Why Patient Advocacy Matters and Why You Should Participate If You Can

Since losing my first husband (Ahmad) to bladder cancer in 2014, I have gotten involved in patient advocacy related to bladder cancer. After he was diagnosed and during the course of his illness, I realized how little I know and how little most people knew about bladder cancer.

I had never heard of bladder cancer when he was diagnosed. We entered into the world of a disease and its treatments that we had no idea existed prior to that.

Bladder cancer research and funding

The key to developing new treatments for any cancer – for any disease – is research. And the key to research is funding. And funding is allocated when politicians and private philanthropists hear about an illness from those affected by it.

Immersed in the world of urologists and medical oncologists and CT scans, blood draws, and drugs with unpronounceable names, I felt I was in a parallel universe that only those who’ve also entered it can possibly understand it.

A lack of knowledge in the outside world

And the regular world – the world outside of that bladder cancer world – generally had no idea that it even existed. When the bladder cancer went from being the sort of “nuisance” cancer that it originally was to being “life-threatening,” I suddenly realized how crucial it was that wider world know of this disease and its impact.

When doctors told us of the metastatic disease, I was taken aback at the limited treatment options available. This was in 2013 – before the various immunotherapy drugs that are now available.

More hope and more options

I was further appalled to learn that there had been no new treatment options for bladder cancer since 1978. Thankfully, this changed in 2016 with the approval of several immunotherapy drugs. They still don’t work for everyone but they at least offer more hope and more options.

I thought often during Ahmad’s illness about breast cancer. I thought about how frequently we heard about it and the numerous appeals for fundraising. Every time I went to the drugstore, it seemed I was asked to donate money for breast or lung cancer. I kept wondering – why don’t we ever hear about bladder cancer?

Advocacy

Doctors told me that patients tended to be older on average and many times, they tended to be sicker. In short, they are not well situated to be advocates. I also realized, though, that until about the mid-2000s, there was not an advocacy organization for bladder cancer. This changed with the founding of the Bladder Cancer Advocacy Network (BCAN).

Founded by Diane Zipursky Quale and her husband John after he was diagnosed with bladder cancer, the nonprofit has spearheaded fundraising for bladder cancer research. John eventually died from his disease but Diane has carried on the mission and built BCAN into a well-respected advocacy organization. John and Diane were a patient and a caregiver just like many of us. And they were frustrated by the lack of information, the lack of treatments, and the lack of help for people facing this disease. And so, they did something about it.

Share your story

You don’t have to start a nonprofit to do something about it. But you do need to tell your story and share your challenges. When it is right for you, tell your friends and colleagues. Share how difficult it can be to face this disease. And tell your elected officials. When you are well enough, get involved with advocacy. Using your voice is the way to impact whether there are more treatments for bladder cancer.

Other people will know about bladder cancer – and be inspired to help cure it – only if we tell them about it.