C3′s Grassroots Action Committee Chair Pam Seijo, Grassroots Action Committee Members Florence Kurttila, Arlene Murphy, and Ed Murphy, along with C3 advocates Patti Hollenback, Cindy Robinson, and Regan Weaver are all participating in the annual One Voice Against Cancer (OVAC) Lobby Day.

Follow us on Twitter @FightCRCAdvocacy for the latest updates from the hill.

During their meetings today, C3 advocates will be asking Congress to support the following funding requests for fiscal year 2011:

• $35.2 billion for the National Institutes of Health (NIH)
• $5.79 billion for National Cancer Institute (NCI)
• $240 million for the National Center on Minority Health and Health Disparities (NCMHD)
• $601 million for Centers for Disease Control and Prevention (CDC) cancer programs
• $50 million for CDC’s National Comprehensive Cancer Control Program
• $50 million for CDC’s Colorectal Cancer Screening, Education & Outreach Initiative
• $65 million for CDC’s National Program of Cancer Registries
• $2.857 billion for the Food and Drug Administration (FDA)

This year we have a unique opportunity to demonstrate the tremendous advances made in the fight against cancer thanks to recent increases in federal funding and urging Congress to build on this progress.  Want to help us?  Register today as a C3 advocate and we will keep you posted on future opportunities to make your voice heard in the fight against colorectal cancer.

C3′s Grassroots Action Committee Chair Pam Seijo, Grassroots Action Committee Members Florence Kurttila, Arlene Murphy, and Ed Murphy, along with C3 advocates Patti Hollenback, Cindy Robinson, and Regan Weaver will be heading to Capitol Hill tomorrow to talk to Congress about the importance of increasing federal funding for cancer research and cancer control programs.

Today, the advocates will be getting advice from former Representative Bud Cramer and from a number of Congressional health staff, including:

• Anne Morris, Professional Staff, House Committee on Energy and Commerce
• Jeremy Sharp, Legislative Director, Senator Christopher Dodd (D-CT)
• Adrienne Hallett, Professional Staff, Senate Appropriations Committee, Subcommittee on Labor, Health and Human Services

The training the advocates receive today will get them ready to take on Congress tomorrow during meetings with their Senators and Representatives.  C3 is participating in the OVAC Lobby Day along with numerous other cancer advocacy groups.  Interested in learning more about the OVAC coalition?  Check out their website.

Important Dates:

• May 12, 2010 – Last day to submit scholarship application
• May 24, 2010 – Last day to register for OVAC Lobby Day
• May 24, 2010 – Last day to reserve a hotel room at the special OVAC rate
• June 16, 2010 – Lobby Day begins at 12:00 PM
• June 17, 2010 – Lobby Day ends at 5:00 PM

Location: The Liaison Capitol Hill Hotel (415 New Jersey Avenue NW, Washington, DC  20001)

OVAC has negotiated a discounted room rate of $269 a night at the The Liaison Capitol Hill hotel, and all training sessions will be held at this hotel.

Register today for the OVAC Lobby Day.

During the Lobby Day, you will be going to the hill to ask Members of Congress to support increased funding for cancer research.  Specifically, you will be asking Members to support the following funding requests:

• National Institutes of Health (NIH) – $35.2 billion ($4.2 billion (13.5%) over FY 2010)
• National Cancer Institute (NCI) – $5.79 billion ($691 million (13.5%) over FY 2010)
• National Center on Minority Health and Health Disparities (NCMHD) – $240 million ($29 million (13.5%) over FY 2010)
• Centers for Disease Control and Prevention, Division of Cancer Prevention and Control (CDC) – $601 million ($126 million (26%) over FY 2010)
• CDC’s National Comprehensive Cancer Control Program – $50 million ($29 million over FY 2010)
• CDC’s National Program of Cancer Registries – $65 million ($14 million over FY 2010)
• CDC’s Colorectal Cancer Screening, Education & Outreach Initiative – $50 million ($5 million over FY 2010)
• Food and Drug Administration (FDA) – $2.857 billion ($500 million (21%) over FY 2010)

This year we have a unique opportunity to demonstrate the tremendous advances made in the fight against cancer thanks to recent increases in federal funding and urging Congress to build on this progress.  Register today to let your voice be heard regarding the importance of increased funding for cancer research.

