Advocacy in Action: White House Cancer Moonshot Colorectal Cancer Forum Recap


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Welcome to Advocacy in Action, our monthly blog where the Fight CRC Advocacy Team discusses all things advocacy: from important policy updates, to ways to get involved, and behind-the-scenes views on how we make change happen. 

This month we were in the White House on March 10, and we are dedicating Advocacy in Action to a recap with a link to the forum in case you missed it and want to catch up.

On March 10, 2023, the White House hosted the White House Cancer Moonshot Colorectal Cancer Forum to discuss progress and opportunities in colorectal cancer awareness, screening, access, and treatments. It was an incredible opportunity to have the colorectal cancer community, including patients and caregivers, highlighted at the highest levels of government. Fight Colorectal Cancer (Fight CRC) was honored to attend to discuss what this community has accomplished as well as highlight challenges and barriers that remain. 

From day one, the focus of Fight Colorectal Cancer has been to ensure the patient voice is heard. It’s our belief that when leaders see and hear those impacted by their decisions, change occurs. On March 10, we continued to blaze the trail by joining colorectal cancer leaders, advocates, and industry partners at the White House Cancer Moonshot Colorectal Cancer Forum.

This forum continued to build on efforts that began in July 2022 when Fight CRC brought together a diverse group of stakeholders at the White House to discuss their common goal – to prevent and ultimately live in a world without colorectal cancer. Collaboratively, we are the catalyst that will continue to make significant progress against this deadly disease.

Catharine Young, White House Cancer Moonshot Colorectal Cancer Forum

Keynote Speakers

The meeting started with a welcome from Catharine Young, PhD, Assistant Director for Policy and Engagement for the Cancer Moonshot, whose mother is a three-time colorectal cancer survivor, and Andrea Palm, Deputy Secretary, U.S. Department of Health and Human Services (HHS). Palm discussed the importance of working across government agencies to increase colorectal cancer screening in all communities, as well as the importance of making up those screenings that were missed during the pandemic. Danielle Carnival, PhD, Deputy Assistant to the President for the Cancer Moonshot and Deputy Director of Health Outcomes at the White House Office of Science and Technology Policy, shared remarks about the Cancer Moonshot goals, and the progress made.

NBC News Anchor, Craig Melvin, shared his experience with his brother, Lawrence, diagnosed with stage IV colorectal cancer in 2016. Lawrence passed away at age 43 in December 2020, and Melvin has used his platform to be an advocate for the colorectal cancer community ever since. 

Finally, singer, artist, and colorectal cancer caregiver, Simone Ledward Boseman, shared her personal story of love and loss of her beloved husband, Chadwick Boseman. She spoke about the seemingly glamorous life they were living publicly, while privately they were navigating not only the challenges of cancer treatment, but also the fear that his health condition would become exposed and a topic of tabloid gossip. 

“He was 39 – 11 years away from what at the time — would have been his first regular colon cancer screening.”

–Simone Ledward Boseman

Boseman shared her frustration and heartbreak of not knowing about the impact of colorectal cancer on Black men and women, not knowing what to look for, and that a simple test could have potentially saved his life. She stressed how important access and information is to saving lives. 

Panel 1: White House Cancer Moonshot Colorectal Cancer Forum

Panel 1: A Discussion on Access to Colorectal Cancer Screening (45:14)

The first panel was moderated by Brooks Bell, an early-age onset colon cancer survivor, CDC Foundation Board Member, and Lead from Behind Founder, and focused on colorectal screening and prevention. The panel included the following speakers:

  • Anjee Davis, MPPA, President, Fight Colorectal Cancer
  • Lisa Richardson, MD, MPH, Director, Division of Cancer Control and Prevention, Centers for Disease Control and Prevention 
  • Karen Knudsen, MBA, PhD, Chief Executive Officer, American Cancer Society and American Cancer Society Cancer Action Network 
  • Michael Sapienza, Chief Executive Officer, Colorectal Cancer Alliance 

Key themes that emerged throughout the discussion were the importance of focusing on health equity and working with local communities to inform and engage people to get screened. Broad awareness campaigns are important for reducing stigma tied to colorectal cancer, but one person telling their story is so powerful for activating someone to action and screening. People want to see real people who have had the same issue or know someone who has. 

