NBCC Conference – 2006
Summer 2006 Newsletter Supplement
Seven BCCR advocates attended the National Breast Cancer Coalition’s15th Annual Conference in Washington DC from April 29th – May 2nd, an opportunity to hear three days of presentations from experts in the worlds of medicine, science, government, and media, followed by a fourth day of lobbying activities on Capitol Hill.
NBCC Director Fran Visco opened the conference by labeling 2005 as a year of advances, but reiterated that advances are useful only in the context of consumer perspective. We are living on the edge of exciting potential discoveries for earlier diagnosis and better treatments; in the end, however it is what is usable to the individual patient that is the measure of advancement.
In three days of information-packed panels and workshops, recurrent themes emerged: The increasingly understood complexity of the disease, the need to “think outside” and look beyond current markers and treatments to explore new areas of targeted interventions, and the importance of not only disease prevention, but appropriate and accurate diagnosis. Attendees also heard panels of experts discuss issues of funding, political disagreements on which paths will yield the most progress, the perceived weakening of influence of the Food and Drug Administration (FDA), with resulting impact on the effectiveness of clinical trails, and the growing impact of Health Information Technology (HIT), the new world of computerized medical data which is changing how medical histories are taken, recorded and archived.
In the next few issues, you will be reading articles that will focus in detail on recent advances in treatment, complementary therapies, and Breast Cancer in the media.
Although very difficult to select just a few items from the vast amount of information, this is a sampling of what we heard:
- Breast Cancer is not one disease; it is several. Four major disease processes have now been identified for Breast Cancer. The time is approaching when a cancer will be treated according to its own molecular analysis, regardless of where in the body it is located.
- In 2006, researchers are working to uncover and develop a genetic profile to better understand which tumors will progress and which will not, and which patients will benefit from chemotherapy and which will not. Genomics will also lead the way to biological treatments, i.e., non-toxic treatments which, unlike chemotherapy, target only cancer cells.
- New treatments will focus on different points of intervention, “exotic targets” in the words of Dr. Peter Raved from Texas. These include targeted therapies, angiogenesis (stopping the blood supply which feeds tumors), a myriad of other cell receptors in addition to the familiar ones, such as estrogen, and looking at other mechanical pathways to intervene and stop disease “We have worshipped at the altar of estrogen and Herceptin,” in the words of Dr. Patricia Steeg, “and it’s time to look at a whole world of other targets.”
- The growing use of nanotechnology will result in targeted nano-therapeutic agents, as well as greatly improved imaging techniques. “Nano” substances, i.e., comprised of 200 atoms or less, are not without controversy. Their long-term effects are not understood, and some scientists warn that nanotechnology holds hidden ecologic dangers.
- A normal mammary stem cell was isolated within the last few months, a cell with the capacity to self renew and generate daughter cells. Scientists now have an opportunity to study how these cells function, how they contribute to tumor growth, and what, if any, different sensitivity they have to anticancer drugs.
- In the end, a sober reminder of how complex these diseases – plural – really are came in the words of Roswell Park researcher Kirsten Moysich, Ph.D., “We only understand 30% of Breast Cancer.”
A Word About Screening
- The goal of screening is to reduce deaths from disease, not to find more incidents of cancer. Paradoxically, the numbers of “overdiagnosis” continue to rise, with more women undergoing repeated screenings and unnecessary biopsies.
- The role of film vs. digital mammography remains controversial. One study, in which several hundred women underwent both to detect their tumors, yielded the following results: In 29%, neither film nor digital found the tumor; in 36%, both did; in 19%, digital alone found the tumor; and, in 16%, film alone did. In the words of cancer detection researcher Dr. Gilbert Welch, “We know no more this year than last about the effect of mammography on death rates.”
- There is no disagreement: Prevention is the ultimate cure. Advocate for it!
Incidence and Death Rates
- Although the death rate from Breast Cancer appears to be going down, the incidence rate continues to rise.
- Whether the death rate is actually decreasing, however, is questionable. Patients are living longer with the disease, and thus have longer disease free intervals with fewer short-term mortality statistics; however, the mortality rate over time has not substantially decreased.
Some Old Questions
- For some time, it has been theorized that early pregnancy offers protection against breast cancer. Does it? New research offers three explanations: 1. Mammary stem sells “mature” during pregnancy, thus becoming more resistant to physical “insults”, such as the attack by cancer proteins; 2. pregnancy reduces the hormone levels that can feed tumors; and 3. hCG – Human Chorionic Gonadotropin, the pregnancy-maintaining hormone – is now believed to be a deterrent to the growth of estrogen positive tumors, which may hold the promise of preventive treatment.
- Regarding exercise, while epidemiologists still lack sustained data, anecdotal evidence is overwhelming that exercise benefits in a “dose-dependent manner”, that is, the amount of benefit correlates to the mount of exercise—the more exercise, the lower the risk.
- For the first time since the early ‘80’s, the NIH budget has not kept pace with inflation, due in part to multiple current demands on the DOD budget.
