Have You Been on PHA's Facebook Page Recently?

PHA's guest blogger this week is Debbie Drell (nee Castro). As a long-time PHA staffer and caregiver, Debbie has spent many years building the PH community through her work with PHA's support group network. Lately, she has been looking at the PH community through another lens.

This month, I’m celebrating my 12-year anniversary of working at the Pulmonary Hypertension Association. I am currently the Senior Director of Volunteer Services and my team (Andrew Hicks and Michael Knaapen) works directly with the 245 support groups in the United States and Puerto Rico. Not a day goes by that I don’t thank my lucky stars that I am a part of this team based in the Washington, D.C., area, doing such amazing work for medical professionals, patients and caregivers in this field of PH.

To celebrate my anniversary, the organization decided to let me “guest post” for PHA’s Facebook page. On June 20, I started working with our Communications team to look at what we’re posting, how frequently we post and WHY we post. What I wanted to do was incorporate more patient faces, voices, perspectives, quotes and testimonials. The community has responded overwhelmingly with comments, likes, shares and positive feedback. We gained hundreds of likes in the last two weeks and had a huge surge in “engagement,” which means people commenting and interacting on the page.

We post a lot about the educational and support resources we provide; we post about advocacy and event opportunities for getting involved. What I added was another element: I saw news in related disease conditions and updates on disability issues in general and put a PH twist to them:

This post was pretty well received. It may very well be the most engaging post we’ve ever put on our Facebook. With 431 shares and nearly 300 “likes” – this message was really proliferated in the community. People shared it and added their stories of being unfairly harassed when parking at handicap spots. Since my sister was diagnosed with PH 17 years ago, she’s experienced the “invisible” nature of the disease, and I’ve been there to see it firsthand. When I saw others posting about the 25th Anniversary of the Americans with Disabilities Act, I just had a gut feeling that we needed to connect the PH community in our own special way to this larger disability community news. We are rare and misunderstood in the public, but we can come together in understanding of the disease. We can raise awareness and fight against the invisible nature of this disease.

I wanted to share the story of hope from a young girl who created a major awareness-raising video explaining what she goes through with PH. PHA showed this video at our Congressional Luncheon last November, and when I saw that it was this girl’s birthday, I decided to showcase her work and post this video with a note that she is celebrating 12 years on this earth when doctors told her she wouldn’t live to see her 1st birthday. Some people are so brave, and with what energy they have, they put so much work and good into the universe on behalf of the community. She is an inspiration, and people really appreciated her story and her work with this video.

One woman wrote: Eliana, lots of people can do things you can't do ... but few can do what you CAN do. It takes a lot of strength to do sports, or run marathons. You move mountains with your little finger!

I’ve also tried really hard to respond to each and every comment and posting on the page. This is time-consuming (but really fun!), and it is so rewarding to read the feedback and hear people sharing their challenges and experiences with PH. We try our best to connect with everyone who posts on our wall. It’s really exciting how people start talking to each other about their experiences with everything from clinical trials to disability parking to being diagnosed to pulmonary rehabilitation to blood clots related PH!

We put out a press release about Heart Camp for Kids, and the response to this has been incredible. So many parents and adults are grateful for Dr. Hanna’s group and their ability to put this together so our kids can feel like anybody else.

We’re making sure our page showcases the faces and voices of the PH community, including this lovely lady who was diagnosed with pulmonary fibrosis and PH. Her story was in Pathlight, and we edited her photo to include her inspiring words. Some of the comments on this thread made me cry with happiness (genuinely touching words from the community).

But don’t worry! We are still posting free medical education content for patients – and people are sharing their stories on these posts, too. We posted about a joint American Thoracic Society and PHA Patient Education Seminar recording that included new therapies on the horizon and clinical trials. People from around the world talked about their experiences in clinical trials and how they’re doing now. They breathed life and real experiences with the subject in a way that makes it easy to see how important these resources are for patients.

I just want to say that I am honored to be able to provide a new perspective on PHA’s Facebook page and to encourage the voices of the community into our posts. It is a great privilege to connect with so many good people at various stages of their diagnosis. One person connected with us after being diagnosed days before; another was diagnosed 20 years ago and was sharing with us for the first time. In each of these interactions, I realize just how important it is to bring patients together. Creating the community of hope that is PHA was the motivation for the founders, and even on our Facebook page, we continue to see the power of patients coming together, interacting and sharing their stories.

