can someone living in the U.S. maintain survivorship, the cost of treatments, and the debt that comes with living with cancer for 30 years? We deserve better. I thought advocates were pious and high up on a hill. But an advocate is a regular person. I needed to be authentic and unafraid to share what happened to me. If you are those things, then you can be an advocate. As an advocate and at the White House, my goal is to make sure that everyone has access to screenings, and that when they get screened, if there's something wrong, they can get the care they need. This is what I’ve learned: When we come together, and we help each other: We can do anything! Learn more about Fight Colorectal Cancer's advocacy work, and sign up to be an advocate.