Is Your Healthcare Professional Coming to Capitol Hill?

This week’s guest blogger is PHA’s Senior Director of Advocacy and Awareness, Katie Kroner. Katie started working on our PH Professional Network (PHPN) Advocacy Day in 2007 when she had recently begun at PHA as an Advocacy Associate. She makes a strong case for the importance of the PHPN Advocacy Day as an integral part of the PHPN Symposium educational and networking event. PHA works hard to keep costs very low for the Symposium (and free for the Advocacy Day) because we know that education, networking and action lead to better and longer lives for patients. If you’re an NP, PA, RN, RRT, social worker or other medical specialist working in the PH field, consider coming to Advocacy Day and the Symposium this September. If you are a patient, please make sure your medical staff is aware of this opportunity.

PHPN Symposium attendees pose with
Rep. Lois Capps (D-CA) during Advocacy Day 2013.

Are the PH nurses, social workers, respiratory therapists or other allied health professionals in your life registered for the PH Professional Network Advocacy Day on Sept. 17?

If not, they should be. I’ll tell you why, and I hope you’ll share this information with them.

Let me start with the bigger picture. This fall, from Sept. 17-19, PHA will host the PH Professional Network Symposium in Arlington, Va. Symposium is an educational and networking opportunity for allied health professionals who want to learn more about caring for those with pulmonary hypertension. Previous participants have described it as life changing, and many leave with new strategies, ideas and support to make sure the PH patients they see get the best medical care possible.

But wait. There’s more.

Symposium participants can check a box on their registration form to sign up for a FREE advocacy day on Capitol Hill on Thursday, Sept. 17.

When it comes to PH advocacy and the Pulmonary Hypertension Research and Diagnosis Act of 2015, health professionals have a unique and valuable perspective. They can tell not one story about the impact of PH, but hundreds. They can also speak about the importance of National Institutes of Health (NIH) funding for PH research and the work their institution is doing in that area.

One participant described her choice to register for PHPN Advocacy Day this way: It is important for us to support our patients in any way possible. Many are not able to make this trip and it is imperative that we get more knowledge about PAH to the community.

Another said, I’m a nurse! I advocate for my patients every chance I get!

PHA provides training, lunch and transportation between the Symposium hotel and Capitol Hill. Advocates are placed into groups based on their congressional district and accompanied by a PHA staff person or experienced advocate.

PHA knows that when health professionals come to Capitol Hill to speak out on behalf of their patients, Members of Congress listen.

That’s why we do everything we can to make Advocacy Day an easy, fun opportunity. Is your health professional registered? www.PHAssociation.org/Symposium

P.S. Advocacy day participants who want to get a sneak peek at the day can register now for a PHA Online University webinar that answers questions ranging from, “What should I say?” to “What should I wear?”

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!

Protecting Yourself from Summertime Pests

Today’s guest blog post is different from those we usually present, but it is very appropriate for this time of year. Many thanks to Donneea Edwards-Moore, RN, MSN, the Pulmonary Hypertension Nurse Coordinator at the University of Chicago Medical Center, for providing these summertime tips for pulmonary hypertension patients.

While most people look forward to summertime fun, the summer months can bring about pesky insects that can ruin a good time. Enjoyable weather, backyard cookouts, and swimming in the pool can turn into battle of the insects.

Mosquitoes, stinging insects (bees, wasps and hornets), and ticks are just a few insects that prey on people for their own satisfaction. No one wants to be a buffet for these bloodsucking insects; they can be nuisances and can cause mild to severe allergic reactions in some people. These allergic reactions can be fatal to PH patients, causing anaphylactic shock and the exacerbation of symptoms. There are measures PH patients can take to protect themselves from these pests and prevent themselves from getting bitten and stung.

Mosquitoes (West Nile Virus)

According to the Center for Disease Control (CDC), almost 40,000 people in the U.S. have been reported with West Nile virus disease since 1999, and of those, more than 17,000 have been seriously ill.

• Use insect repellents recommended by the Environmental Protection Agency (EPA) and the CDC that contain DEET, picaridin, IR3535 or plant-based oil of lemon eucalyptus.
• Use alternative methods such as Citronella-infused oils, Off!, or Skin-so-soft (Avon).
• Wear long sleeve shirts and pants to prevent exposure.
• Limit your time outdoors between dusk and dawn as they tend to bite during these hours.
• Support your local community mosquito control programs by checking with your local health department to get more information on mosquito control.

Bees, Wasps, and Hornets

Thousands of people are stung by insects each year, and as many as 90–100 people in the United States die as a result of allergic reactions. This number may be under reported as deaths may be mistakenly diagnosed as heart attacks or sunstrokes or may be attributed to other causes.

• Avoid fragrances (lotions, hair spray) as they are attracted to sweet scents.
• Don’t wear bright colors, particularly floral patterns, as this attracts them more.
• Be careful not to leave food and drinks out and uncovered.
• Hold still as rapid movement startles bees and encourages them to sting. Instead, try blowing on the bee to encourage him to move on.
• Wear clothing to cover as much of the body as possible.
• Wear a hat as bees are in a heightened state of readiness when they are close to hair or fur.

Ticks (Lyme Disease)

According to the CDC, more than 25,000 cases of Lyme disease among Americans will be reported this year.

• Avoid wooded or grassy areas with high moisture and humidity.
• Use a repellent with DEET (on skin or clothing) or permethrin (on clothing and gear only).
• Wear a hat and light-colored clothing, including long-sleeved shirts and long pants tucked into boots or socks.
• Perform Tick checks on the entire body, and if found, remove tick quickly with tweezers.

