Speaking at an FDA Public Meeting on Chronic Pain

Speaking at an FDA Public Meeting on Chronic Pain

“This week I flew out to Baltimore (from Seattle! Looong flight!) to attend a public meeting at FDA headquarters in Silver Spring. They held a public meeting to hear directly from chronic pain patients from all over the country about their symptoms, severity, barriers to care, and well – opioids and other alternatives for pain relief. There were about 250 people in attendance consisting of chronic pain patients, caregivers, advocates, some industry, researchers, and FDA staffers.

In advance of this meeting I’d submitted a request to be panelist at this meeting. We weren’t told how many panelists there would be, or what criteria they would use to select them. One week before, I was notified that I was one of 8 people selected to be on a panel and that I would have 3 minutes to present my narrative to the FDA panel and the audience.

The morning panel was about symptoms, severity, and the impact to one’s life, family, and livelihood. The afternoon panel was about treatment options tried and failed and the effectiveness of pain management. I spoke on the afternoon panel. I was asked to submit a draft of my remarks in advance – I’d been chosen because my submission effectively represented the views and experiences of many applicants, or so I was told – and my FDA contact wanted to ensure that my remarks touched on the majority of the points I’d submitted. Which was fine. (Confidentially? I held back some of my time to say a few things – and to request a few things of the FDA – which desperately needed to be said).

Below is a link to an unofficial video of my full speech (on YouTube) and a written transcript of what I said. When I noticed that the truly EXCELLENT morning panelists were not each halted at the 3 minute mark I presumed that I had some flexibility on time, so I added some extemporaneous comments to my prepared remarks. Some of these comments got the biggest response from my fellow chronic pain patients in the room. These are MY PEOPLE, and we are sharing the same pain and fears.

Much to my surprise I heard from NBC News that evening asking for a hi-res image of me to use in an article, to accompany some quotes from me during the day. In a national story. Ahem. So I guess my name and face are OUT THERE now.”

You can read the full transcript of Rose’s remarks at the FDA public meeting on July 9, 2018. A YouTube video of her speech can also be found here.