Tuesday, November 24, 2009

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.

Score one for the little guy...

Lately, we've been used to seeing stories about various countries where governments have been trying to save money by reducing the availability of PH treatments.  Usually, the PH associations in those countries have fought back, often successfully.

This morning I saw a real eye-opener...

The Bulgaria Commission for Protection against Discrimination has imposed a BGN 250 fine on former Health Minister Evgeni Zhelev for failing to make treatments available to 30 idiopathic PAH patients.  My handy Google currency calculater tells me that's only $190 but it is a powerful message to his successors.  It is also a testament to the work of the Bulgarian rare disease groups that lodged the complaint.


For more on this story read the article
For more on the work of PHA's international partners, visit our site.

Tuesday, November 17, 2009

Thanks Debbie...and Charlotte and Robert and Jeanette, Dave & Lisa

On Friday, I was flying back from my second trip to California in two weeks.  I missed our Friday staff meeting and Debbie missed commenting during the Testimonials agenda item that opens all our meetings.  The note she sent to all our staff becomes today's blog.

Here at PHA we hear about and see so much that people do in the fight against PH.  The items Debbie told us about in her note offer a recent snapshot of the activity that inspires our work.

Thanks Debbie. I'm glad to share your post...

When it came to testimonials and memorials today, I was quiet (for once!) I’ve been so caught up with web work, that I completely forgot about these amazing stories!

I wrote them up, apologies for typos. And ENJOY!

- Debbie


[starting up the Puyallup Support Group,] was a rocky start Debbie, and all in all, it’s been a great and very productive year. I’ve learned a lot about who I am as I live with PH, and that I can still do what I love to do…be a leader, a teacher, and promote health and wellness. Thank you and Deb Martin for asking me to do this. I said ‘yes’, and got my life back. Bless you both.

--Charlotte McCabe, Puyallup Leader

Robert Ngo Educates 100 pre-med students

PH patient, Robert Ngo graduated at Western University of Health Sciences in Southern California and became a pharmacist but went “back to school” for Awareness Month! On November 16, he’s promoting PH medical education as a special guest lecturer for a lunchtime series drawing 100 future health care providers at his alma matter.

In addition, Robert is inspiring to other patients as he is an avid SCUBA diver, marathoner and overall athlete. In spite his PH, he is able to participate in the “IronMan 70.3” in Orlando, Florida on May of 2010!

If you didn’t know, an Ironman Triathlon is one of a series of long-distance triathlon races consisting of a 2.4 miles swim, a 112 miles bike ride, and a marathon (26 mile run) raced in that order and without a break…


Every EMS technician and first responder in the state of Maine knows about PH!

…well those who read the “Journal of Maine EMS”… thanks to a patient advocates and caregivers. Jeanette Morrill and husband caregiver Dave, worked with writers of the Journal to get PH medical information published in this quarterly newsletter distributed to the Maine Emergency Nurses Association, the Regional EMS Councils, Maine Chapter of the American College of Emergency Physicians, Maine Committee on Trauma, Maine Ambulance Association and Maine EMS, and virtually to all EMS personnel in the state.

According to Jeanette, EMTs in the state are most likely to read and study the journal because they can get recertification credits. She believes that the main reason the EMS journal published their story was because of PH caregiver and advocate Lisa Sessions, who secured a PH Awareness Month proclamation by the Governor of Maine.

Cheers to Jeanette, Dave, Lisa and for PHA Medical Services and Advocacy and Awareness for this victory.

Here are the PHA resources of which the journal writers utilized, in writing their article:


• Pulmonary Hypertension Awareness Month Proclamation, John E. Baldacci, Governor, State of Maine, July 9,2009 .

• Emergency 101 Information for Emergency Medical Providers, Pulmonary Hypertension Association.

• Pulmonary Hypertension, A Patient's Survival Guide, 3rd edition, Gail Boyer Hayes, Pulmonary Hypertension Association, 2004.

• Pulmonary Hypertension Association website: wwwPHAssociation.org

Sunday, November 15, 2009

Visiting friends...

Steve White is a PHA board member. He"s also an Episcopal priest just back from a trip to Israel.  Here's part of his note on his visit with our friends from PHA Israel.  I think it gives a great view of the importance of international connections.

For more on Steve's connection to PH visit his Virtual Birthday site.

