Sunday, April 21, 2013


I travel a lot. Like, a lot-a lot.

Sometimes, it gets pretty tiring. But then the following happens, and I remember why I keep leaving home for days at a time, juggling childcare, forgoing sleep, and being very grateful for one supportive husband!

These past few weeks the PH community has gotten a double dose of excellent news.

First, the PHA Specialty Pharmacy Advisory Board is about to launch and if you missed it, you can read about that HERE.

As an extension of that, I was just at PHA headquarters in Silver Spring, MD a few weeks ago to meet with one of the specialty pharmacies about their protocols. Long story short, one big giant specialty pharmacy merged with another big giant specialty pharmacy (or to be more specific, their respective parent companies merged) and the result has been... well, one big giant mess for several patients. After a particularly messy January, we called these folks in to PHA to talk to us about their merger plans, and to go over concerns, and to seek resolution.

I came away feeling pretty good. We got some answers. There were some answers we didn't get too - although I suppose that is to be expected. What I do know is that many of the individuals "on the ground" in these companies do have our best interest at heart. And changes are going to be made for the better. We need to hear about those good folks too, by the way. I really believe improvement is best made when you build on strengths.

What I got most from these events is a sense of feeling empowered. See, we are "just the patients" and it can feel like the big giant pharmacies and insurance companies have all the power. But that isn't entirely true. We are still in fact the customers. And since we are the kind of customers who can get all pesky critically ill when our meds are screwed with, we have some extra clout. So I feel empowered, because after a couple of years of speaking up on my own, and this past year speaking up with PHA in full force next to me - we have REALLY TRULY made a difference.  The specialty pharmacies are listening and vowing change for the better.  I believe they will. And we are going to make sure that keeps happening.

Secondly, this past fall I had traveled to Silver Spring, MD again to visit with the FDA during open commentary on a patient-focused drug development initiative. Long story short, we were amongst what turned out to be 90 disease states each advocating for the FDA to choose us as one of the just 20 they would study in detail for the next few years.

We got it.

Pulmonary Hypertension has been chosen. This is huge! Anything we can do to raise awareness is a good thing. Anything we can do on the national stage is even better!

You can read more details on Rino's blog HERE

These are awesome steps in the right direction as we work towards awareness and ultimately a cure. But the fight is far far from over. I fully expect to be on a plane again in the near future, or perhaps writing one of my rather strongly worded letters that apparently I am getting known for (blush)... Well, fine, whatever. If the fight is there, I still believe that those of us hoping for a cure have no right to hope unless we all take the front lines in our own way. It doesn't have to be policy changing or on the national stage. Far from it. But I will say this again and again - everyone has their story, everyone has their gifts, and that is what we all need to be using to move us forward. Right now I feel like I'm getting a happy ending to some of that effort - but there is still much to come.

Let's get this thing done.