I Vote for the Cure: KAA Congressional House Approps Testimony

Written Testimony of Shelley Fuld Nasso
Director, Public Policy,
Susan G. Komen for the Cure Advocacy Alliance

Submitted to the House Appropriations Subcommittee
on Labor, Health and Human Services, Education, and Related Agencies

March 31, 2008

Chairman Obey, Ranking Member Walsh, and members of the subcommittee:
On behalf of the Susan G. Komen for the Cure Advocacy Alliance, I would like to thank you for the opportunity to submit written testimony regarding federal funding to fight breast cancer. Specifically, I would like to take this time to stress the importance of increased funding for the National Institutes of Health (NIH), including the National Cancer Institute (NCI), and the Centers for Disease Control and Prevention (CDC), both of which play a critical role in finding and delivering the cures for breast cancer. In addition, Komen for the Cure supports full funding for the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005 administered by the Health Resources and Services Administration. As the appropriations subcommittee with jurisdiction over these agencies, we hope you will consider our request.

Background on Susan G. Komen for the Cure

Susan G. Komen for the Cure is the world's largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, in its first 25 years, Komen for the Cure invested $1 billion to fulfill its promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world. To continue this progress, Komen for the Cure has pledged to invest another $2 billion in the next ten years. In 2007 alone, Komen for the Cure awarded almost $70 million in community health grants for education, screening and treatment, and more than $75 million in grants for cancer research. And Komen is on track to award more than $100 million in research grants this year. But while Komen has had a significant impact on breakthrough research in breast cancer, we can't do it alone. Federal funding for research must keep pace with biomedical inflation and the ever-changing world of science.

In addition to grant-making, Komen has advocated tirelessly for improved access to high quality care for breast cancer patients. We have long been a champion of the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), and we successfully advocated for the program's reauthorization last year. But again, we can't do it alone. Successful programs such as the NBCCEDP must be fully funded to allow all women access to the screening and treatment services they deserve.

The Importance of NIH and NCI Funding

Komen for the Cure supports the One Voice Against Cancer (OVAC) request of $30.81 billion for the NIH in fiscal year 2009 (FY09). This represents a 6.5% increase over the FY08 budget. In addition, Komen supports OVAC's request for a 9.5% increase in funding for FY09 for the NCI ($5.26 billion). The NCI funding increase is based on the professional judgment budget (also known as the "by-pass" budget) issued by the NCI and would provide sufficient funding for continuing current services. It should be noted that the appropriation given to the NCI by Congress has traditionally met or exceeded the amount requested in the by-pass budget. Fiscal Year 2006 marked the first year that the appropriation dipped below the by-pass budget—we must reverse this trend. In addition, a 9.5% increase provides the NCI only with enough resources to continue current services. The Institute has stated that a 25% increase would be needed to implement new initiatives. In this context, we believe 9.5% is a reasonable request.

Previous investments in research have allowed us to make significant progress toward discovering and delivering the cures for breast cancer. During the "doubling" of the NIH budget from 1998-2003, incredible advances were made in our understanding of the genetic causes of cancer, how to disrupt the growth and spread of cancerous cells without destroying healthy cells, and in the development of diagnostic tools and treatments that can be tailored to an individual or specific type of cancer based on genetic traits. Today, research opportunities abound in both basic and translational settings, including:

Adult stem cell research. Some researchers believe that stem cells (cells that give rise to all cells in the body) are the source of at least some, and perhaps all, cancers. Breakthroughs in adult stem cell research may allow us to develop more effective treatments;
RNA interference. A technology with the potential to turn off the genes that make cancer grow;
Nanotechnology. Tiny particles can be coated with a special material, and when introduced into the body, these particles may be able to target and kill cancer cells from the inside out;
Gene therapy. In gene therapy, a specific gene can be transferred into a patient's cancer cells to make them more responsive to treatment. A gene can also be transferred into a patient's immune system cells to make them better able to fight the cancer;
Anti-angiogenesis drugs. Anti-angiogenesis drugs work by preventing tumors from developing new blood vessels, thereby preventing growth of the tumor; and
Targeted therapies and personalized medicine. An ever-expanding list of targeted therapies is making breast cancer treatment more specific and possibly less toxic.

However, many of these promising areas of research will not receive funding if the NIH and the NCI continue to be under-funded. A recent report by a group of concerned universities, "A Broken Pipeline?: Flat Funding of the NIH Puts a Generation of Science at Risk" paints a grim picture for the future of science. Only 24% of NIH R01 grants (or equivalents) were funded in 2007, down from 32% in 1999. Even worse, only 12% of grants were funded on the first submission in 2007, compared to 29% in 1999. Scientists spend more time writing than researching. For young investigators, the success rate is particularly difficulty – 1 in 4 NIH grants is awarded to a first-time grantee. Persistent under-funding at the NIH is costing us a generation of promising young scientists and untold missed opportunities to find a cure for breast cancer. Opportunities we can't recoup if we do not act now to reverse the downward trend in the NIH budget.

