Advocate
Advocate
Why Advocating Matters
The current federal funding for the kidney cancer research is not enough – people impacted by kidney cancer still need new treatment options, treatments that cause less intense side effects, methods for early cancer detection, biomarkers to guide treatment decisions, and better quality of life. Use your voice and tell your elected representatives why kidney cancer matters to you and how they can help unlock the cure by increasing funding through key federal institutions.
Since 1992, the US Congress’s House Committee on Appropriations has provided funding for the Congressionally Directed Medical Research Programs (CDMRPs) in the annual Defense Appropriations Act. Specific funding levels are provided for disease-specific programs including common cancers and rare diseases.
Kidney cancer has a designated research program – the Kidney Cancer Research Program (KCRP) – with its own funding allocation through the CDMRP. Funding for each program within the CDMRP is determined through a rigorous legislative process involving grassroots advocacy, careful vetting by the Appropriations Committees, and scrutiny from individual members of Congress and the media. The KCRP was formed in 2016 with a $10 million allocation. Because of the committed advocacy of the kidney cancer community, the allocation in for the past several years has been $50 million annually. The Appropriations Committee also allocates funds for the National Institutes of Health and the National Cancer Institute, both important places for kidney cancer research. The KCRP, NIH, and NCI are among the main institutions we come together with one voice to advocate funding for!
Step 1: Write to Federal Representatives
Send a letter to Congress and Senate leadership
The US Congress and Senate fund the federal government’s vital activities to keep the United States safe, strong, and moving forward. Your experience – your story – can help encourage our representatives to keep funding kidney cancer research!
Step 2: Write to your Congressperson
Tell your representative why research funding is important to you
Whether you’re a patient, caregiver, family member, or friend, let your representatives know how kidney cancer affects you. Keep the kidney cancer community at the top of their minds and show them how important it is to continue funding research. Make the sample letter below your own then find your congressperson and use your voice!
Sample Advocacy Letter
Make this sample letter your own with your story and email your representative!
RE: Support kidney cancer research funding
Dear
My name is ______and I’m from _______. Thank you for your continued support for the Congressionally Directed Medical Research Programs (CDMRP) by which the Kidney Cancer Research Program (KCRP) is funded. The groundbreaking research that results from the KCRP gives many like myself hope that we can soon unlock the cure for kidney cancer.
Your personal story.
Example: I was diagnosed with stage 4 renal cell carcinoma in February of 2020 and had surgery followed by immunotherapy treatment. Along the way I’ve had successes and challenges. This disease has affected my family and friends, too. It puts pressure on every aspect of my life – my work, my diet, my relationships – and is a constant burden. As a cause near to my heart, I ask for continued funding so that patients like me can get effective treatment and so that future patients will have more hopeful prospects
Kidney cancer is one of the ten most common cancers. According to the American Cancer Society, over half a million people in the US live with this disease and about 82,000 people are expected to be newly diagnosed in 2024. Sadly, nearly 15,000 people are expected to die of kidney cancer this year. Advancing kidney cancer research to develop new and better treatment options for everyone remains an urgent priority.
Increased funding overall has resulted in tremendous gains for the kidney cancer community. Thirty years ago, people diagnosed with kidney cancer had no treatment options and a bleak future. Today, there are over a dozen approved treatments and clinical trials expand treatment options even wider. Research on a kidney cancer-causing gene was the genesis of the discovery about how our cells adapt to their environment that won two American physician-scientists a 2019 Nobel Prize in Physiology or Medicine and could change how cancer is treated.
Despite these advances and CDMRP and National Institutes of Health funding, kidney cancer remains all too common and deadly.
I hope that my story can serve as a window into my world and the challenges that someone impacted by kidney cancer faces. Strong research programs lead to the groundbreaking discoveries that my community needs desperately.
Your commitment to addressing the burdens of kidney cancer on people like me through robust, sustained research funding is vital for providing access to effective care, support, and hope. I encourage you to support legislation for:
- $60 million for the Kidney Cancer Research Program under the CDMRP
- $51 billion for the National Institutes of Health (NIH), including $7.934 million for the National Cancer Institute
- $1.5 billion for the Advanced Research Projects Agency-Health (ARPA-H)
In addition, I ask that any efforts to reform the NIH through appropriations legislation or otherwise be carefully considered and made in consultation with affected stakeholders, including NIH officials, researchers, and critically, the patient advocacy community. Along those same lines, we urge you and your colleagues to incorporate patient perspectives in all legislative policy matters, particularly those that promote clinical trial development, diversity in clinical trial enrollment, and accelerating cures.
I am grateful for your service and hope that you continue to give this matter your full consideration.
Sincerely,
Your NAME and ADDRESS