The International Reach of the PH Cause

The fight against PH is a global effort… and one that is growing rapidly. The goal is for no one to be left behind in the march toward better treatments, treatment accessibility and, ultimately, a cure. In recent blogs, I wrote about PHA's participation at the Saudi PH Association (SAPH) conference in Oman and our visit to ISEEK, the patient association in China. As an update, we've heard that several cities in China, following the Beijing meeting we participated in, have approved treatments for PH. We are also moving forward on our agreement with Saudi Arabian PH physicians to help them build patient participation into their next East Mediterranean Region Conference. It's nice to see that SAPH has included various PHA resources prominently on their homepage. As we prepare for our 2014 International Conference next week in Indianapolis, we are looking forward to seeing our friends from throughout the U.S. and also our friends from more than 30 nations around the world.

With this blog, PHA Medical Services staffer, Briana Rivas-Morello, concludes the story of PHA's World PH Day (and week!) travels. Here are her observations.

Briana presents to conference attendees.

On April 29, 2014, the Sociedad Latina de Hipertensión Pulmonar (HP) hosted an educational program, Día Mundial de la Hipertensión Pulmonar 2014, in Medellín, Colombia. I was excited for the opportunity to represent PHA at this meeting. The Sociedad Latina de HP, an umbrella organization that brings together the Latin American PH organizations, hosted this meeting for World PH Day (May 5), which provides the opportunity for PH associations around the world to act as one collaborative force against PH. In this way, across the globe, we took one step forward in worldwide PH awareness.

Sociedad Latina de HP consists of representation by 16 Spanish-speaking organizations in Latin America and Europe. The Día Mundial de la Hipertensión Pulmonar event brought together patients, family members and medical professionals to network, learn from each other and, most importantly, become more empowered to fight the disease. It was fascinating to watch presentations ranging from basic PH diagnosis and management, to the complex psychosocial issues that patients may face and the best coping strategies for living with PH. In presentation after presentation, I watched patients and caregivers engage and truly empower themselves in their fight against the disease.

PHA in particular was invited to present on how to organize patient support groups and maximize community involvement. In the past decades, the PH community has grown tremendously, and this is no exception in the Latin American community. As these groups continue to increase in numbers and capacity, they are facing new challenges. Most groups, as PHA did a few decades ago, originated as patient support groups, organized by and for patients. As they grow, Latin American groups are now beginning to grapple with such questions as:

• In what ways can medical professionals become more involved?
• In what ways might government or health ministry officials become more involved?
• What can family members and friends do to help?

These questions were the ones I tried to answer throughout my presentation, by providing examples of how PHA has been able to involve medical professionals, political representatives and family members and friends into our mission. The most important message that I hoped attendees would take home was that there is no loss in asking. It seems as though there is a slight hesitation to ask medical professionals or health officials to become more involved, as they already give so much of their time to the community. But as I asked the attendees to look around, and see how many medical professionals (many of whom work closely with PHA!), family members and friends were in the room, it was clear that there are countless individuals willing to help patient groups; they just need to be provided with the opportunity to do so.

Migdalia Denis, the president of Sociedad Latina de HP,
presents Dr. Sandoval with his award.

In this way, Sociedad Latina de HP organizations are working together to answer the above questions and begin to build toward their mission to offer hope, support and education to patients with PH and to advocate on their behalf. At PHA, we feel honored to be included in this process.

While in Colombia, I was especially excited to see Dr. Julio Sandoval receive the first Sociedad Latina de HP medical excellence award. Dr. Sandoval, of the Instituto Nacional de Cardiología in Mexico, is a longtime partner of PHA, and it was an absolute privilege to see him win the award. As I watched him receive the plaque, I couldn't help but reflect that it was an absolute and tangible representation of what World PH Day is - unity and collaboration in the fight against PH. We are all working together, in all ways that we can, involving as many players as we can.

PHA is extremely excited to continue to partner with the Sociedad Latina de HP to provide support and education to all those living with PH. This partnership is particularly important as PHA continues to develop its Spanish educational content. At the end of 2013, PHA hosted its first Spanish webinar on www.PHAssociation.org/SalonDeClases, and the second Spanish webinar just about one month ago. I was able to share this event with attendees at the meeting and receive feedback on our Spanish programming which will better help us reach more patients' needs.

