Monday, May 14, 2012

Chasing Dreams, Part One: Washington, DC

So... the weekend. Everyone is asking me about my weekend. And I've been trying to articulate it, but I can't seem to do it justice. Doesn't mean I won't try though... this blog needs an update anyway.

I have just returned from a marathon four days on the road chasing dreams and seeing some come to fruition. It's a long story, so for today let's just start with Thursday and Friday. Here's what happened...

I got up at 5am on Thursday morning and headed to the train station - bound for Washington, DC. My goal was to visit Capitol Hill and lobby for the Tom Lantos Research and Education Act of 2011.

Take a minute (and two seconds) to view this video and see why it was so important for me to do this... (direct link:

So, I arrived in DC mid-afternoon and hopped a commuter rail to Silver Spring, MD to head to the Pulmonary Hypertension Association where I had a lot of fun seeing staff and holding a few planning meetings for the upcoming 10th Annual International PH Conference. Dinner with one wonderful staffer capped off the evening. If you haven't had a chance to meet some of the PHA staff, you really should. Quite simply, some of the most wonderful people I know.

Friday it was off to Capitol Hill. I met up with the lobbyist, Dane, who is working with PHA and we were headed to the office buildings of the House and Senate.

Outside Senator Blumenthal's Office
It was an interesting experience. We had appointments with two out of three of my representatives. Well, representatives for my representatives. They send their health guys to meet with constituents.

I told my story and Dane covered the legalities of what the bill entails. Everyone was very receptive and nice, but there is much follow-up to do. It's so incredibly easy to contact your representatives and ask them to co-sign this bill. Without co-signers, we don't have a bill. With enough co-signers we are practically guaranteed this bill. Please join us! Simply visit this link and use the directions and even a letter PHA has provided: HERE

We were there on official business and so it was very cool to see the underground transportation systems between the House and the Senate. My only gripe is that security took away my snacks! Apparently, you can't bring food or drink into the Congress building... nuts, seeds, and dried fruit are dangerous stuff (well, the nuts I guess can be, but really??). Oh well... it just made for one very hungry afternoon as there was still much to do that day!

Leaving Capitol Hill shortly before noon, it was back to Silver Spring via the train for probably one of the coolest experience of my life. Fellow PH patient, my good friend Joshua, was waiting for me. Joshua and is one of my closest PH friends and he is one of the people who gets me through. You need that when you're going through this.  It helps that we share a lot of other things in common (our obsession with research on PH, and more simple things... like fabulous food, and mutual childhood crushes on Donny Osmond!) And as I was to find out, we get along in person pretty well too. Actually, we squabble a bit, and he throws little pieces of paper at me and teases me relentlessly... it's kind of like having a brother around. He cracks me up, and I have immense respect for the way he has faced this disease.

 Anyway, we were to go visit United Therapeutics (UT), whose office buildings for their company Lung, LLC just happen to be just around the corner from PHA.

If you're not familiar with United Therapeutics, I suggest you become so. They are an amazing company. They make Remodulin in all its forms, as well as Adcirica, and these two drugs keep a lot of PH patients alive, myself and Joshua included. The company was founded by a woman named Martine Rothblatt. Her daughter has PH and in the early 1990s there were very limited treatments for the disease, and certainly not enough of them. United Therapeutics exists to meet the needs of rare lung diseases, and the research and medications they've come up with since have improved and saved so many lives. I love the history of the company - a mother changing the world for her daughter's condition, and helping so many others along the way.

So, we had this tour scheduled and we really didn't know what to expect.... maybe a walk through some cubicles and a meet and greet with a few staff or something? Oh no. Not at all.

What can I say... they rolled out the red carpet for us. We were met by Clare Miller, the Sales Training and Development Manager, and she introduced us to Patrick. Patrick is a Senior Vice President of Manufacturing with United Therapeutics. 

We got a behind the scenes tour on how Remodulin is made. From this white powder to IV, Sub-Q, or inhaled form (with pill forms and an implantable pump in the works!), this one little medication changed my life. "Little" is a ridiculous understatement, actually. The production, and the impact, is hardly "little". Revolutionary is more like it.

The production process is extremely complex, and the sterile environment it has to be produced in was amazing to see. We couldn't actually go in to any of the production rooms of course, but many had windows where we could peek in behind the scenes.

When you see what goes into this massive production for a drug that really serves a relatively small population, you begin to glimpse why it is so expensive to get and so highly regulated.

From the production tour we headed over to the new buildings - crazy cool place! They take such good care of their staff (light therapy rooms, Japanese tea room, hammocks, and all!). We sat down with Larry Sommerville, Senior VP of Sales and Marketing, and were also pleasantly surprised to be joined by Trish Dixon, Associate Director of Marketing. At this point I needed a Tyvaso break and as I took the nebulizer treatment, Trish walked by and saw it... she couldn't resist popping in and we're so glad she did!

Larry had prepared a series of slides for us, telling us all about United Therapeutics and the companies they hold. Each with a goal of a better today and tomorrow for patients with rare lung diseases. And then they peppered us with questions. What was it like to be a patient? What were our experiences? What did we want them to know? What did we wish could come next or be done differently? I think it's okay to speak for Joshua here and say we both felt immensely gratified at the personal interest they took in us, and in the way they listened.

Larry, Me, Trish, Joshua

From there it was lunch at 3pm (Finally! I was really missing that trail mix!) and back to PHA for phase two of our adventure... details to come soon.

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