Thank you to the thousands of people who shared our posts these last two weeks, including (but not limited to) these U.S. and international organizations, institutions and grassroots community groups:

• Caring Voice Coalition
• American Thoracic Society
• Team Phenomenal Hope
• Emory Pulmonary Hypertension Program 
• Sarcoidosis Foundation
• Angels Sharing Scleroderma Awareness
• ВГО "Асоціація хворих на легеневу гіпертензію" 
• PHenomenal PHighters
• Fresh Aire for Sandye 
• Lupin Respira
• Trio International
• PHKids4acure
• Smiles for Shaye

And all the support groups who shared:

• Binghamton, N.Y.     
• Boston, Mass.     
• DFW Friends 
• El Paso     
• Fresno, Calif.     
• Greater Atlanta     
• Greater L.A.     
• Indianapolis     
• Iowa     
• Long Beach South Bay     
• Long Island     
• Nashville     
• North Jersey 
• Northern Virginia 
• NW Arkansas 
• PG County, Md. 
• Puerto Rico 
• Rhode Island 
• Savannah, Ga. 
• Silver Spring, Md.  
• Silver Spring and D.C.

Don't forget to invite your friends to PHA's Facebook page to join the conversation. Thanks for getting us to 14,000 likes!

myPHA: A Legacy of Connection Blossoms Online

This week’s blog is written by Olivia May. Olivia has been working hard as part of the team developing myPHA. This new multi-purpose communications system for PHA has been designed to make it much easier to find what PHA offers that is of interest to you specifically and to better connect members with common interests. Put another way, you tell us about your interests, and myPHA will focus on getting you what you’re looking for. 

PHA has been built on communication and community. myPHA is the newest embodiment of those values. We all hope it will bring new information, connections and opportunity. I encourage you to join the hundreds of myPHA  members who have already signed up for this great new service during its inaugural month!

PHA's Founders at the Kitchen Table

As well-known as the story is, it’s difficult to write about PHA’s new online community without acknowledging our origins. The founding of PHA as a support group of four gathered around a kitchen table is a powerful image that remains at the center of our mission and efforts. Connecting patients and caregivers to each other was the first step in creating the organization that exists today – but that doesn’t mean it’s no longer a part of our work. Reaching out to those affected by PH is an ongoing project that is essential to making our resources available as well as maintaining a close understanding of our community. Making it possible for one patient to talk to another is no less important now than it was in 1991; however, we now have ways of doing it that have broadened our reach and united our community on an unforeseen scale.

Our new online patient community myPHA is the latest development in these efforts. Unlike the founding members, patients diagnosed today are often using the Internet as their primary means to finding information as well as finding others like them. According to a 2013 Pew Research Study “Health Online,” 1 out of 3 Americans have gone online to figure out a medical condition. Seventy-two percent of Internet users say they looked online for health information of one kind or another within the past year. With these numbers in mind, it’s easy to see how essential PHA’s online resources are to newly diagnosed patients as well as those who are already connected to us. And our online presence isn’t only a starting point to establish contact – for many, engagement with PHA happens exclusively online.

PHA created myPHA to offer a virtual home to our community. That meant we had to ensure a level of technical sophistication that would support the diversity and strength of our members. The PH community interacts in a variety of ways, for a variety of purposes. Some see the value in sharing their story as a singular message of hope, while others prefer to engage one-on-one. We chose the platform that hosts myPHA to honor the many styles of support that we already saw happening and to bring them together in one online “place.” myPHA is now home to

• a community-wide discussion board, 
• an interactive blog archive, 
• customized resource lists, 
• groups that are private to specific sub-communities, 
• and more! 

Best of all, it’s flexible to the changes that are sure to come as our community continues to grow and sprout new ideas and practices. Read the spring Pathlight article for FAQs and other details about myPHA

Throughout the process of designing and launching the site, we’ve received indispensable feedback from PHA PHriends, Board Members, support group leaders, and other involved patients and caregivers. We made it a priority to let the community perspective guide the major decisions of the site as we built it out, and that shows today. From the Groups and Blogs down to the design details, this is an online community that was shaped by and for PH patients and caregivers.

It has been a unique honor and pleasure to watch the site take flight. Since launching on April 10, 2015, myPHA has exemplified the PH community’s powerful ability to adapt and come together in new ways. Today, more than 600 members are registered on the site. We see the importance of this virtual resource every time a member joins and connects with others like them for the first time. Now, a patient diagnosed in a geographically isolated area can be immediately connected to an email mentor, information about their type of PH, a private group of patients like them, an informative discussion forum, a list of members living in their area and a collection of patient narratives. This is an enormously different experience from that of a patient diagnosed 10 years ago, and we will continue to work hard to improve that experience in any way we can. We hope that myPHA will continue to grow and provide a bustling home to the learning, support and connection that our community needs and provides. Connect with myPHA now

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. 

