According to a recent article, a new version of the Genetic Anti-Discrimination bill, H.R. 493, was passed by the U. S. House of Representatives last Tuesday. As many of you know, NBCC advocates worked for many years to gain passage of genetic anti-discrimination legislation at the federal and state level for several years.

Breast cancer activists no longer support newer versions of this legislation because they 1) don't provide adequate protection against all types of discrimination, related to health insurance and employment; and 2) because they have inadequate enforcement provisions.

Enforcement is an important part of any legislation protecting patient rights. If a person has no right to legal action when they are the victim of discrimination based on genetic information (ie inherited risk of breast or ovarian cancer) there is little they or anyone can do to prevent companies from breaking the law.

In Ohio, there are some weak and fragmented genetic anti-discrimination laws. They protect patients only against discrimination by HMO's and the penalty for violating the law is strictly administrative - they're subject to a hearing w/ the state department of insurance. The law leaves no means for individuals to recoup financial losses.

Though I haven't had a chance to review the latest federal version of the genetic anti-discrimination bill in the US House, its safe to assume this bill has similar flaws to those NBCC members have rejected in the past.

According to a recent study by the Commonwealth Fund, women are more likely than men to go without needed health care, even those who have health insurance. A larger percentage of women also have a more difficult time paying health care bills.

More women didn't fill prescriptions, skipped recommended visits with specialists, failed to get tests, or just didn't seek treatment when they had a medical problem. In the survey, 38 percent of women reported difficulty paying medical bills compared with 29 percent of men. Of those who had health insurance, 31 percent of women compared to 22 percent of men reported having difficulty paying medical bills. About 25 percent of them said they weren't able to pay their bills at all and a similar number said they were paying them off over time.

Link to Bloomberg article:
http://www.bloomberg.com/apps/news?pid=20601082&sid=aWf_.fq51FrU&refer=canada

Link to Commonwealth Fund Report
"Women And Health Coverage: The Affordability Gap"

http://www.cmwf.org/publications/publications_show.htm?doc_id=478513

Further data on breast cancer incidence in the US shows that declining use of HRT may be responsible for lower rates of breast cancer incidence in women over age 50.

In addition, a UK study published in the Lancet shows a link between use of HRT and ovarian cancer.

I'm off today to a conference in Columbus on Cancer Care Disparities in Minorities, but will post links to the abstracts later. In the meantime, NBCC has some new articles at their web site including one analyzing new guidelines on use of MRI in women at high risk of breast cancer.

http://www.natlbcc.org/bin/index.asp?strid=920&depid=20

Within hours of sending out our latest Legislative Alert encouraging Ohioans to sign our petition in support of Option 3, we were very pleased to see an email arrive from Ohio's Susan G Komen Breast Cancer Foundation asking women to share their stories.

After many years of working to encourage Ohio Komen affiliates to support this program and seek its improvement, we're very pleased to see that they've decided to support it.

Way to go! Welcome to the BCCP Medicaid campaign!

NOBCCF and the Ohio Breast Cancer Action Coalition are launching an action plan to amend Ohio's Breast & Cervical Cancer Treatment Program to cover uninsured women who are not diagnosed through the public health program.

Currently, only 100 of the over 1,000 uninsured women diagnosed (or re-diagnosed) with breast or cervical cancer each year in Ohio are able to get into the Breast & Cervical Cancer Medicaid Program, a program that provides coverage during treatment an d follow up care. These women must quit their jobs to qualify for regular Medicaid or pay out of pocket, as much as $100,000 to $200,000 for the first year of treatment, even with donated services and discounts.

Many end up filing for bankruptcy or limit their treatment based on what they can afford.

Visit our Ohio Advocacy page and sign the online petition asking Governor Strickland and the Ohio General Assembly to amend Ohio's BCCP Medicaid program to Option 3, covering uninsured breast & cervical cancer patients who can't get into public health programs because of long waiting lists.

Call Governor Strickland and your state representative and state senator and ask them to support Option 3. Download a copy of the Petiton and gather signatures from friends, family and co-workers. Call NOBCC at 440-717-9912 if you have questions or would like someone to speak at your support group or other meeting about the petition drive.

Do it today! The breast & cervical cancer treatment coverage you work for today may some day help you!

The Cochrane Collaboration recently reported their results of a systematic review of seven randomized controlled trials involving 542 breast cancer patients undergoing or having recently undergone chemotherapy. All studies were conducted and published in China. All were of low quality and used CMH plus chemotherapy compared with chemotherapy alone.

