Research Funding Increase - Congressional Letter

The following is the text of the letter submitted to Congress on March 6th for an increase in funding for the Kidney Cancer Research Program pursuant to the CDMRP.


February 23, 2018

The Honorable Rodney Frelinghuysen                The Honorable Nita Lowey

Chairman                                                                  Ranking Member

House Committee on Appropriations                   House Committee on Appropriations

H-305 The Capitol                                                   H-305 The Capitol              

Washington, DC 20515                                           Washington, DC 20515

Dear Chairman Frelinghuysen and Ranking Member Lowey:

We are grateful for the Committee's past support for the Congressionally Directed Medical Research Programs (CDMRP) conducted by the U.S. Department of Defense (DoD). As you know, the CDMRP’s highly innovative research drives scientific discovery in high-impact research areas not sponsored by the National Institutes of Health (NIH) and other federal agencies.

As you work to develop your respective versions of the fiscal year 2019 Appropriations Act, we encourage you to consider including additional funding for the Kidney Cancer Research Program (KCRP) at the Congressionally Directed Medical Research Program (CDMRP) managed by the U.S. Department of Defense (DoD).

We respectfully request that the committee provide $20 million within the CDMRP for the Kidney Cancer Research Program for fiscal year 2019.

During the ten years prior to KCRP approval, kidney cancer was a topic area under the Peer Reviewed Cancer/Medical Research Programs and had a limited number of successful grant applications. With the advent of the KCRP, the total number of kidney cancer grant applications skyrocketed six-fold in one year over previous submissions, confirming the major need and outpouring of interest in kidney cancer research and underscoring the research community’s commitment to finding a cure for this disease.

Unfortunately, there have been far more meritorious applications for the KCRP than there is funding available. We very much appreciate the Committee's past support and believe an increased investment through CDMRP would make a tremendous difference to many Americans, including our military, military families, retirees and veterans.

The National Cancer Institute estimates that $4.2 billion is spent in the United States each year on treatment of kidney cancer. Unlike the majority of cancers, the rate of people developing kidney cancer has been climbing for the last 65 years, and it is the deadliest urologic malignancy with 30 to 40 percent of patients dying of their cancer. Kidney cancer is the ninth leading cancer overall but ranks fourth in incidence among both African American and Hispanic males. In the United States, the incidence of RCC has increased since the 1970’s by an average of 3 percent per year for Caucasians and 4 percent for African Americans. In 2018, it is estimated that 65,340 new cases of kidney cancer will be diagnosed, and 14,970 people will die from this disease.

When found early, kidney cancer may be treated successfully with surgery, however nearly 35 percent of patients are diagnosed with advanced disease, where survival rates are very low. Additionally, as many as 40 percent of patients diagnosed with local disease will face recurrence later in life. No standard screening or other early detection protocol to diagnose kidney cancer at an early stage exists. Therefore, much work still needs to be done.

We encourage you to support an increase in the dedicated funding for the KCRP.


Kidney Cancer Action Network (KCAN)

American Urological Association (AUA)

Society for Urologic Oncology (SUO)

American Association of Clinical Urologists (AACU)

The Judy Nicholson Kidney Cancer Foundation


Action to Cure Kidney Cancer

Kidney Cancer Coalition

Powerful Patients

Joey’s Wings

Sen. Thad Cochran (R-MS) to Retire. Chair of Senate Appropriations

Sen. Thad Cochran, the senior Republican Senator from Mississippi said on Monday that he will retire from the Senate on April 1 saying his "health has become an ongoing challenge." 
"I intend to fulfill my responsibilities and commitments to the people of Mississippi and the Senate through the completion of the 2018 appropriations cycle, after which I will formally retire from the U.S. Senate," he said in a statement. 
Cochran is the chairman of the Appropriations Committee.  Sen. Richard Shelby, (R-Alabama) is expected to take over the chairman role. 

A special election will be held in November to fill the retiring Senator's seat. Until that time, the governor of Mississippi will appoint a replacement Senator.

