Advocacy and policy efforts that support our mission
About our advocacy and policy efforts
As the nation's oldest and largest colorectal cancer patient advocacy organization, we recognize the need for policies that help us in our goal to end colorectal cancer within our lifetime. That’s why we continuously collaborate with scientists at public, private, and government research institutions to fund the critical research that will lead to new drugs and treatment protocols. Our advocacy and policy efforts are focused on finding ways to facilitate treatment, screen and prevent, and fund live-saving research because we believe tomorrow can’t wait.
You can join our efforts by signing up below, and acting when we issue action alerts.
In the interest of transparency, and in alignment with our overarching advocacy and policy goals, we list our position on several current issues. Our position we believe, will help us end this disease in our life time.
Our advocacy efforts currently focus on:
Protecting and expanding access to healthcare
We believe access to affordable health care should be a basic right for all Americans.
Reducing the number of colorectal cancer cases through policies that increase screening rates
We support politics that make screening accessible for all who need it.
Investing in research
We will fund research that results in new treatments, prevention, and a cure for colorectal cancer.
PROTECT AND EXPAND ACCESS TO AFFORDABLE HEALTH CARE
In August 2018 the Administration issued new rules for short-term health policies. These policies are intended to help people keep coverage between jobs. As a way to lower costs the new rules allow insurers to avoid the protections provided under the Affordable Care Act such as requiring coverage for pre-existing conditions. And they are no longer “short.” Previously these plans were only for 90 days, but the Administration now allows these policies to run up to three years. The problem for people with colorectal cancer and other chronic conditions is the siphoning effect. All insurance is based on pooled risk and so if you allow separate plans for people without chronic conditions you siphon away young and healthy people from the risk pool – the result is essentially a high-risk pool resulting in dramatic cost increases for people with chronic conditions. The Colorectal Cancer Alliance calls on the Administration to change the rule allowing insurance companies to deny coverage based on pre-existing conditions in short term polices.
Affordable Care Act
Twenty states have filed a lawsuit claiming the pre-existing conditions protections in the Affordable Care Act are unconstitutional since the individual mandate has been removed. Instead of keeping the Administration’s promise to protect this provision, the Justice Department agrees with the claim and will not defend it. In seeking election this President promised Americans that they would not be denied health insurance based on a chronic condition. The Colorectal Cancer Alliance supports maintaining protections for people with pre-existing conditions in the Affordable Care Act or any future health legislation.
Affordable health coverage
The Colorectal Cancer Alliance believes access to affordable health care should be a basic right for all Americans. Today the health insurance market is in limbo. In 2017 Congress did not repeal the Affordable Care Act, but it has been largely eviscerated through elimination of the mandate and several Executive Orders. Congress and the Administration promised to fix the broken health insurance market and have failed to do so. In 2019 the Colorectal Cancer Alliance calls on Congress to pass legislation enabling all Americans to have access to affordable health coverage.
REDUCE THE NUMBER OF NEW CASES OF COLORECTAL CANCER BY SUPPORTING POLICIES THAT WILL INCREASE THE SCREENING RATE
Screening age recommendations
The American Cancer Society (ACS) has revised their recommendations on colorectal cancer screening by lowering the age at which normal risk adults should begin screening to 45. The Colorectal Cancer Alliance supports this change as data shows that the risk for younger adults has risen significantly and that adherence to this change would have a material impact on reducing the number of new cases of colorectal cancer. Unfortunately, health insurance companies will generally not cover screening until age 50. In order for screening to be covered starting at age 45, the United States Preventive Services Task Group (USPSTF) will need to also change their recommendation on the age at which screening should begin for normal risk. The Colorectal Cancer Alliance calls on the USPSTF to quickly review the data and revise their recommendations on screening age.
The Affordable Care Act seeks to increase prevention by eliminating costs on screening for certain diseases including colorectal cancer. As such, Medicare, Medicaid, and private insurance are all supposed to cover colorectal cancer screening with no co-pay or co-insurance. As with many new laws, there are elements that need to be fixed and unfortunately to date neither Congress nor the Administration has done so. During the course of conducting a screening colonoscopy, if the doctor finds a polyp and removes it, the procedure is no longer considered screening but diagnostic. So, a patient can be sedated with the understanding there is no cost and wake up with a bill running a thousand or more. This is clearly not the intent of the Affordable Care Act. For several years Representative Payne from New Jersey has introduced bi-partisan legislation to fix this issue and for 2018 House Resolution 1017 has hundreds of co-sponsors, but the legislation has not been brought to the floor for a vote. The Colorectal Cancer Alliance calls on Congress to pass HR 1017 or comparable 2019 legislation; should Congress fail to act we call on the Administration to issue an Executive Order revising the CMS interpretation.
CMS screening coverage
The most recent report from the US Preventive Services Task Force (USPSTF) recognizes that colorectal cancer screening is not “a one size fits all” and notes that patients needs options in order to increase the screening rate. The USPSTF report details several different A rated screening methods and the Affordable Care Act requires both public and private payers to cover A rated screening methods. Despite this, some insurance companies cover only one method, some several, while others cover all. The Colorectal Cancer Alliance calls on CMS to adhere to the Affordable Care Act and require that payers provide coverage for all A rated screening test.
INVEST IN RESEARCH RESULTING IN NEW TREATMENTS, PREVENTIONS AND A CURE FOR COLORECTAL CANCER
Cancer Breakthrough 2020
Cancer Breakthrough 2020, formerly the Cancer Moonshot creates a bold vision for curing cancer. We believe in this vision and that cancer can be eliminated in our lifetime. To achieve this goal, the NIH and its National Cancer Institute must have the funding to invest in leading edge research. The Colorectal Cancer Alliance supports Cancer Breakthrough 2020 and calls on Congress to fully fund the program.
White Paper: What patients and their families need to know about biosimilars
Download our white paper on what patients and families need to know about biosimilars.
Advocacy and policy questions
For questions about our advocacy and policy efforts, please contact:
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Research program inquiries
For questions about our research program, please contact the Alliance: