Some days are a joy...some are not

We celebrate so many advances in the treatment of PH that sometimes we forget the other side of the coin.

Yesterday was a sad day.  Within a two hour span we learned of the passing of two good people, two good friends, Phil LeGrande and Wendy Bockhorst.

May they rest in peace.

Debbie Castro wrote to fellow staff about Phil...

Dear Staff,

For four years, Phil donated hundreds of hours, lots of energy (of what he DID have), tons of inappropriate jokes, and even $125 to PHA during an urgent matching funds competition on Facebook. He was a support group leader, an advocate on the Hill, and one of our most steadfast and reliable daytime office volunteers.

He usually came into the office with a great attitude, in spite of always having to take breaks to rest. Of course, he came in feisty some times, but he always wanted to make a difference in the community and to help others. He came in with body aches and pains and never complained about it. He complained about everything else, but never about his pain. I loved him for his ability to LIVE life and to expect great things out of himself and others around him.

About a year ago, he stopped responding to our emails, calls, and even letters. It turns out that he was just too sick battling his PH and perhaps residual symptoms of lung cancer.

I posted a message about Phil LeGrande passing away on FaceBook and heard back immediately from at least 4 of our old volunteers. Everyone is saddened to hear this news.


Debbie

Jess McKearin wrote to us about Wendy...

Dear all,

I’m very sad to report news that Wendy Bockhorst passed away earlier today. Her husband Bill called to let us know. Wendy was a PH patient, Support Group Leader in Phoenix, Ariz., advocate, special events organizer and an all-around wonderful woman.


Wendy definitely was an example of hope to other patients. Bill said that Wendy always made a point to tell others that she lived with this disease and wanted to make the most of that opportunity to impact others’ lives. They were also recently remembering the 2008 Conference together and Wendy was talking about how excited she was to attend next year’s. She was already planning for her 2010 Cure PH Casino Night – her 6th special event overall.

She spoke of why she loved planning events: “One main reason that I get involved through special events is because my PH is genetic…if I can continue working to raise funds for and awareness of this disease, then maybe the next generation won’t have to suffer as much. So much has been done in recent years, and PH treatment options now are just unbelievable... By continuing to stay involved, one day we can find the cure.”


Please don’t hesitate to offer other thoughts or memories of Wendy if you’re willing to share. I’ll create a condolence card for us to sign tomorrow.

Thanks,
Jess

The fight goes on.

Kahina's story...

Thanks to  Christine Dickler, PHA's Associate Director of International Services, for this guest blog...

During the holiday season, it’s more apparent than ever how lucky we are to have so many friends and partners in this vibrant community. With hundreds of support groups, dozens of online community groups, and local events to draw us together, we can take stock of the incredible people we meet thanks to this otherwise difficult disease. And new connections are being made every day, in places much further than we might ever have imagined…


PHA’s International Services department is an active hub for patients, doctors, and associations outside the US. The connections PHA makes with the global PH community enhance and inspire our work every day. This fall, we were contacted by a young woman in Algeria who was in search of medication for her mother. Kahina explained that though the drug was approved in her country, her mother frequently did not receive the deliveries in time – an obstacle that left her without treatment for days, weeks, even three months, while the life-saving drug was locked up in customs. Every few months for more than two years, Kahina travelled to the capital to demand that the government approve funding to pay for the next supply, that the hospital place the order well before it was needed, and that customs release the treatment promptly.

As we learned more about her mother’s immediate needs – medicine that would dramatically improve her pressures and keep her well – Kahina’s story revealed a much greater need: advocacy for every patient in Algeria and medical education to ensure adequate treatment. From what Kahina knows, there are only three or four PH patients identified in all of Algeria, and these patients, too, must endure periods without proper therapy.

In the story of Kahina’s mother, there are many heroes. There is the doctor in France who finally recognized her symptoms, allowing her to begin returning to her life as an active painter. This doctor continues to advise her local physician, who must perform tests she doesn’t fully understand in facilities that aren’t fully equipped for the task. There are the government officials who, not understanding the severity of PH or the importance of the expensive drugs, approve an order that costs 20 times more per month than the average monthly income. There are the pharmaceutical representatives who ensured that an ally was placed in the central pharmacy so that medicine would be ordered correctly, and in advance.

And of course, there is the story of a daughter who made friends across the globe in order to keep her mother safe – even if it means taking on new battles! With one of her mother’s ten drugs made more accessible, Kahina says that she’s start fighting to get another approved for reimbursement, saying “…another issue to be solved , I’ll try to do my best again!”

A Thanksgiving message...

On Thanksgiving day, I checked e-mail not expecting to find much.

How wrong I was.

It was a pleasure meeting you last week at the Pulmonary Hypertension Summit at the Cleveland Clinic. I was there a few years ago when you spoke at that summit, but did not get to meet you then. I want to thank you again for all the work that you do. It means so much to me and to other patients with this terrible disease. On this Thanksgiving day, I am very thankful for all the things in my life that I am blessed with. I am also thankful for people like you and the PHA and for the amazing work that you do. I thank you from the bottom of my heart (and lungs!). May you have much more continued success with the PHA. I have attached a picture of you and I from the event and also a picture of myself with Merle and my doctor, Dr. Minai. Happy Holidays!

Sincerely,

Maria Martuccio



The thanks is all mine Maria.  You motivate me. You motivate our staff who I shared this with. You and people like you are the drivers of our ever-accelerating vehicle.  Thank you.

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.

Congratulations!

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

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

INSPIRING QUOTE


[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…

MASS EDUCATION OF ALL EMS TECHS IN MAINE!


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:


References:


• 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

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.