Tag Archives: Breast Cancer

by

Saying good-bye to the pink ribbon, but not the cause

Tabling in Dayton, NV

Long-time readers are aware of my very active political background. I have served on our local party committee and worked for the DNC as a field organizer in rural Nevada.  I believed in the party. Four years ago I was a staunch Hillary Clinton supporter and there was much ugliness directed at people like me in that election from my own party.  It’s a fact, and I’m not going to sugar-coat it.  Sadly, it was a very divisive time and when I finally stepped away from the Democratic party I wanted nothing to do with activist politics. This isn’t to say I stopped being interested in politics, but I was sick to death of the tribalism of it all, Left and Right.

2005

However, I am a helper at heart. I like causes. I like thinking that I am making a difference, even if it is just one person at a time.   In May 2007 I started the job I currently hold. It is a large company (multinational) with about 400 employees just at our site alone.  In addition, over the years I had participated in the Northern Nevada  Susan G. Komen Race for the Cure as an individual and on occasion I would be joined by my daughter or a friend.

2009

When I went to work for my very large company I was very excited about the prospect of participating in the race on a team. When I found out that our company did not already have a team I formed one and got about 29 of my co-workers and their family and friends on board.  We raised a couple thousand dollars, as I recall.  It became an annual tradition, and over the years our team has grown to average about 50 members each year.  Over the course of those five years, we raised well over $20,000.

2010

In 2008 I volunteered to serve on the race committee and, in addition to my team captain role, served as the Database Chair for the next four years (2008-2011). For the last two years I also served as the In-Person Registration Chair (in addition to my team captain and database duties).

I’ve tabled for Komen, attended its national conference, personally given hundreds – if not thousands – of dollars to the cause.  I even served on the board of the affiliate as its secretary for about two years.

When I commit to a cause, this is what it looks like:  Full bore, pedal to the metal.

I am not a breast cancer survivor but have had too many friends and relatives affected or killed by this disease.  Just this week one of my co-workers, a young mother of two, underwent a radical bilateral mastectomy. So this is personal. Big time.

In 2009 I wrote this about my experience with Susan G. Komen:

The women I work with at SGK are a varied lot. But one of the things I love most about serving with this wonderful group of women (and men) is that when we are in a room together, all thoughts of political, religious or philosophical differences go out the window in our pursuit of a cure and assistance for those diagnosed with breast cancer.

That all got blown out of the water this week and it is why I’ll never give another dime or moment of my time to this organization. And all the back-tracking and weasel words in the world won’t change that.  Linda lays it out in a very blunt and to-the-point message.

Going forward my cancer research donations will go to the American Cancer Society, and locally I will support Moms on the Run who help not only breast cancer patients but women with other women’s cancers as well. And yes, Planned Parenthood can count on donations from me as well. I’ve taken this fantastic organization far too much for granted and it’s time to give back.

     

by

Quote of the Year

“You always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.”

Here.

by

Breast Cancer Bill of Rights

Have you signed on?

Breast Cancer Bill of Rights

Every woman deserves access to timely and affordable high-quality breast health care but not every woman has it. As a breast cancer advocate, I pledge to support the Breast Cancer Bill of Rights and its ten tenets:

  1. EARLY DETECTION: Every woman has a right to access breast cancer screening tools that may save her life.
  2. FINANCIAL STABILITY: Women who are diagnosed with breast cancer have a right to fight the disease without fear of bankruptcy.
  3. ACCESS: Breast cancer patients and survivors have a right to health coverage.
  4. TIMELY CARE: Every woman who has an abnormal mammogram has a right to a diagnosis and treatment, if needed, without delay.
  5. HIGH QUALITY: Every woman has a right to high quality care, no matter where she seeks medical services.
  6. STRONG SAFETY NET: Uninsured women have a right to a strong breast health care safety net.
  7. RECONSTRUCTION: Breast cancer survivors have a right to insurance coverage for full mastectomy care, including reconstruction.
  8. CLINICAL TRIALS: Breast cancer patients who participate in a clinical trial have a right to coverage for routine health care costs.
  9. PATIENT EDUCATION: Every woman has a right to make informed choices and take control of her own health.
  10. INNOVATION: All Americans have a right to a government that invests adequately in innovative cancer research.

