NCI Summit Meeting 2006

Report On The NCI Summit For The Cancer Advocacy Community

On June 19-20, 2006, the National Cancer Institute sponsored a two-day summit session for the cancer advocacy community. The summit was held at the NCI’s headquarters in Bethesda, Maryland and Jay Bitkower represented Action to Cure Kidney Cancer at the session. What follows is Jay’s summary.

The National Cancer Institute is just one of the 27 institutes and centers that comprise the National Institutes of Health. The NIH, which was dedicated in 1941, had an annual budget of $28.4 billion in fiscal 2006. The NCI’s budget was $4.8 billion. More than 100 advocate organizations were invited to participate in the NCI summit meeting. In addition to the seminars, presentations, and poster sessions, we toured the NIH campus and the National Library of Medicine.

Dr. John Niederhuber, Acting Director

Dr. John Niederhuber was the keynote speaker of the summit. At the time of the meeting, he was the Acting Director of the National Cancer Institute, but President Bush has since announced his intention to permanently appoint Dr. Niederhuber as Director. The following are some of the highlights of his talk.

Cancer is a disease of the genome, that is, it arises from changes within the DNA. Dr. Niederhuber listed the common accepted features of a cancer:

  • Self-sufficiency in growth signals
  • Immunologic tolerance
  • Insensitivity to growth signals
  • Evading apoptosis (normal cell cycle death)
  • Sustained angiogenesis (growth of blood vessels to support the cancer)
  • Limitless replicative potential
  • Tissue invasion and metastasis

Dr. Niederhuber spoke about the frontiers of cancer biology and concentrated on three emerging concepts. The first is the changing concept of how cancer progresses. Researchers used to think that it took decades for invasive tumors to develop down a serial path from genetically altered cells to hyperplasia (abnormal increase in number of normal cells) to dysplasia (abnormal change in size and shape of cells) to in situ cancer (confined to the site of origin) to invasive cancer (metastasis). Now researchers think many interdependent cell types contribute to tumor development and metastasis with factors within the tumor micro-environment having a strong influence on tumor proliferation, survival, migration, and invasion.

Secondly, researchers hypothesize that the genetic alterations that are required to cause the cancer occur only in certain types of cells that already have the capacity for self-renewal. These cells are cancer stem cells, which have the ability to migrate to other organs. By isolating and studying these cells, scientists may gain new insights into the cancer and potential therapies.

The third concept is vaccine therapy in cancer prevention. Here, Dr. Niederhuber spoke about the human papillomavirus (HPV) infection and cervical cancer prevention. Cervical cancer is the second most common malignancy-related cause of death in women worldwide with 233,000 deaths per year. It is known that the HPV is the cause for virtually all the cervical cancers. The newly developed HPV vaccine, if properly administered, has the potential of reducing cervical cancer by more than 90%, or a potential saving of over 200,000 lives per year worldwide. Note that it was in 1999 that HPV was first proposed as a cause of cervical cancer. It took seven years from the discovery of a cause to the development of a workable vaccine.

Dr. Niederhuber related some remarkable statistics. The American Cancer Society estimates that for 2006 1.4 million Americans will be diagnosed with cancer and 565 thousand will die from it. In 2002 the costs to our nation due to cancer was $171.6 billion! This can be broken down as follows:

  • $60.9 billion in direct medical costs
  • $15.5 billion lost in worker productivity
  • $95.2 billion in lost productivity due to premature death

He notes that there has been a decline in the mortality rate for all cancers of 1.1% a year from 1994 – 2003 (note: there has not been a significant decline in the mortality rate for kidney cancer over that period – ed).

Finally, there has been a paradigm shift in the treatment of cancer from what he calls “search and destroy” to “target and control”, which involves understanding the individual’s complete genome, doing molecular diagnostics, targeting drugs of low toxicity, etc.

Finally, Dr. Niederhuber reluctantly reported that there would be a decrease in the NCI’s budget for the next fiscal year! This decline does not even factor in the inflation rate. It is difficult for us to reconcile the NCI’s goal of “eliminating death and suffering due to cancer by 2015″ with the federal government’s decreasing its budget.

