Let me breathe...

There is so much happening during PH Awareness Month.

...And it's happening all around the world.  Today, I received a Facebook friend request from a young man in South Korea.  When I took a look at his page, I was amazed to see a promotion of PHA's upcoming (Nov. 10) webinar - Improving Patient Outcomes and Early Diagnosis: An Examination of the REVEAL Registry - right at the top!  The presenters will include:

• C. Gregory Elliot, MD, Intermountain Health Center (Facilitator)
• Vallerie McLaughlin, MD, University of Michigan
• Lynn Brown, MD, PhD, Intermountain Health Center
• Richard Channick, MD, Massachusetts General Hospital
• David Badesch, MD, University of Colorado at Denver

Also today, Megan Mallory, who leads our Publications Department, got a lovely note from the Co-Leader of the Toronto Chapter of PHA Canada.  Ruth Dolan, who had attended a webinar on Expression of Well Being led by Megan and Janet Stone, wrote:

I thoroughly enjoyed this webinar and do look forward to attending more in the future. I mentioned during that session that I would be participating in an experience at our local library called "Get a Life- Human book Festival" and I said I would get back to you about the experience so you might choose to share it with other PH Friends.

It was an amazing experience and for me an opportunity to share my PH Journey with my youngest daughter Emily, with those who came to the library and "took me off the shelf" to "read" me.

My "Book" was called "Let Me Breathe". just like the PH Song written by my brother, J. Paul Adams for his niece and dedicated to her and all PH patients [see below]

There were about 7 human books at our local library branch and there were four libraries through out Simcoe county participating, one for the four Saturday's in October. For me it was yet another opportunity to make people aware of PH in a very personal way.

About 30 min. was allowed for each reader but we always seemed to spend at least 40 -45 min. together; as my reading sessions had a break between each one I was able to spend the extra time with the readers. My first reader was an author and a very caring listener. She has since asked me if I would like to write my story to be included in a book of other women's stories....very tempting.


I took our PH Canada and Toronto PH brochures along to give to my "readers' so they had something to take away and do further research about PH. The local media was also at the even and interviewed some of the "Books".

Although it was a "small" audience with which to share our PH Journey it was one that I would gladly do again because of the personal nature of the sharing and I think and the impact it had on the "reader". I feel that just as when I read a great book I love to share it with friends, I also feel that my readers will hopefully share the experience of reading "Let Me Breathe" with their friends and thus making even more people aware of Pulmonary Hypertension.

On another note:

Our Toronto PH Fundraiser and awareness campaign is taking place this Saturday. We have the Let Me Breathe Vegas Night and are also using that occasion to gather real and virtual hand prints that will go on a large banner or several I hope , to our capital in Ottawa on the 29th of November. Feel free to add your hand print to our efforts by using the link below from our Canadian Website.
http://www.phacanada.ca/index.php?cID=975


All the best to you and to all our American PH Friends. I am looking forward to seeing you again in Orlando in 2012

Here is Let Me Breathe, written by J Paul Adams, Ruth's brother...



It can also be found on the PHA Toronto website.

First Media in Awareness Month

I just watched Patty Kaiser's interview on St. Louis TV station KSDK.  Meet Me St Louis host Julie Tristan filmed and edited Patty, using live and archived footage that ranged from the Blue Lips campaign to  2011 PHA Dinner and Wine Tasting Fundraiser coming up on Saturday November 12th. It was a great start to Awareness Month. Watch the Video

After her interview, Patty wrote:
Patty is not alone in getting awareness month going...

Even through I am terrified of sitting in front of a camera and being interviewed, I am so passionate about PH awareness, and getting the message, out that I am willing to "put myself out there" so others may not have to go as long as I did before finally being diagnosed. 

Alex Filipse hit a proclamation trifecta with proclamations from Takoma Park (the city where she lives), Montgomery County (the county where she lives) and Maryland itself (the state where she lives...and proclamations are starting to roll in from around the country.

