Friday, June 26, 2009

African American Women Needed for GAP Study

Received an email this morning from Susan Love/Avon Army of Women sending the message that the GAP study needs to recruit more African American breast cancer patients.

More information at this link:

What's the study about?

This is a research study designed to better understand the differences in breast cancer treatment experiences between African American women and Caucasian women. Four hundred African American women are needed for this study.

What's involved?

If you join the Gap Study you will be asked to complete a 30-40 minute telephone survey about your health related experiences and to allow your medical records to be reviewed by the doctor conducting this study.

Who is conducting the study?

Vanessa Sheppard, PhD, MA Assistant Professor of Oncology at Georgetown University in Washington, DC


Anywhere in the United States

Who can participate?

You can join the Gap Study if you match ALL of these main categories:

•You consider yourself to be Black/African American

•You are newly diagnosed with breast cancer (within 20 weeks of your diagnosis)

•Your breast cancer is stage I, II, or III

•This is the first time you have been diagnosed with breast cancer (this is not a recurrence)

•You live in the United States

The researcher may ask you additional questions to determine if this study is the right fit for you.

Tuesday, June 23, 2009

Legislative Alert

Ohio's Governor & Legislators plan to cut the budget for Ohio's Breast & Cervical Cancer Screening Program.

This critical health program provides free screening for breast & cervical cancer and Medicaid coverage if diagnosed for uninsured Ohio women. BCCP Screening is already struggling with severely limited funds to meet the needs of the growing number of uninsured women.

We need your help to protect funding for this critical program!

Call your state legislators today with the following message:

"Help save Ohio women's lives by restoring full funding for Ohio's Breast & Cervical Cancer Screening Program. Ohio women are counting on you!"

Click the links below to find your representative's name and contact information.

Contact information for your Ohio Senator

Contact information for your Ohio State Representative

Call Governor Strickland - (614) 644-4357

Urgent! Please call today or tomorrow!

If they are unavailable, leave a message and call them later.

Please help us keep funding for Ohio's BCCP Screening Program!

Senate HELP Committee Working on HC

The Senate HELP Committee is working on their version of a health care reform bill this week as they prepare to pass it out of committee. It continues tomorrow, so make sure to tun in and watch.

Follow this important work at the following link:

For a helpful guide to comparing the various health plans proposed by President Obama, the Senate committees and the House, go to the link below. Click on "Side by Side Comparisons".

Side by Side Comparison of Health Care Plans

Kaiser Family Foundation has published a handy, detailed yet easy to understand tool for comparing the health care reform plans currently proposed by the White House, Senate committees and the House.

Follow this link an compare the plans to see how they stack up.

Tell us what you think!

Monday, June 22, 2009

NBCC Concerns About EARLY Act

From National Breast Cancer Coalition's Analysis of the EARLY Act, recently introduced in Congress:

Analysis of “Breast Cancer Education and Awareness Requires Learning Young Act of 2009” (EARLY Act)

It is laudable that Congress continues to care deeply about breast cancer and strives to address it. However, it is vital that Congressional action is the right action that helps and does not harm the public and is a responsible use of federal funding and outreach. Unfortunately, the bill at issue is based on several false premises, contains incorrect information, and will not achieve these goals. The bill is addressed to a population of women in whom breast cancer is rare, and presumes we know what to tell these women about prevention, risk reduction and early detection. We do not. If we believe a public campaign to this population is important, we need scientific inquiry to find the answers to these questions before we launch any public campaign.

Our concerns center on the following:

1.) That breast cancer in women under 40, an admittedly rare occurrence, necessitates a broad public health campaign and education in secondary schools and universities;

2.) That we know what women should do to prevent or lower their risk of breast cancer;

3.) That breast self examination and clinical breast examination are effective in saving lives in this age group;

4.) That ethnicity is sufficient to trigger genetic counseling and testing

5.) That there are significant differences in what we know and what we should tell women under 40 years old versus over 40 years old.

The above concerns certainly justify a review of this legislation to determine if there are better, more scientifically-based ways to address the need to reduce incidence and mortality from pre-menopausal breast cancer. As a survivor who was diagnosed with breast cancer at an early age, I can say I had no family history, received regular breast screening, had a healthy diet and lifestyle and was a long distance runner, but still managed to get the disease. Pre-menopausal breast cancer is a much different type than the more common breast cancer diagnosed in post-menopausal women.