Briana (left) and Yanira Polonia, a support group leader for the
Dominican Republic group, visit a famous statue while
traveling in Colombia for the conference.

To add to my excitement, I recently learned that more than half of the participants coming to the International Leaders' Summit at PHA's 2014 International PH Conference and Scientific Sessions will be representing countries in Latin America. I look forward to reconnecting with friends made at the Día Mundial de la Hipertensión Pulmonar and meeting many new friends! In persisting to strengthen these global partnerships critical in the fight against PH, I hope that we'll truly progress to the day we may find a cure.

Around the world in 30 days ... and still going!

As I write this note, three weeks and three days from PHA’s 2014 International PH Conference and Scientific Sessions, I find myself thinking about what Conference years were and what they are now.

It used to be that in even-numbered years (Conference years), volunteers and staff were completely re-directed to manage the thousands of details that make for a successful Conference.

That was then. Today is different.

We are working on so many essential projects beyond Conference that the good of the community requires us to strive for excellence in all.

Here is a snapshot of the 30 days (April 27 to May 26) before I wrote this blog. I hope it will give you a picture of what is being done to accelerate the fight against PH.

PHA opened this 30-day period with news that we had received another four-star rating by Charity Navigator. This is the eleventh time PHA has been rated by the largest online nonprofit reviewer and the eleventh four-star rating they have given this organization. They tell us less that 1 percent of the thousands of charities they rate have received this honor.

As many of you know, one of our goals at PHA is to weave together patients, families and medical professionals across the globe to make sure no good idea is kept in shadows. That concept of cooperation and collaboration has led to the growth of national PH associations with 68 functioning today, up from three in 2000. On May 14, in the context of World PH Day, I blogged about our weeklong trip to Muscat, Oman, and Beijing, China (April 29 – May 6). During that same time, we participated in a Latin America-wide conference of PH leaders. These trips are about much more than visits. They are about strengthening global unity in the fight against PH. For example, one day before the Oman/China trip, we had an April 27 international conference call to agree on the creation of a website that will help PH association leaders more easily find and use resources from all of the PH associations … bringing us one step closer to universally shared best practices for the acceleration of the movement’s growth. This call was an outgrowth of two years of meetings that also resulted in the creation of coordinated PH anxiety and depression studies in Asia, Europe and the U.S.

While I was working with our Chinese PH partners, marking World PH Day on May 5, there was tremendous activity in North America. PHA continues to manage the World PH Day website, which we created last year. Thanks to our friends at PHA Canada, Niagara Falls was lit purple on May 5 in recognition of World PH Day, as were the Peace bridge between Buffalo, New York, and Fort Erie, Ontario, and the CN Tower in Toronto (among other notable sites). In the U.S., besides a number of events, we continued to focus on building PHA’s media blitz, which I blogged about on April 30.

PHA’s media campaign continued to grow rapidly throughout May, with Queen Latifah, Michael Buble, Florence Henderson, (see May 2 entries about Lucas), Laura Dern, Courtney Cox and Diane Ladd helping to get the word out. Reports kept coming in all month about networks playing our public service announcements (PSAs), including in prime time on American Idol. New networks (both English and Spanish) were added to the list agreeing to play our PSAs. Our web pages training those in our community on how to maximize local air play are being visited heavily … as are the web pages for those who are becoming aware of PH by seeing the PSAs on TV or hearing them on the radio.

We spent May refining our formula for success in getting TV and radio play. According to the Benton Foundation, there are 1,744 full-power TV stations in the U.S. Adding low-power and UHF and VHF commercial stations, the number grows to 5,720. There are 14,728 full-power radio stations in the U.S. This month, we had our PSAs sent to the inbox of 4,000 TV stations and the 10,000 most popular radio stations. Through a few easy-to-make phone calls, you can make sure those PSAs are opened by the stations and played. We have never had an opportunity for awareness like this before and, as always, success depends on you and those you can help recruit. You are our only chance to reach in to the community where you live!

On May 8, three of us met PHA co-founders (and sisters) Judy Simpson and Pat Paton at the National Organization for Rare Disorders Gala in Washington, D.C. Pat and Judy (pictured left) were being honored as part of NORD’s Portraits of Courage program. Actelion and Bayer had been selected by NORD for their Innovative Orphan Products Award, with Pat Paton making the presentation to Bayer and me to Actelion.

On May 14, we filled the room at the FDA/PAH patient meeting at FDA headquarters in White Oak, Md. It was a great discussion with the goal of including patient input in the FDA decision-making process. Meetings for only 16 diseases have been scheduled despite requests from hundreds of disease organizations. We feel fortunate to have been able to help make this meeting take place. The webcast of the hearing has already been posted from the FDA PAH Public Hearing page in Part 1 and Part 2.

As we move closer to the launch of PHA’s PH Care Centers accreditation program, the pace of review and final development is accelerating. During the week of May 12, we had four PHCC Committee meetings to discuss the six pilot accreditations that have recently taken place, make necessary adjustments and prepare for the upcoming launch. Much education about the program has already taken place and more is coming.

Between May 16 and 20 – with several other staff – I was at the American Thoracic Society meeting in San Diego. This is the annual meeting attended by more than 16, 000 pulmonologists. When I attended my first ATS meeting in 1999, there was very little about PH … two sessions with attendance at one being 35, the other 50. Now it is one of the most discussed issues at the Conference, with thousands participating in PH sessions.

While at ATS, we had the opportunity to host a three-hour question-and-answer session for patients and their families. Drs. Ron Oudiz, Nick Kim, Jeff Sager and Nurse Practitioner Wendy Hill delivered a great interactive program. PHA’s exhibit was heavily visited with a great deal of interest in both our medical journal – Advances in Pulmonary Hypertension – and the new PH Care Centers accreditation program. Each of us had a number of other responsibilities at the Conference. With PHA's Michael Gray and Briana Rivas-Morello involved in a number of medical committee meetings (Briana also had primary responsibility for the patient question-and-answer program). PHA's Jessica Armstrong held committee meetings and developed new connections for our Early Diagnosis Campaign. She returned with several endorsements and several more pending. Debbie Castro’s schedule was filled as the newly elected Chair-elect of ATS’ Patient Advisory Roundtable (PAR). In two years when she becomes PAR Chair, Debbie will have a seat on the ATS Board. Dr. John Newman, a former PHA Scientific Leadership Council Chair, received the ATS Educator Award. Dr. Val McLaughlin, our current Board Chair received the PAR Award for Excellence – the second time in two years that it has been presented to a PH physician. (Dr. Mike McGoon received the award last year.)

Also, while at the American Thoracic Conference, we learned that we are ATS’ largest research partner … larger than industry or other nonprofits. This speaks to our goal of and success at leveraging our donor’s research support to bring in additional money to support PH research.

There’s something else special about the ATS Conference. Coming as it does every second year a month before PHA’s Conference, it is a time when we are usually discussing options for our Conference’s room blocks, remaining scholarship availability and many other issues. This year was no exception but, fortunately, did not distract too badly from my various meetings with funders, physicians and nonprofit partners. It is a place where we get to connect the dots to accelerate our forward motion.

So, that is a sketch of the past 30 days through one PHA staffer’s experiences. It doesn’t include those of our other employees and volunteers both in the national office and in our Chapter offices. It doesn’t include the glue that keeps our structure together and well governed, monthly meetings with PHA’s executive committee and finance committee, among others. It doesn’t include the time invested by staff and volunteers in support groups, the development and management of our research programs, our advocacy activities, patient and medical education, the creation of a new feedback system related to specialty pharmacies … and a great deal more.

We are truly a busy organization. For those who understand the importance of what we do, for those who can handle the pace, we wouldn’t have it any other way.

World PH Day: Pieces of a Brilliant Mosaic

As I've watched it grow and evolve over the past 16 years, I've come to see it as a beautiful mosaic. The power of that beauty flows from people who unite around the common cause of fighting this disease.

