Abstract C37: [Advocate Abstract:] Kidney cancer incidence levels in minority populations
Authors: Lewis Bryan 
Published: March 2017

Action to Cure Kidney Cancer (ACKC) is a 501(c)(3) not-for-profit organization founded in 2003 by patients, and their families to advocate for increased federal and private funding for kidney cancer research to identify people at risk, develop an inexpensive and accurate screening test, improved treatment and ultimately find a cure for kidney cancer. To date ACKC has provided close to $400,000 to fund kidney cancer research.

Early on we discovered the existence of the Congressionally Directed Medical Research Program (CDMRP), which was created to augment cancer research funding given that members of the U.S. military suffer from similar or even higher rates of cancer than does the general public. The CDMRP is very different from the National Cancer Institute (NCI) grant process. As pointed out in the summer issue of the AUA Investigator, ?CDMRPs play a unique role in the medical research community, investing in high-reward research grants through a peer-review system ?The initiatives under the CDMRPs are critical to advancing our understanding of a variety of health issues and have a proven track record of contributing to major medical breakthroughs,? The CDMRP is a two tiered system with patient advocates as voting members in addition to the scientific members in each of the two tiers. In the Programmatic Panel they participate in developing the vision for the disease research in the Peer Review Panel they evaluate and grade the proposals. After the proposals are graded the Programmatic Panel selects the proposals to be funded. The patient advocates are respected members of the CDMRP panels because they provide the face to the disease and can identify from their experience where the disease research needs to focus.

In 2004, ACKC initiated a campaign calling for inclusion of kidney cancer as a separate line item in the CDMRP. We obtained bi-partisan Senate and House sponsorship of a Dear Colleague letter, which was sent to the Defense Appropriation subcommittees asking for this funding. In 2006 kidney cancer was added as a topic area to the Peer Reviewed Medical Research Group (PRMRG) and was moved to the Peer Reviewed Cancer Research Group (PRCRP) in 2009. Kidney cancer in the PRMRG/PRCRG had to compete with other diseases/cancers for research grants. From 2006 through 2015 kidney cancer researchers received a total of $10 million in research grants.

ACKC was and still is the only not-for-profit organization to advocate for a kidney cancer CDMRP line item. In addition to our ?March on Washington? in the spring of each year we have given briefings to Congressional health staffers about kidney cancer and the need to fund research as it has been significantly underfunded compared with other cancers. This year we attained a breakthrough in that the House passed the FY2017 Defense Appropriations bill, which includes $10 million targeted for kidney cancer research. We are anxiously awaiting the passing of the 2017 Defense Appropriations bill because we anticipate kidney cancer having its own annual budget line. We await the Senate which has not yet passed a 2017 Defense Appropriations bill.

The American Urological Association (AUA) is supporting our efforts and we are very hopeful that kidney cancer will receive its own research budget line. If we are successful, a new and significant avenue for kidney cancer research will open up which would be very exciting news for the members of the AUA.

At present ACKC participates with One Voice Against Cancer (OVAC) advocating for National Institute of Health (NIH) funding increases to $33 billion and proportional increases for the NCI. In addition we have and continue to advocate to The NCI for additional Special Programs of Research Excellence (SPOREs). ACKC is a member and a founding partner of the International Kidney Cancer Coalition (IKCC). We attend and selectively report on our website on The American Association of Cancer Research (AACR), The American Society of Clinical Oncology (ASCO), and the Brigham & Women?s Hospital/Dana Farber/Renal Carcinoma meetings.

The ACKC website (www.ackc.org) emphasizes not only the latest news in kidney cancer research, but also provides Four Patient Guides for patients and caregivers. All four guides were updated in April 2016:

- Guide 1: Understanding My Disease is written for the newly diagnosed patient

- Guide 2: Managing My Cancer is about the care and treatment of kidney cancer patients

with metastatic disease.

- Guide 3: Caring for My Caregiver is for the people in your life who are helping you.

- Guide 4: When Treatment Ends is designed for both patients and their loved ones.

Citation Format: Bryan Lewis. [Advocate Abstract:] Kidney cancer incidence levels in minority populations. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr C37.