"We must tackle the second leading cause of deaths in our country and hold our leaders accountable to investing in this cancer because we have to be able to provide access to care for all. We can do that by leveraging the power in this room. We need a long-term investment in access to quality of care.”

–Anjee Davis

There was agreement among the panelists that all screening modalities have the potential to save lives and so we need to work to educate the public to not only raise awareness but also help them understand their options. 

Dr. Richardson emphasized the importance of going into the communities to learn what people need. Learn what language they speak and the words that are important to them. Meeting people where they are is crucial. Equally important is addressing the barriers to screening such as providing paid time off for a colonoscopy or potentially having a screening site during non-traditional hours to allow people to navigate their work schedule.

“There’s great research out there that shows if you only offer a FIT test, if you only offer a colonoscopy, people will walk away. Because they want choice. They want to do the thing that they feel is best for them, and what they need to do. So in our programs [at the CDC], that’s what we do.”

–Dr. Lisa Richardson

The panelists also discussed the importance of including primary care physicians in the process of determining what a person’s screening plan should look like based on age and family history. They also discussed the importance of optimizing electronic health records to better support the screening process.

Panel 2: White House Cancer Moonshot Colorectal Cancer Forum

Panel 2: Improving Access in All Communities (1:13:40)

The second panel was moderated by Candace Henley, CPN, 20-year colorectal cancer survivor diagnosed at age 35, and Chief Surviving Officer and Founder of the Blue Hat Foundation. The panelists, who discussed how to address disparities in colorectal cancer, included:

  • Matthew McCurdy, Co-founder and President, BLK Health
  • Fola May, MD, MPH, Assistant Professor of Medicine and Director of Quality Improvement in Gastroenterology, UCLA
  • Jim Mccrae, MA, MPP, Associate Administrator, Bureau of Primary Health Care Health Resources and Services Administration
  • Elmer Huerta, MD, MPH, Director, Cancer Preventorium, MedStar Washington Hospital Center 

Dr. May spoke about the difficulties facing federally qualified health centers (FQHCs), which provide care for people who are of low income or may lack insurance. She explained that FQHCs are often not part of an integrated health system, and therefore, sometimes struggle to connect patients to gastroenterologists when they need a colonoscopy. While stool-based screening tests are useful tools, if a patient receives an abnormal result, they require follow-up with a colonoscopy to complete the screening process.

“We are at a rapidly changing landscape for colorectal cancer, not only in who it’s presenting and how, but also the technologies that are about to hit the stage. So if we don’t consider equity as we roll out those technologies, we will worsen disparities.”

–Dr. Fola May

McCrae explained that when the funding for FQHCs is increased, it’s because the health centers were able to measure and show impact. Additional funding can help support extended hours and provide additional resources to the communities. 

The importance of community engagement was at the heart of Dr. Huerta’s remarks. Dr. Huerta works within the Latino community, and he said that 30 years ago, most of his patients were solely treated with chemotherapy and passed away because they were too advanced to be cured by the time they came to his clinic. By speaking about prevention and screening, and meeting people where they are in their communities, Dr. Huerta was able to increase the number of patients who were screened for colorectal cancer. 

BLK Health serves as a translator of information and also partners with community organizations who can deliver messages to communities in a way that is meaningful to them. McCurdy gave an example that a message to Black people living in Houston, Texas, will be different from a message to Black people living in Atlanta, Georgia.

 “We know that when information comes out, it comes out at a certain level. But low-income communities and underserved communities of color often miss information. … How do we get information into the hands of people that actually need it?”

–Candace Henley

The panel also discussed the importance of including rural areas, LGBTQ populations, and persons with disabilities in discussions around health equity. Dr. May emphasized the need for improved metrics and data collection. Focusing on the LGBTQ community: We do not have numbers, and we do not measure gender identity. Currently information about gender identity and sexual orientation is not collected on government health forms, clinics or hospitals. Unless we have metrics to support that there are differences and disparities, we cannot find and disseminate solutions. For rural populations, access to high quality care is a challenge. Patient navigation is crucial in underserved populations since a patient navigator could guide someone through tests or screening, talk them through the prep process, and assist them with access to treatment and care.