Register today for the OVAC Lobby Day.

The registration deadline is May 24, 2010.  When you register, you will be asked to select a participant type.  You should select “OVAC Partners” and be sure to identify yourself as a C3 advocate.  If you have any problems with the registration form, or would like additional information about the OVAC Lobby Day please contact Catherine Knowles at Catherine.Knowles@FightCRC.org.

U.S. Department of Health and Human Services (HHS) Secretary Kathleen Sebelius issued the following statement of support,

“[u]nder this budget, we will provide the health and human services that Americans depend on more effectively, slashing waste and focusing programs on results.  And we’ll make many of the necessary investments our country has been putting off for years, including investments in fighting health care fraud, strengthening our public health infrastructure, and getting serious about health and wellness,” said Sebelius. “This budget is a big step toward a healthier, stronger America.”

The President’s budget includes $32.09 billion for the National Institutes of Health (NIH).  The proposed funding level for NIH would be an increase of $1 billion (3.2 percent) over last year to support innovative projects from basic to clinical research.  The increase in funding for the NIH will allow the agency to initiate 30 new drug trials in 2011, and double the number of novel compounds in Phase 1 – 3 clinical trials by 2016.  In addition, FY 2011 funding will support the completion of a comprehensive catalog of cancer mutations for the 20 most common malignancies, setting the stage for complete genomic characterization of every cancer as part of medical care within 10 years.

The NIH budget includes:

• $5.26 billion for the National Cancer Institute – an increase of $161 million (3.16 percent); and
• $219 million for the National Center on Minority Health and Health Disparities – a $7 million increase (3.5 percent).

The President’s FY 2011 budget proposal also provides $2.5 billion for the Food and Drug Administration (FDA) – an increase of $148 million (6.26 percent) over last year.  The funding increases for the FDA include increases to bring more lower cost generic drugs and generic biologics to market as well as funding to expand post-market safety surveillance of medical products, and to support FDA’s efforts to make safety data more comprehensive and accessible to patients, providers, and scientists.

That is the good news.

The bad news is the Centers for Disease Control and Prevention (CDC) budget.  The President’s FY 2011 budget proposal reduces funding for CDC cancer prevention and control programs, including the Office of Smoking and Health, by $19 million (3.9 percent) below last year’s funded level.  Specifically, the National Breast and Cervical Early Detection Program is cut by $4 million (2 percent) and the Office of Smoking and Health is cut by more than $3 million (3.2 percent).

The CDC’s Colorectal Cancer Screening, Education & Outreach program is funded at $45 million.  This is the same level the program was funded at for fiscal year 2010.

Two CDC cancer control programs are eliminated under the President’s budget.  The Geraldine Ferraro Blood Cancer Program, which received $4.7 million in FY 2010, and the Gynecologic Cancer and Education and Awareness (Johanna’s Law) Program, which received $6.8 million in FY 2010, are zeroed out under the President’s FY 2011 budget proposal.

We need your help to get Congress to continue to increase funding for colorectal cancer programs next year!  Register now to join us at the 2010 Call-on Congress, and continue reading for more details on fiscal year 2010 funding for cancer programs and research.

The conference report includes $74 billion for the Department of Health and Human Services – an increase of $6.3 billion or 8.5 percent over last year.

In addition to the $45 million in funding for colorectal cancer programs at the CDC, the conference report includes an increase of $30 million over fiscal year 2009 (8.8 percent increase) for CDC cancer prevention and control programs.

It includes $31 billion in funding for the National Institutes of Health (NIH).  The funding for NIH is a $692 million increase over fiscal year 2009 (22.3 percent increase).