First, in 1991, four women sat around a kitchen table in Florida in the United States. Their desire to ease the isolation of living with a disease that was both rare and without treatments drove them to form the first pulmonary hypertension organization in the world, the Pulmonary Hypertension Association.

In 1996, patient associations were organized in France and Germany. 

In 2000, at PHA's International PH Conference in Chicago, we realized that people from other nations had actually come. When we invited them to meet with PHA's Board of Trustees, seven people joined us to begin a conversation that has never stopped. By 2001, PHA-UK and PHA Israel had formed.

When we had a more intentional meeting at our 2002 International Conference, 80 people came. When we asked them what they wanted from us, the message was clear.: PHA has been around longer. Help us to learn. Help us to build.

More national organizations were formed, and by the 2004 Conference, we had staffed a position to help increase communication and collaboration among the patient organizations. We also shared a simple principle that has been adopted by all PH associations: to succeed, we have to stand together – not just patients, not just caregivers, not just researchers, not just medical professionals... but ALL of us.

So now, as we prepare for PHA's 2014 International PH Conference, it remains the same. It has always been equal parts patients, family members and medical professionals. It has always been and will always be homecoming for the PH community

It has also become something more. It is the International Conference and Scientific Sessions. It is the International Conference and Global Leaders Symposium. More than 30 nations are expected to have a presence.

They are part of a global movement that today includes 68 national PH associations.

When our friends in Spain proposed World PH Day three years ago, we were glad to help. Since the Second World PH Day last year, we created and have managed a website for all the associations to share and coordinate activities.

We are also often invited to participate in other World PH Day activities.

This year Julia, who coordinates our international activities, and I were the guests of the Saudi Association for Pulmonary Hypertension. We boarded the plane on April 29 for a 13-hour flight to Muscat, Oman. For seven years, this group of physicians has led the Joint Pulmonary Hypertension Association Assembly of the Eastern Mediterranean Region. As she has with other national organizations, Julia has worked with PHA staff to make our patient and other materials available for translation by SAPH. Last year, she helped organize a call between U.S. and Saudi patients. 

Our visit was a great opportunity for us to meet physicians from throughout the Middle East and share information and discuss possible partnerships. One important conversation is likely to lead to a patient component for the next conference. When we helped Dr. Nick Hill organize a patients component for his medical Symposium at Tufts in Boston more than 10 years ago, we saw that concept spread rapidly to other PH meetings throughout the U.S.  Today it is the rule, not the exception. Our hope is that if Dr. Majdy Idrees and his SAPH leadership group are successful, the concept will spread throughout the region.

After three days on the ground in Muscat, Oman (a beautiful city by the Indian Ocean), it was time to hit the airport. Julia headed back to Washington, D.C., and I headed to a different gate for a nine-hour flight to Beijing, China. (I'm writing this as I wait for a lift to the airport for my trip home.)

ISEEK, the patients’ group in China has been working hard to meet needs in their nation. I had been invited to come to their first Conference. They had brought together more than 150 patients, family members and doctors with government officials to discuss the importance of creating drug availability for PH patients. I was brought in to discuss the multi-part U.S. insurance system (private insurance, Medicare, Medicaid, the Affordable Care Act, pharmaceutical support programs and so on). While there, I had a chance to renew acquaintances with Dr. Cheng, who I had met seven years ago during my last trip. Huan Huang, a young woman who was transplanted two years ago and is now the Director at ISEEK, presented on patient depression issues. It was striking to see the similarities and differences from our own and PHA Europe's depression and anxiety study to this Chinese study.

Following the meeting, about 30 doctors held an open meeting, with press attending, where they discussed positive ways to achieve the same thing every patient group in the world is after: a better life for patients as we continue the march toward a cure. It was good to see the doctors and patient leaders working so well together.

I spent most of the next day with the ISEEK staff. Their executive director, Rong Li, formerly a filmmaker, has built the organization quickly in a country now beginning to accept the value of nonprofits. They remind me so much of PHA's days of early staff history. They have moved four times in the past three years of their existence. Their staff has grown to six. They hire for the same values we do: bright people with commitment to cause and an ability to work well in teams. And they have a refusal to fail.