If any of the following symptoms appear after being bitten or stung, seek immediate medical attention for treatment:

• Difficulty breathing
• Rapid heart rate
• Hives
• Swelling to face, lips, tongue
• Dizziness
• Restlessness and anxiety

Learn more about how to prepare for summertime fun in the section Warm Weather and PH on PHA's website. You will find tips for staying cool and a link to an informative webinar.

What Does the American Thoracic Society International Conference Mean to PH Patients?

This week’s guest blog is from Debbie Drell (formerly Debbie Castro). Debbie is PHA’s Senior Director of Volunteer Services and also serves as the Vice-Chair of the American Thoracic Society’s Patient Advisory Roundtable (PAR). PHA’s Board and Scientific Leadership Council have been interlocked over the years through medical leadership positions on the American Thoracic Society’s Board and Assemblies. Next year, when Debbie rises to PAR Chair, she will also serve on ATS’s Board, marking the first time we have had a PHA staff person and caregiver on that board. She will offer an important voice at ATS, America’s leading association for pulmonologists. We congratulate her and welcome the opportunity.

I hope you enjoy this blog, and Debbie’s take on this important medical meeting.


PHA prides itself on bringing together medical professionals and the patient community under one organization and one mission. As a PHA staff member who works primarily with patients and caregivers on support groups, I am excited when the opportunity arises for me to participate in a medical conference and bring a patient and community perspective to the meeting.

Last month, I had a lot of questions mulling around in my mind as I prepared to attend the American Thoracic Society International Conference in Denver:

• How do patients benefit from conferences solely organized for medical professionals? 
• What takes place during these medical conferences and how does the networking and education trickle down to the patients they serve?

I wasn’t the only staff there, and I’ve been to medical conferences before. I usually represent PHA’s medical professional serving programs and stand at our organizational booth in an expansive (and expensive!) exhibit hall; but this time, I went “beyond the booth” and stepped into medical talks, networking meetings and sessions to experience the medical professional perspectives at the conferences.

I shouldn’t be here! I don’t have an MD or PhD on my name badge. I felt like a spy!

Debbie (left) and Kerri

But the ATS conference actually has patient-serving programs, too. In fact, they are so dedicated to the patient population, they have a special advisory board packed with leaders from organizations serving disease populations that share the ATS mission for pulmonary, critical care and sleep disorders. Organization representatives span from well-known diseases such as asthma to rarer diseases such as scleroderma, pulmonary fibrosis and – you guessed it – PH! That photo on the right is me with my counterpart (Patient Programs Director) at the Scleroderma Foundation. Kerri Connelly is super dedicated and her mom had PH and scleroderma.

This advisory board is called the Patient Advisory Roundtable (PAR, for short) and it was founded, in part, by a PHA founder! Judy Simpson was at the PHA “kitchen table” – a sister of a patient, but also a nurse. She brought the medical lens and perspective at PHA’s founding which really fomented PHA’s foundation of medical and patient unity under “one umbrella.” Many disease nonprofit organizations are patient-centered and their medical counterparts are separate entities, but that's not the case with PHA.

So it was natural and obvious for her to encourage the ATS to bring patients together, and both she and Rino were at “the other table” in Rockville, Md., when PAR was founded over a decade ago.

I’m a member of their PAR group and can tell you that they integrate patient perspectives and community voices in so much of what they do. At this conference, they hosted a day-long patient education event called “Meet the Experts,” which bridged a range of diseases with universal talks on topics such as integrative health, air quality, clinical research, pulmonary rehabilitation, genetics and environmental concerns. After two hours of all the patients coming together for these talks, the groups split up, and PHA hosted a panel talk just for PH patients and their families. More than 260 were registered to attend the overall event, and 50 PH patients and caregivers participated in PHA’s special PH session that featured PH specialists:

The PH session had the largest attendance of all of the PAR member disease-specific sessions offered.

Obviously, patients gained medical knowledge and support by connecting with other patients at this special meeting. But what about the general medical conference? More than 10,000 pulmonologists gathered in Denver.

How did PHA interact with them? How does this affect patients (if at all)?

First, we took advantage of the fact that a critical mass of PH doctors and nurses would be at this meeting – so we held special meetings for PHA medical leaders who were in attendance:

• PHA brought together the medical professionals involved in the editorial committee for Advances in PH, our quarterly medical journal. We are so much more effective with time during face-to-face meetings! 

• The many medical professionals who lead PHA’s Early Diagnosis Campaign came together as a committee and discussed how to leverage ATS and other networks to better raise awareness and educate medical professionals about PH. Among the highlights: the Early Diagnosis Subcommittee for Disadvantaged Patient Populations is currently in the process of submitting proposals for a White Paper. This subcommittee was created at last year’s Early Diagnosis Campaign all-committee meeting at PHA’s International PH Conference and has grown rapidly over the course of the past year.

• PHA’s President Rino Aldrighetti, PHA’s Medical Services Sr. Director Michael Patrick Gray, and PHA medical leadership met with the International Society for Heart and Lung Transplantation (ISHLT) leadership to discuss increased partnerships and the creation of a PH Symposium at their next meeting. They also met with medical leadership of PPHNET, a group of PH pediatricians, to discuss ways we can work closer together to achieve our common goals.

In addition, PHA and PH were highlighted during the ATS conference:

• …in an abstract poster session, titled “Depressive Symptoms are Associated with Patient Beliefs about Medication in Pulmonary Hypertension.” PHA work with patient focus groups held at Conference 2014 and around the Greater Washington/Baltimore area and contributed to the PCORI application with Johns Hopkins University. (This was one of many dozens of posters focused on PH, PAH and CTEPH.)

• …in an award ceremony! PHA’s Scientific Leadership Council Distinguished Advisor, Dr. David Badesch, won the William J. Martin II Award, and his excellence in contribution and service to patients was highlighted at multiple award ceremonies. 

As you can see from this very partial overview, these meetings help us increase medical professional awareness and education around PH, and this will ultimately, over the span of years, contribute to a shorter duration from symptoms to diagnosis and reduce the time patients spend in the cycle of misdiagnoses.

At these conferences, the results of research are often presented as well as significant reports of ongoing research.

PH was discussed in many sessions, including a presentation on the results of a clinical trial comparing initial combination therapy with ambrisentan (Letairis) and tadalafil (Cialis) versus monotherapy for patients with pulmonary arterial hypertension.

After all was said and done, I still went back for some “booth duty” and enjoyed seeing doctors donate to PHA through participation in a game show at Bayer’s booth and through a photo booth at Actelion’s booth.

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

PHA Brings One-Day Regional Conferences to Patients and Families

When I came to PHA in 1999, one of the first things that struck me was the excitement and anticipation surrounding our International PH Conference. Given the amount of work to produce these very special events, the reason PHA hosts them every two years, instead of annually, also became clear. However, that 24-month gap led to a dream by Board members: someday PHA should produce annual regional conferences, events where people wouldn't have to travel as far to receive the valuable education and networking opportunities that such meetings offer. 

It took almost a decade but in 2009, PHA had grown to the point where we were able to make the dream a reality. The vehicle we created is PHA on the Road, the patient component of PHA’s Medical Education Program, and in this guest blog post from PHA staffers Jodi Holland and Megan Mallory, we share the exciting plans for PHA’s seventh year of PHA on the Road. We hope you will join us in one of our four destination cities.

PHA is hitting the road again this year when PHA on the Road: PH Patients and Families Education Forums visits Atlanta on June 20, Philadelphia on July 25, Phoenix on Oct. 3 and St. Louis on Oct. 10. PHA on the Road recognizes that the pulmonary hypertension patient is the heart of a larger PH community that makes support, connection, information and education available to anyone who needs it. Since the program’s inception in 2009, these free patient-focused educational forums have featured interactive presentations, general sessions, time to meet other patients and caregivers, and exhibits. Forum speakers are leading PH healthcare professionals from the local area.

As Sarah Wisdom, from Yuma, Ariz.,
who has a family member with PH, shares, “[The forum was] very informative and [provided] great information for our whole family.” Patient Rebecca Talob, from San Diego, Calif., agrees, adding that the healthcare professionals who sat on session panels “were great and explained things so they were understandable and useable.”

Many patients also appreciate the opportunity 
PHA on the Road offers for networking. For some, these forums are the only time they and their family meet other patients. “It was very encouraging to know we're not alone,” Sarah notes.

General Session Topics at the Forums May Include:

• Diagnosis: How is PH Diagnosed?
• PH Treatments: What are the Choices and Which One is Best for Me? 
• Long-term Medical Management of PH
• What is on the Horizon? Clinical Trials and Drug Development

Breakout Session Topics at the Forums May Include:

• Emergency Situations
• Exercise
• Insurance Issues
• Intimacy Issues
• Nutrition
• Pediatric PH
• PH and Emotional Wellbeing
• PH and Other Associated Conditions
• Traveling with PH

To ensure that patients, caregivers and family members get the most out of PHA on the Road, the forums are offered free of charge and include lunch and a kids' room where qualified volunteers and staff keep an eye on children as they play games while their family members receive this invaluable information.

For more information about PHA on the Road or
 to register, visit www.PHAssociation.org/OnTheRoad, contact OnTheRoad@PHAssociation.org or call 301-565- 3004 x763.

PHA on the Road is a program of the PHA Medical Education Fund, made possible 
by unrestricted educational grants from Actelion Pharmaceuticals US (Diamond sponsor), Gilead Sciences (Platinum sponsor), and United Therapeutics and Bayer HealthCare (Gold sponsors).

PHA Offers Grants to Support PH Research

This week’s blog is an invitation to researchers to seek PHA funding through our multiple funding programs. It is also a celebration of what a committed rare disease community can do to advance knowledge that will lead to change and a better future. The research that PHA began to fund in 2000 has become building blocks for what came next and what will come tomorrow. Almost all of the money that PHA invests in this effort has come from members of our community who have organized special events and/or given generously themselves.  

A by-product of PHA’s research efforts was highlighted recently by Dr. Karen Fagan, Chair of PHA’s Scientific Leadership Council, when she studied where young researchers go after receiving a PHA research grant. Looking at our sponsorship of Career Development Awards with the National Institutes of Health, Dr. Fagan found that ALL researchers who were awarded this grant from PHA have stayed in academic medicine and importantly in the area of PH-related research and clinical care. This means PHA is not just funding grants. Our donors are making it possible and attractive for the most promising clinicians and researchers to continue in PH research.   

An important part of PHA’s mission is to find ways to prevent and cure pulmonary hypertension, and to that end, PHA has committed more than $15 million, over the last 15 years, to researchers seeking to better understand the disease. This year, PHA is making more than $500,000 available to support scientists who are looking for answers that could lead to better outcomes, new therapies and, ultimately, a cure for PH.

Thanks to PHA’s generous community members and historical partnerships, PHA’s Research Program provides support for PH research projects ranging from early, exploratory and developmental work to projects that facilitate mentorship and ensure a future of promising, innovative investigators in the field.

Our donors know that their generosity is leveraged to create even more opportunity for researchers to learn about and change the history of this disease. For example, PHA’s KO8/K23 award annually combines $312,000 in PHA contributions with over $500,000 from the NIH to create an over $800,000-per-year research program. Other PHA research programs are enlarged through similar matches.