As you know, I met with some of the leaders of PHA-Israel in Tel Aviv this past Wednesday. At the dinner meeting were: Aryeh Cooperman (PHA-Israel C.E.O.), Rochi Cooperman (patient), Miriam Don (patient), Joni Berg (president of PHA-Israel).

Here is a report of that meeting from my notes.

I got to the restaurant earlier than the others. The first to arrive was Miriam Don a New Zealander and a widow who was diagnosed in the U.K. about 3 years ago. She moved permanently to Israel about a year ago. She was active in the PHA in the U.K. and while there developed a celebrity cookbook for patients titled “Miriam’s Marvels”. She was able to get celebrity chefs and some members of royalty to give her recipes without salt and that are simple to fix to make the task of cooking easier for PH patients. The book is distributed by PHA-UK and Miriam would like it to be distributed more widely. If we don’t have anything like this in the USA, we might see about reproducing it here. Of course the measurements would have to be converted from metric.

Aryeh and Rochi Cooperman arrived with Joni Berg. Aryeh was born in Ireland but grew up in Israel. Rochi is a sabra (a native-born Israeli). They have four children. Joni Berg is a native South African and a lawyer who works for the Ministry of Health in Jerusalem. His wife is a PH patient and they have 2 children.

Since Aryeh came on board as the C.E.O. on a part time basis (he is also a teacher) the organization has become more productive with materials to help patients and families. They have had several social events that have built the community and have helped raise money.

Aryeh showed me a video they produced (in Hebrew with English subtitles) and gave me copies of the DVD. It is alsoon YouTube, titled Israeli Association for PH. He also showed me a DVD on living with Flolan which is designed to make patients feel hopeful and positive. The group has also worked on excellent print media and is designing a new web site which should be up soon. I will send all the materials he gave me to Christine.

Joni Berg told me how they have been successful in getting medications and services needed by PH patients included in the so-called “basket of health services” provided to each Israeli by the government.

Some of other issues we discussed:

Recruiting new patients to the organization – I suggested getting pharma companies to allow them to place a PHA brochure in shipments of meds to patients. They had not thought of this idea and said they would try it. If we have other ideas, they would like to hear them.

There is a great need for portable oxygen concentrators that could be loaned out to patients who are housebound and need to make medical appointments or even go on holiday. The units cost about $5,000 each and Aryeh said they would like to have 2 or 3 on hand.

They need a list of medications that PH patients cannot take due to drug interactions. Do we have such a list?

Everyone expressed an interest in getting more doctors involved in PHA-Israel. Any help we can give them on how to get referrals to PHA from doctors and how to involve doctors in the organization would be helpful to them.

They would like to know the conditions under which they might be able to use content from our print media and web site for use in Israel. They are especially interested in translating the Patient’s Handbook into Hebrew. Perhaps Christine could clarify this for them. They do not get Pathlight and we might consider sending copies to our international partners.

A major challenge for them concerns how to get support groups to meet since they have so few patients spread all over the country. Until they have enough patients to establish local support groups, patients have to travel long distances at great expense and funding is needed for this.

I encouraged them to come to Conference in California. Joni was in Houston last year and attested to how helpful Conference can be for patients and caregivers. However, the long flight will require oxygen for patients who have trouble breathing.

I had a real sense that these five people regard their efforts as part of a life and death struggle that touches them directly and personally, as indeed it is (Joni’s wife is a patient, Miriam and Rochi are patients). They are incredibly dedicated and creative and I hope we can continue to support them. It seemed to mean a great deal to them that a PHA Board Member from the States took the time to be with them. It was a humbling experience for me to spend an evening with these wonderful people.

Learn more about the 50 PH Associations worldwide at PHA's International Website.

Wednesday, November 11, 2009

East Coast, West Coast ping pong...

It's been tough to blog lately.

Last Thursday, I left the American College of Chest Physicians.  It was long days there, starting with Satellite Sessions at 6:00am each day and going through evening meetings that generally went until 9 or 10:00pm.  There was a grerat deal about PH there but little time to blog. 

Northy Carolina was my next stop for the University of North Carolina/Duke PH Symposium on Friday.  Speakers included Dr. Ford from UNC, Dr. Tapson from Duke and Dr. McLaughlin from U of Michigan.  Over 100 physicians attended the standing room only event.  I had a chance to speak to more than 50 patients and then headed out to the airport with a sense that this event will have a long and growing future.