New appointments to Budget & Appropriations Process Reform Committee

On Feb. 22, House Speaker Paul Ryan (R-Wisc.) announced appointments to the Joint Select Committee on Budget and Appropriations Process Reform. This committee was recently established by the Bipartisan Budget Act of 2018 with a goal to provide recommendations and legislative language to “significantly reform the budget and appropriations process.” Speaker Ryan appointed Reps. Steve Womack (R-Ark.), Pete Sessions (R-Texas), Rob Woodall (R-Ga.), and Jodey Arrington (R-Texas). Democratic Leader Nancy Pelosi (D-Calif.) also announced the appointment of Reps. Nita Lowey (D-N.Y.), John Yarmuth (D-Ky.), Lucille Roybal-Allard (D-Calif.), and Derek Kilmer (D-Wash.) to the new budget and appropriations panel. Senate Minority Leader Chuck Schumer (D-N.Y.) announced that Sens. Sheldon Whitehouse (D-R.I.), Michael Bennet (D-Colo.), Brian Schatz (D-Hawaii), and Mazie Hirono (D-Hawaii) would serve on the panel for Senate Democrats. Senate Majority Leader Mitch McConnell (R-Ky.) is expected to announce his appointments by the end of the week.  (Source: Adhoc Group for Medical Research, Feb. 2018)

Budget Caps deal reached. New March 23rd deadline.

On Feb. 9, after both the Senate and House approved the package, the president signed the Bipartisan Budget Act of 2018. The agreement extends the previous continuing resolution until March 23, during which time appropriators will be drafting the 12 annual spending bills under the revised discretionary spending caps. As part of the agreement, congressional leaders publicly committed to setting aside at least $1 billion of the new funding to provide an increase for NIH in each of FY's 2018 and 2019, which appropriators will implement when they draft the upcoming spending bills. Included in the deal is a lifting of the federal debt ceiling.

While an immigration deal is still being negotiated, we anticipate increased activity around an omnibus spending bill that should fund the government through the end of FY 18. 

Again to the Precipice: February 8 - Government Shutdown Deadline Looms

Congress is back to work today and negotiations are in full swing to cut a deal to avoid the government shutdown this Thursday evening, February 8. Some reports are coming in that a six week deal is in the making for a funding extension until March 23rd. While a deal on budget caps remain elusive, there are reports that an extension bill will include funding for community health centers. Also, an expected immigration bill should come out in the Senate today that is sponsored by Sen. Coons (D-DE) and Sen. McCain (R-AZ). Debate on an immigration bill was part of the deal to avoid a shutdown last month. 

Cong. Rodney Frelinghuysen (R-N.J.) to retire, State of the Union, then Budget

In a somewhat startling fashion, Congressman Rodney Frelinghuysen, Republican chair of the House Appropriations Committee, will step down at the end of this Congress. He has served for more than 20 years and has led this powerful committee of the "purse" with a steady hand. He will continue to chair the committee through the negotiations for a final FY 18 and the FY 19 appropriations bills. (His official statement is here.) As many know, the appropriations committee decisions affect the funding of all parts of the government, including medical research at the NIH, and the Department of Defense medical research funding. 

Tomorrow night at 9 p.m. EST, the President will deliver his first State of the Union address at the Capitol. Washington insiders will be dissecting each sentence of the President's message to determine what will be the coming priorities for his administration.

Current forecasts expect the President to deliver his FY19 budget to Congress on Monday, February 12th. As many know, the President's budget is considered a blueprint for spending priorities in the coming months. There is a general consensus that there will be another request for an increase in defense spending (perhaps up to $716 billion). The unknown budget numbers for non-defense, discretionary spending will continue to be the subject of much speculation. As in past years, the President's budget and final appropriations amounts will be a source of intense negotiations in the months ahead. 

Shutdown Friday night. Restart Tuesday.

After an almost 70 hour shutdown, Congress passed a continuation of current federal funding until midnight February 8. It appears that the two Senate leaders (Sen. McConnell and Sen. Schumer) agreed to a deal to continue working towards a DACA (aka "Dreamer") long term agreement. The House agreed and voted 266-150 in favor of the funding until February 8, (16 days from today). An important but not highlighted aspect of this deal is the 6 year extension of the Children's Health Insurance Program ("CHIP"). There is still no long term agreement on budget caps. Negotiations will continue. 

Kick the Can...redux?