In 2015, PHA’s Research Portfolio includes funding for new awards in:

• The first program focused on pediatric PH research 
• A grant that encourages investigators to explore novel ideas and avenues that could enhance the understanding of PH 
• An award that supports faculty-level investigators studying the diagnosis, pathogenesis, treatment or outcomes of PH 
• A grant that offers support to a recipient of a mentored career development or patient-oriented research grant awarded by the National Heart, Lung, and Blood Institute (NHLBI)

Researchers, be sure to apply for one of these grants. Patients and families, we hope you will share this information with the healthcare professionals in your lives. The 2015 PHA grant opportunities include:

• The Joel Belt Pediatric PH Research & Mentoring Grant 
• Cordelia’s Pediatric PH Research & Mentoring Grant 
• The Matthew and Michael Wojciechowski Pediatric PH Research & Mentoring Grant
• The Jerry Wojciechowski PH Proof of Concept Grant 
• PHA/ATS Research Fellowship in PAH
• NHLBI K08/K23 Supplemental Award

Learn more about PHA’s 2015 funding opportunities, including eligibility criteria and deadlines.

World PH Day... and Beyond

Today’s blog was co-written by PHA staffers Megan Mallory and Renee Hockaday. They make the point that awareness doesn’t begin and end on World PH Day. It is an everyday necessity if we are to succeed in our efforts to achieve better lives for PH patients and all those living and working with this disease.

Yesterday, on May 5, pulmonary hypertension patients and their loved ones asked their social media friends around the world to join their fight against a life-threatening disease too often dismissed as asthma. Our PH community did this to mark World Pulmonary Hypertension Day, and we joined in a global effort to educate people about PH and bring awareness to this disease.

The fight for awareness does not end after one day. If we are to succeed, awareness-building must continue today and every day. If you missed out on yesterday’s social media blitz, we ask you to join this awareness movement today.

We have designed a World PH Day celebration social media pin with the message, “PH: A disease of many stripes,” to symbolize the diagnostic challenges and how PH comes in different forms, sometimes without a known cause and in other cases, associated with other diseases. Please share this pin with your social media followers to lead them to PHAssociation.org to learn more about PH, find healthcare resources and/or make an online donation.

Please post this social media pin with the following messages on your website, Facebook, Twitter and other social media pages. Or if you want, create a message of your own. Here are our suggested messages:

Facebook:
Pulmonary hypertension may look like asthma. But on average, the survival rate for those untreated is 2.8 years. For World PH Day, share this message and World PH Day pin with 5 people you love. http://owl.li/LVTdB

Twitter:
World PH Day: the other May 5 celebration. http://owl.li/LVTdB @PHAssociation #PHAWorldPHDay #ILovePHA #PHAssociation

Did you know?

Yesterday also marked the beginning of PHA’s Days of Unity. Days of Unity are events and fundraisers hosted by individuals and organizations to raise money to fight PH. The events range from small walks hosted by PH patients to an endurance bike race fundraising effort led by Team PHenomenal Hope, which raised nearly $117,000 for PHA as participants in the endurance bike event Race Across America in 2014. Our 2015 Days of Unity events will conclude on June 20 after Team PHenomenal Hope completes its 860-mile Race Across the West from Oceanside, Calif., to Durango, Colo. Learn more and get involved

An Unexpected Gift for Support Group Leaders

In honor of World PH Day, Pulmonary Hypertension Association support groups got a special delivery. Gerry Fischer, president of PHA Europe, donated books written by his daughter, PH patient Maleen Fischer, to support group leaders. Maleen's book,“Hope Springs Eternal,” is about her PHight with PH. On behalf of all of PHA support group leaders and members, PHA thanks Gerry and Maleen for this thoughtful donation!

4 Stars... Building Longer, Better Lives

Shortly after I came to PHA as its first employee in 1999, I was invited to attend an annual meeting that the National Heart, Lung, and Blood Institute of the National Institutes of Health organized for nonprofit organizations in NHLBI’s area of medical interest.

I was pretty excited to attend. It was my first chance to connect with other disease associations. I was hoping to learn something from them … and I did. During the breakout sessions, conversation was dominated by one disease that had four separate organizations. They were all shouting at each other and not accomplishing much. To my knowledge, that’s still the case today.

The lesson of the day for me was that PHA needed to be built as much more than an organization. It needed to be a community, a community that reaches across all constituencies whether they be patient, caregiver or medical. It was important that PHA be managed to its mission by people who could work in solidarity across the many issues that will make life better for PH patients. Fortunately, that lesson was consistent with our founders’ vision.

Does that approach of solidarity in community-building work? Well, there’s a lot that could be written about what PHA has accomplished over the years, but that will be for other blogs. This one is about people looking at this organization from the outside.

According to its Wikipedia profile, Charity Navigator was launched in the spring of 2001, with the mission of helping "donors make informed giving decisions and enabling well-run charities to demonstrate their commitment to proper stewardship" of donor dollars. Initially, Charity Navigator provided financial ratings for 1,100 charities. Charity Navigator currently evaluates more than 5,400 charities in the United States.

Due to their comprehensive review process, Charity Navigator quickly emerged as the most respected of the nonprofit evaluators. PHA became one of those evaluated charities in January of 2004, receiving their highest rating – 4 stars.

In April of this year, PHA received our 12th consecutive 4-star rating. As Ken Berger, Charity Navigator’s CEO, writes, “Less than 1% of the charities we rate have received at least 12 consecutive 4-star ratings, indicating that Pulmonary Hypertension Association outperforms most other charities in America….”

Our score this year, at 98.55 (out of 100), was our third highest ever.

PHA has also been recognized for excellence by many other organizations – including the Better Business Bureau, GuideStar Exchange, Independent Charities of America, Great Nonprofits, National Organization for Rare Disorders (NORD) and the Center for Nonprofit Advancement – based on a variety of standards.

