Several weeks ago Nancy Roach, C3 President, asked if I wanted to attend something called Celebration on the Hill (COTH). From what I could find out this American Cancer Society (ACS) event held September 19-21 in Washington, DC sounded like a big version of a local Relay for Life.

Last Wednesday, a couple of C3 staff and I were in the office planning future C3 activities. We planned to go to COTH later in the afternoon. Someone went to the COTH website and found a streaming video link. That was when I discovered the true size of this event.

The video was not one static camera pointed at the stage but several different views including crowd shots. There must have been a dozen or more cameras feeding an onsite production truck.

We went to the site around 5 pm. It went from 7th Street to the reflecting pool on the west side of the Capitol. The Wall of Hope started here so we walked through that first. The wall consisted of banner from all 50 states along with the District of Columbia and a couple of U.S. Territories.

I found Arkansas and signed the banner from my town. I also found the banner from the place where my aunt and cousin live. Their names were on it as both are cancer survivors.

The next area had a tent for each state and territory. This was a place for people to meet each other and rest. I heard most Members of Congress stopped by these tents to talk to constituents.

Each of us made donations to get luminaries. This is the best and most emotional part of every Relay. It is a joy and a sorrow to see them in the dark when they are lit. They were lined up by state around the Reflecting Pool, sometimes two and three deep. Each one represented a person with cancer. Some simply had the name while others were elaborately decorated. Many had a sentiment about the person.

This was not just about lighting some candles. Every Member of Congress, all 535 of them, received a visit from cancer advocates. Congress get visits all the time from groups but very few have enough participants present to get a visit with every Member.

This was a huge WOW experience for Carlea Bauman, C3 Executive Director, Jim Wetekam, C3 Director of Policy Communication, and I. ACS used a huge amount of resources to pull this off. It got the three of us to thinking and dreaming about the possibilities for C3.

I hope this is the start of something big for cancer advocacy. Sometimes people affected by cancer are looked upon with pity. When we tell our government officials what we want them to do they tell us they support cancer. Then they do little to act upon this support and we do little to make cancer an issue.

It is time this changed. We must becomed informed about the issue, decide what we want, and how best to bring this to the attention of our government.

One of my goals if for cancer to become an issue on par with groups such as the AIDS and gun lobbies. A similar goal is for colon and rectal cancer to get the same level of attention breast cancer now receives. Both of these will not happen overnight and will require much work.

Talk doesn’t cook rice. We’re here to cook. Let’s start cooking.

The National Institutes of Health (NIH) is authorized by Congress to support the following mission:

NIH is the steward of medical and behavioral research for the Nation. Its mission is science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability.

Congress provides funding for NIH which is distributed to institutions and researchers to achieve this goal.

Periodically, Congress reviews and modifies the legislation which guides NIH, a process called “re-authorization”. Congress reauthorized NIH in 1993. Congressman Joe Barton (R-TX), chair of the House Energy and Commerce Committee, has made NIH reauthorization a priority since becoming chair in 2004.

Since then, Chairman Barton’s staff has worked with stakeholder groups to define legislation that will reform NIH while continuing to support research.

Friends of Cancer Research reports that:

House Energy and Commerce Committee Chairman Joe Barton (R-TX) is bringing an updated version of a bill to reauthorize the National Institutes of Health (NIH) before his Committee for a vote …

Overall, the draft bill focuses on the organization and function of the Office of the Director of NIH and its relationship to the individual NIH institutes and centers by providing enhanced authorities for strategic planning and support of trans-institute initiatives. The bill would standardize a detailed series of reporting requirements covering research and other activities supported by NIH to promote greater accountability and increased transparency of NIH funds.

See C3’s letter to the House Energy and Commerce Committee regarding this legislation.

Rep. Ralph Regula (R-Dist. 16, OH), the chair of the House Appropriations Labor-HHS-Education subcommittee which oversees funding decisions for agencies such as the National Cancer Institute (NCI), promisd to maintain funding for cancer research at an August 28 town hall meeting in Wooster, Ohio.

C3 has been working with both House and Senate members to ensure an appropriate increase in NCI funding. Though Chairman Regula’s comments do not guarantee increases for fiscal year 2007, they do relieve our fears that current cuts in the House and Senate bills will ultimately be adopted.

C3 advocate Rebecca Dague raised the issue at the constituent gathering (as reported August 29 by The Daily-Record of Wooster, Ohio):

Rebecca Dague, a Medina resident struggling with colon cancer, questioned whether funding would be cut to the National Cancer Institute and research under way to find cures and new methods of treatment. Regula, whose subcommittee handles such funding, assured her otherwise.

“We’re not going to cut funding to NCI – take my word for it,” he said.

Thank you Rep. Regula. We appreciate your promise, and we look forward to working with you to make it real.

Click here to read the full article.