While Julia and I were traveling, Briana was in Medellin, Colombia, where PHA had been invited to present at the Sociedad Latina de Hipertensión Pulmonar (Latin Society of PH) – an umbrella organization similar in structure to PHA Europe. Briana's report will come in a future guest blog.

So, as I wait for my ride to Beijing airport for the long ride home, I continue to catch up with the regular daily and sometimes hourly updates about PHA's World PH Day project, which has generated celebrity interest on Twitter and continues to expand TV and radio play for our public service announcements.

Every day another piece of the mosaic falls into place. Every day we move another step closer to our goal.

It was wonderful to spend time with this enthusiastic and inquisitive group. I know we will hear a lot from them in coming years.

Join PHA for a Rare Opportunity … A Conversation with FDA

This is a guest blog by Katie Kroner, PHA’s Director of Advocacy and Awareness. Katie is working to fill the room (and the Internet) with PAH patients for a unique meeting at the FDA White Oak, Maryland, campus. PAH has been selected from thousands of diseases to be one of 16 to talk about what patients want from the FDA approval process. Now all we have to do is show up to be heard. It is truly a rare opportunity. If you haven't registered yet, do so now. If you have registered and are willing to speak on a panel, make sure you send an outline of your comments to FDA. You should have received an email from FDA with the details.

We count on the U.S. Food and Drug Administration (FDA) to ensure that the medications we buy are safe.

FDA is also responsible for making sure that drugs do what the company selling them says they will do and that each new drug does something at least a little different from previous ones. In other words, that those drugs are effective and offer new options.

Every drug comes with some risks. How does FDA decide that a drug is safe and effective enough to be sold? In the past, they’ve based these decisions on specific, measurable criteria such as improving performance on the six-minute-walk test.

What they haven’t done much of is talk with people who will actually be taking the drugs they approve. In fact, some disease communities have had to protest in front of the FDA building just to get a meeting.

That’s what makes the May 13 meeting between FDA and the PAH community so unique. FDA has decided to make some changes in how they measure safety and effectiveness, and this time they are asking patients for advice. When they announced their new program, they got requests for meetings from hundreds of groups. Rino wrote comments, and PHA Board Member Colleen Brunetti traveled to DC to present to the FDA. In the end, FDA decided to start small, they will meet with 16 disease communities over the next three years, and the PAH community is one of them.

That meeting will take place on Tuesday, May 13, and it’s important that you take part. The room holds 250 and the Internet holds a whole lot more. I invite you to come in person if you can, but if you can’t make the trip, you can still respond to poll questions and submit comments online.

We know from FDA’s meetings with other disease communities that the conversation will be informal. After kick-off comments from a few pre-selected panelists, anyone in the room who is living with PAH and the parents of children with the disease will be invited to speak to questions like: 

• What symptoms of PAH most impact your daily life?
• Are there activities that are important to you that you can’t do the way you would like because of your PAH?
• What do you do to treat your PAH?
• Are there downsides to your treatments? How do these impact your life?

Those who participate online can respond to similar questions via poll. 

It’s about time a federal agency is asking PAH patients these important questions. PHA has worked hard to secure this meeting. Now it’s your turn to make your voice heard.

• Register with FDA. Whether you are attending in person or by webcast, you must register on FDA’s website. All members of the PH community are welcome, but PAH patients and the parents of young patients will do the talking.
• Claim your seat on the bus. For those who would prefer not to drive to the FDA campus, buses are available from pick up points in New York, Philadelphia and Maryland. Complete this form to claim your seat on the bus

Leadership, Face to Face...

I had an interesting call from Sean Wyman the other day. Sean is an energetic young man who is active in our community, a patient who is currently attending medical school.

As we spoke about a number of issues, we got onto the subject of PHA’s recent Board meeting. Sean found it interesting and suggested I share it with the broader community. Thanks for a good idea, Sean.

"When you can get these leaders together, face to face, that’s when you’ll see real change."
– Bruce Brundage, MD (2001)
Chair of PHA’s Scientific Leadership Council (SLC)

When we talk about a Board meeting at PHA, we’re really talking about a lot more.

Our most recent set of meetings offers a good example.