We have accepted these awards as the validation of a system that is essential to success in a small rare disease state. That is, we move forward because of the strength and support of a single and powerful community: people like you, bringing the “power of one” to the table for the good of many.

Four Days in March...

Usually, we see things in pieces. Once in a while, we are privileged to see those pieces come together… to understand the greater whole.

The PHPN meeting on Thursday

During the course of four days beginning on Thursday, March 26, I had that opportunity. We began on Thursday morning with a daylong meeting of the PH Professional Network (PHPN) executive committee led by Melisa Wilson, a nurse practitioner from Orlando, Florida. PHPN, founded in 2000, is a structure within PHA to involve nurses, nurse practitioners, physician assistants, respiratory therapists, pharmacists and other non-MD healthcare professionals working in PH. It has become an essential and highly valued body for education and networking in the field. There was much discussion at the meeting about the upcoming PHPN Symposium. This event, which PHPN organizes every two years, has become the largest PH meeting of non-MD healthcare professionals in North America. Among many other topics, PHPN leadership also devoted considerable time to discussing the development of publications and supporting the quality and accuracy of PHA publications.

As PHPN continued its work in the afternoon, the PH Care Centers (PHCC) leadership began their meeting to discuss the new registry PHA is currently building. The registry is based on an understanding that PHCC accreditations can only achieve full value for the PH community when we look across all centers to create and share data to better understand what works best for patients. One of the compelling reasons for PHA to take the significant financial risk of building this registry was a review of the cystic fibrosis registry results. Over a 24-year period (1986-2010) during which there were no disease-specific treatments, patient survivability increased by over 11 years. While other factors, such as earlier diagnosis contributed to this advance, there is no question that shared knowledge of what works, flowing through the work of the registry, was an essential pillar of this success.

The Registry Committee of the PHCC, led by Dr. Steve Kawut of the University of Pennsylvania, is working to build a similar pillar in PH. It was gratifying to see that leaders of five registries working in PH came to this meeting to discuss creating a consistency of structure that would allow patient data to be used in multiple registries. If successful, this will allow more rapid development of knowledge in the field.

So that was our first day…

We began Friday with an all-day meeting of PHA’s Scientific Leadership Council (SLC). This international and globally-regarded group of medical experts in the field oversees PHA’s entire medical structure. This includes research, our multiple medical education programs, the development of our accreditation and registry structures, and the accuracy and relevance of the medical information we provide to patients and their families.

The SLC meeting had much discussion of the rapid progress we are making on the new PH Care Centers accreditation program. With a target of 60 accreditation reviews by the end of 2015, we have already completed 20, with another 20 submitted and being processed for more information or site-visits, and an additional 17 online applications in process of completion. A little over three months into the year, we are ahead of schedule.

Research updates related to PVDOMICS

A highlight of our research discussion was PHA’s new research partnership with the National Institutes of Health. This relates to the PVDOMICS program, the importance of which was described in a guest blog by Michael Gray.

While the SLC meeting continued, PHA’s Board of Trustees Committees began meeting in the early afternoon. The Development Committee discussed how to fulfill their obligations to help raise the funds for PHA to fulfill its mission. Harry Rozakis, a CTEPH patient, chairs the Development Committee.  

The Governance Committee also met. They are chaired by Laura D'Anna, a former PHA Board chair who lost her sister to PH. This Committee reviews PHA's bylaws - our organizational rules - and works to make sure the Board functions well to oversee all of the many issues in which PHA is involved.

The Strategic Planning Committee, chaired by John Hess, the parent of a child with PH, is charged with overseeing the development of our multi-year plan that tells us where we want to go so we have a direction to steer the organization.

A new committee also met: the Search Committee. They are charged with finding my successor as President/CEO when I retire after PHA's International PH Conference in 2016. Their first task will be to find a search firm that fits well with PHA's goals for the position. PHA's Board chair-elect, Roger Towle, the father of a PH patient, is leading this important effort.

To be clear on those goals, PHA's Board has to have strong focus. To assure that focus, they had an all-day session on Saturday with a consultant from Board Source. Board Source is the most highly regarded nonprofit organization dedicated to nonprofit management and governance issues. PHA is a pretty complex organization these days, much more so than when I started as the first staff person 17 years ago. Does the Board seek someone with a medical background, one in organizational development, corporate or nonprofit management expertise, or the ability to raise funds? Those (and more) are the kinds of questions that will define the next stage of PHA's growth.

The Saturday session was very productive in defining the Board conversation and led us into an abbreviated Board meeting on Sunday where many of PHA's medical and patient-serving programs where presented and discussed. The Board is led by Steve White, an Episcopal priest with a doctorate in health management. Steve lost his daughter to PH.

I should also mention that the Board had the opportunity to meet with over 100 Texas support group leaders and members who had come to the Dallas Omni where PHA will have our upcoming 2016 International PH Conference and Scientific Sessions. It was a great opportunity for the Board to meet our local hosts and share our common excitement about the Conference that will take place in PHA's 25th anniversary year!

In closing, I've always felt the all-volunteer PHA Board is a pretty good reflection of the PH community of patients, caregivers and medical professionals. The members put in a lot of time dealing with the many complex issues a rapidly growing organization must face. Seeing all the meetings I described flow from one to the other during our recent four-day span and understanding the interlocks between those meetings, my view is that PHA is not a series of activities but a single organization that connects those activities for maximum impact for the good of patients. It has always been my privilege to work for PHA.


WATCH for Rino's next blog: PHA's 12th straight Charity Navigator 4-Star rating.  