For a biography of Dr. Niederhuber, go to

National Library of Medicine

Established during the Civil War as an office under the Surgeon General, the National Library of Medicine (NLM) is now the largest medical library in the world containing over 8 million books and journals. It has a staff of 1000 and is open Monday-Saturday. It contains a ten-year collection of more than 180 medical journals that are available for self-service access. There is no charge for public access to the library on site, but off-site requests, which can be made via your local public library, are $9 per request. Requests can be made by email at or by telephone at 888-FINDNLM begin_of_the_skype_highlighting              888-FINDNLM      end_of_the_skype_highlighting. Their catalogue plus other information about the library is available through their homepage at

A very useful tool that is part of NLM is PubMed, which contains over 16 million citations to medical journals dating back to the 1950s. Renal cell carcinoma, for example, has over 15,000 references. Go to their search page at Another feature on the NLM’s website is Medline Plus,, which has general health information, health tutorials, a medical encyclopedia, and even surgery videos (but none on kidney cancer).

Extramural Research Issues in Survivorship – Julia Rowland, Ph.D., Director of Office of Cancer Survivorship

The National Cancer Institute was established in 1937, but it was with the National Cancer Act of 1971, signed by President Nixon, that the NCI was allocated the money and authority to “make the conquest of cancer a national crusade”. In 1971, there were some 3 million cancer survivors, while today the current estimate is 10.5 million. Dr. Rowland attributed the progress to the following:

  • Earlier detection
  • New and more effective therapies
  • More effective adjuvant and/or maintenance therapies
  • Better supportive care
  • Growing attention to long-term surveillance

Although she didn’t mention kidney cancer specifically, the increased survivorship is most likely due to earlier detection.

Over half the current cancer survivors were diagnosed with either breast, prostate, or colon cancers. Of the 10.5 million current survivors, four million are fewer than five years from diagnosis. 50% of the survivors are over 70 years of age and another 22% are 60 – 69 years old. The current probability that someone diagnosed with cancer today will be alive in 5 years is 66%.

The goals of the Office of Cancer Survivorship (OCS) are:

  • To enhance the length and quality of survival of all cancer survivors.
  • To provide a focus for the support of research that will lead to a clearer understanding of, and the ultimate prevention of, or reduction in, adverse physical, psychosocial, and economic outcomes associated with cancer and its treatment.
  • To educate professionals who deal with cancer survivors about issues and practices critical to the optimal well-being of their patients. This educational commitment extends to cancer survivors and their families.

OCS provides research grants both within and external to NCI to study the following:

  • Identify, examine, prevent and control adverse cancer- and treatment-related outcomes (such as pain, lymphedema, sexual dysfunction, second cancers, poor quality of life).
  • Provide a knowledge base regarding optimal follow-up care regarding surveillance of cancer survivors.
  • Optimize health after cancer treatment.

Dr. Rowland quoted a study that reported 55% of survivors having a keen interest in diet programs and another 50% being very interested in exercise, but, surprisingly, 85% having no interest whatsoever in smoking cessation programs. Smoking is the largest risk factor in kidney cancer.

Finally, Dr. Rowland delineated survivorship issues being dealt with at the national level:

  • Initiation of efforts by Centers for Disease Control (CDC) to include survivorship areas/goals in state control plans (2001).
  • Focus on cancer survivorship among childhood (2003) and adult survivors (2005) by the Institute of Medicine.
  • Cancer survivorship selected as the theme for fiscal year 2004 President’s Cancer Panel.
  • Publication (2004) of a National Action Plan by CDC and the Lance Armstrong Foundation.
  • Demand by U.S. Congress (Senate) for “aggressive expansion of the Office of Cancer Survivorship” and the introduction of several bills (in both the House and Senate) that address care of cancer survivors.

NCI Website

NCI’s award-winning website has a wealth of information. Following is just a brief selection of items that would interest kidney cancer survivors.

Home Page: Types of Cancer → Kidney (Renal Cell) Cancer
This brings one to the kidney cancer page which has several choices including explanations about immunotherapies, clinical trial results and how to find a clinical trial, a portal to kidney cancer research projects funded by the NCI, a portal to the kidney cancer SPORE, a link to the kidney/bladder cancer PRG report, and several statistics links.

About NCI → Overview → NCI Strategic Plan
Order “The NCI Strategic Plan to Eliminate the Suffering and Death Due to Cancer” by 2015