Advocacy Update – July 2014

Advocates, we hope that your summer is more relaxing than ours has been so far! Between Sen. Brown’s introduction of the H.R. 1070 Senate component bill, S.2348, and meetings both on and off the Hill, we’ve been keeping busy!

Read this month’s update to find out the latest in advocacy at Fight Colorectal Cancer and join the Advocates at Fight Colorectal Cancer Facebook group to connect with others.


Kelly Kuster of Milwaukee, Wis. is best known in the colorectal cancer community as the June 2013 Colondar Model, but her involvement doesn’t stop there! On June 25, Kelly represented Fight Colorectal Cancer as a patient advocate and stage IV survivor at a meeting with Wisconsin’s Lieutenant Governor Rebecca Kleefisch, a stage III colorectal cancer survivor. Two other patient advocates attended the meeting, representing lung and breast cancer organizations.

The focus of the meeting was the emerging insurance treatment pathways, an issue that Fight Colorectal Cancer is currently monitoring. It’s our priority to make sure that patient voices are heard loud and clear.

Read recent articles that have brought this to our attention:



Rep. Payne, Jr. – a champion on the Hill for CRC

This month, we saw a huge jump in co-sponsor activity for H.R. 1070! Thank you for continuing to ask your members of Congress for their support on this issue. The five new co-sponsors are:

  •  Rep. Rodney Davis (IL-13)
  •  Rep. Charles Rangel (NY-13)
  •  Rep. Doris Matsui (CA-6)
  •  Rep. Scott Peters (CA-52)
  •  Rep. Sam Farr (CA-20)

Our goal is to gain 26 more co-sponsors by the end of summer. Help us reach this goal of 100 co-sponsors by calling, emailing or visiting your representative’s office! Be sure to also reach out to your senator about co-sponsoring S.2348, the Senate component bill. For help with setting up this meeting or drafting an email, email our advocacy manager Emily White.

Help us keep going! Fund the fight to support advocacy efforts.



Stakeholder meeting on the Hill – July 16

Fight Colorectal Cancer, in partnership with ACS CAN, is pulling key stakeholders together to ensure we don’t lose sight of our shared goal—to eliminate screening barriers. Congressman Payne asked that we hold this meeting to continue to promote legislation introduced in both the House and Senate, “Removing Barriers to Colorectal Cancer Screening Act” – H.R.1070 and S.2348. The meeting will educate attendees on this act and provide a forum for organizations and thought leaders to discuss how to move the “80% by 2018” goal forward as a coalition. Congressional members and staff, along with colorectal cancer nonprofits, agencies, and medical associations, are invited. A breakfast meeting will kick off the day and immediately following, invitees and advocates will lobby members of Congress to co-sponsor legislation H.R. 1070 and S. 2348.

To register for the event, click here.


Congressional appropriations are almost final, and things are looking good for colorectal cancer.

The Senate Appropriations Subcommittee on Labor, HHS, and Education completed action on the HHS/Labor Appropriation bill on Tuesday, June 10. The Subcommittee provided $30.459 billion for the National Institutes of Health (NIH). Although Fight Colorectal Cancer, along with other cancer groups, asked for $32 billion for 2015, this is a step in the right direction. The Senate bill provides an increase of $600,000 or about 2 percent above the 2014 funding level for the NIH. This is better than expected in the current environment with the Congressional budget caps in place (it’s also better than the President’s proposed budget.) The Senate plans to bring the bill to the floor before the August recess. However, since this is a contentious bill, it is unknown if this schedule will hold.

The House funding level for NIH is still unknown. The House Appropriation mark-ups in Subcommittee and Full Committee have not been scheduled. It is rumored that they will begin sometime late June and that the NIH number will remain at least flat.

However, the House has approved the FY15 Defense Appropriations Act by a vote of 340-73. There were no amendments offered that would have eliminated, reduced or limited the Defense Health Research Programs, including the DoD Peer Reviewed Cancer Research Program (PRCRP), which was funded at $15 million for FY 2015 (the same amount as FY2014). In addition, colorectal cancer was again included as eligible for research funds in the bill.

Keep our voice heard on the Hill. Fund the fight today!


