Thursday, March 15, 2007

ESUN Bulletin: An Urgent Call to Action

The following is reproduced in its entirety from the Electronic Sarcoma Update Newsletter (ESUN). To see it with all the proper formatting, you can go to the original:

An Urgent Call to Action
Unfortunately, funding at the Federal level in the United States for cancer research and control has been level for the past several years. Contrary to what you may believe, the actual budgeted and allocated funds for the National Cancer Institute (for cancer research) and for the Centers for Disease Control (for cancer control programs) has not increased. To the contrary, when you factor in a 3-5% inflation rate, actually funding has been decreasing by about $150 million per year.

This decrease in funding will undoubtedly have serious effects on a rare cancer like sarcoma. One can easily project that it will be increasingly difficult for sarcoma researchers to obtain funds for basic research in many of the important areas that offer promise today. It will also be increasingly difficult for these researchers and their colleagues to begin or continue the small and large scale clinical trials that are needed to move basic science results into effective treatment protocols. Notice, I use the phrase “to continue.” One can easily project a scenario where decreasing budgets will potentially result in the situation where some clinical trials currently in progress cannot continue because of the lack of funding. This would, of course, have extremely serious consequences for patients and their families and the cancer centers and hospitals involved. There have recently been efforts within the international sarcoma research community to concurrently undertake clinical trials in several nations. Some of these efforts might also be in serious jeopardy if the funding in the United States for sarcoma research continues to decrease. As an example of the disastrous effects of the reductions in cancer research funding, see the sidebar on SWOG, below.

SWOG’s Dilemma: An Example of the Problem
The Southwest Oncology Group (SWOG) is one of the largest cancer clinical trials cooperative groups in the United States. Funded by research grants from the National Cancer Institute (NCI), the Group conducts clinical trials to prevent and treat cancer in adults, and to improve the quality of life for cancer survivors. SWOG is a network of more than 5,000 physicians who work in a variety of medical settings and have a strong interest in bringing innovative cancer treatments to their patients. SWOG trials are conducted by investigators at more than 550 institutions, including 17 of the National Cancer Institute's 61 designated cancer centers. You can read a memo that Dr. Larry Baker, SWOG’s Chair, wrote to the SWOG members in December 2006 about the difficult decisions that SWOG is facing in light of significant reductions in its NCI funding by clicking here. You can easily speculate that similar discussions are underway in cancer research facilities throughout the United Stated.
Additional insights in the severity of the problems induced by reduced cancer research funding are articulated in the article, Prepare and Plan for Financial Constraints on Clinical Trials, which appeared in the January 2007 issue of the Journal of Oncology Practice, Vol. 3, No. 1, pp. 37-38. Click here to view this article.

Unfortunately, the burden for funding sarcoma research is falling increasingly on sarcoma advocacy groups and foundations. Also, some pharmaceutical companies are playing an important role in clinical trial support for some types of sarcomas. In addition to supporting basic research, funds from advocacy groups and foundations have gone to support the development of research infrastructure (e.g., buying equipment, acquiring space, funding tissue banks, hiring lab technicians, and paying indirect and administrative costs) — expenditures that many would argue should be paid for by federal budgets. The importance of sarcoma advocacy groups and foundations, particularly in times of decreasing public funds, cannot be overstressed. We will always have to fend for ourselves if Congress and NIH cannot be influenced to act on our behalf. Just as the efforts of sarcoma advocacy groups and foundations have been producing results in funding sarcoma research and research infrastructure, we as individuals can work on behalf of the sarcoma community in the public arena.

I urge those in the United States who read ESUN to contact their Representatives and Senators and urge them to reverse this downward trend in the funding for the “War on Cancer” and to increase the funding for the National Institutes of Health. Strongly recommend that they explicitly target some of the funding for sarcomas and other rare cancers. This is an urgent issue as the current Congress begins its debates related to the budget. I recommend that you write to your Representative and Senator soon. I am also suggesting that you encourage your family, friends, colleagues and anyone who wants to support research to help find a cure for sarcoma to write such a letter as well.

Click here is obtain your Representatives’ address in the US House of Representatives

Click here to obtain your Senator’s address in the US Senate

A sample letter that you might consider sending follows the end of this editorial. You are encouraged to personalize it to suit your needs.

At best, At worst
Arthur Beckert, Executive Director of the Sarcoma Alliance in reflecting on these issues in the Sarcoma Alliance News (Vol. 5, No. 3) last year said, “If President Bush’s proposed budget passes, opportunities for treating, preventing and eliminating cancer will, at best, hold stagnant. At worst, cancer deaths will begin to rise again. This could have particularly dire consequences for sarcoma research since it already gets such a small piece of the pie.”
For an additional discussion of the impact of the decreased funding see the article, “Funding Concerns Hit Some Cancer Trials”, by Amy Dockser Marcus, Wall Street Journal, February 7, 2007, Page D3.

If we don’t speak out, who will? There is strength in numbers.

Bruce D. Shriver, PhD
Editor-in-Chief, ESUN

[End Note: The above editorial was distributed as an "ESUN Bulletin" last week to the ESUN Notification list because of the urgency of the situation and the upcoming date on which Congress must act on budgets that will affect cancer research and clinical trials in the United States. All agencies under the US Department of Health and Human Services, which includes the National Institutes of Health and, subsequently, the National Cancer Institute, have been operating under a "continuing resolution," which extended the fiscal 2006 budget levels until February 15, 2007 when Congress must either pass the Fiscal Year 2007 budget or extend the resolution. Shortly after the distribution of the editorial it was learned "The budget cutbacks will affect trials for all cancers, but especially those studying sarcomas, and head and neck cancers.The Southwest Oncology Group will halt all sarcoma, and head and neck trials. The Eastern Cooperative Oncology Group will eliminate its brain and sarcoma trials. Many other groups will delay various late stage cancer trials, thus, pushing back possible new treatments for needy patients"; see Federal Funding Constraints Forces Elimination of Cancer Trials.]

Sample Letter


Senator’s/Representative’s address

Dear Senator/Representative X:

RE: Funding to support cancer research

We are turning the “War on Cancer” into an under funded skirmish and jeopardizing our ability to make substantial progress in finding a cure for cancer and to affect the quality of life of the hundreds of thousands of families dealing with cancer.

I am very concerned about the dire effects on basic cancer research and clinical trials given the level of funding for cancer research that Congress has targeted for NIH over the last several years. I urge you and your colleagues to work to increase funding for cancer research in general and to specifically earmark a portion of these funds for sarcomas and other rare cancers.

I am particularly concerned about the urgent situation facing biomedical research in the United States due to inadequate funding and strongly recommend that you actively sponsor and support legislation to protect the nation’s biomedical research program by significantly increasing funds to NIH. Please act now to support a significant increase in funding for cancer research in Fiscal Year 2007 and beyond until this disease is conquered.

Sincerely yours,


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