For over twenty years, I have worked in support of vibrant, effective pro-innovation policies. Like everyone else, I have had friends and family who suffered from medical diseases and conditions for which there were not cures.
My friend and mentor, Shawn Bentley, died from lung cancer, leaving a wife and two young daughters. My grandmother had Parkinson’s and suffered terribly from it. My grandfather had heart disease; he was one of the early bypass patients when the procedure was very new. It gave him many more years, but ultimately it took him.
None of that prepared me for my own daughter to be diagnosed with Ulcerative Colitis at the tender age of 9. It has been an up and down ride. It took months to diagnose her, and about a year to find a treatment that actually worked. That is, until it stopped working in June of this year. She was re-diagnosed with Crohn’s Disease and began taking a biologic called, “Remicade.” Its fewer pills to take, but it means she has to go for a 10-12 hour infusion process every other month…for the rest of her life. And I can’t even think about the potential side effects.
I am grateful that we live in a place where there are highly trained medical professionals to help her. And I am relieved we have health insurance, because both the Remicade and the charges for the infusions are expensive. Of course, as our doctor pointed out, there was a time when the Remicade didn’t exist. In that age, my daughter would be going in for surgery to remove the damaged parts of her intestines. So I’m incredibly grateful that the Remicade is there at all.
Most of all, I want a cure. All the existing treatments deal with the symptoms, but there is no cure. Some of the leading pharmaceutical companies are researching this, but there’s no reason we can’t add to that effort. That’s why my family supports the Crohn’s and Colitis Foundation and why we Take Steps for a cure, an annual fundraising walk. Our walk team page is here: http://online.ccfa.org/goto/NoVATeamRachel. I would be very grateful for any support you can provide. Thank you.
I recently published a blog in The Hill, discussing the lessons about Internet policy we should take away from the events surrounding the Sony hack. You can find it here. I asked the editors to include the following at the bottom of the article:
“Steven Tepp is President & CEO of Sentinel Worldwide, where he counsels businesses and organizations on the protection of intellectual property, including, previously, the MPAA. He is also a Professorial Lecturer in Law at George Washington University Law School.”
They didn’t take it, but I am noting it here.
I participated in the U.S. Patent and Trademark Office’s Roundtable discussions (no, none of the tables were actually round). In Nashville, on May 21, I spoke on proposals for a “digital first sale doctrine,” or more precisely, proposals to allow a forward-and-delete model and on statutory damages. The videos can be found here (about 3/4s of the way down the page)
In Los Angeles, on July 29, I spoke on forward and delete: webcast link here (afternoon session)
And in Berkeley, on July 30, I spoke on statutory damages: webcast link here (top video)