On Wednesday, March 12, I flew to Orlando and headed over to the Marriott Renaissance. After checking sites in Florida and Texas, our staff picked this venue because the hotel had the meeting room availability we needed for our various sessions and activities, airfare is cheaper because there are so many direct flights, and we were able to get a great room price.

For more fluid planning, PHA usually holds our leadership meetings back to back, since our Board, SLC and PH Professional Network (PHPN) structures are interlocked. Plus, holding them together keeps costs down. This time was no exception.

We began with the executive committee of PH Professional Network on Thursday morning at 7:30 a.m. This is leadership of PHA’s membership group for nurses, nurse practitioners, physicians’ assistants, pharmacists, respiratory therapists and other non-MD medical professionals. Much of their conversation is always about different projects they are creating or reviewing for patients and families. (Take a look at our new School Resource Guide for an example.) There was also a lot of conversation at this meeting about the restructuring of their membership newsletter, development of online medical education programs for their peers working in PH and their members’ involvement in supporting our International PH Conference.

 

When they broke at about 4:00 p.m., I headed over to a combined meeting of the four leadership committees of the PH Care Centers (PHCC). This effort to create an accreditation system for PH Centers is important for a number of reasons.  

• PHA has always publically proclaimed that it is important for patients to see physicians who are experts in PH. However, when people contact us, we have no standard by which to make referrals.
• PH has grown from about 100 treating physicians in 2001 to more than 10,000 today. Most of those physicians see two or three PH patients and are not attached to the latest research in this fast-moving field.
• About three years ago, one of the nation’s largest insurers put out notice that they would no longer be covering combination therapy for PH patients in North Carolina and that this was the pilot for that policy being spread across the U.S. As this limitation on access to treatment moved toward reality, PH doctors were frightened for their patients. PHA’s Scientific Leadership Council (SLC) joined with PH Centers in that state to begin conversations. They made a case for the insurer to defer their decision. They also learned that a major concern for the insurer was that many PH patients had been diagnosed without the essential right heart catheterization, and they claimed to have no objection to providing approval for combination therapy where the prescribing physician was expert in the field. The only problem is that there were no expert standards in the field.

The committees of doctors, other medical professionals and patient liaisons were reviewing current progress and next steps. The PHCC program is now in the midst of its pilot phase (six accreditations), and medical leaders will be holding a webinar on April 30 to explain the program to patients and caregivers. It was a productive and intense meeting that went on until 10:30 p.m.

The next morning, Friday, at 8:00 a.m., it was time for PHA’s SLC to begin. The SLC is a body of world-class PH physicians who – among other things – help PHA develop strong medical education activities for medical professionals, patients and families, oversee our various research programs and make sure that all of our medical information is correct.

Discussions were held around the work of a number of active SLC committees. The Insurance and Advocacy Committee (chaired by Dr. Ron Oudiz) works on making it easier for PH patients to get approval for Social Security Disability and coordinates various state efforts where the voice of medical professionals is needed to increase the value of these programs for PH patients. The Research Committee (chaired by Dr. Serpil Erzurum) reported on an upcoming review of our research programs, which have, to date, committed more than $13,000,000 to research grants. The Education Committee (chaired by Dr. Bob Schilz) has been working on fact sheets for the three new treatments approved for PH by the FDA. All three of those new treatments came in a 73-day period between October and December of 2013. 

With 12 treatments now available – all since 1996, 11 since 2001 – PAH has as many or more treatments than all but two of the 7,000 rare diseases identified in the U.S. The FDA has told us that, unless you count all the cancers as a single disease, they have never seen so many treatments approved in so short a time for any disease, rare or common. This speaks to the collaborative work of our PH medical community and the power of working in a community that does not separate medical professionals, patients and families. We may be a rare disease with a rare model of operation, but PHA’s approach certainly is working.

The other SLC committees also moved forward on many fronts. I was touched that so many of the SLC members donated their travel expenses in honor of Dr. Richard Channick, who is completing a very productive term as SLC Chair. The suggestion had been made by his successor, Dr. Karen Fagan. The SLC meeting went on through mid-afternoon, but I had to leave at 2:00 p.m. as PHA Board Committees began their sessions.

