About ACKC

Our Mission

The goals of ACKC are to:

• • Educate government officials, kidney cancer patients and caregivers, and the general public about kidney cancer.
  • Advocate for the increase in government and private sector funding for research to find the causes, diagnostic and treatment options, and ultimately a cure for kidney cancer.
  • Expand our national network of grassroots supporters to join us in our advocacy efforts.
  • Provide funding for kidney cancer research projects.
  • Support the work of physicians, scientists, and other researchers working in the kidney cancer field. Cooperate with other organizations in order to achieve mutual goals.

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 twenty 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, in 2006, Congress first 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that are eligible for grants as part of DoD’s peer-reviewed programs, initially the Medical Program, which was then superseded by the Cancer Program (Peer Reviewed Cancer Research Program or PRCRP). Through this program, kidney cancer researchers were awarded an average of $1 million per year. However, our goal still remained to have kidney cancer obtain a line item in the CDMRP budget similar to breast, prostate, and ovarian cancers so we could address the kidney cancer research needs directly. In 2007, after 13 years of lobbying, Congress set up the Kidney Cancer Research Program (KCRP) and seeded it with $110 million. Together, these two programs have granted close to $200 million in awards to over 100 kidney cancer researchers!

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 the 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. Stay tuned for guide updates during Q1 of 2023.

• 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.

We also raise money in order to fund kidney cancer research projects on our own and have awarded over $461,000 in 23 grants to promising researchers over the past few years.

Finally, we have started looking into the environmental causes of kidney cancer and, particularly, researched and wrote two articles on PFAS, per-and polyfluoroalkyl substances, which are found in many manufactured items such as Teflon pots and pans, take-out food container liners, Gortex, and even bottled water. Certain PFAS are known to cause kidney cancer.