2021 KidneyCAN Pitch

 Introduction

• Hello. My name is Jim Myers. I am speaking to you today on behalf of Kidney CAN and kidney cancer patients everywhere. Thank you very much for taking the time to speak with us today. 


Our Asks For 2021

• To maintain the $50m currently allocated for KCRP for the Fiscal Year 2022;

• To increase the NIH budget by $3.5B for the Fiscal Year;

• To Support the creation of ARPA-H (The Advanced Research Projects Agency-Health) at NIH with an additional $3B;

• To continue to support legislative initiatives that contribute to robust, sustainable funding for medical research;

• To continue to incorporate the patient prospective on legislative policy matters.

Congressional Funding for Kidney Cancer Research


I am here to speak to you about Kidney Cancer Research funding through the Congressionally Directed Medical Research Program (CDMRP) and cancer research funding through the National 

Institute of Health (NIH).


• Many families are confronted with a cancer diagnosis each year. That number tops 73,000 for a kidney cancer diagnosis. Although I am not a Kidney Cancer Patient, I have several friends who are and I have lost several people I know to Kidney Cancer.


As you know, I have been a PKD patient for over 40 years and a Kidney Advocate for over a decade. I was diagnosed at the age of 25 with polycystic kidney disease, on dialysis at 58, transplanted at IU Health at 62. My five year anniversary will be April 27th. I have lost 5 members of my family to PKD including my Dad.


Relevant Numbers


More than 200 diseases that we call “cancer” take a tremendous toll on our nation. It is estimated that almost 1.7 million people in the United States will be diagnosed with cancer this year. Cancer 

kills nearly 600,000 Americans every year, and almost every family in the United States has felt its impact or faced the loss of a loved one to cancer. Perhaps you have had a loved one or know 

someone who has been diagnosed with cancer?


More than 76,080 Americans will be diagnosed with kidney cancer this year or 200 people a day, and almost 14,000 died from the disease in 2020. That translates to almost 40+people every single day. Kidney Cancer is the 8th most prevalent cancer. Kidney Cancer is the 10th most prevalent cancer in women. Men are twice as likely as women to develop kidney cancer, and it is more common in African Americans and American Indian/Alaska Natives.


As you know appropriations for Kidney Cancer are not automatic and must be requested every year, for example in 2016, $0 were appropriated for Kidney Cancer in 2016, where $50M was appropriated in 2021.


For the last 50 years, almost every major medical breakthrough in cancer can be traced back to the NIH and National Cancer Institute (NCI) and medical research funding. 


Because of the previous investment in cancer research, more than 15.5 million American cancer survivors are alive today. But we still have over 600,000 cancer deaths a year in the U.S.


Last year Congress increased funding for the NIH by $1.2 billion and the NCI by $460 million in FY’21. 


Kidney Cancer in the State of Indiana


In our home state of Indiana:


• 37, 940 people have been diagnosed with cancer this year;

• 13, 630 deaths from cancer will result this year;

The economic impact of cancer research in Indiana is striking:


• $324M was awarded from the NIH in Indiana research awards;

• 5,732 Indiana jobs are supported by NIH awards;

• $890M dollars in economic activity was generated in Indiana as a result of cancer research;

• 58, 018 Indiana Jobs are supported in biotech by cancer research;

• 1, 730 Indiana businesses are supported in biotech by cancer research.

Examples of Awards for Kidney Cancer Research in Indiana Includes:

• $630,000 To Robert Pili from Indiana University Indianapolis, who received the Idea Development Award- Established Investigator in 2017



The Department of Defense Congressionally Directed Medical Research Program (CDMRP) Plays a Vital Role in Kidney Cancer Research. 


In addition to the NIH, the kidney cancer community recognizes the value of the Department of Defense CDMRP (Congressionally Directed Medical Research Program) in supporting innovative high risk/high reward, life-saving cancer research. The Department of Defense Congressionally Directed Medical Research Programs have played a vital role in Kidney Cancer research.


• Congress approved $50 million specifically for Kidney Cancer in FY’21, via the Kidney Cancer Research Program (KCRP). The program is having a significant impact and providing increased hope for our military and veteran patient community. It is also an economic driver and job creator –

creating laboratory research jobs and creating robust growth from young investigators entering this 

field of medicine. To date, 83 grants have been awarded totaling $41.5 M.


The CDMRP funds high-impact research for cancer prevention, detection, treatment, and survivorship to support current Service Members, their dependents and families, our veterans, and the American public at-large. 


Almost every major medical breakthrough in cancer can be traced back to the NCI and NIH over the last 50 years. Dr. William Kaelin, Jr. and Dr. Gregg Semenza, two 2019 Nobel Prize awardees, received an NIH grant for study of von Hippel-Lindau (VHL) disease. Their research has led to a dozen new drug treatments for kidney cancer as well as other cancers. More than 15.5 million American cancer survivors are alive today because of this research.


Congress approved $50 million specifically for Kidney Cancer research through the CDMRP in FY ’21 via the Kidney Cancer Research Program (KCRP).


