By Dawn Mancuso, FASAE, CAE, HA CEO
Sometimes we all encounter frustration. We feel like we work and we work, but that things just don’t change as fast as we would like or need. At times like these, when my patience is wearing thin, I often look to those wiser than myself for inspiration and guidance. If you have ever read a book called The Tipping Point by Malcolm Gladwell, you know that his research shows that it takes 10,000 hours of practice to master a skill. That’s a lot of painstaking hours. The famous Greek writer, Aesop, also gives us a similar lesson in his fable, The Hare and the Tortoise, which most of us read as children. The approach is different from Mr. Gladwell’s, but the message is the same: perseverance is the most defining factor in success.
Perhaps the greatest inspiration to keep going appears when milestones are met along the path towards a big goal. You know, those “small wins” that reinforce you are on the right path, and that progress can be made with continued effort.
Well, I am happy to report that we’ve had two such events happen recently.
First, after much work on our part, we have received word from our friends on Capitol Hill, and have confirmed it with contacts within the National Institutes of Health (or NIH, the federally-funded medical research agency in the United States) that NIH will now be adding hydrocephalus as a new research category in the Research, Condition, and Disease Categorization (b) reports (which are published on NIH’s RePORT web site) for FY2012.
RCDC provides consistent and transparent information to the public about NIH-funded research, providing a complete list of all NIH-funded projects related to each category. By clicking on each of the categories, the public can access full project listings for that category and view, print, or download the detailed report. At present, hydrocephalus is not one of the conditions included in this report. So, this news means that the amount of money that NIH spends each year on hydrocephalus-related research, and the nature of the research projects being funded that deal with hydrocephalus, will now be reported to the public in a very transparent and easily traceable way starting in early 2013.
This doesn’t necessarily equate to more money going to hydrocephalus research – at least not yet – but it does mean that we can measure and track just how much is being spent.
Second, the United States Senate passed a bill on May 24th that could shorten the time frame for research-identified advances to become available as treatment options for patients. The Senate’s bill, S.3187, includes sections that allow the Food & Drug Administration (FDA) to accelerate the approval of certain drug therapies and medical devices. This bill was passed as part of a larger reauthorization bill addressing the portion of the FDA’s budget that covers the approval process for new drugs and devices. The House of Representatives still has to pass its bill on this subject before a final piece of legislation can go to the President for signature by the September 30 budget deadline. Despite the work still to come, this is yet another small example of progress for us and most patient advocacy groups.
We still have much to accomplish, but these two achievements point to the success we can realize when we all work together. You can be – and we need you to be — a part of this effort. If you haven’t already, please consider joining us for our Advocacy Day on Capitol Hill this coming June 28th. Collectively, we can motivate each other, educate our Congressional representatives, and look forward to the successes still to come!