Breast Cancer Activism
Breast Cancer Activism I started this separate thread to pull out one of the themes that has been running through the “how things get distorted thread”.
It’s clear that there’s a pretty high level of frustration about the influence breast cancer patients have on changing things for the better. There are ways to get involved. I’m going to talk about the Breakthrough Campaigns and Advocacy Network (CAN) as I’m most familiar with them, being a member, but I hope BCC will comment as well as they involve breast cancer patients in campaigning.
Two years ago, Breakthrough merged with the UK Breast Cancer Coalition. UKBCC was a sister organisation of the US Breast Cancer Coalition. Both organisations comprise people directly affected by breast cancer and they carry out training and lobbying for improvement in Breast Cancer Services. The fact that Breakthrough merged with a lobbying group makes them a very strong organisation for influencing MPs and decision makers.
Nearly a year ago, I realised that I felt that breast cancer patients seemed to be left on the sidelines with campaigning for improvements. I knew about the US BCC and contacted them to see if they had a sister organisation in the UK. They put me in touch with a former member of UKBCC and she encouraged me to join Breakthrough. Since joining Breakthrough, I’ve been to a workshop in Bristol to help to formulate training plans for CAN members, I’ve been to the “Westminster Fly-In” and received lobbying, and lobbied my MP about Herceptin, I’ve been to a research conference organised by Breakthrough to discuss research funding & priorities. Twelve months ago, it never occurred to me that I’d do all that.
There are 500 members of Breakthrough CAN round the country. They are always looking for more members. They realise that not everyone has the time or is well enough to travel around campaigning, but just writing to your MP or visiting his/her local surgery in support of Breakthrough Campaigns helps. Early in 2006, they are planning to organise regional meetings with members to discuss training and activities for this year. I think that CAN provides an opportunity for anyone who wants to take action on breast cancer issues to join them and influence campaigns. ChristineMH mentioned that it would be great if some people were geographically closer as it would make it so much easier to take action together. One thing I’ve asked Breakthrough to do is to let me know whether they will provide a breakdown of where all the 500 CAN members are located. Then it would be possible to form regional groups and take more focused action at a local level and also identify local best practice so that we could notify other regional groups and try to improve things all over the country.
Things won’t suddenly change for the better. HER2 primary breast cancer patients aren’t all going to get Herceptin tomorrow, whatever CAN members say to their MPs. It takes small steps by dedicated people to change things and it requires persistence. The question of assertiveness was mentioned on the other thread. The more campaigning a person does, the more their confidence grows and the more assertive they will become and, in CAN, Breakthrough and other CAN members are there to offer training support and advice.
I hope what I’ve said helps to make people feel that everyone can make a difference, if they want. I believe that’s true.
Breakthrough Like Daphne I’m a CAN member and I’ve also been to the Westminster fly-in and the research conference. I think Breathrough is pretty good professional organisation though I think there are some tensions between its fundraising wing and its lobbying wing. I’ve met several great really interesting women through CAN, and Breakthrough has been helpful to me in finding out more information about triple negative cancers.
I think the organisation has the potential to be a radical campaigning organisation though it isn’s quite there yet. One of the problems is I think that there isn’t really an agreement about what the priorities for campaigning should be. Hereceptin has rightly been a big focus this year but there are many other issues we should be shouting about…but can we agree what they are?
I get bursts of enthusiam for campaigning but they alternate with periods of boredom when I think I’ll go nuts if I hear the words breast cancer spoken of again…does anyone else have that ambivalence?
Jane
Jane I’d definitely like Breakthrough to be more radical and I agree that the need to reach agreement on what the campaigning priorities are. I think that the research conference feedback and the regional meetings that are planning for this year should help them to do that. I’ll be pretty miffed if they don’t.
In the US, they have Breast Cancer Action, started in San Francisco and they are truly radical - they ask questions about environmental stuff and refuse to accept any donations from pharmaceutical companies and they promote “Think Before you Pink”. I wish we had some of their radical approach in this country, but used within established organisations like Breakthrough. I think the problem with a group like BCA is that because they are radical they can easily be labelled extremists and isolated. They are lobbying for a co-ordinated approach to breast cancer funding and research under the label the Breast Cancer Puzzle and I definitely think we should be raising the same questions in this country. - Just Google “Breast Cancer Action” and see what I’m on about.
