I hope that all disease organizations will try be as useful as those you point out, but it’s simply not the case for many – and I think the response I have gotten to this post (here and elsewhere) shows just how frustrated patients are with these organizations.

Breast Cancer was not the first disease that was objectified for the purpose of raising research funds. Probably it was the March of Dimes campaign to prevent and treat polio, way back in the 40s. You may remember the subsequent slogan from the seventies, when the last of the US born polio patients came of age: You gave us your dimes, now we want our rights!

And then, of course, there is Jerry Lewis and Muscular Dystrophy; Easter Seals and neuromotor disorders. The campaign may be about the cure, but there is plenty of family support and information in the mix as well. I know this from 40 years of working with families who actually needed help, and got it, day by day.

Where breast cancer is concerned, my grandmother died from it, before she was 60, and after she was carved away, bit by bit, with the only cure they tried – serial surgeries.

Later when my mother was diagnosed with BC, she was treated with state of the art, research based care, and survived ten years, before she died of something else. This happened even though she lived in Podunk Wyoming, where Cancer Specialists go only on vacation. The research and dissemination networks that were built with pink ribbon campaigns certainly did make a difference.

More important, there are always support groups, online and in town, for most people who have any kind of serious or chronic illness these days. Know what most people complain about? The high cost of treatment, and the things that don’t work. Most so called Disease Organizations have websites, magazines, and other media that focus heavily on patient support and information for better living. You just have to go sit in a circle and talk to regular folks, or spend some time on line to get the benefit.

So please, don’t slam organizations that do many things to help people who don’t live in urban areas, or talk with medical colleagues every day. Some are misguided to be sure, but there are dozens of stories of gains that have been made by grassroots groups that mobilized energy to get something done. For example:

Special education was energized by parents who insisted that their damaged children could actually learn; before that it was just a hopeless medical condition.

Children with Down Syndrome began to live better lives when parents and organizations stopped listening to docs who told parents to just let the kids die, or put them in institutions.

Autism research has dramatically increased the attention that condition receives.

The National Association on Mental Illness teachers thousands of family members and people with brain disorders how to live respectable and acceptable lives, despite their need for medication and therapy, and also reviews the “me too” drugs that come out with big price tags, but without moving the research forward.

If the association you need isn’t doing the job for you, why not lend a hand and start something to meet your needs, and those of others? There is always so much to be done, and the people who do the work, find the best cure of all.

There is also much that we can do to help to set things right, which of course starts with raising awareness of what is really going on. As someone who happens to be a community organization specialist who was diagnosed in ‘96 with a very aggressive type of non-Hodgkin’s lymphoma which did not respond to standard treatments, and for which I later was able to have a bone marrow transplant, I can share some ideas. We all need to speak up!

As background, I often refer people to an 2005 editorial published in the Washington Post entitled “Too Much Research?” See:
http://www.washingtonpost.com/wp-dyn/content/article/2005/07/16/AR2005071600941.html

One of the reasons we do not hear the major health & patient groups calling out for something to be done about the exorbitant, and ever-increasing price of medicines ( and not always new medicines, either) is that most of these groups get funding from, or even are created by, pharmaceutical companies. Just as with medical groups and individual doctors, this has alas become the norm. The old don’t bite the hand that feeds you phenomenon. People also may feel show, there’s nothing we can do, but we don’t have to settle for the status quo. For starters, there is power in numbers, and our representatives in Congress need to hear from us.

So what can be done? Here are some ideas on specific ways you can get involved:

1) get on board with advocacy efforts being led by Essential Action in support of the HR 1427/ S 726, the Promoting Innovation and Access to Life-Saving Medicine Act. Personal stories of patients who who are , or have been , directly affected by the ever-escalating, extraordinarily high prices of prescription medicines are needed. More info can be found on EA’s website, at the Access to Medicines project page
http://www.essentialaction.org/access/

2) You may be aware that a bill called the Sunshine Act has been introduced in Congress, which would require disclosure of industry payments to physicians and to the institution where they work. Why not suggest that there be legislation to require that payments to health organizations & to patient groups too? Might be an amendment to the Sunshine Act, or a separate bill related to requiring disclsoureof charitable donations ( both amount and source), as is done done in the UK.
For more about the Sunshine Act, see: website of the Prescription Project
http://www.prescriptionproject.org.

Best regards to all,

Joana Ramos
Cancer Resources & Advocacy
http://ramoslink.info/
http://www.bmtbasics.org
http://www.healthyskepticism.org

For a good read, I highly recommend Samantha King’s book, Pink Ribbons, Inc. Breast Cancer and the Politics of Philanthrophy — that’s most everything in a well-researched nutshell.

This is something I’ve written about and thought about a lot–and I need to write more. For now, I’ll link to your post from my blog.

Thanks,

Jeanne

Thank you for such insight into this subject that few dare to talk about in public forum.

Anne
PS. I’ll be back often.

Katherine, Nathania – I agree that local orgs., especially support groups, can be invaluable. Unfortunately, most disease charities do very little at the local/support level.

Scottg – I think your experience is all too typical of the lack of local concern and support by many charities. I’m sorry – that must have been incredibly frustrating. By the way, where on Colon Club did you find my post?

But they’re also volunteer-run. Quite different from the posh positions of the more familiar disease advocacy organizations.