 

I promise to protect our newly acquired rights in the Patient Protections and Affordable Care Act and keep fighting until the entire Breast Cancer Bill of Rights is enshrined in law and extended to all women.

by

Pink Week

I’ll be at my Real Life job today and then will be out of the office Tuesday through Friday to fulfill my duties as the Registration and Database Chair for the 2010 Susan G. Komen Race for the Cure which will be this Sunday at Boomtown.  This is the third year I’ve served on the race committee and it’s been one of the most challenging. The economy, for all that the “experts” are telling us is improving, has taken it’s toll on our sponsors and participants.  After we’d gotten some of our race materials printed we were informed by UNR that we would not be able to use the Quad, and so we had to scramble to find another location. Vital time was lost looking for another venue able to hold the numbers that our race attracts. We were also looking for a place to hold our annual Team Captain Kickoff event (held in July), and one thing led to another, and it was Boomtown that stepped up to the plate and offered us their site not only for our Kickoff event, but also for everything else for the race, including In Person Registration and Packet Pick-Up.  Boomtown has been a true partner for the race and we are very grateful.

Me and my pal, Kerry. 2003

Some people might think Boomtown is too far to go for the race, but it’s not any further away for me than when the race was held at IGT, and getting in and out of the place will be a heck of a lot easier! Plus, they’ve got a Peet’s Coffee and a great buffet on site! What’s not to love?

2005

There are so many women and men that work together on this event, but by far, our board president and race co-chair, Lucy McGuire, is the one who has done the yeoman’s work. She has a full time job, a family, and yet she seems to devote every waking hour to Komen. She’s either on the phone, on email, or making trips back and forth to Boomtown, she is an inspiration to me.

It will be a late night tonight, what with pulling lists to coordinate with our timing company, creating mailing labels for all the tshirts we’ll mail to our Sleep in for the Cure participants, organizing binders for registration and packet pick-up.

Why do I do it? Simple. I want to see breast cancer eradicated, and knowing that Susan G. Komen is the largest funder of research into breast cancer outside the federal government keeps me coming back.

You may just see pink. I see a deadly disease and potential cures.

If you can, please donate.

2009 - UNR

I’ll be checking in.

by

Now if we could just get our uteri back

But at least we do own our genes. For now. From the ACLU blog:

Late Monday afternoon, the judge issued his decision in our breast cancer gene patents lawsuit, which challenges the government’s granting of and Myriad Genetics’ control of patents on the BRCA1 and BRCA2 human genes, which are associated with breast and ovarian cancer.

The judge declared that all 15 patent claims that we challenged are invalid, based on the fact that they cover products of nature and abstract ideas. He wrote in his decision:

The resolution of these motions is based upon long recognized principles of molecular biology and genetics: DNA represents the physical embodiment of biological information, distinct in its essential characteristics from any other chemical found in nature. It is concluded that DNA’s existence in an “isolated” form alters neither this fundamental quality of DNA as it exists in the body nor the information it encodes. Therefore, the patents at issue directed to “isolated DNA” containing sequences found in nature are unsustainable as a matter of law and are deemed unpatentable subject matter under 35 U.S.C. § 101.

(You can read more about our legal arguments here and here.)

The judge ruled that Myriad’s claim — that the “isolation” of the BRCA genes from the surrounding DNA makes them into something distinct and patentable — is fundamentally flawed and nothing more than semantics:

Many, however, including scientists in the field of molecular biology and genomics, have considered this practice a “lawyer’s trick” that circumvents the prohibitions on the direct patenting of the DNA in our bodies but which, in practice, reaches the same result.

This is a huge victory for women’s health and scientific freedom. Myriad has already said that they will appeal, but if this decision is upheld, it will mean that the thousands of researchers and clinicians who have the ability to conduct BRCA testing and provide results to women, will no longer be prohibited from doing so. This could well mean that the price of this test will come down, making it accessible to many women for whom the current cost (Myriad charges over $3,000) is prohibitive. It would also mean that our six individual women plaintiffs and the thousands of other women affected by hereditary breast and ovarian cancer can more freely access critical information about their own genetics, such as getting a second opinion before taking drastic preventative measures like mastectomy or having their ovaries removed. Finally, it would mean that the PTO would change its policy and no longer issue patents on human genes.

