NHF Annual Meeting 2015 by Donald Glascock, HFMD Board Secretary
I expected to learn some interesting facts and to meet some great people at the 2015 NHF Annual Meeting in Dallas this last August 13th-15th, but I didn’t expect to be surprised.
For example, when walking through the exhibit booths, I stopped at one booth that touted a new approach to prophylaxis and possibly to treating bleeding incidents, which made me smile. I’m fifty-two, and my blood stream wouldn’t recognize much change in the factor that I’ve been receiving since I was seven (though of course my liver does). But these folks talked about two boys with severe Factor VIII who have the bleeding characteristics of someone with mild Factor VIII, and analysis showed that these boys were both very low in a compound called Antithrombin, which goes around knocking down blood clots: because these boys had less of it, their low levels of Factor VIII were presumably pedaling in less of a headwind, so to speak. I think I actually said, “What? What are you saying?” If these folks can make their Antithrombin product work, then we might be able to inject miniscule doses into our muscles (as though we were getting a flu shot) instead of twenty to forty milliliters into our veins, without risking inhibitors. This technique could be helpful for VIII, IX, and perhaps other factors as well. The potential of this drug was covered favorably in the NHF “New Products” session, so we’ll have to watch for news on this front.
When Val Bias, who heads the NHF, asked the NHF chapters on Thursday morning to get behind his efforts to get 10,000 folks contributing to the anonymous “My Life, Our Future” genetic defects survey, I thought simply, “That’s nice. Gee, I think I already contributed, but I’ll ask our HFMD folks about stronger participation.” I did not yet realize the importance of Val’s requests, but on Saturday, in the Inhibitors session, the speakers reported some results from genetic defect surveys, and were able to assign a probability (probability, not foregone conclusion) that a given specific genetic defect in a given factor is likely to lead to an inhibitor. And how do we know which defect we have in our respective betroubled factor, you ask? Why, through the “My Life, Our Future” genetic survey, the speakers reported: our HTC can tell us these results, though the survey won’t know who we are. So of course I’m very interested in talking with my HTC, as you should be as well, if you have not yet contributed or don’t already know your odds.
I expected the Ethics session to discuss the role that we in the bleeding community each play in managing our risky behaviors. And indeed the topic did come up. Briefly. I did not expect an ethics issue regarding missing yearly physicals, which drew a fair amount of comment from both healthcare providers and from bleeders like me. The issue presented was that factor is legally a drug, and, like almost every other drug, cannot be prescribed for more than a year: providers are required to assess the state of the patient before a prescription can be renewed. I thought this topic was somewhat overblown, but then it was reported that some HTCs (none in Minnesota and the Dakotas, as far as I know) withhold factor if the patient hasn’t been seen within a year. I mentioned that my physicals haven’t turned up much new since about 1997, and that I have felt that I was somewhat wasting my HTC’s time by getting a yearly physical, but this session made me realize that the topic is more complex than I thought, and that I have a responsibility to my HTC that I did not appreciate. I don’t know the preferences and policies for physicals at each HTC served by HFMD, but I contacted mine and I’m slated for a physical in a few weeks.
[The chapter-related sessions on donor relations and on working with volunteers seemed, shall we say, somewhat dry on the surface. But they weren’t, to my great surprise. They both, in unique ways, pointed out that when you or I volunteer some time or donate some money, we want to know what our time or money will accomplish beforehand, and we want to know how the overall mission turned out afterwards. Both sessions offered lots of examples showing that the quality of the relationship between donor and the organization is the overwhelming factor that determines the likelihood of future donations of time or money.]
One of the sidebar events was the “Red Tie Challenge,” which was announced somewhat like the 1960’s “Stuckey’s” highway signs: “What is it? Come and see.” So I went to the “Dallas-4” conference room between sessions, and was asked if there were a person in the bleeding community whom I would like to honor on tape as I put on a red tie that they provided, and I thought of my mother’s father, Col. Ben T. Starkey, and said, “yes.” He had a very difficult turn-of-the-century childhood, made more complicated by Hemophilia-B and an abusive father who kicked him out of the house when we was about fourteen. When allowed, he enlisted in the Army Air Corps and flew hydrogen-filled balloons in front of enemy lines in World War I, and later flew biplanes, dirigibles, and many other aircraft. He educated himself, and worked his way up from a private to a bird colonel, commanding air force bases in democratic China during World War II and in the States beforehand and afterwards. For the bulk of his life, he did not know what had killed a few of his siblings, or why he struggled with his health. Many of us have a bleeding disorder running back a few generations, and I’ll bet that your family tree likewise has folks who met their challenges as best they could and in ways that inspire you like my grandfather does me.
I also attended several sessions geared toward us older Hemophiliacs, and they were great: both the older Hemophiliacs, and the sessions. There was a wrap session for us, in which we each asked the other bleeders there about topics that concern us most, and a session on retirement planning, which is a good challenge to have. And there was a session on health insurance for us older folks, as well, and a couple more, which I couldn’t attend. I was surprised at the breadth and thoroughness of topics offered for the folks old enough to remember seeing (and being somewhat excited by) the “in Color” tag at the beginning of the early “Brady Bunch” episodes.
And then there’s Carson Ouellette, who has been a member of HFMD’s board, and is firing up an NHF chapter local to the folks in North Dakota. Carson can seem like a quiet person who sticks to the sidelines, but I’ll bet I’m not the only person who has met him and quickly learns that his leadership skills will take him far. Carson was recognized first by Val Bias in one of our chapter sessions, and then formally in the awards luncheon on Saturday, for which he received the Meritorious Service in Honor of Ryan White award, which he received directly from Ryan’s mom. Ryan White died far too young of AIDS, and like Ricky Ray, had to endure the prejudices of fear that made his last years that much more complex. This award recognizes young people who, like Ryan, try to make a difference in the world through leadership that will benefit others in the bleeding community. Congratulations, Carson! We’re all proud of you and your accomplishments. We’re excited by the work you’re doing and wish you the best!
Next year’s 2016 NHF conference in Orlando will be unlike any ever before: for the first time ever, it will run alongside the yearly meeting for the World Federation of Hemophilia. There will be more folks gathered in one place regarding Hemophilia and bleeding disorders than ever before in the history of the world.
Here’s a final string of surprises: gene therapy is coming, but Prednisone may be needed to control the body’s reaction to it; Koate still exists (though Konine, my first product, is gone), and Koate has a sixteen-hour half-life; Pfizer’s factor-tracking app has an “activity” section that can read your Google Health data created by smart-watches and other devices; Carson can throw down on a dance floor like John Travolta; and lastly, there are many more topics to cover than will fit in this newsletter article. I suppose that’s the biggest surprise of all.
