Abstract B58: Underserved populations in kidney cancer research and treatment
Authors: Miller Sarah Wise 
Published: October 2015

About 63,920 new cases of kidney cancer (39,140 in men and 24,780 in women) will occur in the coming year and this number is expected to rise. About 13,860 people (8,900 men and 4,960 women) are expected to die from this disease. These numbers include all types of kidney and renal pelvis cancers. Most people with kidney cancer are older. The average age of people when they are diagnosed is 64. Kidney cancer is very uncommon in people younger than age 45. Kidney cancer is among the 10 most common cancers in both men and women. Overall, the lifetime risk for developing kidney cancer is about 1 in 63 (1.6%). This risk is higher in men than in women. A number of other factors also affect a person's risk.

For reasons that are not totally clear, the rate of new kidney cancers has been rising since the 1990s, although this seems to have leveled off in the past few years. Part of this rise was probably due to the use of newer imaging tests such as CT scans, which picked up some cancers that might never have been found otherwise. The death rates for these cancers have gone down slightly since the middle of the 1990s. There are several distinct variations of kidney cancer, which makes the development of therapies and the treatment of kidney cancer more complex.

The Kidney Cancer Association (KCA) is a charitable organization made up of patients, family members, physicians, researchers, and other health professionals globally. It is the world's first international charity dedicated specifically to the eradication of death and suffering from renal cancers. It is also by far the largest organization of its kind, with members in more than 100 countries. We fund, promote, and collaborate with the National Cancer Institute (NCI), American Society for Clinical Oncology (ASCO), American Urological Association (AUA), and other institutions on research projects. We educate families and physicians, and serve as an advocate on behalf of patients at the state and federal levels in the United States and globally.

Our vision: A world without kidney cancer

Our mission: The elimination of death and suffering from renal cancers

The KCA continues to be focused in these primary areas:

1. Education

2. Outreach

3. Research

4. Advocacy

Education

Annually, the Kidney Cancer association provides more than 60 education and support opportunities for patients, survivors, and caregivers in various U.S. cities, including national meetings featuring kidney cancer experts, held major cancer centers such as M. D. Anderson Cancer Center, Houston, from which enduring educational materials are produced. We host online informal Facebook Group interactions for survivors and caregivers, and our social media presence has grown to include more than 85,000 people around the globe. Two years ago, we launched KidneyCancer.me, a peer-to-peer collaboration website for patients, survivors, and caregivers. We have developed and revised two patient-friendly smartphone educational applications for the iPad, iPhone, and Android platforms. We sponsor a European Kidney Cancer Symposium annually in various major international sites. Hundreds of medical professionals attend from around the world. Additionally, we sponsor an annual US-based medical symposium which similarly draws experts from around the world. These symposia bring together experts in an atmosphere of collaboration and information sharing which furthers the knowledge base of kidney cancer among professionals. Patient friendly summaries of the medical presentations are prepared and made available for all constituents. We disseminate information packets to families and provided physician referrals to hundreds of patients. Our membership database includes people in the US, Canada, Mexico, and more than 100 other countries. About 20,000 people receive our monthly e-newsletter and hundreds more watch Kidney Cancer News, the monthly video magazine featured on our home page.

Patient Outreach

The Kidney Cancer associations publication, We Have Kidney Cancer has been translated into numerous languages, thus facilitating outreach to numerous patient communities. It is available online in at least thirteen different languages.

Global outreach to medical professionals

The Kidney Cancer Association sponsors at least two international medical symposia yearly. We participate in addition genitourinary conferences to deepen our outreach to professionals whose primary focus is not kidney cancer but might come across cases in their practice.

Research

The Kidney Cancer Association has made increasing participation in clinical trials an important focus of the organization. We provide easy acces to tools for patients to search the clinical trials databases. Our partnership with EmergingMed has resulted in the referral of patients to sites conducting clinical trials. We make grants to the AUA Foundation and to the ASCO Conquer Cancer Foundation to support the work of young investigators. We have also made a financial commitment to support projects associated with the Kidney Cancer SPORE, based in Boston.

The Kidney Cancer Association works collaboratively with the Kidney Cancer SPORE, and the ASCO and AUA research foundations to fund the work of young investigators.

Advocacy

In our role as an advocate on behalf of patients, we continued collaborations with organizations such as, Cancer Leadership Council, Foundation for NIH, National Cancer Comprehensive Network, Patient Advocate Foundation, the National Coalition for Cancer Research, Friends of Cancer Research, and various groups concerned with improving the nation's health care. We continued highly effective collaborations with institutions interested in conducting cancer research, including our CEO's membership on various NIH committees.

Eliminate death and suffering from cancer

The Kidney Cancer association strives to identify opportunities for working collaboratively with other voluntary health organizations. We have established relationships with numerous international organizations to further our outreach to additional constituencies. Over the last several years we participated in various meetings in North America, Europe, Latin America, and Africa aimed at increasing public awareness of the need for improvement of public health care and the promotion of research. Our capacity to attain these objectives, as well as being able to identify new ones, relies primarily on the level of public support for our mission.

Working towards our mission and goals would not be possible without the dedication of our governing board, medical advisers, volunteers, and other collaborators who contribute selflessly to advance our objective: the elimination of death and suffering from renal cancers.

Note: This abstract was not presented at the conference.

Citation Format: Sarah Wise Miller. Underserved populations in kidney cancer research and treatment. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr B58.