by

Power in the Pink

After this weekend’s affiliate conference, I am more convinced than ever that it’s not just about the pink. Yeah, the Komen ribbon is the brand, but it is what is behind that ribbon that is a force. I wish that those who cannot look beyond the pink, and the ribbons, the boas and the sometime frivolity could have heard the Egyptian doctor telling the story of the brave survivors who dared to out themselves by wearing pink, speaking to the press, and marching proudly in very first ever Race for the Cure at the pyramids in Giza and how that race, that raising of awareness, caused many women to seek out screening and treatment EARLY, rather than hiding in shame.  Or the woman from Bosnia-Herzegovina who spoke of their race that united enemies against a single foe. As one panelist commented, and I paraphrase, they weren’t just having a race, they were working on world peace!  A bit over the top? Perhaps, but it was a sentiment I could identify with. After years of working on behalf of partisan politics, stepping into a race committee meeting is like stepping into a nonpartisan oasis.

I sat in on a research session that was, for the most part, over my head, but taught me a little bit about what is appropriate treatment for what kinds of tumors. I learned that Komen has provided research grants early on in many of the treatments that are today saving and extending lives.

I learned about the Chicagoland affiliate which has taken a startling statistic (the more than double breast cancer mortality rate of  Black women in the area) and put into action a plan involving the whole community, public policy, and health care providers.

Me and my fairy godmother...passionately pink for the cure

I learned that empowering women to take care of their own health is the key to life, and that our organization will not go backward, will not tell women not to worry their pretty little heads, will fight for early screening and teaching women to know their bodies. Knowledge is power, and there is plenty of power amidst all the pink.

by

Petition: Don’t let women lose access to mammography

From my inbox:

You’ve no doubt heard the news this week about the new recommendations concerning mammography screening.

While this shows that there is disagreement among experts about when mammograms should begin and on what schedule, all agree that mammograms save lives – in women over 50 and women in their 40s. 

Sign our petition and help us ensure that all women have access to this life-saving screening. The U.S. Preventive Services Task Force’s recommendations could significantly change breast cancer screening approaches. And while these recommendations are not binding, they are often consulted by health care providers and insurance companies. Most breast cancer experts agree far more than they disagree. One thing that the evidence clearly shows is that mammography reduces the risk of dying from breast cancer. Susan G. Komen for the Cure® continues to recommend annual mammography beginning at age 40 for women of average risk and earlier for women with known risks for breast cancer. Mammography is not perfect, but until we can develop more precise screening methods and can more accurately predict which women are at risk for breast cancer it is still our best tool for early detection. Please sign our petition and help make sure there are no barriers for women to get the mammograms they need. 

While controversies like this one make for good headlines, we must not lose sight of the fact that one third of all women who should get a mammogram don’t, because they lack access, education or awareness. This is an issue that needs our focus and attention. If we make progress with screening in vulnerable populations, we will continue to make progress in the fight against breast cancer.  

The Komen Advocacy Alliance will continue to advocate for women in this country and will push to ensure that all women have access to mammography. Sign our petition today >> Thanks for your support on this urgent issue.Sincerely, 

Lucy McGuire
President, Northern Nevada Affiliate Susan G. Komen for the Cure

by

Cost savings at the expense of women’s lives?

“At least 40 percent of the lives saved by mammographic screening are of women aged 40-49. These recommendations are inconsistent with current science and apparently have been developed in an attempt to reduce costs. Unfortunately, many women may pay for this unsound approach with their lives.”

Unbelieveable.

Here is a rundown of the task force’s findings and their recommendations.

* The panel found that women who have screening mammograms, an X-ray of the breast, die less frequently of breast cancer, but for women you are aged 40 to 49, the benefits of screening are small when they factored in the harms of false-positives and the worry and cost of extra tests.

I’d rather have the “worry” of a false positive than die in ignorance.

* They found for women aged 50 to 74, routine screening every other year instead of every year brought women nearly all of the benefit in terms of saving lives, while cutting the risk of false positives and other harms by half.

* The panel said there is not enough evidence to recommend routine screening for women over age 74.

* The task force also found no evidence that breast exams done by women or her doctor reduces rates of breast cancer deaths. They recommend against teaching women how to do self breast exams.

What? Don’t examine our own breasts? Don’t teach women how to do examine their own? WTF??