Tag Archives: Advocacy

On being heard

In the comments following the previous blog my sweet friend Nancy expressed concern that perhaps the conference I just attended had been a waste of my precious time.

Nancy is correct about one thing–my time is very precious.

As for the conference, I was a panelist. However, my panel was the very last on the schedule. Those of you who attend conferences know that by the final slot, 30-50% of the attendees have slipped out the door, as most of them have flights to catch.

Somebody has to go last and I suppose it may as well be me. And there were patients scattered throughout other presentations. However, most of those patients had scant experience in clinical trials. You wouldn’t ask a podiatrist to serve on a panel specifically about cardiology, so why the more lax approach toward patient experts?

Sadly, I think this is because our position at these conferences is yet relatively token; that we are not actually recognized as experts.

I agreed to attend this conference as I viewed it as an opportunity to listen and learn. And I made absolutely sure that my (our) voice was heard, as there were ample opportunities to comment or ask questions.

Generally my viewpoint was rather contentious. The first time I went to the mic it was because a presenter was describing clinical trial participants as ‘heroes.’ I let him know how distasteful I found that word. Patronizing. Over the top in a ‘let’s just put ten gold stars at the top of the page’ sort of way. Trite, cheap, inaccurate. A wink, if you will. Even if it is well intended.

I didn’t choose this path, it chose me. And calling me a hero isn’t the sort of recognition I want. Give me something solid, like supportive services.

Another time a panel was addressing the issue of enrolling underrepresented populations in clinical trials. This is all good, I said. But make darn sure (see above) that you understand that clinical trials are time consuming, often require travel, and are more costly. That it’s important to make certain participation is sustainable. I was stopped by a gentleman later who asked if it was true that only drug was paid for in a clinical trial. In my case, yes.

And of course I expressed my frustration with the whole more is better data thing. I view the emphasis on returning data to patients as a bit of a smoke screen. ‘I am a data cow’ I said–my outlandish number of scans evidence.

I am undoubtedly the square peg at these meetings—but then again, I have been places that most will never go and I feel it is vitally important to share this experience. Gratifyingly, a number of people took me aside to thank me for speaking up and out. It felt good to have my viewpoint acknowledged.

Tomorrow I will be participating in another meeting, this one with the FDA. I think it could be interesting 😉

Media: getting your story out there

Screen Shot 2016-05-18 at 12.57.24 PMThe New York Times devoted their Magazine on Sunday to cancer and I was lucky enough to have my story included in the online version. This is the second time I have appeared in the New York Times and no, I don’t know anyone who works there. However, I am an avid Times reader and in both cases responded to a request for reader’s stories. Each time I got back to the editors shortly after the request was made (important) and had a striking, high resolution image to accompany my story. The clipping on the left is from 2010 and Sadie Dayton took the photo.

For Sunday’s version, which you can see here, I included a recent headshot taken by my friend Daniel Mathieu. And happily for Daniel and myself (and lung cancer, which is why I do this stuff in the first place) we got top billing.

Screen Shot 2016-05-17 at 9.38.51 AM

So my advice is to be on the lookout for opportunities to share your story with media and when they present themselves be ready (elevator speech and accompanying image) and don’t be shy. You might be just what they were looking for.

xo