With only a week to go before the expiration of the current Continuing Resolution (CR), there are unconfirmed reports that both sides of the aisle are inching towards a short term deal. There are discussions and rumors of a new $100 billion increase in spending caps along with a another Continuing Resolution until sometime in late February. Thorny issues that tangle the negotiations are immigration (DACA) agreements surrounding the "Dreamers", the CHIP program, border security, and several other issues. Many from both parties are unhappy, principally appropriators, the defense community and the military. Stand by for a deal at the 11th hour (perhaps no later than Wednesday, January 17th) or a government shutdown will occur late Friday, January 19th. Stay tuned.

A new year - 2018 - Advocacy News Update

  • Prior to adjourning for the holidays, Congress passed a continuing resolution (CR) for this fiscal year (FY 2018) to keep funding the government (at least until January 19th). The FY 18 fiscal year that began on October 1, 2017.
  • Capitol Hill will be bustling with activity where Members of Congress will be returning to a several unfinished issues. Many of these issues, including finalizing the FY 2018 appropriations process, will need to be resolved by January 19th in order to avert a possible government shutdown. 
  • Hopefully, the beginning of 2018 will involve House and Senate leaders coming together to finalize a bipartisan budget agreement.  An agreement should lay the groundwork for an “omnibus” appropriations bill to fund federal agencies for the rest of the FY 2018.
  • Policymakers are increasingly under pressure to reach a deal to increase the budget caps (for both defense and non-defense discretionary accounts) in order to prevent the automatic across-the-board spending cuts, known as sequestration, that were put into place under a 2011 deficit-cutting law.
  • While Congressional leadership, as well as the White House, have been negotiating behind closed doors for weeks trying to lock down a two-year budget agreement that would cover the rest of the 2018 fiscal year, as well as fiscal 2019, an overall deal has remained elusive. Both parties agree that the spending caps should be raised, but they disagree over how much. Additionally, Democrats are insisting on matching any defense increase dollar-for-dollar with nondefense increases -- a formula that many Republicans reject.
  • We believe there is strong bipartisan support from our nation’s policymakers to provide the Kidney Cancer Research Program (KCRP) within the Congressionally Directed Medical Research Program (CDMRP) with another $10 million in research funding, as well as the NIH with another $2 billion increase in FY 2018.
  • There are also many issues that are going to be part of the negotiations between now and January 19, including:
    • some measures to stabilize ObamaCare; 
    • DACA or “Dreamers” protections;
    • additional disaster relief for hurricane and wildfire victims; and
    • funding for the Children's Health Insurance Program (CHIP) beyond March. 
    • (Thank you to the AACR for providing information included in this update)

Dr. Ned Sharpless, NCI Director and OVAC (One Voice Against Cancer) Legislative Annual Meeting

Representatives from over 30 cancer advocacy organizations participated in the OVAC planning discussion this past Friday, Dec. 15th.  It was also a pleasure to hear from NCI Director Dr. Ned Sharpless early in his tenure as newly appointed Director of the NCI (National Cancer Institute) at the NIH (National Institutes of Health).  Dr. Sharpless is  passionate about cancer research and OVAC members had a unique opportunity to hear of his priorities moving forward in 2018 and beyond.  KCAN will continue to look for ways in which we as a coalition can work with Dr. Sharpless and his staff to highlight the important work being done at NCI.

Although Congress’ work on the FY 2018 appropriations are not yet complete, OVAC members made good progress discussing our FY 2019 appropriations requests.  However, we did make some key initial decisions should Congress complete a budget deal and pass an omnibus appropriations bill for FY 2018.  Moreover, based on our discussion we are making an addition to our advocacy agenda:

  • Although we do not have the final numbers for NIH and NCI, there was consensus that OVAC will pursue a $2 billion increase for NIH plus CURES funding ($215M) for FY2019.  OVAC will pursue a proportional increase for NCI based upon final FY 2018 numbers when they become available.
  • For the CDC DCPC programs in FY 2019, OVAC will continue to request the same levels as in FY 2018. Funding levels for the HRSA Title VIII Nursing Programs as well as FDA are still to be determined.
  • There was consensus that OVAC express support for the FDA’s Oncology Center of Excellence (OCE) for $15 million within our appropriations narrative. 
  • Our Labor-HHS (Health and Human Services) requests will continue to be a priority for the coalition and the focus of our advocacy days, however, we will continue to find advocacy opportunities for our non-Labor-HHS requests including the CDMRP and FDA OCE.