One in eight women will be diagnosed with breast cancer in the course of her lifetime. In 2008, more than 182,000 women will be diagnosed with breast cancer and more than 40,000 women will die from the disease. The burden of breast cancer, and of all cancers, remains enormous. Cancer deaths account for one out of every four deaths in the United States and cost our economy over $200 billion annually, and yet we spend only $5 billion at NCI on oncology research. We owe it to all of those affected by this disease, and to their families, friends and loved ones, to adequately fund the NIH and the NCI so that we can find a cure for cancer. We owe it to young investigators who have dedicated their professional lives to cancer research to provide adequate federal funding through the NIH and NCI so they can continue to make innovative breakthroughs in science. And finally, we owe it to the U.S., as the global leader of biomedical research to continue to provide increases in funding to the NIH.

The CDC National Breast and Cervical Cancer Early Detection Program

In addition to an increase in funding for NIH and NCI, Komen for the Cure also requests that Congress appropriate $250 million for CDC's National Breast and Cervical Cancer Early Detection Program (NBCCEDP).

The NBCCEDP is designed to reach underserved women to provide screening services for breast and cervical cancer as well as appropriate referrals for treatment and support services as necessary. In addition to clinical services, NBCCEDP programs develop and disseminate public information about the importance of screening, improve the education, training and skills of health professionals in the detection of breast and cervical cancer, engage in outreach efforts to serve as many eligible women as possible, monitor and evaluate the program, including the quality of screening services, and report certain data to CDC. The heart of the program is to provide screening services to low-income, uninsured, and underinsured women aged 18 to 64 with incomes under 250 percent of the federal poverty level. The women served are often in at-risk populations and those least likely to be screened. According to the CDC, since 1991, the NBCCEDP has served more than 3 million women by providing more than 7.2 million screening examinations, and diagnosing 30,963 breast cancers, 1,934 invasive cervical cancers, and 101,624 precursor cervical lesions.

The NBCCEDP is an invaluable service to women who are served by the program. There is no cure for breast cancer. Without a cure, early detection is key to survival. Timely mammography screening of women over age 40 could prevent 15 to 30 percent of all deaths from breast cancer—when breast cancer is detected early, while still confined to the breast, the five-year survival rate is more than 98 percent. However, many low income women are uninsured or underinsured and would never receive a mammogram without access to NBCCEDP services.

From a high of $210 million in FY2004, funding for the NBCCEDP has either declined or remained essentially flat for the subsequent years. In FY2008, the program received only approximately $200 million, despite an authorization level of $225 million. Programs are severely strained by the lack of adequate resources—only 14.7 percent of eligible women were screened for breast cancer and only 6.7 percent of eligible women were screened for cervical cancer in 2006. We urge Congress to fully fund NBCCEDP to allow these programs to reach as many women as possible and save as many lives as possible.

Patient Navigators

Finally, Komen for the Cure would like to offer support for full funding ($6.5 million) for FY09 for the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005 administered by the Health Resources and Services Administration. The Act authorizes appropriations of $2 million for FY06, $5 million for FY07, $8 million for FY08, $6.5 million for FY09, and $3.5 million for FY10, however no money has been appropriated to date.

Patient navigation services are critical to address barriers to quality cancer care, particularly for minority and underserved patients who often do not speak English, have low literacy skills, are uninsured, and/or live long distances from treatment centers. These patients have difficulty accessing quality care and have trouble coordinating their cancer care, leading to disjointed treatment, inadequate patient-doctor communication, difficulty with follow-up appointments, and poor adherence to treatment regimens. Patient navigators help patients "navigate" the maze of doctors, insurers and patient support groups. For breast cancer patients, a patient navigator can provide personalized education on breast surgery options, chemotherapy, and radiation therapy, as well as facilitating communication with physicians and other health professionals.

Komen for the Cure is committed to ensuring all breast cancer patients have access to a patient navigator if they so desire. To this end, we urge Congress to fully fund the Patient Navigator Outreach and Chronic Disease Prevention Act at $6.5 million for FY09.

Funding Requests

Thank you for the opportunity to submit this written testimony. To reiterate, our FY09 funding requests are as follows:

NIH: $30.81 billion (6.5% increase over FY08);
NCI: $5.26 billion (9.5% increase in over FY08);
CDC's National Breast and Cervical Cancer Program: $250 million.
Patient Navigator Outreach and Chronic Disease Prevention Act: $6.5 million.