Over 50 IlliNOISY Delegates traveled to Washington, DC in May to attend the NBCC
Annual Advocacy Training Conference.
While there the group met with their Illinois Members of Congress - look for
photos and additional details in the July IlliNOISY News!
United Airlines helped ten IlliNOISY Advocates to attend the 2005 NBCC Advocacy
Conference in Washington, DC.
Thank you United Airlines!
Smoke-Free Chicago has many fun in-house volunteer opportunities on Tues., Wed.,
& Thurs. throughout the summer from 5:30 - 8:30 p.m.
Y-ME Illinois is a proud member of Smoke-Free Chicago. Learn more!
Be IlliNOISY! Ask your family and friends to sign up for the IlliNOISY Advocacy
Network so they can know when important decisions regarding breast cancer are
being made. It only takes a minute to sign up online!
THE SISTER STUDY NEEDS YOU!
If you have a sister who has been diagnosed with breast cancer, but you have
not been diagnosed, you can participate in this important study that has the potential
to find answers to many of our questions about breast cancer.
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June 2005 IlliNOISY News
The latest news from the Y-ME IlliNOISY Advocacy Network! Watch for the newest edition
in your inbox the first Tuesday of each month.
IN THIS ISSUE:
ADVOCATE STORY: You Never Know Who Might Answer the Phone...
Recently one of our IlliNOISY Network Members called Senator Barack Obama’s office
to thank him for signing on to the Dear Colleague Letter in support of the DOD
Breast Cancer Research Program. Upon calling she thanked the person answering
the phone for the Senator’s support. However, she quickly realized that she wasn’t
speaking with a staff person but was actually talking to Senator Obama himself!
The Senator’s staff was all very busy so he pitched in to help answer the phones.
You just never know when you may have an opportunity to communicate directly with
your elected officials...
If you have a story from your work as an IlliNOISY Network Member that you’d
like to share – email it to illinoisadvocacy@y-me.org.
ANNUAL ADVOCACY CONFERENCE REPORT
Over 50 IlliNOISY Delegates attended the 2005 NBCC Annual Advocacy Training Conference
in Washington, DC from May 21-24th. These committed breast cancer activists met with their Illinois Members of
Congress while in DC, to ask for their support of NBCC’s 2005 Legislative Priorities.
These visits were incredibly successful and we met with the offices of all of
our members except Rep. Henry Hyde who does not meet with constituents regarding
health issues in his DC office.
We even made the blog on Rep. Mark Kirk’s website - check it out!
Look for photos from the Advocacy Conference and other updates in the July IlliNOISY
News!
2005 NBCC LEGISLATIVE PRIORITIES UPDATE
Y-ME Illinois, a member organization of the National Breast Cancer Coalition
(NBCC), joins with breast cancer organizations around the country to support NBCC’s
legislative priorities. Below is a brief update on a few of our 2005 priorities.
View the full listing of our 2005 Legislative Priorities.
Priority #2: $150 million appropriation for the Department of Defense Breast
Cancer Research Program (DOD BCRP) for Fiscal Year 2006 (FY06)
This program has the bi-partisan support of 228 House Members and 62 Senators. The
House Appropriations Committee approved, by voice vote, the FY06 Military Quality
of Life and Veterans Affairs spending bill. During consideration of the bill,
the committee approved, by unanimous consent, an amendment offered by Rep. Murtha
(D-PA) that would preserve the integrity of the DOD BCRP but provided only $115
million for the Army's Peer-Reviewed Breast Cancer Research Program, $15 million
for the Ovarian Cancer Research Program & $80 million for the Prostate Cancer
Research Program. Last year, Congress allocated $150 million, $10 million and
$85 million for these programs. The Senate Appropriations committee will meet
later this month and Y-ME will be working with all to restore level funding for
all programs.
Priority #3: Enactment of the Breast Cancer and Environmental Research Act (S.
757/H.R. 2231)
A bill for the Breast Cancer and Environmental Research Act has now been introduced
in the House – H.R. 2231. S. 757 is the companion legislation in the Senate.
Watch for alerts regarding this bill in the coming weeks as we work to get our
Illinois Members of Congress to sign on in support of this important legislation.
At this time there are 35 cosponsors on the House bill and 57 on the Senate bill.
The following IL Members have signed on as co-sponsors of H.R.2231/S.757: Rep. Gutierrez, Rep. Schakowsky, & Rep. Kirk.
Priority #5: Enactment of the Fair Access to Clinical Trials Act (S.470)
We expect House language for the FACT Act to be introduced in the coming months.
See the articles below which outline the need for the FACT Act.
