I don't want today's post to sound like a post script, because it isn't. My post (see HERE) the other day was kind of an acknowledgement of something that had already been evolving over the past few years anyway. Let me be clear: I'm not discontinuing Scott's Web Log, but I am putting my efforts into my other blog which has a higher priority for me at the moment. I'll still return here when I have something relevant to say or share, or when I have news that someone else in the community hasn't already covered.
I seldom write about my personal life because my opinion is "it's personal, which means I don't necessarily want to share that with the rest of the world via the Internet!". I have made occasional exceptions, of course, but generally, my coverage has been on the business of diabetes (and what a damn big business it is!) or things going on from a regulatory or legislative perspective that are likely to impact people with diabetes.
However, as I noted, I no longer find the same sense of gratification and pleasure in writing about that several times a week as I once did. I have multiple reasons for that. First, industries, regardless of which types, tend to move in predictable ways. We've been hearing these promises and stories for decades now, but yet the only thing that seems to change is the costs for patients always seems to go up. Moore's Law may apply to computers, but doesn't seem to translate (yet) to CGMS, insulin pumps or even 30 year-old biotechnology like insulin!
My Early Realization of Patient Empowerment via Social Media
I can still recall that October morning back in 2007 when I tuned into Pfizer's earnings release and the company's CFO announced it was discontinuing sales of Exubera, the first legally-approved inhalable insulin (see my post HERE). Many on Wall Street were convinced that product was destined to become a $1+ billion blockbuster. Naturally, I shared that news (which many of us in the patient community had predicted, including myself, Amy Tenderich, Bernard Farrell, Jenny Ruhl, many parents on CWD and a number of others) with the diabetes online community, and it was truly amazing, because that news spread like wildfire. It was a real sense of empowement. No longer were we as patients subject to the editorial decisions of the news media who might cover it if they had interest or space to fill, nor did we have to wait for our medical professionals to share news of that. More recently, I also predicted (see HERE) the sale of Amylin Pharmaceuticals (which hasn't happened ... yet ... but the company HAS hired an investment bank to sell the firm to the highest bidder, so that seems very likely in the near future).
Sure, there can be revolutionary occurrences (major M&A activity, or executive changes at these companies, for example), but I think the lesson learned was that since most companies operating in the diabetes space are publicly-held companies, they're obliged to disclose things that "materially impact" their shareholders, including earnings statements which must be reported to the U.S. Securities and Exchange Commission (SEC) each and every quarter. That data is all in the public domain via the EDGAR [http://www.sec.gov/edgar.shtml] database, although most (including me) find it easier simply to turn to the companies' respective"Investor Relations" pages on their websites. Indeed, I like to think for people in the diabetes online community at least, I have succeeded in revealing this as one of the best sources for reliable information, which is revealed to investors, yet seldom noted in the advertisements for diabetes products and subject to the discretionary whims of the news editors of major media outlets. In fact, we can sometimes also learn about products the companies are developing (at least those the companies feel are in later-stage development), issues with regulators like the FDA, learn of the sales growth (or decline) for their products.
Anyway, I believe those early experiences have forever changed the way many people with diabetes gather information about what diabusiness is doing. And, company efforts to contain news aren't as easy as they were in the old days.
Second (I said there were multiple reasons!), while I believe we as a community can accomplish some great things when we work together, there are still some limits to what we can realistically accomplish. For example, I think we have started to sound our collective voice with the U.S. Food and Drug Administration, but on that front, there is still much work that remains. Some of that has little to do with things we can control or influence directly, but there's also a recent history among FDA reviewers that the agency's own concerns, and those of the industries the FDA regulates are really the only comments that matter. We as patient advocates still need to learn how to compose our comments in a format the FDA is used to following, instead of mainly personal blather about our (or our child's) long-term health. I HAVE found that following the format that pharma and medical device companies use, including citations from relevant medical journals can make for a compelling case. But that's something we all really need to get better at doing. However, I also think that "activist patient groups" are not going away, and I hope to use my role among the Diabetes Advocates to continue with this. Yes, this blog will be a part of that when those events come up. As I said, the sooner patient groups can learn to play the game by the FDA's vague formats, the sooner we as a group will become a force the FDA will regularly consider.
D.A. Process for Press Releases Provides Good Practice for FDA Issues Going Forward
Having put this in perspective, on a positive note, the D.A. group has started to make our voice heard via the newswires. We've done a few press releases so far this year, and we've developed a process to write those as a group, edit them and make sure the releases get picked up by the media. We've also tried some things as far as handling comments and inquiries, etc. which is still a bit of a work in progress. But I think we can be very proud of the effort we did on Diabetes and Mental Health Month back in May 2012 (see the press release at http://mwne.ws/MKrDqd or http://www.marketwire.com/press-release/diabetes-advocates-conclude-mental-health-awareness-month-increasing-awareness-about-1663874.htm). But, I think having a refined process in place to write press releases and/or respond to other items in the media is very powerful, and we're getting better at it.
In the future, we as a community can proactively coordinate campaigns or even respond to issues that are important to people with diabetes. The same learning process is something I'd like to see us do on FDA-related items, and I want to pursue this further. Perhaps we can have a similar committee process to address responses to FDA guidance, for example, with a team that discusses the concerns/issues, coordinates preparation of written comments that can be shared and ultimately, distribute those with a well-rehearsed process to really let regulators know we are a group that wants to be taken seriously. Beyond that, I even envision coordination among other patient groups to respond to issues like the FDA's draft guidance for biosimilar medicines. Just imagine how we might be able to respond with the diabetes community, as well as the rheumetoid arthritis, multiple sclerosis, IBD, Lupus and various other patient groups. The FDA has only seen a sampling of where things are going, but truthfully, they haven't seen anything, yet!!
In all, I would say I think the world of "empowered patients" is still very much in it's infancy. But, having said that, I think we're quick studies because we have personal motivation behind our involvement. I see great things ahead for us, and we've only started on this journey!