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 initially the Kidney Cancer Coalition (KCC) but subsequently changed it to 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 an appeal to the House Labor, Health and Human Services and Education (LHHSE) sub-committee to request that the National Cancer Institute develop a strategic plan to combat kidney cancer. Over the past eleven years, we have focused our major efforts on educating the House and the Senate about kidney cancer and urging Congress to appropriate money for the Congressionally Directed Medical Research Programs (CDMRP) of the Department of Defense specifically for kidney cancer research. Through our efforts, since 2006, Congress added kidney cancer to the list of diseases that are eligible for grants as part of DoD’s peer reviewed programs, initially the Medical Program, which was then superseded by the Cancer Program (Peer Reviewed Cancer Research Program or PRCRP). As a result, kidney cancer researchers have been awarded 13 grants from FY2006 through FY2013, totaling $7.5 million. (See Figure 1 for details of these grants). However, our goal remains to have kidney cancer obtain a line item in the CDMRP budget similar to breast, prostate and ovarian cancers so we can address the kidney cancer research needs directly.
We have expanded our advocacy activities to address pharmaceutical company policy issues. For example, the ACKC initiated a campaign to petition Pfizer to develop their promising investigational drug, AG-13736 (axitinib), for treatment of kidney cancer. In 2010, a Phase III trial for previously treated metastatic renal cell carcinoma(mRCC) showed significantly extended progression-free survival when compared to sorafenib. In December 2011, the Oncologic Drugs Advisory Committee (ODAC) voted unanimously to recommend the approval of axitinib for the second-line treatment of patients with advanced renal cell carcinoma (RCC), based on the results of the Phase III trial comparing axitinib and sorafenib. In 2012 axitinib, brand name Inlyta, was approved for kidney cancer in the United States, Europe and Australia.
Another project we embarked upon was aimed at increasing awareness of kidney cancer and providing resource information to those people stricken by kidney cancer. We have published the following four Taking Charge of Kidney Cancer patient guides.
- 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 the patient and their loved ones.
Finally, we raise money in order to fund kidney cancer research projects on our own and have awarded over $360,000 over the past few years.
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) know that kidney cancer has been historically underfunded by the NCI, especially as compared to other cancer types like breast, prostate, and ovarian. Congress does not earmark money for a specific cancer within the NCI, however, since 1992 it has been appropriating targeted cancer funding through its Congressionally Directed Medical Research Programs (CDMRP) managed by the Department of Defense. From Fiscal Year FY1992 thru FY2013 breast cancer has received $2.9 billion for research. From FY1997 thru FY2013 prostate cancer has received $1.29 billion for research, and ovarian cancer has received $216.45 million for research. In 2014 Congress has appropriated $120 million for breast cancer, $80 million for prostate cancer, $20 million for ovarian 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 targeted 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 that have been successful in promoting awareness for their disease and in seeing an increase in research funding. For example, in 2001, the federal government funding for kidney cancer research was $21.8 million for pancreatic cancer research. By 2013, the NCI’s projected 2013 budget for pancreatic cancer increased to $101.9 million!
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!