Breast Cancer Action is a San Francisco based breast cancer activist group.

Think Before You Pink

Any comments?

Warmest Regards
Joe

I can't speak to the entire ad, but I do know a thing or two about breast cancer research. Both Mel and I are former breast cancer research center employees. One of my jobs was grant writing for the scientists. As such, I know we received direct grant money for both research and community programs from organizations such as Avon and Komen Foundation. These and other non-profit organizations have financial records that are open to the public upon request.

As far as them not working together, that's an interesting point. For-profit companies, like bio-tech firms ARE working for cures and are making great progress. It certainly doesn't seem fast enough for us, but they are working. As corporations, they are also competing. That's the nature of the beast.

I know that scientists at my company were in constant contact with other researchers. They knew what other scientists were working on. Journals, meetings, etc. also help them know other work being done. Duplication wouldn't make sense, because they are all fighting for the same pieces of grant pie.

I am not sure, but I do not believe that breast cancer rates are increasing. I believe that education and awareness has increased and women are taking better advantage of early detection.

I would hate messages such as this one to decrease the amount of funding given agencies by the public. If anything, you might "think before you pink" at Wal-Marts and such who sell bc items strictly for profit. If you want a pink ribbon, buy it from a respected non-profit. I made the mistake recently of buying a pink magnetic car ribbon from a retailer. It faded to white after the first car wash. As did the contribution I didn't make.

If anything, I would hope this message would encourage men and women to get educated about breast cancer AND its organizations. The American Cancer Society does NO research, but they help survivors. Komen, for example, funds MUCH research AND helps survivors. Just as www.her2support.org and www.breastcancersite.com differ from one another and other sites, they are not competing. Unfortunately, there are plenty of survivors to utilize them all.

Love and light,

Lisa

...and one more thing. This site puts down Cause-related marketing as a way for companies to gain publicity while donating a little to causes like bc. As a former fundraiser I can tell you that cause marketing IS huge. And fundraisers couldn't do without it. Prior to its creation, a fundraiser had to send out thousands of letters, for example, with that related cost to receive even half the amount one company can give through cause marketing.

I personally don't believe a company is bad because they a)choose a cause they believe in, b)are raising awareness of both their company and the organization through its campaign, and c) oh, hell, I don't remember since I'm typing so fast.

Is the fundraising world perfect? No. Is the research world perfect? Not at all. Are awareness campaigns like the one shown bad? We'll see. It will be interesting to see what donations do this October.

Love and light,

Lisa

joe--- I THINK THE AD SAYS IT ALL...IT IS SOMETHING TO THINK ABOUT..

<<I would hate messages such as this one to decrease the amount of funding given agencies by the public. If anything, you might "think before you pink" at Wal-Marts and such who sell bc items strictly for profit. If you want a pink ribbon, buy it from a respected non-profit. I made the mistake recently of buying a pink magnetic car ribbon from a retailer. It faded to white after the first car wash. As did the contribution I didn't make.>>

I agree. I do see a need for activism, though, in a vatiety of other areas. One is the inequality of treatment--in terms of follow-up and even getting a 2nd opinion--at least in California. A 2nd opinion is only as good as your insurance. The same applies to tests that are given for follow-up. I was at a conference for physicians and that was mentioned--to which the rest of the audience gave a 'nervous'-sounding laugh.

As far as treatment options--some hmo's go out of their way to avoid testing for and showing all that is going on. They ARE allowed to do that because if they don't offer the treatment (if it isn't standard) then they don't have to test for it or even show that it is going on.

The other area involves dx of metastases. There is no standard protocol for such and/or at what point to begin treatment. How is it that some are dx'd with bone mets from a single hot spot--and are then given curative and prophylactic treatment whereas others are told that what they have is 'arthritic' activity that may also show up on scans the same way--and these people are not given dx of mets until they have what is called a super scan and the mets are throughout most of their body.

Another area involves the dx of brain mets. I would think that was 'standard' but no. At our hmo I was told by the oncologist that it dx'd if one has an unrelenting headache that won't go away or other severe, interfering symptoms. I asked about different radiation treatments and was told that was NOT done. Huh??? They don't dx small individual areas of mets and don't bother with gamma knife treatments. That also is ignored until symptoms are so debilitating that prognosis is not good--but it IS cost effective in terms of their outlay of treatment. The same is true for those on medicare.

