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Policy Update
A Second Draft of a Bill to Reauthorize the NIH is Circulated On August 22, the Energy and Commerce Committee released a second draft of a bill that would reauthorize the National Institutes of Health. Along with the revised draft [download revised draft] , a document was circulated by the Committee that summarized the major changes from the first discussion draft [download summary]. For example, the new draft clarifies “that the authorities of the Institute and Center Directors to oversee research programs within the Institutes and Centers remain exactly the same as is current general practice at NIH today…” while “the NIH Director will be responsible for program coordination across Institutes and Centers, to ensure that the research portfolio of NIH takes advantage of collaborative, cross-cutting research.” With respect to “trans-NIH research activities, only those projects “recommended by an advisory council (membership and appointment to be determined, see attached example) will receive funding” and the NIH Director “will not have additional grant making authority; rather, the NIH Director will allocate funding to the Institutes and Centers to carry out the trans-NIH research activities.” The revised draft maintains provisions that would classify all the existing institutes and centers as either “mission-specific” or “science-enabling.” The bill would then authorize Congress to appropriate a yet unspecified lump sum to those 2 categories in addition to a yet unspecified amount to the Office of the NIH Director for FY 2007, 2008, and 2009 (as opposed to appropriating a specific amount for each of the 27 NIH Institutes and Centers). One of the more significant changes in the draft is the establishment of a “common fund” that would gradually expand over the proposed three year authorization period for Trans-NIH research activities instead of using the transfer authority for this purpose. According to the Committee’s summary of changes, a yet unspecified “percentage of overall NIH funding will be set-aside to fund trans-NIH research activities…Money set-aside for trans-NIH research activities will be allocated to the Institutes and Centers to conduct research activities identified through the Division of Program Coordination, Planning, and Strategic Initiatives and recommended by the advisory council.” AAMC/FASEB Town Hall on NIH Reauthorization Highlights Major Issues and Concerns Although it was planned well in advance, the AAMC and FASEB town hall on NIH Reauthorization that was held on August 25th provided an excellent venue in which to discuss the revised discussion draft for NIH reauthorization. More than 100 people attended representing a broad spectrum of health advocacy organizations and professional societies. Cheryl Jaeger (Senior Policy Advisor for the Office of the House Majority Whip) provided some introductory remarks explaining Chairman Barton’s vision for the legislation and what they were hoping to accomplish. She then fielded a variety of specific questions from the audience, largely focused on the major placeholders in the discussion draft such as the authorization levels, the composition of the advisory council, the percentage levels for the common fund and transfer authority, and the process for determining the funding levels for individual institutes and centers...[full article continued] FOCR Activities
Tour de Cancer The President’s Cancer Panel, established by the National Cancer Act, monitors and evaluates the National Cancer Program (NCP) and reports at least annually to the President of the United States on impediments to the fullest execution of the program. The panel hosts meetings that bring together key stakeholders and decision makers with the goal of identifying actionable steps that can be taken toward furthering selected recommendations of the Panel in these areas and encouraging commitment from and collaboration among key stakeholders. GW and FOCR present "Distinguished Lecture Series"
On September 8th, 2005, The George Washington Cancer Institute, in partnership with the Friends of Cancer Research, kicked off its “Distinguished Lecture Series.” The first of what promises to be an impressive series featuring key decision makers from the health policy community showcased Dr. Lester Crawford, who recently became the new Commissioner of the Food and Drug Administration. Dr. Crawford presented a lecture entitled “Cancer Health Policy, Delivery Systems, and Regulatory Affairs,” to a crowd of physicians, medical students, and administrators. (Pictured: Dr. Alan Wasserman, Chairman of Department of Medicine at GWU), Dr. Ellen Sigal of FOCR, Dr. Lester Crawford of the FDA, Dr. Stephen Patierno of the GW Cancer Institute.) Dr. Crawford’s lecture focused on the Critical Path Initiative at the FDA. The Critical Path aims to enhance public health by speeding up the drug approval process while maintaining adequate safety and efficacy, an especially important issue in oncology drug development. Another FDA program that Dr. Crawford discussed is its collaboration with the National Cancer Institute. The FDA and the NCI have merged their talents and resources to get the Office of Oncology Drug Products up and running at the FDA. As a part of the FDA-NCI partnership, a fellowship program has been initiated that will offer research scientists