October Breast Health Awareness Month -- Week 5

Last month, you may have read about Texas government’s attempts at placing parameters on what “navigators” could do related to insurance enrollment.  With so much attention now being given to what we call Navigators and/or Community Health Workers, I’d like to once again “put a face” to the issue.

It was 2:30 and the next appointment would be with Lt. Gov. David Dewhurst.  Nearly 100 advocates for breast health had traveled to Austin to share with the 83^rd Legislature our support of current prevention efforts in Texas and our hopes for the future.  Six of us were scheduled for a photo op with the Lieutenant Governor.  When he arrived, he greeted each person in our delegation as the photographer arranged us. After the photographs were taken, as he was about to excuse himself, Maria stepped forward.

“I am a Community Health Worker,” she said, craning her neck to look up at him.  “I was diagnosed with breast cancer in 2008 and I was not insured. I found help through The Rose.”

She pointed to me and quickly continued, “I would never have found treatment without The Rose. I was confused and searching for answers. And then I met my Patient Navigator. My Navigator was with me all the way. She was there to help me find doctors. She made the appointments.  I probably would have died without her.  When I got well, I realized I had to do something to help other women -- other women like me who didn’t have insurance, didn’t know what to do and needed someone to help them find treatment.  I quit my job of 15 years and went to Houston Community College for training and to become a Community Health Worker.”

I don’t know how she managed it, but in a split second suddenly a card appeared in her hand and she held it up at him.

“This is my card and it means I am a certified Community Health Worker and with it I can help women living anywhere in Texas get treatment.”

Lt. Gov. Dewhurst not only acknowledged Maria’s story, he began to ask questions. We shared that the terms Community Health Worker and Patient Navigator are used interchangeably; that at The Rose, a certified Patient Navigator takes that newly diagnosed woman by the hand and makes sure they get timely and appropriate treatment; and that our dream is to see Community Health Workers/Patient Navigators recognized as legitimate healthcare professionals with their services reimbursable under Medicare, Medicaid and all insurance companies.

He listened and then asked me if I could summarize what we had just said for the meeting he was returning to. I said, “Absolutely!” and was soon standing before several Senators reiterating the importance of Patient Navigators. Legislation being a rather slow process, we didn’t expect miracles in 2013. But thanks to Maria, we were heard.

Maria is still being heard. She is now on staff at The Rose and daily she makes the calls, finds the connections, and discovers the resources that will ensure our patients have the treatment options they need.

Dorothy Gibbons, CEO and Co-Founder of The Rose

October Breast Health Awareness Month -- Week 4

In June 2013, the Supreme Court struck a blow to the company that had had the sole ability in the U.S. to provide diagnostic testing for the BRCA1 and BRCA1 genes – testing that carried a $3,340 price tag. The Court determined that isolated human genes cannot be patented. The challenge to the company’s patents was brought by scientists, researchers and patients who believed that the patents stood in the way of further research on the genes as well as limited the availability of testing. That testing is now available … and at a lower cost.

One barrier down.

But so many barriers to preventing and ultimately curing breast cancer remain.

In Houston – of the women over age 40 – only 50% are getting their annual mammograms. For some, the issue is cost. Women are twice as likely to be covered as dependents – becoming more vulnerable to losing their insurance, or they still may be uninsured.  The Kaiser Family Foundation has done studies that reveal women delay their own health care for other reasons as well -- including lack of transportation and limited time off from work.

The Rose has made it our business throughout our 27 years of history to take on each of these barriers. We have a model whereby three insured women can help cover the cost of the uninsured woman. Community support by way of donations and sponsorships also play a tremendous role. We have Patient Navigators who help our diagnosed patients find treatment nearby and when necessary provide assistance with transportation. And our mobile fleet is growing so that we can take care directly to the workplace. In a room as small as 10 by 10, our staff can set up and start providing mammograms on site.

Yet … women still have to make the first step and make that appointment.

For many years The Rose has utilized mobile mammography traveling to local clinics to help women  get low-cost mammograms. Appointments were scheduled, yet African American women still did not come. To discover why, the Breast Health Collaborative of Texas and St. Luke’s Episcopal Health Charities (now Episcopal Health Charities) research team along with female leaders in the African American community implemented a study. They found that a woman often did not come because she:

•         Didn’t want to know/had a fear of finding cancer

•         Never had a mammogram before and didn’t know what to expect

•         Feared the exposure to radiation

•         Had been told mammograms are extremely painful

For that reason, Gloria Robinson now focuses on intervention. Gloria is the Community Health Worker, now employed by BHCT, who worked with patients of The Rose, counseling them by phone, addressing each of their concerns. In 2013, the data showed that this method of one-on-one communication has the ability to reduce the no-show rate for African American women from 60% to 16.7%.  Plans are already underway, when funding comes through, to continue interventions with expanded communities.

One more barrier … slowly coming down.

Dorothy Gibbons, Co-Founder and CEO of The Rose

October - Breast Health Awareness Month - Week 3

In the breast cancer world, every culture can … unfortunately … feel “special.”

·         Caucasian women have the highest incidence rate for breast cancer.

·         Compared to all other women in the U.S., Asian American women are the least likely to have ever had a mammogram.

·         Hispanic women get more aggressive breast cancers than non-Hispanic white women.

·         African American women are more likely to die of breast cancer than women in any other racial or ethnic group.

Facts like these are why there’s a national breast cancer awareness month. Usually, though, true awareness comes when someone we know puts a “face on the disease.” Sometimes those faces are even famous. This summer the world paid close attention when actress Angelina Jolie revealed she had chosen to have a preventive double mastectomy.  She chose this option after learning she carried the BRCA1 gene and had an 87% risk of breast cancer and a 50% risk of ovarian cancer. With the surgery, she wrote in the New York Times, her risk for breast cancer is now 5%.