Holidays, Government shutdown?, Senate Election in Alabama, and Taxes

The government gave itself a two week extension to get some matters concluded prior to the holiday break and year end.

On Dec. 7, House and Senate lawmakers approved H.J. Res 123, a continuing resolution (CR) to fund the government through Dec. 22. The president signed the CR on Dec. 8. The CR modifies the expiration date of the previous CR (P.L. 115-56) from Dec. 8 to Dec. 22, so all provisions in the previous CR, carry forward. The two week extension is meant to provide additional time for congressional leadership to negotiate.

Many Americans are watching to see what transpires in the Senate race in Alabama. Polls open Tuesday, Dec. 12.

Regarding tax news, you may feel like you are caught in a game of hurry up and wait while the House and Senate work out their compromise tax bill. Like many Americans, you’re probably wondering what deductions will be in or out. And which tax rate you might fall under when all is said and done.

The compromise committee set up to work out the details of a unified bill aims to finish its work by December 15 and bring it to the full House for a vote during the week of December 18. The Senate is expected to vote by December 22. If a bill is passed this year—and that is looking increasingly likely--many of its provisions will take effect on January 1. (source ML news 2017)

Workshop at NIH - Adjuvant Kidney Cancer Trials

I attended a workshop at the NIH Campus in Bethesda, MD with a number of kidney cancer oncologists, surgeons, FDA representatives, National Cancer Institute staff (NCI), Society of Urologic Oncology (SUO), and several industry and patient advocates. The following is some background information:


The FDA, NCI, and SUO have agreed to joint development of a public workshop that may improve the conduct of adjuvant clinical trials in bladder cancer and kidney cancer by harmonizing definitions and management of disease recurrence. Currently, no standard definition of disease recurrence is used in these adjuvant trials. Standard practices would generate consistency and facilitate interpretation of trial results. This joint venture will enable the oncology community to combine its resources and knowledge to optimize clinical trial utility and efficiency to better serve our patients.

Goals and Objectives:

  • To standardize definitions of disease recurrence for use in bladder and kidney cancer adjuvant trials
  • To develop methods for managing disease recurrence in patients on adjuvant bladder and kidney cancer adjuvant trials
  • To discuss clinical trial and research designs with the goal of generating consistency among clinical trials in the adjuvant bladder and kidney cancer setting
  • To define common goals and methods for these adjuvant trials in the form of a potential guidance document

For more detailed information you can go here:


RESOURCE: Congressional Briefing Panelist Slide Decks

After an engaging and informative discussion at our October 12th event, we wanted to share our panelists PowerPoint slide decks. Whether you attended and want to re-visit some of the discussion points, or were not able to join us on Capitol Hill, you can find each of the four slide decks below. Many thanks to our speakers for allowing us to share their slides!

Michael B. Atkins, M.D..png

Michael B. Atkins, M.D.

Carolyn Best, PhD.png

Carolyn Best, PhD

Jay Bitkower.png

Jay Bitkower

Mohamad E. Allaf, MD.png

Mohamad Allaf, M.D.

RECAP: Congressional Briefing Event - Part 1

Thank you to all who attended the congressional briefing on Capitol Hill last Thursday, October 12th. Below are a few photos from the event. Please stay tuned here on our blog for a full recap of the event, including more photos and downloadable slide decks from each of our panelists.


KCAN at the Dana Farber/Harvard Cancer Center Kidney Cancer Symposium

On September 15th, KCAN joined patients, family members, caregivers, and doctors in Newton, Massachusetts at the 10th Annual Dana Farber/Harvard Cancer Center Kidney Cancer Symposium.

Our founder, Bryan Lewis, concluded the third session of the day with a presentation about KCAN's mission and goals. Click here or use the button below to watch the entire third session and see Bryan's presentation at the one hour and thirty minute mark (1:30). 

KCAN Founder Bryan Lewis speaking at the 10th Annual Dana Farber/HCC Kidney Cancer Symposium

KCAN Founder Bryan Lewis speaking at the 10th Annual Dana Farber/HCC Kidney Cancer Symposium