We’re seeing changes in the way things are done with clinical trials! At the Cancer Leadership Council (CLC) meeting on June 11, Dr. Jeffrey Abrams of the National Cancer Institute (NCI) spoke on the National Clinical Trials Network (NCTN), which was launched in March 2014. Before NCTN, the Institute of Medicine (IOM) and other researchers described the NCI clinical trial process as too slow, inefficient and needing a “big makeover,” according to Dr. Abrams. In addition, a more collaborative process was sought where clinical trial information could be shared with other researchers, providers, and patients. Previously, NCI clinical trials operated as independent silos where information was not readily shared.

As a result, the NCTN was developed and is currently being implemented. In March 2014, the first five NCTN grants were awarded to ten research clinical trial groups that were consolidated into 4 adult and one pediatric group. Awardees demonstrated their goals to collaborate with all groups and to share research information. In addition, awardees demonstrated their commitment to a “teamwork” approach rather than a few independent researchers.

Some feel that there are major issues with this approach, and voiced their opinions at the CLC meeting. Much of the discussion focused on reduction of funds to NCI due to Congressional sequester, flat funding and other NCI budget issues. As a result, previous clinical trials have been stopped midway and replaced with the new NCTN approach. The meeting addressed claims that too much research is being wasted and that the focus of clinical trials has changed – at the detriment to patients. Dr. Abrams agreed with the funding problems and mentioned several pools of money that may become available in the near future to help with this gap in funding of existing research. Differences of opinion on the NCTN issue have resulted in the CLC remaining neutral on the issue.

More information about these NCTN trials can be found at


If you’ve seen the hit movie Dallas Buyers Club, you might be familiar with the “Right to Try” laws and the controversy that surrounds this issue. Though the movie is fictional and arguably exaggerated, the conflict of treatment options for terminally ill patients is very real.

Essentially, the proposed “Right to Try” laws would allow terminally ill patients who are out of FDA-approved treatment options to sign a waiver of liability, find a provider and recommended drug to assist them, and be allowed to try drugs that are not FDA approved. Fight Colorectal Cancer is making sure we monitor the “Right to Try” laws along with a coalition of leaders in the cancer community.

Though the Goldwater Institute, a conservative public policy advocacy and research organization, supports the patient’s “right to try,” the FDA opposes the initiative. Currently, the FDA has a 92 percent approval of “compassionate use” of drug treatment for eligible terminal cancer patients who can find a company to give/pay for the drug their doctor recommends. We continue to dig for more facts and information from both sides on this very complex issue.

To find out more about this hot topic, click here.


13265608654_9d314a7d8c_zOn June 11, our policy strategist Margaret Carvin attended the House Energy and Commerce Health Subcommittee hearing titled “Examining the Role of Incentives in Advancing Treatments and Cures for Patients.”

Committee members heard from witnesses from a variety of different backgrounds related to health research. Researchers and professors, venture capitalists and investors, as well as a patent attorney, testified at the hearing and answered questions about the effect of patents on innovation. Witnesses were asked to focus on how private sector investment in drug, biologics, and device research could be increased at a faster pace to find cures.

Much discussion was on the length of patents to create incentives for research of drugs and devices. For example, the passage of the Orphan Drug Act, which has seven years of patent protection, has increased the development of drugs for rare diseases. However, if a patent is too long, competitive research can stifle smaller innovative start-ups who may be locked out of the market.

There were discussions on how the U.S. regulatory environment impacts biomedical research development. This includes, for example, tax issues, FDA approval policies and many regulatory factors. It important to note that more and more biomedical research is being conducted outside of the United States due to the disincentives created by the U.S. regulator environment. In addition, drug and device approval times are often much faster overseas and this allows drugs/devices to get to market much quicker. As a patient advocate organization, we value the speed in approval times, but we have to make sure there are appropriate quality controls as well.

Another regulatory issue impacting investor development of biomedical research involves payer reimbursements for drugs and formularies that may restrict use of certain drugs, thus discouraging drug companies to take risks on new products. Medicare policies are particularly influential since Medicare beneficiaries are a large segment of the population who use drugs and devices. In addition, insurance payers often follow Medicare reimbursement models—something we’ve seen with the colonoscopy coinsurance issue.

The Committee plans to hold additional hearings on this topic in the future and is seeking comments from the larger health care community. We will be sure track this and prepare comments if there is an opportunity to do so. This issue is larger than just colorectal cancer, and we are working with a large coalition of organizations. On June 13, we signed onto a letter submitted by the Patients Equal Access Coalition (PEAC) regarding this issue.

To read the letter, click here.


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