the opportunity to spend one year at the FDA and a second year at the NCI learning about cancer-related research and regulatory processes. Details for upcoming lectures from the Distinguished Lecture Series, which is also in conjunction with the GW Department of Medicine and Medical Grand Rounds, will be posted on the GW website at the following address: http://www.gwumc.edu/sphhs/healthpolicy/calendar.html Upcoming Event to Honor Commissioner of the FDA Friends of Cancer Research, along with the support from the American Association for Cancer Research, the American Society of Clinical Oncology, the American Cancer Society, and the Association of American Cancer Institutes, will be hosting a reception later this month recognizing Dr. Lester Crawford as new the commissioner of the Food and Drug Administration. The event will bring members of the cancer community and beyond together to emphasize the FDA’s role in advancing the fight against cancer. For more information, please email info@focr.org
Senior Vice President of Government Relations for the The Christopher Reeve Foundation, Michael Manganiello gives his account of his personal connection to the healthcare community, sets the record straight on misconceptions in the stem cell research debate, and reflects on the opportunities for collaboration among all organizations working to improve the lives of those who are chronically ill and disabled. [Full interview]
Relatively Poor Survival Statistics for Patients in the ‘Gap’ Years Clinically speaking, young adults are often defined as being between approximately 15 to 19 years of age and 45. The expression ‘mind the gap’ has come to be used in reference to cancer mortality rates in this age group, because unlike children and older patients, these ‘gap’ aged individuals have collectively seen no improvement in their cancer survival statistics over recent years. The question remains unanswered as to why young adults have collectively not seen much improvement in their overall survival rates. It is likely that the lack of progress in survival rates for this age cohort are due to multiple and often interrelated factors including the aggressiveness of the cancer, participation in clinical trials, delayed diagnosis, and a lack of fundamental knowledge about how best to treat and care for young adults with cancer. We know that very similar cancers are often very different diseases molecularly, and it may be reasoned that cancer that strikes a 30-year-old is biologically more aggressive, or is the result of worse than average host defenses, when compared to cancer in a septuagenarian. Therefore we are dealing with a stronger attacker, a weaker defender, or both, and the outcome is predictably going to be worse in many such cases. We must do a better job of studying and understanding cancer in this age group if we are to make progress against it. It is in areas where, socially speaking, we have some greater control that the ‘gap’ becomes even more troubling. Because they are looking for such subtle results, cancer clinical trials have inclusion and exclusion criteria, including age, that are amongst the most rigorous in any research effort. There is a relative lack of work being done on those in the young adult age group, in some part because the diseases being worked on are found much more commonly in those older than 45. Although cancer remains a disease that is more prevalent in older populations, over 116,000 people between the ages of 15 and 45 are diagnosed annually. However, clinical trial participation lags sharply in this group. Generally speaking, older adult populations, and perhaps the childhood population as well, may have the freedom, insurance, and advocacy necessary to encourage trial participation. The case may be markedly different for a young adult who may be a parent, tenuously employed or financially strapped, with little or no health insurance coverage. While death due to cancer is always a tragic event, the tragedy is multiplied when one considers the likelihood that a 20 to 45-year-old may be a mother or father of young children. In such cases the illness and loss will have an emotional and economic impact that is difficult to estimate. And cancer is now the biggest disease killer in young adults. Fortunately, there is an emerging effort to focus more attention on the young adult patient population and to be more assertive about improving their survival rates. The first steps are already being taken at the NCI and within the cancer advocacy community led by groups like the Lance Armstrong Foundation, the Ulman Cancer Fund for Young Adults, Planet Cancer, and the Young Survival Coalition. By expanding or establishing various programs and setting new research priorities we can make it easier for young adults to find out if they have cancer, expand and improve their treatment options, and provide them with better resources for addressing long and short-term survivorship issues. http://www.livestrong.org/site/c.jvKZLbMRIsG/b.865471/k.B49/Young_Adult_Alliance.htm http://wableyer.oncologymail.com/index.html http://www.ulmanfund.org/index.asp
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The
President’s Cancer Panel held its latest round of meetings on August
25th and 26th in Washington, DC to discuss
“follow up” priorities from last year’s meetings on cancer
survivorship. The overall theme of the 2 day event was “