The funding for NIH includes $5.1 billion for the National Cancer Institute, a 2.8 percent increase over fiscal year 2009, and $212 million for the National Center on Minority Health and Health Disparities, a 2.7 percent increase over fiscal year 2009.

Bill text is available online along with the manager’s statement (this is the part of the bill that includes earmark funding).

Yesterday evening, House and Senate appropriators met to consider a conference report.  The report is an omnibus package that includes six of the fiscal year 2010 appropriations bills.  It includes: (1) the Labor, Health and Human Services Appropriations bill (this is the bill that funds a number of cancer programs through NIH, CDC, and NCI); (2) the Commerce Justice Science Appropriations bill; (3) the Financial Services Appropriations bill; (4) the Military Construction and Veterans Affairs Appropriations bill; (5) the Department of State and Foreign Operations Appropriations bill; and (6) the Transportation and Housing Appropriations bill.  The bill text is available online along with the manager’s statement (this is the part of the bill that includes earmark funding).

The conference report includes nearly $450 billion in spending for fiscal year 2010, and could come to the floor for a vote in the House as early as tomorrow.

Although very large, this first conference report does not include the Department of Defense Appropriations bill.  A second package will be needed expected to complete consideration of the defense bill before the current continuing resolution expires on December 18.

House and Senate appropriators are scheduled to meet Thursday afternoon to consider this second conference report that will include fiscal year 2010 funding for the Department of Defense.  This second conference report is expected to include the funding C3 requested for a new peer reviewed cancer research program to focus on colorectal cancer research.  In addition to funding for the Department of Defense, this second conference report is expected to include a jobs package using TARP money, an estate tax fix, an extension of the highway trust fund, and an increase of the debt limit.

The second appropriations conference report will be considered on the floor in the House next week.

The Senate will take up both conference reports after the House passes them. This timetable will allow Congress to send the bills to the President and wrap up consideration of all the fiscal year appropriations bills before the end of the year.

All of the approved lines were obtained from embryos left over by couples seeking treatment for infertility who consented to their use for research under the NIH’s Guidelines for Human Stem Cell Research.

In making the announcement, NIH Director Francis S. Collins, M.D., Ph.D., said

“I am happy to say that we now have human embryonic stem cell lines eligible for use by our research community under our new stem cell policy. In accordance with the guidelines, these stem cell lines were derived from embryos that were donated under ethically sound informed consent processes. More lines are under review now, and we anticipate continuing to expand this list of responsibly derived lines eligible for NIH funding.”

More than 30 NIH grants funded in the 2009 fiscal year totaling more than $20 million proposed to use hESCs. These grants have been restricted until approved lines became available on the NIH registry. This group of grants includes research using hESCs for the therapeutic regeneration of diseased or damaged heart muscle cells, developing systems for the production of neural stem cells and different types of neurons from hESCs in culture, and developing a cell culture system for the large scale production and self-renewal of hESCs.

With today’s announcement and following NIH approval, these grantees may obtain registry-listed hESCs, if they are appropriate for their project, from the owners of the lines and proceed with their research.

The NIH Human Embryonic Stem Cell Registry of approved hESCs is available online. You can also obtain additional resources and more information on stem cells and NIH research from the NIH online.

C3: Colorectal Cancer Coalition believes that stem cell research holds promise for expanding medical breakthroughs, and we support federal funding and policies that will give the researchers the tools they need to fight cancer and other diseases. That is why in January 2007, we chose to add our name to a letter that was sent to the US Senate and House of Representatives and signed by over 500 patient advocacy groups, health organizations, research universities, scientific societies, and religious groups.  Read more about C3’s support for stem cell research.

An additional 96 lines have been submitted to NIH for either internal administrative review or consideration by the external Working Group for Human Embryonic Stem Cell Eligibility Review and the NIH Advisory Committee to the Director (ACD), including more than 20 that will be considered by the ACD on December 4.

We will keep you updated on any new developments.

*Since this information was released, the number of available stem cell lines increased to 27.

