At least something at the Dallas meeting was older than me—the NHF! This is my 24th year of attending NHF meetings and I was thrilled to catch up with so many colleagues and friends.
|Kim C. and John Urgo |
of RUSH, with Zoraida
“Boots on the Ground” refers, I think, to our exceptional advocacy work, a history of which I liken to the Big Bang theory. At one time there was darkness out of which an explosion heard around the universe occurred, and new stars were born. The darkness, of course, was the HIV era, the “holocaust” in the words of many, when half our already small community was decimated by contaminants in the nation’s blood supply and blood-products used for clotting blood. The Big Bang was the outcry from patients, who formed groups like the Committee of Ten Thousand, and later Hemophilia Federation of America, to take on corporate America and the government of the United States itself. These people—Corey Dubin, Dana Kuhn, Tom Fahey, Val Bias and more—were our stars, emerging through that dark time. Many of our stars have burned out, passed away, but many still burn bright.
|Laurie Kelley with Texas hemophilia friends Andy Matthews|
and the famous Barry Haarde!
They’ve now harnessed all that energy, knowledge and power and shine it on industry and insurance companies, protecting our need for safe products, available products and access to all products. And with them are hundreds of families who have joined that cause.
To remind us all of where our advocacy comes from, NHF spotlighted Ryan White, one of our community’s first advocate, certainly our first child advocate. An Indiana native, Ryan won the right for all children to attend school who had hemophilia and AIDS; his mother Jean White was interviewed and I think we all had tears, when she teared up. There are not enough words to express how courageous that boy was.
NHF Chair Jorge de la Riva gave an impassioned speech that praised the efforts of all our community to stand up and protect our needs and rights. He also challenged us all to look deep within to ask What more can we do? Can I do? We can all do something.
NHF CEO Val Bias’ speech stood out for his challenge to include the fringe members of our community, especially women with bleeding disorders (who are really not just carriers), inhibitor families and those with rare bleeding disorders, like factor XIII. Indeed, he called out to those members to stand and be welcomed, and the audience exploded into applause when an entire row arose.
I would add to that the LGBT community, which has existed quietly. And yet they are some of our greatest activists. Don’t know what LGBT stands for? It’s time to look it up, and get to know them.
|Someone older than me? Joe Pugliese, |
my oldest friend in hemophilia
Pharmacokinetic testing was a hot topic: how does your child react to infused factor, especially if he is on prophy? Only one way to learn how quickly the factor fades over time from his body. Not every child can be prescribed a three-times-a-week, Monday/Wednesday/Friday prophy regimen. Running a blood test consecutively over a few days to test his levels will reveal how quickly factor is used up—in other words, what’s his unique half-life? This topic dovetails perfectly with the release of our one-time newsletter YOU, arriving in your mailbox soon! It’s all about your child or loved one with hemophilia’s unique needs, including his or her particular half-life, so vital to know.
One huge change I noticed? Years ago, specialty pharmacies and homecare companies dominated the exhibit hall floors, with stuffed bulls to ride and take a photo with) and even once a huge pirate ship (remember the pirate ship anyone?). These companies outdid each other in a bid to get potential consumers to their Vegas-style booths. Now, they have shrunken to little booths on the periphery, while the megabooths and choice space goes to pharma. Why? Specialty pharmacies have consolidated into a few monster, dominant entities. They don’t have to compete for business anymore; they own us. Pharma on the other hand, is competing fiercely for your attention with a glutted pipeline of products in clinical studies. Prepare for lots of pharma advertising in the new year.
Please go on line and read up on the three-day annual event, which brought treatment staff from HTCs, consumers, nonprofits, manufacturers and homecare companies all together for hours of learning and connection. Congratulations, NHF, on another successful year! Keep these boots on the ground, with sharp spurs.
More photos from the event to come!
Good Book I Just Read
How to Love [Kindle]
Thich Nhat Hanh
Short essays on the nature of love, peace and how to find these traits within so you can better encourage the transfer of these to others in need. Like all Hanh’s books, it is easy to read and leaves you feeling more tranquil and loving. Three/five stars.