NEED FOR MORE TRANSPARENCY IN CLINICAL TRIALS
The two articles below speak to the need for the enactment of the Fair Access
to Clinical Trials (FACT) Act – S. 470. Watch for alerts and action on this in
the coming months!
Editor scolds drug firms on trials
Associated Press, 24 May 2005
NEW YORK -- The editor in chief of the New England Journal of Medicine accused
three of the largest drug companies of "making a mockery" of efforts to create
transparency in clinical trials, and said it could lead some medical publications
to avoid publishing their studies.
Jeffrey M. Drazen, the editor, said Pfizer Inc., GlaxoSmithKline PLC and Merck
& Co. aren't providing enough useful information on clinical trials they register
with the government. In September, the 11 members of the International Committee
of Medical Journal Editors said they won't publish studies that aren't registered
in a public database as they are launched.
Dr. Drazen's comments came as the editors delivered more details about what they
expect from pharmaceutical companies. The group is asking for 20 disclosures,
including what each study is designed to evaluate, how many patients will be studied
and how the company is sponsoring the research.
Dr. Drazen based his comments on a review of the information 10 drug companies
posted on www.clinicaltrials.gov1., which is run by the U.S. National Institutes of Health. He said the review
was conducted by Deborah Zarin of the NIH at the request of the committee. Dr.
Zarin couldn't be reached to comment.
"They [the three companies] are giving nonsense details," Dr. Drazen said. "They
are written in a way that they are trying to hide what they are doing."
Dr. Drazen said some of the problems with the information submitted by the three
companies included a failure to state the number of patients in trials and to
clearly outline the primary and secondary goals of their studies. He noted that
most other companies have complied, but recently had started to follow the lead
set by the three companies he criticized.
Merck spokeswoman Janet Skidmore said the company didn't agree with Dr. Drazen's
characterization of its entries on the government Web site. "We have done everything
we can to expedite medical information and enhance transparency," she said. Glaxo
didn't have an immediate comment and Pfizer didn't return calls seeking comment.
Much Clinical Trial Information Remains Concealed, Despite Promise to Disclose
More Data
The New York Times on Tuesday examined how the pharmaceutical industry remains "sharply divided"
on how much information it reveals to the public about new and completed clinical
studies. Journal editors and academic scientists in the last year have urged the
industry to disclose more data after several drug companies failed to publish
studies that showed their antidepressant medications were as effective as placebos
(Berenson, New York Times, 5/31). Read more.
FEDERAL LEGISLATIVE UPDATE
Legislation Recently Introduced:
H.R. 2071 - Rep. John D. Dingell (D-MI)
A bill to provide for Family Care coverage for parents of enrolled children.
H.R. 2122 - Rep. Carolyn B. Maloney (D-NY)
A bill to protect breastfeeding by new mothers, to provide for a performance
standard for breast pumps, and to provide tax incentives to encourage breastfeeding.
H.R. 2133 - Rep. Tammy Baldwin (D-WI)
A bill to guarantee for all Americans quality, affordable, and comprehensive
health insurance coverage.
H.R. 2184 - Rep. Rush D. Holt (D-NJ)
A bill to provide for a study by the Institute of Medicine of the National Academy
of Sciences to identify constraints encountered by schools of nursing in admitting
and graduating the number of nurses sufficient to meet the health care needs of
the United States.
H.R. 2231 - Rep. Nita M. Lowey (D-NY) (NBCC Priority #3)
A bill to authorize the Director of the National Institute of Environmental Health
Sciences to make grants for the development and operation of research centers
regarding environmental factors that may be related to the etiology of breast
cancer.
S. 1104 - Sen. Hillary Rodham Clinton (D-NY)
A bill to provide states with the option to cover certain legal immigrants under
Medicaid and State Children's Health Insurance Program.
H.R.1818 - Rep. Oberstar (D-MN), S. 898- Sen. Hutchinson (R-TX)
House and Senate panels approved these companion bills providing federal funds
to “patient navigators” to help poor or low-income individuals with cancer or
chronic diseases to get the health care they need. This bill is intended to help
more Americans stay healthy and overcome barriers to health care. The full House
and Senate are expected to vote on this shortly.
You can read bills in full text format online.
The Illinois General Assembly recessed on May 31, 2005, after sending a budget
for FY 2006 to the Governor.
Bill to Provide Mammograms to Younger Women at High Risk Passes Both Houses
SB 12 passed unanimously in the Illinois House on 5/4/05. This bill is now awaits
the Governor's signature.
Health Care Justice Act (HCJA) Funded!
