National Colorectal Cancer Roundtable: 80% in Every Community
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By Faye Wong, MPH
In 2015, working with CDC’s Colorectal Cancer Control Program became deeply personal when my sister-in-law died of colorectal cancer. Jan was age 56 when she died and she had been diagnosed with stage 4 colorectal cancer two years earlier. Like millions of people age 50 to 74 years, Jan had never been screened for colorectal cancer; in fact, she was in the age group (50 to 54 years) with the lowest U.S. rate of screening. Her colorectal cancer could have been prevented or detected early, when treatment is more effective. Jan could have been alive today.
CDC works to reduce the number of people that get colorectal cancer and the number of people that die from it through the Colorectal Cancer Control Program (CRCCP), the National Comprehensive Cancer Control Program (NCCCP), and through participation in the National Colorectal Cancer Roundtable (NCCRT).
The National Colorectal Cancer Roundtable (NCCRT)
In 1997, CDC and the American Cancer Society established the National Colorectal Cancer Roundtable. This group is a national coalition of public, private, and voluntary organizations along with invited individuals dedicated to promoting colorectal cancer awareness and screening on the national level.
Join Us on March 7
Fight Colorectal Cancer, the National Colorectal Cancer Roundtable, American Cancer Society, Mayo Clinic, Exact Sciences, and UPS are collaborating to host an event and live broadcast to highlight achievements in colorectal cancer screening and the importance of continuing to dedicate efforts to this goal. The event will take place in Atlanta, Georgia on March 7, 2019. The new campaign, 80% in Every Community, will be launched.
80% in Every Community
NCCRT is working with health departments, community health clinics, health plans, employers, counties, and others to achieve 80% screening rates and higher in every community. But not everyone is benefiting equally. There are still communities with lower colorectal cancer screening rates—rural communities, certain racial and ethnic communities, and low-income communities; many of the unscreened even have insurance. This campaign, led by NCCRT and supported by hundreds of organizations across the country, focuses on bringing down barriers to screening. Everyone deserves to live a life free from colorectal cancer. The collective mission isn’t achieved until we see 80% and higher screening rates in every community.
What You Can Do
- Register to participate in the March event either in person in Atlanta or via the Livestream and tell others about it.
- Connect and participate on social media on Twitter and Instagram with the hashtag, #80inEveryCommunity.
- Post messages that promote colorectal screening, your successes, and your commitment to achieving 80% in every community. Help spread the word that colorectal cancer screening saves lives!
One comment on “National Colorectal Cancer Roundtable: 80% in Every Community”
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3 years ago February 3, 2016. Connor , our 22 year old son called me at work to tell me the doctor had just called him to let him know he had colorectal cancer. Feb 3, 2016 the day our world changed forever.
Fear, worry, anxiety, anger, shock…it all came crashing into us. The next 7 months just an emotional roller coaster of good news bad news, good doctors bad doctors, faith, hope, soroow, despair. All ending in a parents worst nightmare only not a nightmare but a lifemare. Our reality that our son no longer on this earth and there is nothing we can do to bring him back.
But what we can do is keep his dream alive of helping others. of improving the lives of others. I am now Connor’s voice so he can continue to helping others through his life’s cancer journey. I thought I would share this email that Dr. Dennis J. Ahnen sent me last week.
As a bit of background I met him at my 1st Fight CRC conference in 2017. Dr. Ahnen was one of the speakers at the conference and was in the middle of his talk and acknowledged the increase in early onset crc but he said that it would probably take another 10 years to gather data points to make changes in the future for crc screening in people under 50. I have been advocating for the screening age to be lowered since my dear friend Peggy died in 2004. His statement was so upsetting to me . Since I have been an advocate I have seen, and heard of, and read about so mnay young peoeple that have died as a result of colorectal cancer. So many misdiagnosed due to age. So I stood up very upset and said we do not have time to wait another 10 years. People are dying while you are collecting data points. My 23 year old son is one of your data points. All of the people in this room under 50 they are your data points young people are dying while you are gathering your data points. Something needs to be done now. i was so upset then just started crying …..he then found me after the meeting and wanted to know more about Connor. I shared Connor’s story of misdiagnosis and other young ones that I knew of that had been misdiagnosed. And that was our encounter.
So a couple of weeks ago he reached out to someone to find my contact info. When he contacted me I sent him the write up of Connor’s journey that is on gofundme. Part of it has the letter Connor wrote to get into grad school for public health.
This is what Dr Ahnen wrote me back…and he said I could share this.
” Hi Carleen- ….. Like Conner when he said “For most of my life I have wondered if I have ever made a difference or if it is even possible for one person or a group of people to make a legitimate difference at all.” many of us wonder if we have or can make a difference and I want to let you know that you have.
I think of our meeting at the Fight CRC Call on Congress a couple of years ago often and I wanted you to know that your direct challenge has made a remarkable difference. At the conference, I was shaken by both the stories and the challenges put forward and afterwards took and even more careful look at the USPSTF guideline and the supporting documents and focused on their decision-making around the starting age for CRC screening and particularly whether their modeling analysie took into account the rising incidence of early onset CRC (EO CRC); it didn’t. When Fight CRC asked me what they might do to address the rising incidence of EO CRC, I suggested that they might ask the modeling experts used by the USPSTF to redo the modeling using up to date incidence and mortality rates for CRC under the age of 50. Fight CRC coordinated with the ACS to get this modeling re-done and this new evidence was the major reason the ACS changed their recommendation to start average risk CRC screening from age 50 to age 45. You should know that you had a direct effect on making this happen.
I know that this change would not have prevented Conner’s CRC but it is an important change as about half of all EO CRCs occur in the 45 to 49 year old group and wide adoption of the new ACS guidelines would have a large beneficial impact. The other things that are important to advocate for right now are improvements in the collection and use of cancer family history to identify high risk families and individuals who should start screening earlier and for both providers and patients to know that CRC needs to be in the differential diagnosis of all patients with rectal bleeding and other unexplained GI symptoms and prompt workup of needs to be initiated. Also in this regard, Fight CRC is sponsoring a workshop focusing on trying to figure out what is causing the rising burden of CRC in the young.
I just thought that you should know how impactful you have been in this effort and that you are “one person” who has made a legitimate difference.
All the best to you and your family”
here is what I responded back to him
“May I share this letter in the colorectal cancer world to let people know that their stories and advocacy can and do make a difference. When I stood up in that room in 2017 and stated that we do not have time to wait another 10 years for date to be collected, that all of the people in the room were data points….my son, those people they give me the strength and courage to stand up and speak and I would like them to know that they all make a difference. ”
I want to share this with all of you. Our young peopel are dying. currently I am in communication with moms of 18, 24, 23, 27, 32 year olds. All gone way to soon. No parent should watch thier child suffer being cut from sternum to pelvis. Watch poison being pumped through theri veins. Thankfully our stories contributed to the change in the age for colorectal cancer screening and
together we are all making a difference. And at times we may be the only one standing to challenge the system but if the right person really listens and if the right person actually takes action then Maybe just maybe sooner than later no other parent will have to hear the words “Mom the doctor says I have colorectal cancer”
Thank you and love to all
Carleen and Connor