Dr. Collins is both a physician and an expert in genetics.  He led the Human Genome Project to an early success in identifying and sequencing the 25,000 genes in the human genome and headed the National Human Genome Research Institute (NHGRI) from 1993 through 2008.

Announcing his confirmation, Secretary of Health and Human Services, Kathleen Sebelius, said,

Dr. Collins is one of our generation’s great scientific leaders. A physician and geneticist, Dr. Collins served as Director of the National Human Genome Research Institute, where he led the Human Genome Project to completion.Dr. Collins will be an outstanding leader. Today is an exciting day for NIH and for science in this country.

His teams discovered genes responsible for a number of diseases, including adult-onset diabetes, cystic fibrosis, Huntington’s disease, and familial endocrine cancer syndrome.  Collin’s work on the genetic basis of Hutchinson-Gilford progeria syndrome, which causes premature aging, may lead to treatment for this rare disease but will also provide important insights into normal human aging.

Dr. Collins is a longtime advocate for protecting the privacy of patients and families with inherited conditions and worked hard for the passage of legislation to prohibit insurance and employment discrimination based on genetic information.

In nominating Dr. Collins to lead the NIH, President Obama said,

The National Institutes of Health stands as a model when it comes to science and research.  My administration is committed to promoting scientific integrity and pioneering scientific research and I am confident that Dr. Francis Collins will lead the NIH to achieve these goals. Dr. Collins is one of the top scientists in the world, and his groundbreaking work has changed the very ways we consider our health and examine disease.  I look forward to working with him in the months and years ahead.

In 2007, Dr. Collins received the Presidential Medal of Freedom from President George W. Bush.

Based on his interest in the relationship between science and faith, he wrote the bestselling The Language of God: A Scientist Presents Evidence for Belief,  A new book, The Language of Life: DNA and the Revolution in Personalized Medicine will be published in 2010.

President Barack Obama

President Obama released his FY 2010 budget request. The budget requests $30.838 billion for the National Institutes of Health (NIH), a 1.4 percent increase ($443 million) over the FY 2009 level. This includes $5.15 billion for the National Cancer Institute (NCI) or $181 million more than the FY 2009 funding level.

The NIH funding request also reflects the request of $6 billion for “cancer research across NIH.” The budget summary says that the $6 billion request is “… the first year of an 8-year strategy to double cancer research by FY 2017. The FY 2010 request represents an increase of $268 million or 5 percent over the estimated FY 2009 level in this area.”

Carlea Bauman

Carlea Bauman, President of C3: Colorectal Cancer Coalition spoke today. April 20, 2009, at a public meeting called by the National Institutes of Health to hear input on expansion of its clinical trials registry.

In calling for the ClinicalTrials.Gov database to include results of all clinical trials, Bauman said,

C3:Colorectal Cancer Coalition is committed to providing results of clinical trials that affect patients with colon and rectal cancer fairly and honestly, providing both positive and negative conclusions, and helping patients to understand what the results mean to them in language they can understand.

Clinicaltrials.gov currently lists most Phase II and III clinical trials and some earlier Phase I trials.  As of March 2009, it contained information about more than 69,000 clinical trials being conducted in over 160 countries.  The Food and Drug Administration Amendments Act of 2007 (FDAAA) calls for expanding data included in the registry to include results of those trials.

In her remarks at the public meeting, Bauman stressed:

• Having clear, understandable results of all clinical trials in a single, searchable place is critical to patient decision-making.  Patients should be able to know what results of a clinical trial mean for them:  what the benefits of a treatment are, what the side effects or other harms might be, and exactly which patients might be most helped or harmed.
• Patients who contribute to medical research by volunteering to participate in clinical studies deserve to know the results of their involvement.  Research has shown that they want this information.
• All clinical research results — positive, negative, and inconclusive — should be easily available to patients and consumers.
• A simple, but complete, description of the clinical trial design, its endpoints, and the statistical basis for determining whether or not endpoints were reached should be included with the results.

C3 will provide additional written comments to assist in the NIH rule-making to ensure that the needs of people affected by colon and rectal cancer are met with the expanded registry and database.