Gerri Brown suggested...

Here's an idea that we may want to try on PH Awareness day or Month - change your last name to one of your meds.

Now, she's Gerry Viagra-Brown on Facebook and we're seeing the idea move like wildfire through the community, raising questions and curiosity that are giving a great opportunity to talk about PH.
This year's Awareness Month theme - The Power of One - is leading to benefits for many!

Welcome to Awareness Month!

The Power of One

Awareness Month is here! To kick it off, here’s a post from Katie Kroner, PHA’s Director of Advocacy and Awareness. As you’ll see, there are Awareness Month activities going on around the world. I hope you’ll add your voice to the conversation! 

This year’s Awareness Month theme, The Power of One, reminds me of lots of remarkable things about the PH community. We’ve worked together to end isolation, growing from a community of a few to a community of thousands. Our advocacy has brought PH to the attention of the medical and pharmaceutical communities, taking us from zero treatments to nine—more than only two of the 7,000 identified orphan diseases. Most of all, The Power of One reminds me of the everyday heroes — each of you – without which we could not be where we are.

The first National PH Week was held November 2-8, 1997. PHA’s historical records note some important milestones during those early Awareness Weeks including growth of the support group network to 35 groups in 1998. (We now have 235.) Since 1997, PH Week has become PH Awareness Month and reaches across the country and around the word but its individual people, growing ideas into successes, that still make the PH community what it is. Here are just a few of the big ideas that will make Awareness Month 2011 a huge success:

·         Each year, the PH community requests Awareness Month Proclamations from their local elected officials, but when Doug Taylor issued a challenge for some state (any state!) to beat South Carolina’s record of 11 proclamations in one year, he started something big. On Facebook alone, 98 people have responded to Doug’s challenge. Perry Mamigonian has inspired Support Group Leaders across California to take on the challenge, but proclamations are also coming in from Maryland, New Jersey, Tennessee, Nebraska…you get the picture.

·         November boasts nearly twenty special event fundraisers aimed at supporting PH research and PHA programs. Organizers took their unique ideas and passions and turned them into community endeavors. Nicole Cooper is turning her first-time event vision into a reality with the Vision of Hope Gala in Maryland on November 12. Other first time events include a Zumbathon and chili cook-off. Many organizers have multiplied their impact by connecting with the media to promote their event and raise awareness of PH in their communities.

·         On November 1, more than 400 people used Facebook and other online tools to spread the word about pulmonary hypertension worldwide. One caregiver from Germany wrote to say that he has posted a PH web banner on his software blog, which receives about 2,000 visitors a day. That’s the power of one to raise awareness about pulmonary hypertension.

Individually, we are powerful. Together, we are unstoppable. How will you put your awareness raising power to work this November? Learn more and join our fight against PH!

PHPN...a building block to a better future

The more that's going on...the less time there is to write about it. 

Since the Friday before last, PHA has had meetings for our Scientific Leadership Council, medical journal Editorial Committee, Research Committee, PH Professional Network (PHPN) Executive Committee, and PHA's Board of Trustees and its various committees.   I'll try to get time to blog about some of these meetings but I'll focus today on the largest of the meetings, the 2011 PHPN Symposium.

The Symposium is a three day annual meeting that takes place every two years.  Planned by PHA's allied health group, PH Professional Network, the event is an opportunity for education and networking in this rapidly growing field.  In recent years, the event has also supported the growing strength of this community of PH nurses, pharmacists, respiratory therapists, NPs, PAs, social workers and others who support the treatment of PH patients.

The Symposium is always held in the Washington, DC area where we begin with Advocacy Day.  Almost 100 of this year's record 465 Symposium registrants participated.  Not only did they have an important and worthwhile experience talking to their elected representatives on Capitol Hill about the Pulmonary Hypertension Research and Education Act but they bring that experience back to their medical centers and patients.