Make the Halls of Congress Ring on National PH Call-In Day

This week, PHA’s Advocacy and Awareness Director, Katie Kroner, is our guest blogger. Katie describes an important – and easy – way we can make a real difference in the lives of PH patients (and their families).

PHA staff make calls during
National PH Call-In Day 2014

April 16 is National PH Call-In Day – a day to make the halls of Congress ring with the PH community’s voice. You can take part in less than 10 minutes, without leaving your home.

Why me?
A friend of mine was talking with a staffer in Rep. Chris Van Hollen’s (D-MD) office last week. When she mentioned PH, the staffer jumped in and started to tell the story of a young woman who visited his office almost a year ago and shared her experience of being diagnosed while working in Afghanistan. He told me that he'll never forget the way she described her pain from having pulmonary hypertension: "I could breathe in, but my lungs didn't feel like they were getting any oxygen." He remembered her words a year later and said his boss, Rep. Van Hollen, remembers them too.  He was telling PHer Jessica Armstrong's story.

Everyone whose life has been touched by PH has a story to tell and your story can make a difference. Join PHers across the country on April 16 and make sure that every Member of Congress knows about PH.

How can I help?

PHers Jessica Armstrong (left) and Katie Tobias
advocate to the Food and Drug Administration

On April 16, PHers across the country will call their senators and representatives and ask them to co-sponsor the Patients’ Access to Treatments Act.

The bill aims to limit patients’ out-of-pocket costs for complex, life-saving medications by capping possible co-insurance. For PHers, that means a limit on what your insurance could require you to pay for infused and inhaled PH drugs. The bill is specific to commercial insurance, but its success would likely impact Medicare and Medicaid too.

Learn more and take action.

What Should I Do on April 16?
Follow these steps to add your voice on April 16:

1. Use PHA’s tools to look up phone numbers for your senators and representatives and view a call script. All you need are your street address and zip code: www.PHAssociation.org/ActionAlert/PHNationalCallInDay 
2. Make the calls! Ask your senators and representatives to co-sponsor the Patients’ Access to Treatments Act.
3. Tell PHA … and your friends! Don’t forget to fill out the call feedback form that appears after the talking points. PHA will use this information to help hold your Members of Congress accountable. Then, post the alert to social media or email it to your friends. Anyone can join the “phight” on National PH Call-In Day!
4. Congratulate yourself! Thank you for adding your voice to this critical issue!

For more information, or to join PHA’s grassroots advocacy network, contact Angelia at 301-565-3004 x753 or Advocacy@PHAssociation.org.

PVDOMICS and What It Means for the PH Community

Since 2000, PHA has created five distinct research programs through which we have committed almost $16,000,000. Each year, through those programs, we support about a dozen research projects. Each year, through our partnerships, our donors' research dollars are doubled.  

PHA's most recent research partnership - our second with NIH - will help expand a new program that is generating more excitement among researchers than anything we've seen before. PHA's $500,000 commitment, while adding 2 percent to the overall budget, is allowing the program to expand by 20 percent. We feel that's a great investment!

This week, I'm pleased to introduce PHA's Senior Director of Medical Services, Michael Gray, as our guest blogger. He explains the new PVDOMICS program and what it means to the PH community.  

As I turn this page over to Michael, I should tell you that PH is the first disease that will be studied in this way. NIH has told us we are preceding the diseases that will follow because of the strength and structure of the PH community. As part of this community, you are making this important advance possible.

"The only simple truth is that there is nothing simple in this complex universe. Everything relates. Everything connects"
-Johnny Rich, The Human Script

For centuries, scientists have been fascinated with how traits are passed from one generation to another. Significant progress has been made in this understanding, from Gregor Mendel’s discovery of the laws of inheritance with pea plants in the mid-nineteenth century to Dr. Marshall Nirenberg decoding the language of DNA at the National Institutes of Health (NIH) in the mid-twentieth century. Despite our increased understanding, we still have not solved how genes and changes to your genetic code called “mutations” affect most diseases, including pulmonary hypertension. A new initiative through the NIH, the “Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics” (PVDOMICS) program, seeks to change that for this particularly devastating disease state.

Mutations, or accidental changes in the DNA code, can occur frequently as cells duplicate, and can even be passed onto the next generation when this mutation occurs in a sperm or egg cell. Mutations sometimes will cause no changes to the individual, sometimes will cause harm to the individual, and sometimes can even provide a benefit. Genetic changes like this have been directly implicated in a number of diseases, including cystic fibrosis, sickle cell anemia, Tay-Sachs disease, and phenylketonuria. Genetic changes have also been implicated in PH, most famously with the discovery of the “bone morphogenetic protein receptor, type II” (BMPR2) gene. However, we don’t know exactly how changes in the BMPR2 “code” lead to PH. We know that BMPR2 genetic mutations are present in more than 70 percent of people with hereditary PAH and 25 percent of people with idiopathic PAH; but having the genetic mutation does not mean you eventually have PAH.

Think of DNA like letters in a book. Individually, these letters have no meaning; together, they tell the story that makes you, you. This story can be changed in a number of ways. Certainly letters and even entire words can be added, removed or changed, which might or might not change the meaning of the story. But direct changes to the letters on the page is only one modification that can have an impact on how you read the story. Maybe your book has a sentence that has been highlighted, or bolded; the words and the meaning of this sentence have not actually changed with this modification, but it has been emphasized in a way that has consequences in context. Maybe your book has a stain on one of the pages masking several words; the words are still there, but hiding these words could change the entire meaning. These different types of changes to how the “story” of your DNA is told make up a web of interactions that can have consequences nearly as drastic as finding one disease causing “gene.” This web includes the molecules that take chapters of your DNA “story” from the nucleus to your entire cell (called RNA), the proteins that are made by this RNA and used by your entire body, and how your cell uses energy to name just three strands of this web.

