Empowered by hope: A PHA Diary: Debbie Drell

Wednesday, August 5, 2015

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:

And all the support groups who shared:

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

Wednesday, June 3, 2015

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.