I don’t get bored with breast cancer stuff - I’m a bit like a dog with a bone, maybe too much so. Anyway, keep campaigning we need you.
My problem! One of my problems in getting wholeheartedly committed to breast cancer activism is that most radical activists in the US implicate environmental pollutants and chemicals in their lobbying. I have always been highly sceptical of this link and highly sceptical of the way that the environmental lobby has been associated with left politics…interesting now that with Cameron as Tory leader the more complicated roots of ‘enivironmentalism’ are being exposed as part of a right wing tradition too.
I don’t think the pharmaceutical indistry is in some kind of conspiracy or plot to prevent a cure for breast cancer. The dynamics of a market economy do mean that there are inequlaities in access to health treatments including cancer treatements. Also what gets researched is to an extent determined by who shouts loudest and by class.
Poor women and black women are less likely to get breast cancer than middle class white women but when they do their survival is statistically shorter. Why?
Just a thought.
Jane
Activism Hi Daphne,
This is extraordinary - I got diagnosed in April 2004 although they didn’t actually really finish with me until 2005 - I didn’t know about this site or the others you mention - (just had a look and tried to register with advocacy thingy) - and the tragedy is I consider myself a pretty switched on person. I got a couple of really unsupportive BCN’s too - and I could have really benefitted from this. I can only think I was searching all the foreign sites for basic and research info, didn’t both with the british sites as I must have assumed the BCN was representative of british attitudes and information giving …oops.
So thanks for the info really useful.
Cheers
Celeste
BCC campaigns Hi Daphne
I will pass the details of this thread to the campaigns team at Breast Cancer Care.
In the mean time (for those people who might not know) under the campaigning tab at the top of the page, there is quite a bit of information about the campaigns and research initiatives which are run within Breast Cancer Care. In this section there are forums where people can discuss the Breast Cancer Care campaigns and any problems they experience with treatment and improvements they would like to see.
Best wishes
BCC Host
Environmental Stuff Jane & I have different views on this, but it all makes for interesting debate. I don’t believe the pharmaceutical industry is conspiring to stop breast cancer prevention or a cure, but clearly it is not in their financial interest for breast cancer (or any other cancer to be prevented). That’s just a fact of life.
These quotes from WWF sum it up for me:
"In the last 50 years man has created around 80,000 new chemicals. They are in use all around us – in products ranging from pesticides to cosmetics and baby bottles to computers. Our 21st century society depends on them.
However, there is a high price to pay for some of them. During the manufacture and use of such products, chemicals are released into the environment. When released, they travel freely in the air, in rivers and the sea and are taken up by wildlife and humans through ingestion of food and water, inhalation or absorption through skin"
“The EU has admitted that 99 per cent of the volume of chemicals on the market are inadequately regulated. Of Europe’s highest volume chemicals, 21 per cent have no safety data publicly available, and 86 per cent have less data publicly available than the minimum amount required to make even a basic safety assessment.”
"Over sixty top independent scientists from across Europe, working in the field of hazardous man-made chemicals, have signed a WWF Declaration.
They say we should reduce our exposure to chemicals that disrupt hormones and very persistent and very bioaccumulative chemicals. They also say there should be requirement to substitute hazardous chemicals with safer alternatives when those alternatives exist."
The 60 scientists are named on the WWF website. I’m not aware of any other scientists that have come out and openly declared that any of this WWF information is factually incorrect, therefore, contrary to Jane, I am sceptical of experts who claim there is no link between environmental pollution and cancer. In fact, I’m not aware of any that do claim there is definitely no link, they seem to say studies performed so far do not show a link and imply that we shouldn’t worry about them, which seems pretty slippery and evasive to me. Better they just said they don’t know, that research to find out for sure is probably too complex and expensive (you can’t keep humans like lab rats and expose them to different chemicals over many years to see what happens) and that people need to make their own decisions about exposure to pollutants in the light of there being no agreement between scientists as to whether or not pollutants cause cancer and other diseases. But scientists won’t do that because governments, chemical producers and pharmaceutical companies would get in a flap about the effect such honesty might have on the Global Economy.