The NIH in Bethesda, Md., is the world’s largest biomedical research institute, with more than 5,000 scientists working on a number of scientific advancements with basic scientists, physician scientists, patient advocacy organizations, pharmaceutical companies and, of course, patients and family members themselves. The NIH has a long history working in pulmonary hypertension, beginning more than 35 years ago with an early, important registry characterizing the devastating nature of PAH. Since then—with significant advances in the field including 12 PAH-targeted therapies, a successful surgical therapy for CTEPH, and a medical therapy for a specific form of CTEPH—the NIH continues to invest in successful PH research. The most recent demonstration of this is the PVDOMICS program.

PVDOMICS seeks to ask research questions about PH in a way that will lead to a better, more complete understanding of the disease and to developing therapeutics that are more precise by building a clinical research network of seven centers across the United States. They will be performing a comprehensive analysis on around 1,500 patients with all types of PH (WHO Groups 1-5), collecting a range of clinical information; blood for analysis of genetics and the molecules that turn on and off expression of these genes; and imaging studies normally used in the clinic to better understand the difference between normal and diseased lung vascular tissue. There are many benefits from analyzing these very different types of information together, according to the NIH. If the investigators are able to develop this robust, more complete understanding of why some people develop PH and others with similar risk factors do not, more sensitive measures of diagnosis, more uniform responses to medications, and new biomarkers of disease worsening could be discovered. It is anticipated that most WHO Group 1-5 pulmonary hypertension patients who want to participate in this research study may be able to enroll.

The Pulmonary Hypertension Association is a proud partner with the NIH in this important study, and in 2014 awarded a five-year grant of $500,000 to the program to support one of the clinical centers in collecting data from 250-300 patients. For more information on the PVDOMICS program, please see the Pathlight article on PVDOMICS from the winter 2015 issue.

Cybercondria and Pulmonary Hypertension Awareness

For this second guest blog post in our series of guest posts from PHA staff members, Jessica Armstrong, PHA’s Early Diagnosis Campaign Manager and a CTEPH patient, looks at an interesting Internet phenomenon called cyberchondria and what it could mean for pulmonary hypertension patients.

Last summer I came across a new term that I'd never heard before: Cyberchondria. As you might guess, it is defined by Wikipedia as “the unfounded escalation of concerns about common symptomology based on review of search results and literature online.” Put simply, a cyberchondriac is that person we all know who gets a cold, googles their symptoms, and becomes convinced they’ve contracted the bubonic plague. Although funny to think about, what's interesting is the sheer number of articles and guides that have become available geared toward advising healthcare providers on how to calm the cyberchondriac patient.

For patients with pulmonary hypertension, this phenomenon of the Internet age comes with a challenge: How does a rare disease patient differentiate him or herself from the cyberchondriacs of the world? The answer is to be informed.

We've already learned the value of educating ourselves, of being good investigators, and in being knowledgeable about our health. We’ve used this knowledge in advocating for ourselves, and frankly, that's how many of us arrived at the point of being diagnosed with pulmonary hypertension. By now most of us have learned that the need for self-advocacy doesn’t stop at diagnosis, which is why so many of us have continued our efforts to learn as much about pulmonary hypertension as we possibly can. This includes learning our WHO group classification, being an active participant in our own health, and hopefully staying organized via the Empowered Patient Toolkit.

Today, with 12 PH therapies available, it becomes more and more likely that we’ll have to deal with other health conditions and concerns in addition to our pulmonary hypertension, and it remains important that we continue to be good self-advocates and good stewards for health, while at the same time not falling into the trap of jumping to extreme conclusions (which is easy to do when you already have one rare disease).

Over the next few weeks, PHA will be launching the newest addition to the Early Diagnosis Campaign, our Patient Self-Advocacy Toolkit at www.SometimesItsPH.org/PatientSelfAdvocacyToolkit (not live yet). Unlike PHA’s existing Empowered Patient Toolkit, this resource is intended for any patient experiencing unexplained symptoms.

The goal of the Patient Self-Advocacy Toolkit is to provide information and tools for patients who are at that point that many of us were at shortly before we were diagnosed with PH - experiencing unexplained symptoms, uncertain of what’s happening, full of unresolved questions and concerns. Some of these patients may have pulmonary hypertension and some may not, but the goal is really to equip them to figure out what the problem is and to help them be organized and prepared as they embark on the journey toward diagnosis. We hope it will be something you’ll be proud to tell your friends and family about.

And for those of us who have already received our PH diagnosis, we hope this resource will prove a valuable tool as we approach other health concerns along the way. In particular, I’m excited that the Toolkit will provide a guide to finding credible health information online. This resource, which will be found under the ‘Be Informed’ section, will offer tips that will hopefully make it easier to identify good quality resources on the web. We hope that this resource will be something that you continue to utilize not only in regard to diagnosis of new concerns, but also as you continue to learn about your pulmonary hypertension.

And the good news is, if you’ve suffered from cyberchondria in the past, there will soon be a cure.

Let's Work Together to Advance the PH Cause

Over the next several weeks, I have invited PHA staff to offer guest blog posts about the work they are doing on behalf of the PH community. This first guest post in the series comes from Kim Lamon-Loperfido, PHA’s Patient & Caregiver Services Manager. Kim coordinates the Tom Lantos Innovation in Community Service Awards, and since its launch six years ago, the program has held true to the goals of supporting good ideas that can make a difference to the PH community. The Lantos Grants help patients and family members bring those ideas to reality for the betterment of all​.

Carmen Lozada-Bruno (right) received a
Lantos grant to distribute Spanish language
posters in Puerto Rico with information on
symptoms, diagnosis and the causes of PH.