Holding true...

Are we who we started out to be?

Here - in its entirety - is the lead article from the third issue of Pathlight, published in November of 1990.  It was written by PHA co-founder Teresa Knazik and appeared under the title, Pathlight Grows...but it was about a lot more than that.  See what you think.

Welcome newcomers.  We now have 35 members and anticipate many more in the coming months. Over 100 copies of Issue #3 have been mailed, and many members are sharing copies with physicians and organizations in their communities, helping to spread the word about us.  Several of our new members are patients of Dr. Rich at UIC Medical Center, and I want to thank Lisa Kaufmann, RN for making copies of Pathlight available to those patients.

Would those who have so generously volunteered their time and talents please let me know what skills you can offer?  Soon we will form committees to begin working toward our goals, and we will need leadership and committed individuals to do this.  Please share any ideas that you may have to further our efforts.  We are hoping to incorporate before the end of the year, and our goals are:

...to organize a national patients' association with regional and local support chapters.

...to make Pathlight accessible to those who need it but cannot afford it.

...to help family, friends, and each other understand the pain and fear we experience - coping.

...to educate the public about our disabilities.

...to promote awareness among family physicians who can aid in early detection.

...to encourage research and become informed of research in progress.

...to form a "collective voice" so that our needs may be heard among those who have more well known disorders.

As I was reading this article, the new issue of PHA's medical journal, Advances in Pulmonary Hypertension arrived.  In his editor's memo, Dr. Richard Channick focused on the Scientific Sessions held at PHA's Conference this past June - and the Conference itself - and he writes:

Not surprisingly, the evolution of Conference perfectly mirrors the growth of PHA itself.  The iconic image of 4 people sitting around a kitchen table has morphed into a major organization that provides a dizzying array of services to patients, develops and implements many invaluable educational programs and funds both basic and applied research.  A remarkable evolution!

PHA has evolved but I'm very proud that, despite the changes in scale, we have stayed true to the thoughtful and solid foundation our founders provided.

Thanks to Pathlight's current editor, Megan Mallory, you can now read the first three issues of Pathlight.  When you get to the page, scroll down to Back to the Beginning.

A note about Pathlight...and a few more words

This morning, the first e-mail I saw was from John Hess.  John whose son is a patient has been a volunteer on a number of projects and activities over the years and, more recently, has joined the PHA board of trustees. 

He wrote...

Very rarely do I get down to sit down, relax and read. Tonight I had that luxury and did so with the most recent Pathlight.

As I read Pathlight, I'm inspired by the messages of progress and hope contained within it. I see PHA adding new services and programs with dedicated and inspired staff. I see committed caregivers and patients spreading the word about PH. I see healthcare providers suggesting strategies for transitioning PH children from pediatric to adult programs. I see an entire community of people, separated by geography but bound together by a common cause. It's inspiring and an amazing thing to be a part of.

Of course, it's always nice - and often moving - to receive notes like this.  It also helps us to know we are hitting our targets.  

Pathlight was edited by patients and one caregiver for the first 16 years of its existence. This began in May 1990 when Teresa Knazik, one of PHA's founders, launched the first issue (see left).  She served as editor through 1994. For awhile, she co-editied with another patient, Patricia Murphy. Then Pat's husband Mark Taylor Murphy was editor through 1996 when another patient, Jan Travioli, took over. Shirley Craig was the last patient editor, serving from 2000 to 2006.  

There was a one-word reason Pathlight editing moved from a volunteer to a staff role in 2006. Growth. By the time of its transition, Pathlight had grown to a 40 page per quarter publication.

The real challenge for PHA was keeping the community's voice loud and clear.  Christine Dickler became the first staff editor and began her task by extensively surveying and interviewing many patients, caregivers and medical professionals.  She learned that the key issue for patients was that they wanted to hear as much as possible about how others are living with PH.  That has been implemented by including members from throughout our community as subjects of stories and writers.  As a matter of fact, Christine segmented the publication with a Users Guide that appears in every issue.  The backbone around which each of the issues is built includes the following sections: PHenomenal Lives, Health Matters, Advancing the Cause, Community Classroom, PHenomenal Youth, and Family PHocus.  All are written to offer what our readers have told us is important to them. 

When Christine left the editor position (first to go to gradiuate school, then to return to lead our International Services department) Megan Mallory took over as editor.  She maintains the same commitment to getting the story of this community out in ways that bring value to those whose lives are touched by this disease. 

John, thank you for noticing.