Panel 3: Advancements in Targeted Treatments (1:41:53)

The third and final panel was moderated by Nilo Azad, MD, Co-Leader, Cancer Genetics and Epigenetics and Developmental Therapeutics, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, and panelists discussed opportunities for improving treatment options for colorectal cancer patients. The panel included: 

  • Arif Nathoo, MD, CEO and Co-Founder, Komodo Health
  • Phuong Gallgher, President, Colon Club; Research Advocates Training Support (RATS) Program Manager, Fight CRC; and stage IV, 15-year rectal survivor diagnosed at age 29
  • Elad Sharon, MD, MPH, Medical Oncologist, Cancer Therapy Evaluation Program, National Cancer Institute
  • Cathy Eng, MD, FACP, FASCO, Professor of Medicine; Co-Leader, VICC Gastrointestinal Cancer Research Program; David H. Johnson Chair in Surgical and Medical Oncology; Co-Director, GI Oncology; Director, VICC Young Adults Program; Co-Chair, NCI Gastrointestinal Steering Committee, Vanderbilt University Medical Center

Dr. Nathoo spoke about how real-world data is integral to patient health care because it presents an opportunity to look at the composition of a population and to see the entire journey of a patient. Dr. Nathoo noted when you do this on a large scale, it becomes impossible not to see the level of disparity with colorectal cancer and having that data makes it possible to drive intervention. 

Dr. Sharon discussed his work in early drug development at the National Cancer Institute and acknowledged that although there has been great work to date on colorectal cancer, more work needs to be done. He highlighted that there have been decades of missed opportunities of doing more to alleviate side effects, such as peripheral neuropathy in patients. There is a need to use the information from clinical trials and electronic records to better drive innovation in cancer.

Dr. Eng spoke about her work in conducting clinical research with a focus on early onset colorectal cancer. Dr. Eng discussed the importance of personalized medicine (precision oncology), but acknowledged that one of the challenges is that it requires us to break colorectal cancer down into small subsets requiring many patients to be screened to identify those who could potentially benefit from enrolling in clinical trials. To get patients to enroll in clinical trials is also a challenge so we need to do more to make it easier for patients to participate, since less than 10% of patients enroll in clinical trials. Telehealth was mentioned as a way to be able to work with patients to give them access to participate in clinical trials. 

Gallagher spoke about leveraging technology, such as telehealth, to help increase access to clinical trials and care by helping patients “cross state lines.” This was used successfully during the COVID-19 pandemic, but now the emergency provisions have ended, many of these flexibilities are going away. Another challenge for patients to enroll in clinical trials is affordability. If patients cannot get reimbursed for the cost of time lost from work and travel, many may not be able to participate in clinical trials. All patients deserve access and affordability to quality care and clinical trials.

Dr. Sharon spoke about ways to innovate so more patients could participate in clinical trials. Currently NCI brings clinical trials to patients in their local communities through cooperative groups. Finding the right clinical trial for patients could lower costs, increase access, and improve outcomes. 

The panelists also discussed the importance of educating patients about clinical trials and dispelling myths about clinical trials being a “last resort.” By educating patients through conversations, Gallgher pointed out that doctors could increase enrollment, retention, and screening (for potential participation) for clinical trials. Gallagher also noted that clinical trials tend to be thought of in terms of “saving my life,” so trials that are not directly lifesaving but could improve quality of life tend to get lost. 

Finally, the panel closed out by discussing what they would do with $5 billion dollars. Ideas included democratizing access to data to help people get to better treatment, faster; to highlight the disparities and address them; to share across public and private institutions and to do it for patients; getting into the communities and providing support throughout the patient journey with navigators; government PSA campaigns normalizing discussion of colon and rectum health; learning more about circulating tumor DNA; and greater reimbursement for NCI-sponsored studies to engage more institutions with the NCI and CDC clinical trials process. 

What’s Next

The forum concluded with remarks from Danielle Carnival, PhD, Deputy Assistant to the President for the Cancer Moonshot. She thanked the participants saying, “I heard a lot of progress, heart, and hope. But I also heard a lot about how much we have left to do.”

Dr. Carnival charged everyone to “focus on how the world must be different when we come together again next March as part of Colorectal Cancer Awareness Month to have made our precious time together here worthwhile.” 

And Fight CRC plans to do just that

One thought on “Advocacy in Action: White House Cancer Moonshot Colorectal Cancer Forum Recap

  1. Very helpful information to help us fighting Colocrectal cancer in malawi as we work with women and girls in local communities. More important is working and targetting with/the marganlised groups.

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