With strong support and commitment from Governor Blagojevich and his staff, and
the leadership at the IL Department of Public Health, along with help from State
Senator Trotter and State Representative Delgado, the HCJA received $1 million
in funding in the recently passed budget.
With a very tight budget again this year, it clearly shows the commitment by
the Governor and legislative leaders to the enactment of the Health Care Justice
Act, which is affordable, accessible and quality health for all Illinoisans. There
is also a high probability that another $400,000 from other sources will be going
into this implementation.
The process for this implementation is already underway, not only in terms of
the Task Force appointments, but the beginning of the public hearing process.
Be sure to watch for more information about upcoming HCJA public hearings regarding
health care in your community!
Experts Meet Secretly To Discuss Recommendations for Covering the Uninsured
The New York Times on Sunday examined the efforts of 24 "ideologically disparate leaders representing
the health care industry, corporations and unions, and conservative and liberal
groups" who have been "meeting secretly for months" to come to a consensus on
how to provide health coverage to the uninsured. Read more.
HHS Announces $95 Million to Improve the Health of Minorities
HHS Secretary Mike Leavitt announced $95 million in grants to develop a new program
that will reduce the number of cancer deaths in minority and poor populations.
This new initiative, called the Community Networks Program (CNP), was developed
by HHS' National Cancer Institute (NCI), part of the National Institutes of Health.
Its aim is to reduce cancer disparities through community participation in education,
research and training. Up to 25 grantees will develop programs to increase the
use of cancer interventions in underserved communities. Interventions will include
proven approaches including smoking cessation, increasing healthy eating and physical
activity, and early detection and treatment of breast, cervical and colorectal
cancers.
Rep. Dingell Reintroduces Patients' Rights Legislation
Rep. John Dingell (D-Mich.) and other Democratic legislators have introduced
a new patients' bill of rights measure that would allow health plan members to
sue their insurers in disputes over coverage of health care services, CQ HealthBeat
reports. The measure, which is based on a bill passed by the Senate in 2001, would
guarantee basic standards for access to care, including clinical trials; allow
access to health care specialists; and give patients "a fair, independent" external
review process if an HMO denies care. Dingell said, "If HMOs want to continue
to play doctor then they should be held accountable like a doctor. Patients injured
or killed as a result of their HMO's negligence still have no way to hold that
HMO accountable." According to CQ HealthBeat, both the Senate and the House passed
patients' rights measures in the 107th Congress but compromise legislation was
not crafted (CQ HealthBeat, 5/12).
SCIENCE & RESEARCH NEWS
Breast Cancer Survivors at Increased Risk for Bone Fracture
Postmenopausal breast cancer survivors may be at an increased risk for bone fractures,
according to a recent study supported in part by the National Institute of Arthritis
and Musculoskeletal and Skin Diseases. While previous studies have found low bone
density among postmenopausal women surviving breast cancer and rapid bone loss
among those treated with chemotherapy, studies on fracture risk among breast cancer
survivors have yielded inconsistent results. Read more.
Herceptin® Combined with Chemotherapy Improves Disease-Free Survival for Patients
with Early-Stage Breast Cancer
Results from two large randomized clinical trials for patients with HER-2 positive
invasive breast cancer show that those patients with early-stage breast cancer
who received Herceptin® (trastuzumab) in combination with chemotherapy had a significant
decrease in risk for breast cancer recurrence compared with patients who received
the same chemotherapy without trastuzumab. Read more.
Aprepitant Reduces Chemotherapy-Induced Vomiting in Breast Cancer
Women receiving chemotherapy for breast cancer suffered significantly less vomiting
and had better quality of life when they took a new drug called aprepitant (Emend®)
in addition to standard drugs given to control nausea and vomiting. The current
study was the first to test the effectiveness of aprepitant at preventing nausea
and vomiting in patients who were taking chemotherapy drugs considered moderately
likely to cause these side effects. Read more.
Low-Fat Diet May Reduce Risk of Breast Cancer Relapse
Postmenopausal women who ate a low-fat diet were less likely to get a recurrence
of breast cancer than those who ate a standard diet. This is the first time a
large randomized clinical trial has shown that a low-fat diet can reduce the chance
of breast cancer coming back. The results of this study were presented at the
American Society of Clinical Oncology annual meeting in Orlando, Florida. Read more.
A recent study found a strong connection between African-American race and delay
in follow-up and/or care following an abnormal screening for breast cancer.
About 46% of U.S. residents experienced a mental illness at some point in their
lives, and about 26% have experienced a mental illness in the previous year, according
to a survey of nearly 10,000 U.S. adults funded by NIH. Unfortunately, many of
these individuals will not receive proper treatment.
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