On Saturday, I was at the Second Baltimore Walk for PH which had over 125 registered.  Drs. Hassoun and Girgis were among the speakers and I renewed aquaintances with a lot of families.

Monday was catchup at the  office and today I  just got back to San Francisco where I started a little more than a week ago.  Tomorrow Drs.McLaughlin, Badesch, Bull and myself will be presenting our plans for the second year of our med ed program to two potential sponsors.

It's time to head out for a working dinner, soo I'll sign off.

As always on these trips, I've met so many committed and interesting  people.  It's a disappointment to me that I haven't had the time to tell their stories in this week's blogs.

But getting back to that is my goal.  Let's see how quickly I can make that happen.

Wednesday, November 4, 2009

still too often...

In the  last issue of Pathlight, our Board Chair, Carl Hicks, wrote about his visit with Sharon Wilson and her family. We got word yesterday of her passing.  We mourn with her family.  We mourn for her and for all the good people we continue to lose to this terrible disease.  They drive us forward fo the day when we can truly say, "no more".

Here is a reprint of Carl's article.

Those of you who have heard me speak have heard me sometimes refer to this journey we are on as the “Trail of Tears.” I am quick to point out that along this route all of us seem to experience both tears of sadness as well as tears of joy. Yesterday I spent some time with a remarkable family I met on the trail. Both kinds of tears flowed for better than an hour.

Sharon and David Wilson, of Bellevue, Wash., live in a modest home with their sons Michael and Matt. A typical all-American family on the surface, David is now retired. Sharon has given up a promising career and a life of service as a teacher just prior to attaining her lifelong goal of a principal’s position. What makes this couple different is that David, a non-smoker, is stricken with lung cancer, while Sharon is now completely bedridden with pulmonary hypertension. And, the day prior to my visit, Sharon had just written a check for $200,000 to PHA. Through her generous donation to PHA, Sharon has accomplished her dream of helping others within her own lifetime.

As we all visited in Sharon’s bedroom, I ached inside for what surrounded me. Then Sharon would smile a really pretty smile and tell me how much she had enjoyed her chosen work of teaching and mentoring the kids in her classes. She has been able to give something to her school, and we cried tears of happiness together. The unfairness of what had struck their family and the inevitable “Why me?” question led to more tears of sadness. We all had a chuckle when I had to ask Michael, the youngest of the two boys, his age after hearing him recount several years of service in the Navy. “He’s just a babyface” the rest of the family chimed in unison as if they’d answered that question dozens of times. I shed a few tears of happiness at the closeness of this family because I knew they would need it to help each other out. I did my very best to thank Sharon and her family on behalf of all of us for her selfless act of kindness with her magnificent gift. As I tried to explain how her dollars, designated for research, would someday help to alleviate the suffering for untold numbers of people of all ages stricken with this illness, we cried more tears of both joy for those she would help save and sadness for those she couldn’t.

Leaving, I tried to get a promise from her that she wouldn’t go anywhere prior to our celebrating her birthday on September 26. She smiled again, a beautiful smile of peace that suggested now, especially after the tremendously kind acts of the past few days, her work here was nearly done. The tears came again for me as I pondered that, hugged her goodbye and headed for home.

The “Sharon Wilson Pulmonary Hypertension Research Fund” has been constituted at PHA. Every penny of Sharon’s contribution will go to research for the cure.

Tuesday, November 3, 2009

Constant motion...

Monday was my second day at the American College of Chest Physicians (CHEST) meeting.

CHEST is about one-third the size of the larger American Thoracic Society meeting but, with about 4,500 registrants, there's still a lot of activity...and much of it relates to PH.

Because so many of the people we work with come to this meeting, it's also a place for us to do PHA's own business.

At 7:30am, Dr. Channick, editor of PHA's medical journal, Advances in Pulmonary Hypertension, met with his editorial team to plan upcoming issues of the publication. Topics include Transplant and Living with PH. An interesting discussion took place as the editors considered an article looking at PH through the experiences of physicians around the world.

I had a chance to visit PHA's exhibit booth staffed by Sherrie, Donica and Christa before our noon Corporate Committee meeting. This year, the booth features a video from Dr. Bob Frantz who led the development of PHA's new medical website, PHA Online University (more about that in another blog).