I suspect that we may be at the stage we were with the link between environmental pollution and global warming 10-15 years ago when only a handful of scientists accepted the connection. Now the majority do, and it’s actually progressed faster than they thought.
Whether it’s true or not that there may be a link between environmental pollution and cancer and other diseases, it’s still no reason not to support moves to clean up the environment and campaign for manufacturers to use safer chemicals.
I think the good thing about breast cancer activism is that it has room for various interests. Jane, you have raised awareness about triple negative in your campaigning, I’m asking questions about why prevention and possible links with environmental pollution are ignored and we both raised awareness with our MPs about HER2 testing and Herceptin availability in October. The important thing is that we are making our voices heard.
Celeste, glad to have been some help in making you aware of CAN. Like you, I was under the impression that all the activism was in the US.
Reply from BCC campaigns team Hi ,
We are always really pleased to hear about all the ways people with breast cancer are involved in campaigning for improvements in treatment and care. The Web team at Breast Cancer Care have highlighted your post to me as you are interested in the ways in which Breast Cancer Care involves people in campaigning and the work of the organisation . Breast Cancer Care campaigns on behalf of people affected by breast cancer to ensure the highest levels of treatment, care, information and support are available. Over the last few years we have been involved in campaigning on a variety of issues including access to breast care nurses, standards of care for younger women with breast cancer, radiotherapy delays and improving breast awareness among people from black and minority ethnic groups. We have also recently been involved in campaigning for access to Herceptin for women with early breast cancer , passing on the concerns of people who are experiencing difficulty accessing Herceptin to the health ministers in England, Scotland and Wales.
Breast Cancer Care has a campaigns panel made up of around 100 people with breast cancer who help shape our campaigning activities, members of the panel provide evidence for our campaigns by sharing their experiences, give suggestions for new campaigns and report on problems they have experienced. Members of the panel are also involved in writing to their local parliamentarians (MPs, MSPs or AMs) about our campaigns.
The campaigns team are currently working on two new key policy and campaign areas which you may be interested in . The first is a call for prescription charges for cancer drugs to be abolished, this campaign will be launched on 6 February at a Westminster event at which we are giving women with breast cancer the chance to meet their MP. For more information on this event visit the campaigning pages of this website and go to policy seminars. We are also working on setting up a Secondary Breast Cancer Taskforce to drive forward initiatives to improve the treatment, care and support of people with secondary breast cancer - information about this initiative will appear on the website shortly.
For more information on Breast Cancer Care’s campaigning activities or joining the campaign panel please visit the campaigning section of this website breastcancercare.org.uk/content.php?page_id=48 . Within this section there are also dedicated campaign forums where you can discuss improvements you would like to see in breast cancer care treatment and care.
We are also very pleased to say that Breast Cancer Care and Breakthrough CAN have very good working links - for example last year we carried out some joint work with patients around radiotherapy delays, producing a report ‘What breast cancer patients want from a World Class Radiotherapy Service’, which has been well received by radiotherapy departments across England.
Breast Cancer Care also involves people with breast cancer in the work of the organisation in a number of other ways. Most of our approximately 500 volunteers have been personally affected by breast cancer. They provide a variety of services to other people with breast cancer and to the general public. These include:
* Peer to Peer service which provide one to one support to people who are newly diagnosed with breast cancer
* Being part of our Outreach Team which involves giving talks in their local community and work places about breast awareness and what Breast Cancer Care does
* Supporting the delivery of Health Promotion events which provide information and support to people with breast cancer
For more information on becoming a volunteer please see the regional and national service section of the website. breastcancercare.org.uk/content.php?page_id=59
Media work: People with personal experience of breast cancer are crucial in communicating key messages about breast cancer in the media and we have a number of spokespeople who will speak about their experiences publicly . For more information on becoming a spokesperson please see the media centre section of the website
breastcancercare.org.uk/content.php?page_id=49
Relying as we do on such a large pool of volunteers also gives us a unique insight into issues that affect people with breast cancer. We also ensure that people with breast cancer are central to how we develop as an organisation.
We hope this has helped answer your questions.
Best wishes,
Anna
Anna Wood
Policy & Campaigns Manager