Advocacy in July – The March Momentum Continues

by Emily White, Advocacy Manageradvocates-stakeholder-meeting

Our team spent three days last week in the hub of Washington, D.C. and stirred things up a bit!  We were joined by four of our amazing grassroots advocates: Jovannie Lorenzo (NJ), Patti Hollenback (PA), Bunny Terry (NM) and Debra Merritt (LA).

Our schedule was so jam-packed with meetings that our staff had to split up in order to be so many places at one time!  Although we spent much of the trip apart, we all came together for one very important meeting on July 16—the 80% screened by 2018 stakeholder meeting that we co-hosted with the American Cancer Society Cancer Action Network (ACS CAN).

We’ve listed a few highlights from our trip below:


The first meeting on the agenda was the monthly Cancer Leadership Council (CLC) meeting. Along with numerous other cancer organizations, Fight Colorectal Cancer attends this meeting each month to receive updates and weigh in on issues affecting all cancers. The highlighted topic of this month’s meeting was insurance pathways and their effects on cancer patients. WellPoint is an insurer implementing pathways that has incorporated a somewhat controversial physician bonus structure system. The council hosted speakers Jennifer Malin, MD, Ph.D., the Medical Director for Oncology for Care Management at WellPoint, Inc, and Joan S. McClure, MS, Senior Vice President of Clinical Information and Publications for the National Comprehensive Cancer Network (NCCN).  Both speakers shared their organization’s role and positions on how to best create treatment guidelines for oncology practices. This is a tremendously complicated and complex issue, many of the leading cancer organizations are trying to discern the best way to balance the rising costs of cancer care while ensuring that the best interests of patients are at the forefront of these development pathways for treatment. Because we know that colorectal cancer will be one of the first groups of cancer impacted by the development of pathways, Fight Colorectal Cancer is actively engaged in addressing the issues that will directly impact our community.


advocate-training-80by2018This meeting was organized by our friends at the Colon Cancer Alliance to answer two questions that all of us in the world of colorectal cancer are working hard to answer: “Why are colorectal cancer patients getting younger,” and, “What can we do to stop it?” The Never Too Young Coalition is a task force of colorectal cancer organizations built to conduct research on the rise of young colorectal cancer patients and to educate the nation on this growing trend. Young adults are the fastest-growing demographic diagnosed with colorectal cancer, yet there are no guidelines in place for earlier screening. In a room of survivors, caregivers, community leaders and a medical oncologist, we were able to solidify our goals of research, creating support outlets for young survivors and collecting educational resources for patients under 40 years old from every colorectal cancer organization. There are more meetings to come and more actions to take. However, just as you are “Never Too Young” to be diagnosed with colorectal cancer, it is never too late to spotlight this issue and begin working on a solution together.

Rep. Donald Payne, Jr. speaking about H.R. 1070 on what would have been the 80th bday of his father, who he lost to colon cancer.

Rep. Donald Payne, Jr. speaking about H.R. 1070 on what would have been the 80th bday of his father, who he lost to colon cancer.


Responding to Congressman Payne’s call to use our March momentum year-round, Fight Colorectal Cancer co-hosted a Hill briefing and lobby day with the American Cancer Society Cancer Action Network (ACS CAN) on July 16. Fight CRC and ACS CAN were joined by 40 representatives from 15 organizations in an effort to lobby for policy that will help achieve an 80% screening rate of Americans 50 years and older by 2018.

Our champions from the Hill supported us! We had not one, but THREE members of Congress speak at the meeting, including Rep. Donald Payne, Jr.; Rep. Leonard Lance; and Rep. Charlie Dent. They shared with us how colorectal cancer had personally impacted their lives and voiced their support for the fight against colorectal cancer and 80% by 2018.

Valarie Molaison, Sen. Sherrod Brown’s health legislative assistant, spoke on his behalf sharing his support, along with some very inspirational words for the lobby day. Her words, “United we are strong,” rang true with 15 organizations together working toward a common goal of 80% by 2018.