The National Cancer Institute points out that women with mutations in the genes BRCA1 or BRCA2 are five times more likely to be diagnosed with breast cancer, but they also note that less than 1 percent of women actually have a BRCA mutation.

So that’s one face and one form of cancer. But many types of breast cancer exist. They can be non-invasive or invasive; located in the ducts or lobules. And risk factors vary with each type and within cultures.

With all this “awareness” a woman can easily be overwhelmed. However, the one thing we can assure every woman that we see – and at The Rose we are closing in on the 400,000 mark after 27 years of operation – is that they know their body best. The key is to set a baseline – know what your “normal” looks like and then pay attention when there’s a change. Here is a helpful guide for what those changes might be:

·         Lump, hard knot or thickening inside the breast or underarm area

·         Swelling, warmth, redness or darkening of the breast

·         Change in the size or shape of the breast

·         Dimpling or puckering of the skin

·         Itchy, scaly sore or rash on the nipple

·         Pulling in of your nipple or other parts of the breast

·         Nipple discharge that starts suddenly

·         New pain in one spot that does not go away

When 1 in 8 women will develop breast cancer, chances are you didn’t need Ms. Jolie’s announcement to put a face to the disease. But too many women do need someone like her to encourage them to take action. Allow me. Please, schedule your mammogram today.   

Dorothy Gibbons, Co-Founder and CEO of The Rose

 

October - Breast Health Awareness Month - Week 2

Karen was 32 when she had her first mastectomy. A year after her diagnosis, she was told she would need a mammogram on the other side. This was in the days before The Rose was open, so she went to another breast care facility.  When she arrived, she discovered the office manager had cancelled her appointment, telling her, “You're too young to have a mammogram.”  Karen immediately fired back, “Well, Lady, I'm not too young to have breast cancer!

That was 27 years ago. 

For the past decade alone at The Rose, one-fourth of the women we diagnosed have been under the age of 40 -- about 35 to 40 young daughters, wives, mothers each year.

While still a mystery as to why it’s happening, a study released this year found the incidence of advanced breast cancer in women younger than 40 years had nearly doubled over three decades. The authors are calling for further research and analysis of the numbers but maintain that the reality of increased cancer findings among the young can’t be denied.

Since The Rose has been in operation for almost all of those three decades, and since we have always maintained that women know their bodies best, we have often been the place young women who were told they were “too young for a mammogram” would turn.

As a result, we have observed that the young woman is the most medically underserved woman we see.  No matter her ethnic origin, social economic status, insured or uninsured, if a woman is under 40 years old, she will face tremendous barriers finding breast care.  And if she can’t find care, the cancer will grow at a rate that usually exceeds growth in older women.

I’ve seen numerous barriers come down – though not without a fight – in my long career in breast health.  For instance, a woman’s voice can now be heard in a doctor’s office. (The namesake of The Rose, journalist Rose Kushner, went to doctor after doctor before she was assured he would awaken her after a biopsy so she, not her husband, could make the decision on her next steps.) Regular screenings are now an accepted and recommended practice. And costs for preventive screenings are now covered – without a co-pay.

Once every one of these now accepted practices were considered unheard of. So I’m committed to the idea that change can happen. I won’t rest until the only thing that remains unheard is “I’m sorry, you’re too young for a mammogram ….”

Dorothy Gibbons, Co-Founder and CEO of The Rose

October - Breast Health Awareness Month - Week 1

Perhaps you saw or heard reports last month quoting a new breast cancer study published in the journal Cancer. The authors found that more than 70% of deaths from breast cancer in a group of more than 7,000 women occurred in individuals who did not receive regular screening mammograms.

The findings support what I have maintained since starting The Rose with Dr. Dixie Melillo back in 1986 -- breast screening saves lives.

The significance of the new study by researchers from Massachusetts General Hospital, Harvard Medical School, and other Boston institutions is that it stands in sharp contrast to the controversial 2009 U.S. Preventive Services Task Force (USPSTF) proposal to limit screening to women ages 50 to 74 years. Screening women earlier, the task force said, doesn’t save enough lives to justify the expense, worry and procedures that women go through when they get a false-positive result -- a suspicious-looking mammogram that turns out not to be cancer.

The American Cancer Society and the American College of Radiology and scores of other organizations including The Rose challenged the task force suggestions in 2009 and still maintain annual screenings for women 40 and older are recommended. This most recent study adds additional weight to our arguments.

Surgical oncologist Dr. Blake Cady and his colleagues found that among 609 confirmed breast cancer deaths, 29% were among women who had been screened with mammography, while 71% were among women who were not screened regularly. Also, the women who died of breast cancer were younger. Of all breast cancer deaths, only 13% occurred in women age 70 or older, but 50% occurred in women younger than 50.

While the numbers are critical – to ensure that plenty of data exists to pass needed legislation like the 2010 requirement that insurers pay for mammograms without charging patients any copays – what I can’t get away from are the faces. At The Rose, we don’t deal in statistics alone, we see the mothers, sisters, daughters, and friends who have often delayed a mammogram because of a lack of money or time or because they put their families’ needs before their own.

When we started The Rose, we committed to provide breast health care to any woman who came to us – regardless of income, age or any other barrier. I wish I could say that in almost 30 years we have seen radical changes. In truth, I can’t. Women still delay. So I’m thankful for every new piece of evidence that underscores the reality – screenings save lives.

-- Dorothy Gibbons, CEO & Co-Founder of The Rose