Monday, September 03, 2007

An Unwanted Journey: Day 0646 - The Need for Advocacy Groups

I envy the work of the Lance Armstrong Foundation in the United States, especially the work the LAF does in lobbying federal politicians about the fight against cancer and the needs of cancer survivors (see the LIVESTRONG Presidential Cancer Forum as one example of the lobbying efforts).

Advocacy by the LAF is all about saving lives. And it's about visibility and holding politicians accountable for both policies and practice.

We have advocacy groups in Canada as well, just nothing as publicly visible as the LAF. We have, for instance, the Cancer Advocacy Coalition whose work is mainly about publishing assessments of the cancer system in Canada. Maybe it's just me, but as a cancer survivor I think we need something more like the LAF here, with rallies, political forums and other advocacy events; and the organization should be controlled by cancer patients and survivors first and foremost, not practitioners in the health system, nor necessarily funded by pharmaceutical and other medical for-profit companies (see the list of sponsors/partners for the Cancer Advocacy Coalition). True patient and survival advocacy also cannot be handed over to government funded agencies like Cancer Care Ontario.

Advocacy is about "getting the face" of those with power and influence, not those beholden to people holding the purse strings. It's about public image and branding. Here's one example.

Over 65 million of us now sport the yellow LIVESTRONG arm bands worldwide. I can't say how many of us in Canada wear the arm bands, but if you walk into our home, you'll see at least a couple of us wearing the arm band 24 hours a day and the rest wearing them occasionally. In fact, we even have a supply of the arm bands available should one snap from over use.

The arm bands are a generic and highly visible statement of advocacy and the personal impact of cancer on our lives. The Colorectal Cancer Association of Canada has a lapel pin that does something similar for those of us affected by colorectal cancer. But we still need a patient/survivor-driven advocacy organization in Canada similar to the LAF in the United States.

The LAF has no plans to establish a Canadian organizational equivalent, but who knows, if enough of us lobby the LAF, we just might be able to change their minds.

Imagine that we had an LAF Canada advocacy group ready and waiting for this year's Ontario provincial election campaign. One thing we could do is petition each and every candidate about the appalling lack of PET scans in the province (see the excellent article in the Ottawa Citizen - 'Draconian' policy stymies cancer patient by Joanne Laucius). This kind of advocacy doesn't just happen without patient pressure, without getting the attention of policy makers by making it an election issue.

It high time we had our own LAF Canada.

1 comment:

Sandi Pniauskas said...

Don, thanks for the comments on your blog and I agree. My sister died of rectal cancer and I know so many cancer survivours whose families are rife with cancer. My greatgrandmother died of colorectal and endometrial cancers, so there is a genetic component which links us. For several years now I have been working on a project which attempts to bring the patients' voice to the community, an open public forum. If you have time to look at the blog, you will see our first attempts. I wish you the very best with your survivorship and efforts.