Congress hasn’t yet made final decisions on funding for cancer research and prevention programs. Money is very tight this year, and without stronger support from Congress, these programs are at risk.

Last week the Senate Appropriations Committee completed its consideration of the Labor-HHS-Education Appropriation bill, which contains funding for nearly all federal cancer programs. The House Appropriations Committee completed its work last month on its own version of the bill. Now, each chamber’s version will be scheduled respectively for consideration by the full Senate or House, though many congressional observers believe that won’t happen until well into the fall and perhaps, after the elections.

Both House and Senate versions of the bill are severely lacking in what they propose to do for cancer patients and for cancer research, with the House version being worse.

The following chart gives an idea of how far we need to go to meet the budget levels needed for cancer research, screening, and treatment. A brief explanation of the columns:

1. “Current 2006” describes the levels currently allocated for fiscal year 2006, i.e., the budget that Congress passed last year.
2. “2007 Do-No-Harm” is the amount necessary to avoid cuts in cancer programs, as identified by One Voice Against Cancer, a coalition of cancer and health organizations in which C3 plays a key role.
3. “House 2007” is the amount allocated thus far by the House Appropriations Committee in its Labor-HHS-Education Appropriation bill.
4. “Senate 2007” is the amount allocated last week by the Senate Appropriations Committee in its Appropriation bill.

Amounts included in this chart are from initial sources of information and may change slightly as more congressional data is made available.

Obviously, Congress has not yet done what it must if it is to show its support to colorectal cancer patients and families.In fact, it hasn’t even come close to increasing cancer programs enough to account for inflation, and the House bill actually makes small (but real) cuts!  Therefore, C3 and its advocates must work diligently during the rest of the summer and in the fall to ensure that Congress hears about our priorities.

Just what can you do? The most immediate, important (and even fun) thing is to set up visits with your Representative and two Senators when they are home in the district or state in August. These meetings can be amazingly effective in elevating the issue of colorectal cancer for Members of Congress. And it is in August that Congress takes its longest recess – or “work period” – during which Members of Congress are often very visible and available in their home communities and regions. This provides an extraordinarily good time for constituents to meet with them and impress upon them: 1) what it means to be someone living with colorectal cancer or to be a family member of a person who has had colorectal cancer, and 2) what it is that you need them to do to support cancer research, screening, and treatment.

And…it is not as difficult as you might think! We at C3 stand ready to help you every step of the way. If you are interested in doing more to convince your Members of Congress of the importance of cancer funding, please email us at advocacy@fightcolorectalcancer.org, and Dusty Weaver and/or I will be in touch with you. Thanks for all your summer efforts.

Good news! Governor Pataki signed the Colon-Prostate Treatment Act into law, making New York the first state in the country to have such coverage for colon cancer treatment. Thank you to all the advocates who took action and made a difference!

Attention New Yorkers! On July 14th a bill to provide Medicaid treatment coverage for people diagnosed with colon cancer through the Healthy Women and Healthy Living Partnerships (NY State Dept. of Health Cancer Services screening programs) was sent to the Governor Pataki for his approval – or veto. A6763a/S4691a is a bill which will guarantee treatment costs are covered for uninsured people diagnosed with colon cancer by local state-funded screening programs. Colon cancer is the second-leading cause of cancer death in New York, and uninsured people are much more likely to die of this disease than people with health insurance.

Because this legislation adds a new group of people eligible for Medicaid, the American Cancer Society  anticipates the Governor may be reluctant to approve the bill. (read ACS’s memo in support)

C3 has just sent the following email to our New York constituency:

Imagine that you have no medical insurance.

You find out that there is a no-cost screening program for colorectal cancer. But – if you are diagnosed with cancer, you know that you cannot pay for treatment without bankrupting yourself and your family.

Would you be screened? Would you be screened even if you knew that screening can find colorectal polyps before they become cancer and actually prevent colorectal cancer? Or would lack of insurance to pay for treatment be too high a barrier?

The NY State Legislature, both Assembly and Senate, has passed a bill that would qualify uninsured people for Medicaid coverage for colorectal cancer if it is diagnosed as a result of New York State Health Department screening programs. Breast and cervical cancer found during screening are already covered ? this bill will be fair in adding the same benefit for colorectal cancer.

The bill has just gone to Governor Pataki for his signature. He has 2 weeks (10 business days) to sign it. There is some pressure for him not to sign the bill since it may increase Medicaid costs. He needs to hear from people who know how critical colorectal screening and medical treatment are. Your action today is urgent.

Please contact Governor Pataki and urge him to sign the bill — S4691/A6763. You can do this easily through this action alert. Just sign in and send. We urge you to personalize our sample letter and follow up with a phone call. Tell Governor Pataki how colon cancer has personally affected you or someone you care about.

If you vote in New York, please visit our action alert page (or forward that URL to someone who does live/vote in New York) to send a message to Governor Pataki urging him not to veto this life-saving legislation.