Its not only important to base public health messages about breast cancer risk on the best scientific evidence, its wrong to send mixed messages to women about whether they can prevent pre-menopausal breast cancer or instill a sense of guilt that they could have controlled the outcome.

More info

Sunday, June 21, 2009

Breast Cancer in Young Women - Concerns About the EARLY Act

The EARLY Act (Education and Awareness Requires Learning Young Link to text of bill )has been introduced in Congress. The bill calls for $45 million to fund programs teaching young girls and women BSE (Breast self-exam) and promotes education about prevention as well as genetic testing for inherited risk of breast cancer. It has been supported by a number of national organizations, including Susan G. Komen for the Cure, the Young Survival Coalition and Living Beyond Breast Cancer, but not by National Breast Cancer Coalition or Northern Ohio Breast Cancer Coalition.

NBCC's analysis of the EARLY Act is at this link:

Among other others, epidemiologist Dr. Leslie Bernstein and Dr. Barnett Kramer, director of the NIH Office of Disease Prevention, have also taken strong positions against the EARLY Act.

What follows is a letter from Dr. Otis Brawley, chief medical officer of the American Cancer Society, to ACS volunteers about the controversial EARLY Act recently introduced in Congress.

Dr. Brawley's letter:

"I want to put in writing my concerns regarding the EARLY Bill. So many
emotions are flying, some folks can better understand if they have something in writing. You might use this letter to at least help people understand where I am
coming from. This is an opportunity for dialogue and an opportunity to do something positive. I truly would like to work with others to make a bill that is scientifically sound.

"The authors of the bill clearly want to do the right thing and that should not be doubted. As I do not question the good intentions of those writing this bill, I ask that people not question my good intentions.

"Unfortunately the bill as introduced is a public health bill that does not recognize public health as a legitimate scientific discipline. It applies diagnostic information from the American Cancer Society and National Comprehensive Cancer Network websites as if it is screening information. It calls for an advisory committee with expertise in every discipline having to do with breast cancer except public health and screening.

"This bill is unfortunate in that it represents a wasted opportunity to do good for a population that deserves attention, the very population that the authors want to help. If implemented as written, it can actually cause harm. If implemented, a number of women will seek genetic testing and find out that they have "mutations of unknown significance." Some of these women will seek a bilateral mastectomy. Many of these women will in reality have mutations of no significance, but our science cannot determine most of these yet. There are already scientific data to show that many women getting these messages will suffer significant emotional and mental harms.

"The overall tone of the bill makes the problem of breast cancer in young women and genetic causes of breast cancer seem far simpler than it is. It accepts as fact things that public health experts think of as research questions. For example, my public health colleagues would overwhelmingly agree that we do not know if screening programs using examination, mammogram, magnetic resonance, or genetics save the lives of young women (less than age forty) with breast cancer. Fooling ourselves into
accepting that these interventions have been proven to save lives does a disservice to young women with breast cancer.

"This program, if implemented, will diminish the effect of more pertinent public health messages on tobacco avoidance, good nutrition and physical activity. These are messages that have the potential to save far more lives than a breast cancer awareness campaign. These messages aimed at young women can save far more lives from
cancer compared to a breast cancer awareness campaign and will prevent deaths from diabetes and cardiovascular disease. The doubling of the obesity rate in young women over the past thirty years is the greatest threat to their health.

"I do realize the desire to do something in breast cancer and I accept the need to do the right thing regarding breast cancer. We need far more psychological and medical support for young women who have breast cancer. We have data to show that there are women who need treatment and cannot get it. We need more research to develop and validate the lifesaving abilities of screening technologies.

Please note, I stress validate the lifesaving abilities of screening technologies, because too much emphasis has been put on early diagnosing disease and not on if that diagnosis saves lives. Of course, we also need to find and validate ways of preventing the disease. All we can do now is encourage early pregnancy and do bilateral mastectomy. Neither is one hundred percent effective. I will also agree that most physicians do not understand the complexities of the issue.

"I have consulted a number of experts in breast cancer screening, diagnosis, treatment and outcomes in coming to my opinion. I realize that I will be criticized for not supporting this bill. I will be criticized primarily by those who refuse to realize I am truly concerned about the health of young women and I really want to do the right thing. Too often I have seen the easy, feel-good path in medicine result in harm."

NOBCCF commends Dr. Brawley for speaking out on this important issue.