Chinese medicinal herbs (CMH) include any mixture of herbal compounds and decoction (the process by which herbs are boiled and remaining liquid used for health purposes), including the development of herbal formulae and injections, and capsules. Although CMH are used to counteract the side effects of chemotherapy (cancer treatment with chemical agents that are selectively destructive to malignant cells and tissues) in patients being treated for cancer, the evidence for their use for women with breast cancer has not been ascertained. The purpose of this systematic review was to evaluate the effectiveness and safety of CMH in alleviating chemotherapy-induced short term side effects for women either undergoing chemotherapy or having recently undergone chemotherapy. Short term side effects are those that occur during the course of the treatment and generally resolve within months of the completion of the therapy and affect up to 60% of patients.They include nausea and vomiting, mucositis (inflammation of the mucous membranes lining the digestive tract from the mouth down to the anus caused by chemotherapy); neutropenia (a decrease in white blood cells caused by chemotherapy); myelosuppression (a condition in which bone marrow activity is decreased, resulting in fewer red blood cells, white blood cells, and platelets), and fatigue (loss of energy and tirdness). This review found seven randomised studies involving 542 breast cancer patients addressing this question. These studies used six different herbal remedies to treat the side effects of chemotherapy, all used CMH plus chemotherapy as the intervention compared with chemotherapy alone. The results suggest that using Chinese herbs in conjunction with chemotherapy or CHM alone may be beneficial in terms of improvement in marrow suppression and Immune sytstem, and may improve overall state of quality of life. However, further trials are needed before the effects of TCM for people with breast cancer can be evaluated with any real confidence.There was no evidence of any harms of CMH.

From the Cochrane Library

From the Howard Hughes Medical Institute

"Studies of human tumor cells implanted in mice have shown that the abnormal activation of four genes drives the spread of breast cancer to the lungs. The new studies by Howard Hughes Medical Institute researchers reveal that the aberrant genes work together to promote the growth of primary breast tumors. Cooperation among the four genes also enables cancerous cells to escape into the bloodstream and penetrate through blood vessels into lung tissues.

"Although shutting off these genes individually can slow cancer growth and metastasis, the researchers found that turning off all four together had a far more dramatic effect on halting cancer growth and metastasis. Metastasis occurs when cells from a primary tumor break off and invade another organ. It is the deadliest transformation that a cancer can undergo, and therefore researchers have been looking for specific genes that propel metastasis."

More at link:

http://www.hhmi.org/news/massague20070412.html

An honest, compelling essay written by Lance Armstrong about the disconnect between what our leaders say and what they do when it comes to ending cancer. From the August 9, 2007 Issue of Newsweek..

"We Have To Be Ruthless"

An iconic survivor challenges the nation to close the gap between what we know and what we do about cancer.

Trust me when I say that I'm not complaining about the attention cancer is finally getting in the media. But I don't understand why it requires two very upsetting announcements about cancer recurrence to prompt a national discussion about our nation's second leading killer.
I was struck, in particular, by the headlines about Elizabeth Edwards and the repeated use of the word "incurable." That word is so contrary to the American spirit and what we believe about our ability to innovate and excel. It doesn't take into account Elizabeth's considerable courage, and it says something alarming about the complacency that leads us to just expect another diagnosis with another new day.
It's clear that the way we battle cancer is deeply at odds with our values as a country, and with our common sense. There is a serious gap between what we know and what we do; what we deserve and what we get; what should be and what is.

The shameful reality is that we do not ensure that everyone benefits from what we know today about cancer prevention and detection. The outcome of a cancer diagnosis often depends on factors that have nothing to do with the disease, including race, insurance, economics, age and proximity to treatment centers. We can prevent about one third of cancer deaths just by widely distributing information about prevention and early detection (and by providing access to quality cancer care) —but we aren't doing it.

Meanwhile, we know scientific discovery is critical and our best hope for the future. Research labs hold the promise for improved screening and therapies and better understanding of metastases and prevention. Congress, however, repeatedly fails to fully fund the requested budget for the National Cancer Institute and recently cut cancer funding for the first time in more than 30 years.

These are only two examples of the disconnect between what we know and what we do. At some point we have to ask ourselves what is at stake. Who is left vulnerable by that gap? The answer is our spouses, parents, children and friends.

For that reason I am determined to lead a movement to fundamentally change the experiences and expectations of cancer patients. We need an unapologetic effort to demand what is right and champion what works. We have to be ruthless and relentless, as the author Jim Collins often says, in our quest for results. We must honestly and clearly affirm that this is an ethics issue. To confront it we must summon our resources and the moral courage and political will of the public, the health-care system and our government.

To that end, Americans deserve leaders who understand the magnitude of the problem and have carefully considered what to do about it. Trust me when I tell you that we are going to ask them. And we expect an answer.


http://www.msnbc.msn.com/id/17888477/site/newsweek/

We've had a busy month here at NOBCCF! First, thanks to everyone who participated in the 4th Annual Pink & Silver Gala. It was a great success! The Renaissance Cleveland Hotel was a great venue, our musicians - Rick Iacaboni and the Nick Puin Quartet - were fabulous! Thanks also to those who donated some great Silent Auction Items, too!

Winners of the Breast Cancer Hero Awards for 2007 were:

Rene Barrat Gordon of Cleveland Clinic Foundation
Kim Day of University Hospitals
Danielle Duller - Breast Cancer Survivior
Gertrude Gustke - NOBCCF Trustee

Congratulations to all!

Welcome to our new Patient Navigator, Bernadette Bodzenta. Many of you may have met or talked with her already. As a result of our grant from the Cuyahoga County Commissioners, we were able to hire a Patient Navigator to help with the Lend A Helping Hand Program. Bernie has her Master's Degree in Health Education and previously worked for Ohio's Breast & Cervical Cancer Screening Program. She's been a tremendous asset and is available to help answer questions for anyone needing breast or cervical cancer screening and offer assistance to patients. Give her a call at 440-717-9942.