Kidney Cancer Research Lobbying Campaign

by Jay Bitkower on March 2, 2011

Join our “March on Washington” Monday March 7 and Tuesday March 8

Dear Kidney Cancer Survivor/Caregiver,

As a kidney cancer survivor or caregiver, you know the horrors of this disease and the lack of effective durable treatment for metastatic disease. You are probably also aware that none of the new drugs approved to fight kidney cancer in the last few years have provided a cure with the best of them extending life by only 14 months over standard care. We need more effective drugs and other therapies to screen and treat metastatic kidney cancer. We need the research money that it will take to develop these treatments and next month Action to Cure Kidney Cancer will be going to Washington to lobby Congress for $15 million for kidney cancer research. We need you to join in this campaign.

2011 marks the eighth year that ACKC has sought to include kidney cancer funding in the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP), which is currently funding breast, prostate and ovarian cancers, but not kidney cancer. The $15 million that we are requesting for kidney cancer research would in effect double the real kidney cancer research funding by the federal government. Although we haven’t achieved that goal yet, we have gotten kidney cancer added as a research area in another DoD program, the Peer Reviewed Cancer Research Program (PRCRP), and kidney cancer researchers have won grants totaling $2.7 million in the last four years. The following researchers have won grants through this program: Maria Czyzyk-Krzeska of the University of Cincinnati to study the genetic origin of kidney cancer, Geoffrey Clark of the University of Louisville to study tumor suppressor genes, and Richard Drake of Eastern Virginia Medical School and Alexander Parker of the Mayo Clinic, Jacksonville, in a joint award to develop tools to accurately predict who is at risk of metastasis after nephrectomy. These grants were obtained as a direct result of ACKC’s advocacy efforts supported by kidney cancer survivors and caregivers like you throughout our country.

Please respond by email ASAP if you can join us in Washington so we can obtain hotel reservations and to schedule meetings with your members of Congress or their health aides. If you can’t join us personally, you can help by writing/calling your members of Congress or their health aides. Email us at with your state of residency, and we will provide you with the talking points and other logistical information you will need to help get the kidney cancer research appropriation.

3 Responses to “Kidney Cancer Research Lobbying Campaign”

  1. February 16, 2011 at 4:21 pm, Mrs H said:

    Just 1 yr and 11 days ago I lost my husband to this horrific disease, which had metastasized to his bones before it was ever detected. Not only does there need to be more research into finding more and better treatment and a cure, there need to be new standards set in regard to testing. My husband, for years, had symptoms that were either ignored or blown off as being related to something else because the current ‘national norm’ doesn’t call for testing unless there is blood in the urine. Had he been tested much sooner there’s a good chance his disease would have been found before it had spread beyond his kidney, giving a much better chance for survival.
    Also, once the disease is diagnosed, patients should immediately be referred to a kidney cancer specialist and should be given information about the various support groups available to them, neither of which was done for my husband. I didn’t even know there were specialists until after he was gone, and I didn’t know about the available support until then, either. I found out when our daughter found a group by accident when searching the web for a place to post about her grief. Someone within the kidney cancer community saw her post and contacted her and she put me in touch with them. It was after speaking to that person and being introduced to others within said community that I received the information that we should have had all along. My husband had a very good, very caring oncologist but he deals with cancer in general and, compared to more common cancers, (admittedly) knew little about kidney cancer. Had he been a specialist, I feel my husband would have received more aggressive treatment and would possibly have had a better chance for a longer, better quality of life than he had. As it was, he outlived the longest amount of time he’d been given (18 mos) by a full year but he could have, should have, had more if he’d been under the care of someone who deals strictly with this type of cancer.
    One more thing — From day 1 of his diagnosis, my husband was treated as if he was going to die instead of being treated as if he was going to live. He was flat out told that he’d not be given the more aggressive treatment he’d receive if it was thought that he could be cured. Being told something like that does nothing for the mental state of anyone except give them no incentive to fight for their own life. It has been proven over and over and over that a person’s mental state has a great deal to do with their physical state, especially when sick, so to be told that, to be treated in that way, only decreases a patient’s longevity. Every person deserves to be treated as if they’re going to live, no matter what the odds against it seem to be. That should not only be taught in every medical school, it should be practiced by every dr, clinic and hospital and enforced by every medical association nationwide. What was done to my husband was akin to throwing in the towel before the game had even started. No one deserves to be treated in that way — ever — and it needs to stop!
    Thank you for allowing me to ‘vent’. I just pray that someone in position to help make the needed changes sees it. God bless!


    • April 05, 2011 at 3:11 pm, Donna said:

      So very sorry for your loss. I am receiving weekly Torisel treatments for metastatic kidney cancer. Presently have small nodules on both lungs (radical nephrectony, 1/2010). My oncologist does not believe a bone scan will show any progression to the bone. He says pain will be the indicator. Not a pleasant thought. Did your husband receive chemo treatment? Was there any indication as to how long cancer was on kidney? My urologist estimated 3-5 yrs of growth before I felt the lump (after trying to treat anemia and weight loss). By the way … I am female and a young 66. Any info you can offer will be greatly appreciated. You can email directly to me: Again, my deepest sympathies on losing your husband.


  2. March 02, 2011 at 4:04 pm, Bryan Lewis said:

    I recently met with Chris Battle here in Washington, DC. I live on Capitol Hill.

    I am being treated for kidny cancer at NIH and currently doing very well.

    As a DC resident, my vote has little bearing in Congress. If I can be of assistance on Capitol Hill, I would be happy to assist.

    I realize it is short notice for you March 7-8 visits in DC. If I can juggle my schedule I may be able to assist or at least meet with others attending.

    Please advise.

    Bryan Lewis.

    Cell 202-431-2727.


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