Genesis of ACKC

History and Background

In 2003, a group of kidney cancer survivors and caregivers, concerned about inadequate government and private funding for kidney cancer research, established a new not-for-profit advocacy organization. We called ourselves Action to Cure Kidney Cancer (ACKC). While there are many other successful cancer organizations that provide information and other services to cancer patients and families, no other group existed whose primary mission was to specifically advocate for kidney cancer research. We established ACKC to meet this need.

Through our advocacy efforts, ACKC has reached out to thousands of kidney cancer survivors throughout the country. With their support, we have met with members of Congress and local political leaders, have mounted letter writing campaigns, have conducted briefings on kidney cancer for both Senate and House health aides, and initiated a request by the House Labor, Health and Human Services and Education (LHHSE) sub-committee requesting the National Cancer Institute to develop a strategic plan to combat kidney cancer. Over the past four years, we have focused our major effort on educating the House and the Senate about kidney cancer and urging the Congress to appropriate money for the Congressionally Directed Medical Research Programs of the Department of Defense specifically for kidney cancer research. Although we haven’t gotten this appropriation yet, this year’s campaign garnered significant support for our initiative (see Campaign 2005 under Take Action),and if we are not successful this year we are optimistic of getting an appropriation earmarked for kidney cancer research in next year’s Congressional session. However in 2006 we were successful in getting kidney cancer included as one of the twenty-five diseases elegible to compete for research grants in the Congessionally Directed Medical Research Programs Peer Reviewed Medical Research Program. The 2006 budget for this program was $50 million. More importantly a kidney cancer research award was made for $932,919 to Dr. Maria F. Czyzk-Krzeska of the University of Cincinnati.

We have expanded our advocacy activities to address pharmaceutical company policy issues. For example, the ACKC Board of Directors voted unanimously to petition Pfizer to develop their very promising investigational drug, AG-13736, to combat kidney cancer for which it was first developed but now has been stopped (see AG-13736 vs Sutent under Kidney Cancer Info). This is a very important issue for kidney cancer patients who are currently metastatic and are seeking new treatment possibilities.

Another project we are embarking upon is aimed at increasing awareness of kidney cancer and providing resource information to those people stricken by kidney cancer. ACKC was awarded a grant by the Fund for the City of New York to create a resource list of urologist, oncologists, and medical centers that provide services to kidney cancer patients.

Finally, we have started raising money in order to fund kidney cancer research projects on our own. We have done some initial investigation as to the types of projects we might wish to fund and expect to solidify our plans over the coming months.

ACKC and the KCA

Many people have asked us what the difference is between ACKC and the KCA. What does ACKC do that’s different? First, there is room for many kidney cancer organizations just as there are many breast cancer, prostate cancer, ovarian cancer organizations etc.

However, the most significant difference between the two organizations is in the concept of disease-specific advocacy. With respect to government funding for kidney cancer research, the KCA’s position has always been that funding for National Cancer Institute (NCI) should be increased and advocates should not ask for targeted increases for kidney cancer research. On the other hand, we (ACKC) believe that kidney cancer has been historically underfunded by the NCI, especially as compared to other cancer types like breast, prostate, and ovarian. Congress cannot earmark money for a specific cancer within the NCI, however, since 1992 it has been earmarking money for some cancers through its Congressionally Directed Medical Research Programs (CDMRP) managed by the Department of Defense. From Fiscal Year (FY) 1992 thru FY2005 breast cancer has received $1.81 billion for research. From FY1995 thru FY2005 prostate cancer has received $650 million for research. From FY1997 thru FY2005 ovarian cancer has received $91.7 million for research. Currently Congress appropriates $150 million a year for breast cancer, $85 million a year for prostate cancer, $10 million a year for ovarian cancer and $4.25 million a year for chronic myelogenous leukemia but ZERO dollars for kidney cancer! The CDMRP funding for these cancers was established years ago at the behest of their cancer advocacy organizations. Following their example, ACKC is also calling for funding specifically earmarked for kidney cancer research. We have made our position very clear, but the KCA’s response, as stated on their website was that they “do not endorse the earmarking of federal funds for kidney cancer research and we do not work in conjunction with any groups that do.” Their position has made our job of securing funding for kidney cancer research from the CDMRP even harder, but we will prevail because we must! Too many lives are at stake!

Beyond the DoD funding, ACKC advocates for an overall increase in federal and private funding for kidney cancer research. We look to the experience of the other cancer advocacy groups. In 1992, the NCI’s funding for kidney cancer research was $17 million and $20 million for ovarian cancer research. The NCI’s projected 2005 budget for kidney cancer is $30.5 million but, due to ovarian cancer advocacy, the NCI’s budget this year for ovarian cancer research is $100 million! There are 25,000 new cases of ovarian cancer in the United States each year and 36,000 cases of kidney cancer.

ACKC believes that when kidney cancer patients and caregivers are unified and advocate effectively, we can succeed in increasing the research funding that will find the causes, develop the screening tests and medical treatments, and eventually find a cure for kidney cancer. We hope you will join us in this effort!