I’m looking forward to another successful year with the Tom Lantos Innovation in Community Service Awards program this spring. This program allows members of the PH Community to fund and bring into reality their ideas. Last year we had 25 applicants and 13 funded projects.

Some fabulous projects came from 2014 like Brittany Evans, who along with the Generation Hope advisory board, created notepads printed with PHA’s most important web links for both patients and healthcare professionals. Her first distribution of this project took place at one of the healthcare professional meetings at PHA’s 2014 International PH Conference. Another project by Carmen Lozada-Bruno of Puerto Rico involved distributing Spanish language posters with information on symptoms, diagnosis and the cause of PH across Puerto Rico’s pharmacies, emergency rooms, hospitals and government offices. She received nothing but gratitude and positive feedback throughout the process.

I have had conversations with several community members who have experienced the spark of inspiration, but aren’t quite sure how to turn that spark into a full project for their application. Through these conversations, we have explored the primary goal they are trying to work toward, and from there, we’ve filled in details on how they can reach that goal. I’ve encouraged them and I encourage you to watch our helpful webinar on the process, which takes you from brainstorm to application and, finally, to successful project implementation. But I’m also here to help through any part of the process, and I can connect you with previous winners who are more than happy to mentor you in the process.

This program is now in its sixth year of funding projects to advance our shared cause. It provides grants of up to $5,000 each, and both domestic and international applications are welcome.

Projects over the past five years have raised awareness of PH, created PH resources, and educated others about PH. Those wishing to apply for funding should know their projects can also replicate the efforts from previous Lantos Awards, for example introducing a project to a new audience or adding a new component.

The grant program is named for the late Rep. Tom Lantos, a longtime congressman from California who was the original sponsor of our bill in Congress after his granddaughter was diagnosed with PH.

For more information or for help with your application, please reach out to Lantos@PHAssociation.org. I am so excited to work with you as you turn that spark of inspiration into a full-blown project to advance the PH cause. Although applications are due by March 25, 2015 – let’s chat today!

PHA Accredits 11 New Pulmonary Hypertension Care Centers

When I came to PHA in 1999, there were about 100 doctors in the U.S. treating pulmonary hypertension. Today there are more than 10,000. While that growth is good news, it’s also a call for clear standards to improve quality of care for patients. That is the purpose of PHA’s new PH Care Centers (PHCC) accreditation program. The program was launched on Sept. 27, 2014, after three years of organization and development by committees of leading medical professionals.

Today's news is that PHA recently accredited 11 Pulmonary Hypertension Care Centers, bringing the total number of PHCCs to 17, in a program that seeks to improve overall quality of care and ultimately improve outcomes of patients with pulmonary hypertension. This includes promoting improved diagnostic and treatment standards in the field of PH, while creating unique partnerships between accredited centers and PHA.

PHA is still a relatively small disease organization. For us to now be accrediting PHCCs is a great accomplishment. I believe this comes from our unique relationships with medical professionals and patient populations working together to find a cure for this devastating disease. We have come a long way in changing the trajectory of this disease and improving the lives of patients in the race for a cure.

These first phases of accreditation are open to centers applying as Comprehensive Care Centers (CCC). We expect that to result in more than 90 applicant Centers. (We are currently over 35.) In 2016, applications for Regional Clinical Programs (RCP) will begin to be accepted as RCP criteria requires collaboration with regional CCCs. By linking accredited CCC and RCP centers together, the program will improve knowledge among professionals and patients about where to seek quality care.

PHCC accreditation signifies that a PH program has demonstrated a dedication to making a proper diagnosis and has the capacity to appropriately and comprehensively manage PH patients through a set of criteria. Both CCCs and RCPs will be accredited by PHA after undergoing a thorough evaluation and satisfactorily meeting the respective standards set forth in the PHCC Criteria. In accordance with the program’s vision, all PHA-accredited PHCCs will be expected to uphold the principles of delivering appropriate and effective care, offering research participation opportunities and providing appropriate support to PH patients.

To see the full list of nationwide accredited PHCC Centers of Comprehensive Care, please visit our website.  In looking at this information, it's important for everyone to understand that this process is just beginning. Many excellent Centers have not yet been reviewed or begun the complex application process.  It will take well over a year for PHA to work through national-level accreditations, after which Regional Center accreditations will begin.

The PHCC online application portal was also launched this month with high interest in the program resulting in a steady increase of application submissions. Many site reviews are being scheduled for the coming months. Centers interested in applying can access the online application at the PH Care Centers Site Application Portal.


For additional information on PHCC and the application process, go to: www.PHCareCenters.org or email PHCC@PHAssociation.org.

Please join me in congratulating the newly accredited centers. With the hard work and dedication of these Centers, the diligence of the medical community and patient population to get the best care possible, and the work of our staff at PHA to coordinate initiatives and raise awareness about PH, we are closer to a cure than we have ever been.

Defining the New Normal

I’ve been interacting with PH patients for a long time – about 15 years now – so you might think I would no longer be amazed by the strength, creativity and perspective they bring to their disease. But I am. Case in point: Colleen Brunetti, the first Generation Hope member to serve on PHA’s Board of Trustees, has published an honest and thought-provoking book about her experiences living with PH, Defining the New Normal: A Guide to Becoming More than Your Diagnosis.

Writing a book is no small chore, and in addition to living with PH, Colleen is a wife, mother, certified holistic health coach, teacher and fundraiser. Yet she made the time and found the inspiration to produce this book which takes those with all forms of chronic and critical illness step-by-step through the areas of self-care that Colleen believes are crucial to patients’ overall well-being. Learn more about Colleen’s motivation to write the book and how you can get a copy of your own.