All attendees voiced support for an effort to fix the loophole in Medicare causing beneficiaries unexpected out-of-pocket expenses. We had nearly 40 congressional meetings to lobby for the two pieces of legislation are in place to fix this issue, H.R. 1070 and S. 2348.

We continue to push to reach 100 co-sponsors for H.R. 1070 and recruit a republican co-sponsor for S. 2348 by August 31. So far, there are 81 co-sponsors for H.R. 1070 (three new ones since our lobby day!), but we still need co-sponsors for S. 2348. You can help us reach these goals by contacting your members of Congress today!  Click here to take action.


The American health care system is driven by technology; everything from physician procedures and patients’ desire for the latest technological advances to the for-profit groups that manufacture devices and drugs. Unfortunately innovation and technology has a heavy tax on our health care system.  The health policy community continues to debate and explore the true benefit of investing in medical technology to reach a decision on whether these upfront investments in innovation save us in the long term by preventing disease, maintaining quality of life, keeping us productive and potentially curing cancer.

At the Advanced Medical Technology Association’s recent meeting, the economic burden of disease was highlighted. The study documents the full costs and broader economic benefits of health care investments by examining innovations pertaining to four common causes of disability and death: heart disease, diabetes, colorectal cancer and musculoskeletal disease. The report considers therapeutics and diagnostic devices that are widely used and have substantially affected the lives of patients as well as the overall U.S. economy. Among the 10 devices or device-based procedures studied are angioplasty, insulin infusion pumps, colonoscopies and joint replacement surgery.

It was reported that from 2008-2010, colonoscopy/sigmoidoscopy screening prevented 560,000 people from developing colorectal cancer, saving the health care system $12.2 billion and allowing Americans to continue contributing to the economy.

For a copy of “Healthy Savings: Medical Technology and the Economic Burden of Disease” by Anusuya Chatterjee, Jaque King, Sindu Kubendran and Ross DeVol, click here.


Staff also attended a meeting on “Understanding the Patient Experience” hosted by a National Patient Advocate Foundation coalition known as REAP, the Regulatory Education and Action for Patients.  The meeting was lead by NPAF CEO and Fight CRC board member Alan Balch and began with a presentation by Dr. Jeff Allen, Executive Director of Friends of Cancer Research of the Food and Drug Administration (FDA).  Dr. Allen outlined the FDA activities that provide opportunities for patient access and involvement in the FDA drug and device approval process.  Specifically he described the FDA Patient Network website and patient representative program.  The FDA seeks input from patients from all disease backgrounds, and provides training on the FDA and its processes. For more information on how to get involved in this program, click here.

The meeting also included several speakers who discussed the current implementation of the Affordable Care Act (ACA) and patient access to treatments.  An overview of the ACA’s exchange plans indicates that costs to patients are generally rising except for low-income, subsidized individuals.  Narrow provider networks, increased cost sharing through rising deductibles, co-insurance, and formularies/pathways are creating barriers to health care due to increased costs. While affordable coverage for those with pre-existing conditions was a huge “win” for cancer patients and survivors everywhere, there are many issues within the ACA that are leading to higher out-of-pocket costs and narrow network coverage for patients. To highlight these issues, Fight Colorectal Cancer is signing on to a letter to the Secretary of Health and Human Services titled I AM (STILL) ESSENTIAL, which outlines the many problems patients are facing due to regulations in place by the ACA.

Fight Colorectal Cancer is closely following how the ACA affects colorectal cancer patients and survivors and will continue to fight for the patient voice to be heard.

It’s a Wrap…

We’re happy to be involved in these types of meetings to ensure patient voices are heard at tables where decisions impacting them are being made. We know March is colorectal cancer awareness month but at Fight CRC, we’re dedicated to a year-round effort where colorectal cancer is made a national priority. Thank you to those who support our fight through donations, sponsorships and advocacy. Your voices were heard on the Hill this month!


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