- The effects on research will be direct and visceral in the next few years, according to many speakers who described flat (i.e., no change) or effectively decreased budgets in their own programs.
Hope or hype? That was the question asked at a lively plenary session, where health reporting was labeled “the least skeptical reporting of all”. Washington Post Journalist Abigail Trafford described medical coverage in the news going four ways: New hope, no hope, hype, and “huh”? Breast Cancer coverage requires “investigative and skeptical reporting”.
Check out the following news sources for state-of the-art medical coverage:
- HealthNewsReview.org (NOTE: Hits are needed on this site for its author, journalist Gary Schwitzer, to have his grant renewed.)
- FDAlabel [name of drug ].org to check out information on medications
- GoozNews.com news blog by maverick health reporter Merrill Goozner
NBCC staffer Carolina Hinestrosa reminded attendees: “All of us – consumers, physicians, scientists – we all have a role to play.” As Breast Cancer patients and advocates, our role has already begun. We continue it by becoming and staying informed, and using our individual talents to ensure that each and every one of our voices are counted when important decisions regarding Breast Cancer are made.
We can be louder together! Next year’s conference will be held April 28 – May 1, 2007. Save the date!
NBCC Conference Lobby Day
The conference culminated on the 4th day – Lobby Day On the Hill
Armed with information digested during the previous 3 days, hundreds of attendees “shuttled” off to our headquarters in the Russell Senate Building for the day. We were ready and anxious to keep our appointments with our elected Congressmen, or their Health staff person, in order to gain support for the NBCC priorities for the Second Session of the 109th Congress.
#1 Priority: Guaranteed Access of Quality Health Care for All
- Breast Cancer cannot be eradicated or prevented until all women and men have this guarantee.
- NBCC staff have been ever watchful as various incremental bills surface. Each is carefully measured for its ability to address the eight principles which are essential to achieving this goal.
- The 8 principles are spelled out on NBCC’s website.
#2 Priority: the Department of Defense (DOD) peer-reviewed Breast Cancer Research Program fpr fiscal year 2007.
- On May 4th, Chairman James Walsh presented his proposed budget to the House Military Quality of Life appropriations sub-committee.
- It included a line item amount of $115 million for the BC Research Program. His budget recommendations passed in the House.
- Action now shifts to the Senate. We are pressing for $150 million.
- We should know the answer before the Fall BCCR newsletter goes to print.
#3 priority: Enactment of the Breast Cancer and Environmental Research Act
- This bill would authorize $150 million over 5 years for grants which would develop multi-institutional centers to study environmental factors related to the development of BC.
- It has been referred to the appropriate committees of the House and the Senate.
- The Annual Lobby Day was wonderfully successful and helped to further our efforts to get this bill passed.
- Senate co-sponsors currently number 64 (including NYS Senators Chuck Schumer and Hillary Clinton) – up from 62 as of Spring.
- House co-sponsors moved from 200 pre-Lobby Day to 239 as of 5/25. This is well over half.
- Our area House Representatives Tom Reynolds, James Walsh and Randy Kuhl are co-sponsors.
- However there remain a number of Energy and Commerce Committee and its Health Subcommittee members who have not signed on. We are asking our representatives to reach out to those members and urge their co-sponsorship.
- Congressman Reynolds – a supporter of our priorities since coming to Congress – assures us, via his staff, that he is mindful and respectful of the work charged to the members of the Committee and that the issue will remain on his radar screen as we move forward. He welcomes the bill coming to the floor just as soon as possible – when they have finished ironing out the wording and clarifying the process. We can expect him to vote YES.
- Congressman Walsh – also a keen supporter of our BC issues – is reported by his staff to be more likely to mention something on the floor during votes rather than making calls to committee members. We would very much appreciate his doing this. As a co-sponsor, we expect he also would vote YES.
- Congressman Kuhl, during his first term, has been very receptive to our requests for support of the NBCC agenda. He has agreed to speak in support of this issue to colleagues as opportunities arise, both on and off the floor. His YES vote is expected.
- Congresswoman Slaughter, although not a co-sponsor, is expected to vote YES when it is brought to the House Floor.
#4 Priority: Preservation of the Medicaid Breast and Cervical Cancer Treatment Program
- Here’s something you don’t hear very often: The Deficit Reduction Act of 2005 – S1932 ( the Reconciliation bill) was passed and signed into law in February. (The law contains language that exempts the BCCTP from cuts to the larger Medicaid program.)
It is a constitutional requirement that both the House and Senate must pass identical versions of a bill prior to it being signed by the President. However, the House and Senate passed different versions: House – 36 months coverage for durable equipment, Senate – 13 months. In April a lawsuit was filed by the House to declare the legislation unconstitutional.
We will keep you posted.
- The Good News – At this point in time, NYS is retaining money in its budget to cover treatment costs– so the program is not being threatened here.
- The Bad News – This is not true in several other states.
An update re: the FACT Act – Fair Access to Clinical Trials
- This priority has been removed from this year’s agenda due to a lack of bi-partisan support.
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