Technically, treatment SHOULD be no different. Aids activists made a dent in the system with their strategies and lobbying. They get all the latest treatment options at minimal, if any cost--often 50 cents per dose. Whereas new treatments are often not approved universally for b.c. because of the cost--look at Xeloda, and until recently, Arimidex. Then there is the cost of drugs such as Neulasta--$6,500.00 per injection with a copay of 20% (twelve hundred dollars) if one is fortunate enough to be offered it.

Then there are the differences in aims of treatment between cancers. There are too many women with breast cancer for them to all be given optimal treatment(s). There ARE researchers working on treatment and cures--prompt delivery of what IS already available is not being offered to all. In fact, one can't even get it in some areas if they are willing to pay f or it. Activism is definately needed in some areas--but not to take away from the research and work that is already being done--would not want to see that compromised.

In a perfect world, every onc everywhere would know the latest, best treatment for bc or mets. But just as there are 100 types of cancer, there are all kinds of oncs. Some are more conservative than others in their diagnosis and treatment. Some are more informed than others.

I believe this is where activism does come into play. But the activism I speak of is from the patient and her family. As with any disease, the more the patient knows and shares with the physician, the better the treatment.

As far as diagnosis of mets, true there is no "standard" protocol since mets show up in different ways. But researchers like Bayer are trying to help.

In my opinion, STRICTLY in my opinion, if one wants to be a bc activist, it would be best served by leaning on insurance companies and legislatures, not the folks trying to help us.

Love and light,

Lisa

Interesting ad.

In response to Joe's "whay do you think?"

I think it is beyond the mandate of a list such as ours to get involved in in this kind of activism..... and believe me if there is one activist it is I! If we are involved in some kind of industry "push", it should be treatment orientated...to the guys in the trenches working on new cures. Is the money misspent? Maybe! Would I be surprised...No.

I would be more interested in sqeezing companies such as GSK for expanded research into Lapatinib, etc. Look at the number of trials uot there.... the money is getting out there.

Al

Wow !!!

The only reason that I bought this to everyone's attention was the "Think Before You Pink" program portions of which I agree with.

Every October we are swamped with "feel good" pink ribbon campaigns with no accountability. As the principal fundraiser for this organization, I almost always hit a brick wall with these "generous" companies. Not many people realize it but it takes almost $30,000 a year to operate this website and administer our programs.
We do this all with volunteers, not one penny is paid in salaries.

Christine, Myself and the Board of Directors are extremely proud of the mature culture of our message boards. In our 4 years of operation, I only had to bar one person and delete 3 posts. That in itself is an amazing track record.

There are good organizations raise money, show accountability, and even publish where the money goes on their websites. The Komen Organization is one good example.

Others which I will not name, send us newsletters on how much they raise, but never state where the money goes.

As far as political activism, there is an organization called the National Breast Cancer Coalition, of which we are a full member, who not only lobbies in congress but also trains volunteers about how to start grass root campaigns. Just this weekend Christine wrote a letter of recomendation for one of our members to attend the NBCC's Project Lead Program.

The HER2 Support Group is presently lobbying the National Comprehensive Cancer Network to change the standards of care of stage IV metastatic breast cancer patients to include regular brain MRI's regardless of symptoms. You will hear more about this campaign shortly.

Warmest Regards
Joe

Like Joe, if there's anyone that's an activist, it's me. Really I'm more like a pacifist-activist. I have some strong thoughts, but don't do enough about them.

Sorry if I came on too strong.

Love and light,

Lisa

Lisa -
doesn't seem to me that you 'came on strong.'
You spoke from your heart and real working knowledge. Many of us have not been that close to anything besides the treatment end of the cancer business. And, let's not forget, to most in the field it IS a business.

So, as patients and survivors, we have more at stake in how we spend our energy and resouces and may be more thoughtful than the average citizen thinking they are "doing" something for a cause. Personally, I would not buy a pink ribbon to put on my car, but have other little ways of showing support and reaching out to others.

