My name is Beth Emery. I am speaking today as a 5-year survivor and a board member of the Alamo Breast Cancer Foundation, a San Antonio non-profit organization established in 1993.
ABCF’s mission is to end breast cancer by assisting patients, informing policymakers and expanding knowledge through education and community outreach. Our volunteers spent over 17,000 hours last year on these efforts. We sit on the board of the National Breast Cancer Coalition (NBCC).
Through NBCC’s Project Lead® Institute, workshops and updates, virtually all ABCF board members are trained in the science of breast cancer. Many of us regularly serve on peer-review panels and advisory committees for some of the nation’s largest cancer research programs, including the Department of Defense (DOD) Breast Cancer Research Program (BCRP), the California Breast Cancer Research Program (CBCRP), NIH grant programs, and others.
ABCF comes today to support continuing the important work of the Cancer Prevention and Research Institute of Texas (CPRIT), but we urge you to make needed improvements so that our tax dollars are well spent and CPRIT’s goals are met.
Cancer presents a very real public health threat in Texas. The American Cancer Society’s 2013 Facts & Figures, predicts over 37,000 cancer deaths in Texas alone this year. Texans lose loved ones and colleagues, but we also suffer economic consequences – the cost of uninsured care and lost productivity from early death. The legislature was wise to create CPRIT as one important investment tool to address, over the long term, the human and economic costs of cancer on Texans.
That said, it is clear that in some areas CPRIT has run off the tracks. Senator Nelson’s S.B. 149 would add important new compliance and conflict of interest requirements for CPRIT. We support S.B. 149.
However, there there are other important reforms that should be added. These are not novel ideas. They are best practices that other major grant programs use. Specifically:
- CPRIT should be overseen  and its grants awarded by committees that have a meaningful number of cancer patient advocates trained in the science of cancer and best practices for clinical trials. The statute currently contains only a general goal of including cancer survivors or their families as members of the Oversight Committee. There is no requirement to include them on the committees reviewing grants. Trained patient advocates are essential to ensuring that research grants go to proposals most likely to meet the statutory goals. “Best practices” followed by other major grant programs like the DOD and the National Institutes of Health (NIH) include this requirement, and Texas should implement it. As trained advocates, we can credibly challenge scientists in a way that untrained survivors and their families cannot.
- We need a better and more public annual report. Texas does not need to reinvent the wheel. The DOD BCRP “Era of Hope” Conference is a great model. Every other year, DOD hosts a public conference at which grant recipients present the outcome of their research. Advocates and scientists meet and discuss the most important research. It puts a face on the disease that many scientists have said is critical to incenting them to keep at their research. It is a public accountability that ensures the knowledge developed, good or bad, with our tax dollars is shared.
- Finally, we urge that the legislation expressly recognize and require use of the Clinical Trials Network of Texas. As some of you may know, the national average for adults participating in clinical trials is abysmal. I am not aware of Texas-specific statistics, but it is safe to assume we are no better. We need to encourage clinical trials and the availability of trials throughout the state. CPRIT could be a big part of that effort.
THANK YOU. I AM AVAILABLE FOR ANY QUESTIONS.
 Information on Project Lead can be found on NBCC’s website at: http://www.breastcancerdeadline2020.org/get-involved/training/project-lead/.
 Created by the California State Legislature in 1993, the CBCRP is the largest state-funded breast cancer research program in the nation and is administered by the University of California, Office of the President. The CBCRP reports that to date, the CBCRP has awarded 569 grants to 62 scientific institutions and community entities, totaling nearly $150 million for research in California to prevent, treat and cure breast cancer. Grants from the CBCRP fill gaps not traditionally funded by other research programs to jump-start new areas of investigation that push the boundaries of research and foster new collaborations. The CBCRP is funded through the voluntary tax check-off program on personal income tax form 540, the State tobacco tax, and individual contributions. For more information call 1.888.313.BCRP, or visit www.cbcrp.org.
 CPRIT oversight is through the Oversight Committee. Grants are recommended by separate “Research and Prevention Programs Committees.” Both
 See Section 102.101 (d): “In making appointments to the oversight committee, the governor, lieutenant governor, and speaker of the house of representatives should attempt to include cancer survivors and family members of cancer patients if possible.” The Executive Director is given fairly unlimited discretion regarding the makeup of the Scientific Research and Prevention Programs Committees. See Sec. 102.151.
 The CPRIT goals have been established by statute in Sec. 102.002 to:
(1) create and expedite innovation in the area of cancer research and in enhancing the potential for a medical or scientific breakthrough in the prevention of cancer and cures for cancer;
(2) attract, create, or expand research capabilities of public or private institutions of higher education and other public or private entities that will promote a substantial increase in cancer research and in the creation of high-quality new jobs in this state; and
(3) develop and implement the Texas Cancer Plan.
 The Texas Clinical Trials Network (TCTN) is a project of the Texas Life Science Foundation, with a mission “To accelerate the success of clinical research and advanced medical technologies in Texas to prevent and control cancer and other life-threatening diseases.” Information on the network can be found at http://www.tlsfoundation.org/clinical-trial-network/.