PHA’s Development Committee was first up, followed by the Strategic Planning Committee and the Governance Committee and, finally, the Conference Committee. So what do these folks do?

I think the most succinct description I’ve ever heard of the job of a development committee came from a nun who was president of a non-profit hospital in Rochester, Minn. She said to Dr. Mike McGoon, “No money, no mission.” It’s true. Unlike government, organizations like PHA don’t get money through the power of taxation; unlike businesses, we don’t have a product to sell. We keep our doors open to do the things we are asked to do because people vote with their pocketbook. PHA’s basic dues have remained at $15 per year for well over a decade and a half, and while our membership numbers have grown considerably, if every patient in the U.S. joined PHA, dues would only bring in about 3 percent of our budget. Our Board throughout the years has directed us to build a structure that will not be limited by our numbers. After all, it is just as expensive to fix a rare disease like PH with 20,000 to 30,000 patients in the U.S., as it is to fix a more common one like diabetes with 26,000,000. So the Development Committee works with staff to make sure our fight is never limited by the size of our disease.

The Strategic Planning Committee has similar simplicity to its mission. If you haven’t decided where you want to go, you’ll never get there. PHA’s Strategic Planning Committee works with staff and stakeholders (various segments of the community we serve) to plan our future directions and evaluate whether we are progressing toward those targets. Our plans are usually developed for three-year time periods and evaluated annually.

The Governance Committee proposes the rules that the Board will live by. This runs anywhere from conflict of interest policies to nominating future officers… and a lot in between. While PHA is a community rather than a business, we also have a strong responsibility to manage well the resources that our members and friends provide. Thoughtful governance provides direction for us to do that.

Then there’s the Conference Committee. PHA’s bi-annual International PH Conference has grown to become the largest PH meeting in the world. The 2012 Conference drew well over 1,500 registrants from 30 nations. Pre-Conference includes Scientific Sessions, the International PH Association Leaders' Summit (PHA has played a central role in expanding the number of global PH associations from three in 2000 to 68 today), support group leader and other training sessions and patient and family meet-ups. And that’s just before Conference opens. Conference itself is a complex agenda of patient and medical education, individual and group connections and plenary sessions designed to display the present and the future.

On Saturday at 8:00 a.m., we moved on to PHA’s Board of Trustees meeting. PHA’s Board is a volunteer group of patients, family members and medical professionals. This blend helps us to get the best from each constituency to benefit our mission: To find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness.

 

After a difficult 2012, we were able to report on stronger financials for 2013. This was especially important considering the major new initiatives PHA has been asked to take on. There was considerable discussion about the PH Care Centers since our Board provides oversight and ultimate governance for that important new program. Also, the Board reviewed progress on our new Specialty Pharmacy Advisory Board, which emerged from the frustration of patients and medical professionals in a field that is undergoing major changes. PHA has recently hired a staff person (Eva LaManna) to manage this program and to help move it rapidly to its next stage, evaluation of pharmacy response time and comparing the patient/medical professional and company view of the success in positively closing cases. You will be hearing much more about this program as we complete Phase 2 of the feedback system.  

The five-year Early Diagnosis Campaign has accelerated with Jessica Armstrong as our new staffer on the project. Jessica began to show symptoms of PH at 17,000 feet in Afghanistan… and was described as a malingerer. Her story appears in the winter 2014 issue of Pathlight. She understands the importance of early diagnosis and has been successfully moving our three committees forward.

We spent considerable time discussing the Chapter structure begun in January 2013. This was something the Board came to after investigating many options. The goal was to assure PHA’s ability to sustain its programs into the future. The Chapters’ goal is to create new funding opportunities in communities to support the programs we are asked to begin and maintain. Progress is good although not instant and the Board must carefully evaluate our investment and movement toward stability and success. Between our grassroots and Chapter events, PHA is on track for more than 100 events in 2014. Board members are among the many in our community who organize and host these events.

Well, there was a lot more, but the Board meeting ended on Sunday afternoon. A number of us were stranded for a while due East Coast weather conditions, leading to flight cancellations… but that’s the nature of service on the Board.