Welcome to PH Awareness Month!

Thanks go this week to Katie Kroner, PHA’s Director of Advocacy and Awareness. Katie has been with PHA for nine years and helped organize a great many Awareness Months. In her guest blog, Katie introduces PH Awareness Month 2014 and gives you links to easy things you can do to make a big difference.

By the way, I do intend to get back to writing my blog again as soon as I can find time. The past five days have been a pretty good example of what’s been keeping me busy beyond the normal workload. Thursday was a stop in Denver where Dr. Dave Badesch was inducted into the Colorado Pulmonary Hall of Fame. Dr. Badesch has been a backbone in PHA’s development of a strong medical community. Friday to Fresno, Calif., where I was hosted by Perry Mamagonian and Dr. Vijay Balasubramanian. I was there for the 3rd Annual Fresno Six-Minute Marathon and Fun Walk on Saturday and got to see many old friends and make many new ones. Saturday evening on to Austin, Texas, for the American College of Chest Physicians (CHEST) Conference where I had many side meetings. After an eye-opening 5 a.m. CTEPH session on Monday (and a few following meetings), I flew back to Maryland to get back to my desk on Tuesday morning. Travel will slow after Dec. 15, and I look forward to being more active with my blog again.

Rino

Welcome to PH Awareness Month!
Don’t Miss Two Big Opportunities on Nov. 1

Pulmonary Hypertension Awareness Month kicks off this Saturday, Nov. 1, with two not-to-miss opportunities.

1. Join Color the World Periwinkle Day. On Nov. 1, wear periwinkle and take a photo. Hand out wallet cards. Share with your online networks. Your imagination is the limit!
2. RSVP by Nov. 1 for PHA’s Congressional Luncheon and National Advocacy Day. This free event gives you the opportunity to have your voice heard by your Members of Congress and their staff. Even if you can’t attend, get involved by inviting your Members of Congress or their staff to the Luncheon (and following up to see what that person thought and will do).

Lighting the Way to a Better Tomorrow

This year’s Awareness Month theme is Lighting the Way to a Better Tomorrow. Too often, a pulmonary hypertension diagnosis feels like being shoved into a dark corner. Who can see that you are sick? Who understands what you’re going through?

Each time one person tells another about PH, they dispel a little of that darkness. Whether you are sharing your diagnosis story with a reporter, advocating before your Members of Congress, fighting back through fundraising or talking about PH with a neighbor, you are a light for a PH patient. Together, we are Lighting the Way to a Better Tomorrow.

You are Our Hero

If you read this blog regularly, you know that Rino often shares the stories of PH heroes – everyday people who are changing the course of pulmonary hypertension by ending isolation, inspiring others and proving that “hope is a verb.”

What you’ll discover during Awareness Month is that you are one of those heroes. Whether you are sharing your story by pitching it to the media, creating a personal fundraising page or posting a photo of your clot during CTEPH Awareness Day on Nov. 18, you are part of making life better for PH patients everywhere. And that’s something big.

Don’t forget to send us your awareness month stories, photos and videos so that we can share them with the entire PH community.

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.

Persistence...

What's the old saying?  If the mountain won't come to Mohammed, Mohammed will come to the mountain...

When staff members for both North Carolina Senators - Kay Hagan and  Richard Burr  - said a meeeting with the Senators in the state would be impossible,  North Carolina residents and PH support group members Diane Ramirez, Janet Cecil and Cindy Pickles decided to come to Washington, D.C.

They found out that, starting May of this year, Senator Hagan hosts a Thursday Carolina Coffee hour once a week for her constituents...and last Thursday they were there.  With only one other constituent in the room they had plenty of time to make the Senator aware of the Pulmonary Hypertension and Awareness Act of 2009 from the perspective of 3 PH patients.

After that, they spoke to Senator Burr's staff and then completed the goal that brought them to town. As Diane tells it,

"Our goal has been to meet every member of the House and Senate from North Carolina and tell them about House Bill 1030 - the PH Research and Education Act.  We met that goal on Thursday and now we're following up."

So how are they doing?

Well, after their visits, they came to the PHA Board meeting (Cindy is a member) and briefed us.  That's Diane in the picture.

Then, this morning - a week later - I saw that Representative Patrick McHenry had signed on as a co-sponsor.  I then checked the full list and saw that so have Reps. Jones, Price and Coble.  That's 4 North Carolina Members out of 13...so far!

Can people make a difference.  You bet we can and the ladies from North Carolina are proving it.   And so are many others.  Our bill now has 30 co-sponsors - and growing.

Diane went on to tell the PHA Board that,

"Cindy is our support group leader and awhile backshe asked me to help out with advocacy.  I hesitated.  I didn't know what I was doing but I learned.  Now, I'm hooked.  I know we're making a difference."

For more on how you can get involved in making a difference through public adocacy, visit PHA's Advocacy Center.