Having attended a Project Lead presentation at San Antonio with Esther, I can say that this is a very worthwhile group, and they have high standards for the people they accept for the seminar camps. The "graduates" then go on to do any number of things as bona fide "patient advocates."

It is my intention to help with worthwhile lobbying efforts whenever possible, and to encourage other cancer patients to learn about their options for treatment and to go after the one they feel gives them the best hope and chance to overcome the disease.

One other thing - I notice in that website for Breast Cancer Action a pink square with a big black "X" over it.
Guess they don't even like the color pink? They would not be the only ones. I know some BC survivors who dislike the pink ribbon as a symbol of their disease.

Hi all,

First off, thanks to Joe for giving us all the chance to step back and look at a big picture question like this. Sometimes in the middle of all the challenges of daily life it's so hard to find time to take a breath and think about what major concerns to devote energy to.

Second off, feel free to disregard what I'm about to say as the rantings of a left wing maniac. For all the US folks out there, suffice to say that not only do I live in Cambridge, MA, but my choice for president in '04 was the saintly Dennis Kucinich.

I'm a big fan of BCA and like a lot of what they advocate for. I was just thinking about this the other day when I got the Komen foundation newsletter. Lots of good stuff in there, but I took a sharp breath in when I saw that one of their corporate sponsors was McDonalds. Now I won't go on my usual anti-fast food diatribe here (remember I supported the only vegan candidate who has ever run for prez in the US!!) but it is a little dicey when companies that are organized around selling unhealthy products try to get a little bit of what sociologists call "the halo effect"--washing away the taint of much of their work with a few nominal good deeds here and there.

So, I'm all for BCA style activism. AND all for the kind of personal care activism that Lisa and Joe have referred to and that this site is all about.

I just read an interview with Mark Pegram of UCLA, where he noted with some surprise that in the last couple of years at UCLA he was seeing lots of women with Stage IV disease who were just completely demanding Brain MRIs even though he and other doctors were not recommending them. I have to think that this clinical observation is due in large part to her2support.org.

all the best,
Jeff

Hi Guys,
I think all this political stuff is over my head.......I guess that's why I didn't vote in the last presidential race.

Al

Al - LOL you Canadian you... Get out and vote!

Anyway - there are just many reason for me to get on my soapbox, I promise to try not to rant...

I just want to cover a few of these issues, after all, we are all individuals with our own oppinions and experiences.

The black X through the pink ribbon - Red, White and Blue are not my favorite colors, but I still stand by what my flag stands for (yes I am American) - through thick and thin (lately it gets harder). The pink ribbon may not be what everyone likes to represent the awareness of the cause but it is the symbol of the cause. I dont support the pink ribbon - I support the cause, the doctors that have dedicated their professional lives to the cause, people like Joe and Christine that dedicate their lives to information and awareness, and the wonderful people whose lives have been touched or devistated by the disease, what the cause stands for. I think people need to think through campaigns like this and not alienate individuals from what may be a good cause because of symbology.

Accountablity. I am accountable for the causes I chose to support. I am responsible for asking questions to fund raisers. Questions like what percentage of contributions are spent and administrative overhead and what percentage of donations actually go into making a difference. If I am giving $1 I want as much as possible to go to the actual cause and not the Executive Directors salary! Yes, the Director needs paid, but if greater than 10-12% of donations are going to overhead (like salary and advertising) I doubt the fund management.

That being said, alot of abuse of charitable causes happens. Not everyone asks the hard questions or even knows to ask. Should there be some oversight - sure - but how much will that cost the cause? My impressions from the supplied hyperlink - someone wants a piece of the the financial pie and selected a good reason, but can/will it hurt the actual cause - I think it will. Make this a non-profit committee with real oversight and I am fine - take away $$$ from actual research for this and I think there is a problem.

As Lisa stated, we have worked for non-profit Cancer research. We met wonderful people operating on lower than standard salaries because they believed in their work. They operated on less than state-of-the-art computer systems, because the test results were more important that how fast they got the test results. I work as a Network Engineer and I would of loved to see powerful systems in the hands of the reseachers, but not at the cost of results and discovery.

Just my opinions, but I believe we could see the old "throw the baby out with the bath water" analogy starting.

Love and Light
Mel (spouse of Lisa)