Action to Cure Kidney Cancer

Funding Kidney Cancer Research: A Search for Equity

Kidney cancer patients, families, and caregivers need to take action and can have a dramatic effect. Kidney cancer is a silent killer, with no symptoms until the disease has metastasized (spread beyond the kidney). Even though it's one of the deadliest cancers, there is still only one treatment that aims at a cure. This treatment is not widely available, many patients cannot tolerate its high toxicity, and it has a low response rate; only a very small percentage of patients are cured. Even for patients who are non-metastatic upon diagnosis, the disease often recurs, sometimes many years later, meaning that even those who are cured live under a shadow. Other available treatments aim to retard disease progression, but have done little to prolong life. There is no routine screening for the disease. It is considered a "rare disease," so it receives little attention and low funding from government and private researchers. And unlike most other cancers, its incidence and mortality rates are increasing. 

In 2003, kidney cancer patients and caregivers started an organization to raise awareness of kidney cancer and take action to increase government and private funding for kidney cancer research. The association, called Action to Cure Kidney Cancer (ACKC), is incorporated as a 501(c) 3 Not-for-Profit corporation.

The 30% of kidney cancer patients whose disease is discovered late have only a 9% chance of being alive five years later.⁽ⁱ⁾ If we include the patients whose tumors are discovered earlier (many by accident), the overall 5-year survival rate is still only 63%.⁽ⁱⁱ⁾ The average age of diagnosis is 54, but kidney cancer strikes many in their 30s and 40s. Thus this disease has a considerable impact, often striking people in the prime of their social and economic lives.

Advocates for the most common cancers like breast, colon and prostate cancer receive the lion's share of attention from the public, and from private and government researchers. Celebrity fundraisers have raised hundreds of millions of dollars to support and enhance research and treatment, and raised the public's awareness of these efforts. In contrast, kidney cancer, which strikes 36,000 Americans a year,⁽ⁱⁱⁱ⁾ receives only a trickle of research funding and effort. The pharmaceutical industry is mobilized to cure prostate cancer, which has 230,000^(iv) new cases a year. Kidney cancer's small population and high level of drug resistance make it a low priority for pharmaceutical companies. Despite recent advances, including discovery of the genetic roots of the most common forms of the disease, kidney cancer research lags far behind. And patients suffer: with only one currently approved treatment and two in the pipeline for next year, there are still too few clinical trials of promising new kidney cancer therapies.

Government funding shows a similar picture. The National Institutes of Health,^(v) the nation's medical research agency, considers cancer one of its top priorities, but kidney cancer research is under funded there, as well. The National Cancer Institute (NCI) allocates $30.5 million^(vi) for kidney cancer research in its 2005 budget, compared to $310 million for prostate cancer research. And kidney cancer is far more deadly: over 12,000 people die from kidney cancer each year as compared to 30,000 from prostate cancer. But prostate cancer patients have a 5-year relative survival rate of 98%, while the 5-year survival rate of kidney cancer patients is about 63%.^(vii) If we look closer at those numbers, we can see that the NCI spends more than four times the money for each prostate cancer death than it does for each kidney cancer death ­ and almost twice as much per prostate cancer patient than kidney cancer patient.^(viii)

The burst of attention and money aimed at prostate cancer has been effective: the mortality rate for prostate cancer patients has fallen by 28% since its peak in 1997. During that same time period, the mortality rate for kidney cancer has increased by 10%!^(ix)

Curing cancer is not an easy job. Medical research is complex, and every cancer is different. But kidney cancer patients deserve equitable treatment with other cancer patients. Action to Cure Kidney Cancer proposes the following actions to promote research on kidney cancer:

• Increase the NCI research budget for kidney cancer from its current level of $30.5 million a year to $100 million a year. This increase would give kidney cancer research the same amount of funding per mortality as prostate cancer research.
• Implement the NCI's Progress Review Group's (PRG) recommendations delineating kidney cancer research priorities. These priorities were developed by the leaders in the field and will represent the most focused, best effort at curing kidney cancer.
• Secure NCI funding for two additional kidney cancer SPOREs.^(x) These centers of excellence around the country focus talent and promote rapid innovations in cancer research.
• Appropriate $15 million to the Congressionally Directed Medical Research Programs (CDMRP) within the Department of Defense (DoD) to fund kidney cancer research.
• Raise private funds to support innovative genetic and other research efforts related to kidney cancer to develop an accurate and economical screening test and effective treatment modalities for kidney cancer.

The ACKC asks for your support. Together, we will promote funding for kidney cancer research in proportion to its rate of incidence and mortality. With your help we will find a cure and provide effective treatment and diagnostic options for all kidney cancer patients.

Thirty-four Americans die each day from kidney cancer ­ but together, we can find a cure!

1. Priorities of the Kidney/Bladder Cancers Progress Review Group, National Cancer Institute, May 2002.
2. Surveillance, Epidemiology, and End Results Program, 1973-1999, Division of Cancer Control and Population Sciences, National Cancer Institute.
3. Cancer Facts and Figures 2005, American Cancer Society (a 16% increase in the last 5 years).
4. Cancer Facts and Figures 2005, American Cancer Society.
5. Part of the U.S. Department of Health and Human Services, www.nih.gov
6. NCI, Financial Management Branch, FY 2005 Projections.
7. Surveillance, Epidemiology, and End Results Program, 1973-1999, Division of Cancer Control and Population Sciences, National Cancer Institute.
8. Funding for each prostate cancer patient: $1,348, funding for each kidney cancer patient: $847. Funding for each prostate cancer death: $10,333, Funding for each kidney cancer death: $2,542.
9. Cancer Facts and Figures American Cancer Society 2005, NCI Fact Book (1996), Mortality Tape 1993 National Center for Health Statistics.
10. National Cancer Institute SPOREs (Specialized Programs for Research Excellence) are multidisciplinary medical research projects that focus on particular cancer types and seek ³to reduce cancer incidence and mortality, improve survival, and improve the quality of life² of cancer patients. The NCI currently has 58 SPOREs for 14 different cancer areas. There are 11 SPOREs for prostate cancer and 10 for breast cancer. There is only one SPORE currently funded for kidney cancer research.