PHA's Corporate Committee has 14 member companies. This meeeting was called to discuss three items, supporting Dr. Benza and Frantz's upcoming Kilimanjaro Climb to benefit PHA's research and patient-serving program,supporting the Conference scholarship programs and reviewing PHA's support group guidelines and activities. With about a dozen members and three physicians in the room and another 5 or 6 participating via conference call, the discussions brought in many perspectives and, I believe will generate valuable outcomes.

The CHEST sessions today were a rich mix of pH education and information and, from the ones I was able to observe, all seemed well attended. The day closed with a United therapeutics discussion of progress in patient-focused care and the debut of a video that included interviews with many of the doctors and patients we work with, as well as PHA itself.

Monday, November 2, 2009

A gathering...

After leaving Stanford on Sunday afternoon, I flew to San Diego for the annual meeting of the American College of Chest Physicians.  PHA hosts a heavily trafficked exhibit booth here each year.  We also have many side meetings.  Last night, our board chair-elect, Laura D’Anna and I had the opportunity to attend Gilead’s Research Award dinner.  This is the second year of the program and it was great to see it continue to grow with new support awards being presented to PH researchers.  On Wednesday, I will be attending a similar awards event for new Actelion research awards grantees.  Every year we are seeing the opportunities expand.  It is a true joy.
As I type this, I’m sitting in a morning symposium (if you can call 6:00am to 7:30am morning) titled Pulmonary Arterial Hypertension: Translating Evidence into Cases.  The PH programming is continuous here from early morning to late evening.  Given the numbers of PH patients compared to much larger conditions such as COPD, like other areas of our work, PH has achieved a presence far beyond our numbers.  This is happening because of the work of our physicians and researchers.  Their rapid progress is driving the extraordinary interest we are seeing here and at American Thoracic Society and other meetings.

What a difference 9 years makes…

When I flew into San Francisco on Saturday, the city was covered in a grey fog.

This morning the sun was shining in Palo Alto. The 9th Annual Stanford Race Against PH would have a great day! 

I got to the campus an hour before the start. Besides being a beautiful place, it’s the home of the Vera Moulton Wall PH Center. Under the former leadership of Dr. Ramona Doyle and now, her successor, Dr. Roham Zamanian, this event has grown to be the largest PH event in a fast-growing constellation of PH events.

Two years ago, when I last attended there were 1,000 walkers and runners. This year they topped 1,500!
It wasn’t always like that…

About a decade ago, I was sitting at my desk. I got a phone call from a young man who was engaged to Katie WEwing, the daughter of a PH patient. Our staff at the time was a couple of part-timers and I. Eddie Davis wanted to start a walk at Stanford and wondered how we could help. I’m afraid we didn’t do much for him…but he did a great deal for us. His questions helped us understand how to create future support and guidelines. I saw him – and the entire Ewing family – at this year’s walk. We spoke about that first year and the 120 who came that fist year. For me, it’s another in the continuing proofs that all good things start with an idea and someone willing to give them a try.

One of the nicer moments in a great day was at the race start. Dennis Hernandez, a PH patient at Stanford, was asked to come to the mic and countdown to the start. Once he was on the stage, he was surprised with the first Patient of the Year award. It was a very moving moment. From what I heard before this surprise moment, he has been a real gift to the PH community at Stanford – visiting with new patients regularly and helping them understand what is going on in their lives.

Rita Orth, a patient and PHA board member led a team of folks circulating through the crowd gathering signatures on a petition asking Senator Feinstein to introduce the PH Research and Education Act in the Senate. The response was fantastic.

There are so many people who are responsible when an event like this grows. I can’t name them all but Kristi Kerivan is one who can’t be overlooked. She’s been a consistent force in the event’s growth and I’m sure she’s already working on next year’s 10th anniversary event.

Take a look at some pictures from the 2009 Stanford Race here.

On the road again…

This morning I began a week-long series of activities that is taking me from the Stanford Race Against PH in Palo Alto to San Diego for the American College of Chest Physicians to North Carolina for the University of North  Carolina/Duke PH Symposium and then back home for the Baltimore PH Fun Walk.
I’ve been feeling a bit guilty about my diminished blogging since the PHA board meetings a couple of weeks ago.  I’ve been sandwiched between catch-ups from that and preparations for the upcoming week of meetings and events in four cities.
My goal has been at least four blogs per week and I’m psyched to get back to it.  I’m also looking forward to a busy and productive week and will try to blog from each event.