Empowered by hope: A PHA Diary

Roice Fulton is a young PHA staff member who attended PHA’s Nov. 18 Congressional Luncheon. With his permission, I’m sharing the note he wrote to his parents the following day. I think it offers a fresh look at a great American tradition.

So let me tell you how my day went yesterday.

Every year, we organize a Congressional Luncheon where we invite folks on Capitol Hill to sit and eat while listening to doctors, patients and our president talk about the disease, with the objective of garnering congressional support for our bill. Among other things, the bill requests $15 million over three years to go to governmental agencies to promote research and awareness of pulmonary hypertension. We have our patients ride out to the Hill, attend and speak at the lunch, and afterward we group up and go meet House reps to talk one-on-one about the disease and lobby for the bill.

Our “435 Campaign” aims to secure support for our bill from all 435 members of the House (I believe currently we’re at a little over 200). Getting widespread support from the other half of Congress, the Senate, is a bit tougher, there being only two for each state receiving pleas to support every cause imaginable—but I’ll get to that.

This year, the lunch was held in the Library of Congress, in a gorgeous room that we filled with patients and caregivers. We had a great turnout of Congressional staff, who listened to the stories of a doctor (Dr. Paul Hassoun of Johns Hopkins), a patient (Jeanette Morill), a caregiver (Pam Peterson), a congressman (Rep. Kevin Brady of Texas, a staunch supporter of our cause), and the widow of a leading member of the House of Representatives (Tom Lantos, a major figure in the fight for PH). The event was successful in opening more than a few people’s eyes about the disease.

After the lunch, there were a number of one-on-one visits, all with House of Representatives members and staff; these went very smoothly. House visits are pretty straightforward and rapid-fire: you go to the representative’s office, meet either with the Congress Member or his or her health policy assistant, present your case, ask for co-sponsorship of your bill, and he or she says yes/no/we’ll get back to you. More often than not, these meetings yield good results, probably because our case is clear and strong and House Members are responsive to their constituents.

I was originally assigned as support staff for one of the House lobby groups. However, a coworker asked to be included in a group, and so I took on a role of event janitor. I was fine with that, being happy to simply be a part of the day. Despite the custodial assignment, I still decided to wear my nice suit…you know, just in case.


After helping clean up the lunchroom, I started chatting with a coworker, Jess, who mentioned that she had attended a meeting I was unaware of. She told me that before the luncheon, Colleen Connor, a Pennsylvania patient and her family met with one of their state’s senators, Bob Casey, who indicated support for our bill.

To show just how much support, while writing this email today, I got the following message from our director of advocacy:

Gavin [our lobbyist] writes to say that Sen. Casey's staff intends to drop our bill in the Senate today. With luck, I'll have a bill number to announce at the staff meeting tomorrow.

I don't think there's anything I could say that would make a more eloquent "thank you" for each of your contributions to yesterday's event. We just never know when and how our work will pay off...

Jess told me the meeting went so well that Colleen called her doctor in Philadelphia, Darren Taichman—who I had met during PHA’s September PH Resource Network Symposium. Upon hearing the good news, Dr. Taichman said he’d hop on the next train to DC from Philly to be there that afternoon. I was curious why he was taking the time to come down, as the meeting and luncheon had already ended.

I soon found out that he was coming to support a second meeting, to be held at 4pm with the senior Pennsylvania senator, Arlen Specter.


Jess was telling me all this because she was looking for a photographer. I mentioned offhand that I had a camera.

The patient, her supporters, Dr. Taichman, Jess and myself headed for the Senate offices, winding up in Sen. Specter’s conference room. I wasn’t feeling particularly nervous, since I was pretty much along for the ride. All I had to do was ask for a couple of photos, and I was done…no sweat. But a few minutes after we settled down, a staffer ran in saying that all the Senators were just called over to the Capitol Building, and that if we want to meet with Sen. Specter, we’ll have to go and see him out by the Senate floor.


We were each given clearance badges and shepherded down to the basement of the Senate building, where we were told to take the connecting subway to the Capitol building.

Sen. Specter came off the floor and Colleen, surrounded by a dozen people standing in the corner of a noisy room, spent a few minutes with him talking about the disease. Colleen is impressive and after the conversation, Sen. Specter said that he would take a hard look at the bill.

Through all the walking and talking, Jess and I would occasionally look at each other wondering how in the world we became involved in all this. Neither of us play a significant part in PHA’s Congress initiatives in our work. However, it was clear to us that a great deal of progress had been made with these senators yesterday, and we were both able to personally testify to that. Though I began the day a janitor, I shook hands with a senator, and played witness to one of the day’s most remarkable events.


Glad I wore my nice suit.