Dr. Andrew Smith, from the University of Alabama (Birmingham), is a recent KCRP grant awardee. His breakthrough imaging platform has greatly improved scanning and monitoring of kidney cancer as well as all solid tumors. This research grant has led to the incubation of a startup company in the state of Alabama, several patents, and the imaging platform is pending FDA approval.


Drs. Tykodi and Akileesh, from the University of Washington are recent KCRP grant awardees. Their research on a T-Cell therapy for RCC is remarkably interesting. In blood cancers, T-Cell therapies are leading to cures. This partnership grant is allowing the University of Washington team to explore ways this exciting technology can be used to overcome challenges of targeting solid tumors and to cure kidney cancer.


As highlighted above, the KCRP/CDMRP programs are an economic driver and job creator – generating laboratory research jobs and producing robust growth from young investigators entering this field of 

medicine.


Funding of the KCRP/CDMRP through the Department of Defense helps fund high-impact research for cancer prevention, detection, treatment, and survivorship to support Service members,their dependents and families, our veterans, and the American public at-large.


There is No Duplication of Grant Awards


THIS IS VERY IMPORTANT TO NOTE!

There is no duplication of grant awards between the NIH and the CDMRP. NIH and CDMRP compare and cross-reference grant applications against existing NIH and CDMRP research data bases to confirm no duplication throughout the award process.


Money Should be set aside for both the NIH and the CDMRP


• The two funding sources do not compete or overlap. There are review committee safeguards to

ensure no duplication exists.


• The NIH and CDMRP undertake significant cancer research. 


• The NIH grant process, in general, requires more preliminary data to prove the concept drawn up in the grant application. 


• Research done through the CDMRP is generally more “High-Risk for High-Reward” in concept and has a requirement for military relevance. Although the ideas and concepts are scientifically-based, they are considered by some to be more aggressive and therefore riskier. 


• The medical research funding avenues of the NIH and the CDMRP are different yet complementary.


The Risk of Kidney Cancer to Service Men & Woman is Significant


Service men and women are at higher risk of kidney cancer due to a possible link of cancer and water contamination on military bases, ammunition dumping, and subsequent clean up compounds and exposure to some flame-retardant materials, like Agent Orange, that are linked to Kidney Cancer.


The Military Needs to Complete Research on Kidney Cancer


Service men and women may be exposed to cancer causing agents during active service. Those effects may not appear until later in life. Some studies have shown veterans have a higher 

incidence of kidney cancer than their U.S. civilian counterparts.


• There are studies that show kidney cancer is linked to smoking. Historically, many of our military personnel smoke. 


Result


The CDMRP/KCRP program is having a significant impact and providing increased hope for our military and veteran patient community. To date, 83 grants have been awarded totaling $41.5 million.


The President's Proposed ARPA-H Funding


Our last Ask concerns the Proposed ARPA-H Funding. (Advanced Research Projects Agency for Health )

Recent advances in biomedical science—from immunotherapy to treat cancer, to the highly effective COVID-19 vaccines—demonstrate the strengths and successes of the U.S. biomedical enterprise. Such advances present an opportunity to revolutionize how to prevent, treat, and even cure a range of diseases including cancer, infectious diseases, Alzheimer’s disease, and many others that together affect a significant number of Americans.


To improve the U.S. government’s capabilities to speed research that can improve the health of all Americans, President Biden is proposing the establishment of the Advanced Research Projects Agency for Health (ARPA-H). Included in the President’s FY2022 budget as a component of the National Institutes of Health (NIH) with a requested annual funding level of $6.5B, ARPA-H will be tasked with building high-risk, high-reward capabilities (or platforms) to drive biomedical breakthroughs—ranging from molecular to societal—that would provide transformative solutions for all patients.


The Kidney Cancer community supports this possible legislation. We feel that

ground-breaking research is critical to finding a cure for all cancers. 

Funding for the Advanced Research Projects Agency - Health (ARPA-H) will 

allow researchers across multiple fields to create innovative projects that will 

lead to breakthroughs to prevent, detect, and treat cancer as well as other 

diseases that aict the US population. Research funding for kidney cancer 

also has the possibility for cross-over care for other cancers. Treatments 

uncovered for kidney cancer has the potential to help other cancers and vice 

versa.


Summary of Our Asks:


The Kidney Cancer Community is asking Congress to: 

• Maintain the $50 million currently allocated for KCRP for FY ’22. *

• Increase the NIH budget by $3.5 billion for fiscal year FY ’22. **

• Support the creation of ARPA-H (the Advanced Research Projects at the with an additional $3 billion. 

• Continue to support legislative initiatives that contribute to robust, sustainable funding for medical research;

• Continue to incorporate the patient perspective on legislative policy matters.

Conclusions:


Together, we can do so much with a robust and sustained investment in medical research. Americans are getting older and chronic diseases consume most of our health care dollars. We can 

meet these challenges head-on, but to do so, medical research funding must be a strong national priority.


Thank you for your time. If you have any questions or ever require information on kidney cancer, we would be happy to be a resource.