Show me the money

A couple of months ago I was just going into the swimming baths and a woman came in behind me and asked the receptionist, ‘Could I leave some leaflets for you to display about a local healthy eating and weight loss group?’ And the woman behind reception said without pausing, ‘No, we don’t display leaflets.’ So the woman with the leaflets turned round and left.

But that was blatantly not true, because on the counter, right there was a cardboard leaflet holder containing leaflets for a cancer charity’s ‘Race for Life’ event taking place in Liverpool. This event is not for a breast cancer specific charity, but the leaflet has a picture showing women in pink t-shirts, and the irritating slogan of ‘Join the girls’, (well it irritated me), implying that this is an event for women. At the time I had a sense of feeling that it was wrong, a health facility supporting a national cancer reearch charity, but not a local health group.

And, the ‘Race for Life’ event happened this weekend. I was reminded of that because one of my squash friends told me she was taking part in this event. I said, ‘I hope you’re not wearing a pink t-shirt!’ and she laughed. But she told me she was doing it with her friend, whose boyfriend’s mother has just been diagnosed with breast cancer and is now being treated. And she wanted to do something.

I totally get that. She wanted to do something.

She wanted to do something that will show that she cares, that might raise money that could stop cancer happening, or improve the treatments for cancer. I totally get that. But.

I didn’t see the event, but Ronnie was in the park with coach Karen and they saw it. Thousands of women wearing pink. What do they think this all achieves? This is not being critical of their intentions. They think it’s doing something ‘good’. And this is the only way the breast cancer culture offers them a way to do that.

In the USA these events are more prolific and higher profile. As Gayle Sulik describes them:

“It sounds fun. Solidaristic. Important. Meaningful. Sanctimonious. In some ways it is.”

But.

Now, I start to feel like my fellow blogger Anna Rachnel over at The Cancer Culture Chronicles who recently wrote a series of in-depth pieces about how Komen, the largest breast cancer charity in the USA, spend their money, much of which is raised by women doing running and walking events.

So, I’m not an accountant like Anna, but I started to look at the figures that these cancer charities in the UK are working with. Cancer Research UK, who organise the Race for Life events, and are entirely funded by the public, have an annual income of £514 million. I’ll just repeat that. £514,000,000. That’s a lot of money.

In order to raise that amount of money charities have to be seen, they have to have a profile, spend money on marketing and pay staff – it costs money to raise money. On the first page of Cancer Research UK’s accounts for 09/10 they state that of every £1 donated by the public, 80p will go towards their work of research, information and policy influencing. And 20p is the cost of doing that.

And then I looked at the figures for the largest breast cancer charity in the UK, Breakthrough Breast Cancer. Their annual income is just over £18 million. They don’t have an obvious figure for how they spend each pound they receive, but on their financial review (page 28) they list the cost of generating income as £6.8 million. Now I’ve already said I’m not an accountant, but to me that looks like about 62p of each £1 is used for their work, and 38p is the cost of generating it.

Moving on to Breast Cancer Care with an annual income of just over £11 million. In their accounts on page 26 they state that the cost of raising each £1 has increased from 36p to 41p.

There are other breast cancer charities in the UK, but these are the first two that I looked at. I mean they do good things, don’t they? But there’s duplication here. All charities spend money, some of which the good public raise for them, on ‘costs’, that means rent on office space and advertising and promotion and salaries. When we raise money for them, we’re paying for all that too. Surely they could reduce costs? Just a thought.

Because spending less money on costs means more money could be put into research. Research that’s currently being done, but also in the areas where some of us in the breast cancer community want to see it going. On prevention, and I don’t mean the ‘blame the patient’ lifestyle risks version of prevention, I mean a serious look at everyday carcinogens and environmental links to breast cancer.  And the other area lacking in research is treatment for metastatic breast cancer, or stage IV breast cancer, which is currently incurable. Statistics for metastatic recurrence vary depending on the source but this quote states 25%. It’s from the New York Times article on 17 Jan 2011 about stage IV breast cancer:

“But about 25 percent of those with early-stage disease develop metastatic forms, with an estimated 49,000 new diagnoses each year, according to the American Cancer Society.”

So given that nearly 48,000 women are diagnosed with breast cancer each year in the UK, there’s a lot of women who’d really like a cure for stage IV. I mean ‘really like’ is an understatement. Our lives literally depend on it. Our ‘survival’.

As it happens the same day this Race for Life event takes place is also National Survivors Day. So what does that mean? From their website:

“Who is a cancer survivor? The National Cancer Survivors Day Foundation defines a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. National Cancer Survivors Day affords your community an opportunity to demonstrate that it has an active, productive cancer survivor population.”

So how does someone with stage IV feel about being called a survivor, when they know that breast cancer will probably kill them? And does blogging count as active and productive?

A friend sends me a link to a short film, the Pink Well Breast Cancer Survior Dance Tribute to celebrate National Cancer Survivors Day in Houston, Texas. Gloria Gaynor sings ‘I will survive’ whilst hundreds of women parade in pink wigs and tinsel, in sparkly pink dresses and feather boas, and smile and dance. I’ve included the link here, I could only bear to watch a few seconds, but if you’re curious…

Meanwhile, the same friend is off for more scans for her metastatic breast cancer. She is 40 years old. Scans to see if her weekly chemotherapy treatments are having an effect, if she might get a period of stable disease. And for those of you who haven’t experienced intense medical treatment, we’re talking about every week of your life interupted by at least one medical appointment, hours of sitting round waiting for treatment, then waiting for results from scans, living her life in three month chunks. It means visits to clinics where other patients hopefully ask her when she’s going to end her treatment. It means serious side effects and unexpected hospital stays due to complications with her heart and lungs. Feeling like a prisoner because her doctors say it’s not safe for her to fly right now, so she has to cancel a short break on a retreat, which is just what she could do with right now. And anyway, her treatment is so intense she can only think about taking a few days away at a time.

Do you think she would like a pink wig or a feather boa? Do you think she feels like dancing and celebrating survivorship?

Just asking.

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27 thoughts on “Show me the money

  1. Thank you, Sarah. You said it perfectly. I’ve learned so much in the last few months from bloggers like you and Anna. Much work still needs to be done.

  2. You’re right. Silence will not do. There are no good answers here even if we all agreed on a suitable amount these nonprofits give to research. For most of us, the bloom is off the pink rose. We’re jaded, depressed and angry about the lack of progress. At the same time, there’s a seemingly endless stream of unhealthy pink foods, tacky pink jewelry and now perfume these nonprofits align themselves with. I want to see a “map” defining scientific areas of research, duplication of research, promising areas and those that have shown little to no success. This map might help “them” more than us.

    Brenda

  3. Sarah, thank you for your post. My Dad and I are the keynote “survivor” speakers for the upcoming fundraiser for The American Cancer Society in my hometown. Our speech is about being a survivor from the perspective of how you choose to live whatever life you have instead of becoming a victim of the DIAGNOSIS. I know many people who have died of cancer but lived the rest of their lives in as full of a way possible given what they were up against. To me, this is surviorship….not necessarily lifespan. I wrote in a recent blog piece that survivorship is what happens AFTER the s**t hits the fan, and is all about how you choose to continue to live. You have given me much to think about.

    • I’m glad you have found food for thought here. It’s difficult isn’t it this ‘labelling’ – survivor, victim, whatever. I just want to be me! All best with your talk.

  4. I understand that people “feel” like they want to do something good, but I want to encourage everybody to know that feeling and doing are not quite the same thing. Part of doing is asking deeper questions about the charities that are being supported, and your post today is a great example.

    Just the same as questions should be asked about these “celebrations”. It’s one thing to celebrate individually, but these collective idealized celebrations seem almost cult like and a tad self indulgent to me. Again a question needs to be asked, what exactly is being celebrated from a group perspective? The video you link to is disturbing. Imagine you were out shopping that day, you have some other disease, or you have metastatic cancer or you just lost a loved one. How do you think those people feel seeing such an arrogant spectacle of pink largesse? I know how I feel about it. Distinctly uncomfortable and a bit embarrassed actually.

    • Yes, I so hear you on that Anna – people need to be asking deeper questions.
      Barbara Ehrenreich called the pink culture a ‘cult’ and when you see this sort of display then it does feel very disturbing. I feel angry when I see this sort spectacle, angry because it denies the reality of this disease and many who are living with metastatic disease.

  5. Sarah – you said it! :-) It sucks, but if we all speak out – hopefully we’ll get our point across to these organizations. Even as a survivor I don’t want to put on a pink wig & tinsel to dance around. I’m too busy trying to get my reluctant body to recover from the assault that is cancer treatment.

  6. I see these posters everywhere and there are three events organised in Cardiff this summer as it’s so popular. Feel like going there to hand out leaflets against Cancer Research UK and I’m never donating to or buying from their charity shops again.

    • Lemsip… yes, seeing the leaflets everywhere I find really infuriating… but as you say, they are very popular. We just have to get people asking more about what they’re really for…

  7. Just wanted to quickly say thanks to everyone for your comments and will be continuing this conversation. Just back from my aunt’s funeral and will catch up tomorrow. Bbest, Sarah

  8. Like I said in my blog.. 2% on $10.. 2% on £10.. Thats how much certain companies will go on Pink Fluff..and woman and men are buying into it.. There is plenty profit to be made on tears and the hunger for a cure to be found.. A pink ribbon ok that is ok .. but companies are buying into a multi million industry that thrieves on the fear of cancer

    Sarah

  9. Great points, Sarah. I’m so sorry about your aunt. In the meantime we press on. I do hope that eventually people will realize what they are saying when they call “all” people with a history of cancer “survivors.” They certainly can’t relate to Stage IV, or even Stage I when they paint the brush wide, trying to be all-inclusive but falling flat. Keep up the conversation…for our enjoyment and sanity!
    Jan

  10. Pingback: Honoring Survivorship « Becomingamazon's Blog

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