This year a special target for Symposium was increasing the number of abstracts and posters presented.  This is a shared learning opportunity and one for which PHPN leadership wanted to build the skills needed.  In order to do this, they knew they had to teach.  They created a new section of the PHA website on submitting an abstract for a poster presentation.  One of their founding members, Lisa Wheeler, research coordinator at the Vanderbilt University PH Center recorded a webinar, guidelines and samples were posted and mentoring was offered.  A Symposium that had no abstracts two events ago and very few at the last Symposium grew to 40 at this year's event.  The value of information exchange was huge not only for this meeting but is now a skill that exists within the community and will grow and be used at future symposia and other medical meetings for the benefit of medical knowledge in the field.

The educational program is always rich, This year's Symposium - chaired by Melisa Wilson, APRN, BC - with 60 expert presenters   delivering an information-filled program was no exception.  A real highlight was a plenary session entitled A New Dimension of Hope: Virtual Catheterization Lab presented by Russel Hirsch, MD, Cincinnati Children's Hospital and James Tarver, MD, Orlando Heart Center.  Rather than slides, Dr. Hirsh used a specially created animation of a heart catheterization.  It was a wonderful teaching opportunity.  Motivation is also a powerful Symposium element and this year's keynoter, Jessica Lazar MPA, PA-C , was a huge hit, telling her story of the Kilimanjaro Climb she and Drs. Benza and Frantz did for PH awareness. 

PHA had all the sessions filmed and they will soon appear on PHA Online University, enriching teaching opportunities for medical professionals around the world.

Since the first Symposium in 2003, I have watched these meetings grow from 60 attendees to, this year, well over 400.  They have become not only a cornerstone of medical education for allied health professionals in the field but they have also sparked stronger collaboration that is now taking place every day online and face-to-face.  Seeing the level of commitment and compassion, I have no doubt that PHPN has become an essential building block, leading the way to a better future for patients and their families.

Making a difference...

In recent years, our friend Hall Skara has been building PHA Norway into an effective voice for pulmonary hypertension patients in his country.  It's a great effort in a nation where there are not many diagnosed patients.

On September 25, PHA Norway held their national conference.  the event generated good  press coverage and and the 11:30 minute TV interview below.  Many thanks Hall for subtitling the interview in English!



I really enjoy blogging about PHA Norway.  They are a great example about how even a small community of patients, family members and medical professionals can make a difference.

Learn more about how PHA Norway got started and about the international PH community.

Risk to reality...

Today, I did something that astonished me.

I signed a licensing agreement that will help PHA bring medical education to India in an important new way.

Why this was astonishing goes back to 2000...

On the second day of PHA's Fourth International Conference - June 24, 2000 - in the atrium of the Wyndham Hotel, Dr. Bruce Brundage, Craig Mears (then of Gentiva) and I met to talk about the possibility of publishing a medical journal.

Bruce had the reasonable concern that any publication not be "a throwaway" for the doctors who would receive it.  I saw the impact it might have but wasn't sure whether there was enough content to sustain a medical journal over the long term.  Craig was willing to talk to his company about the initial funding.

It was a different time then. There were only about 100 treating physicians in the U.S. - and they were seeing about 3,000 patients.  Only one complex and still relatively new treatment had been approved by the FDA at that point, not the nine we have today.

Several months after the Conference, Dr. Brundage (then Chair of PHA's Scientific Leadership Council) convened a telephone conference to talk about the possibility.

The group understood the potential value and decided to move forward.  Dr. Tapson at Duke was invited to become the first editor and we were off and running.  Advances in Pulmonary Hypertension: the Official Journal of the Pulmonary Hypertension Association published it's first issue in 2002.  It was a big name for a then small organization.

We were taking a huge risk for a potential large benefit. At the time of the Chicago meeting, PHA was an organization that just a year earlier had a total annual budget of $137,000.  Now we were taking on the responsibility for a new project that would cost over a quarter of a million dollars per year.  Some might say we were crazy.

As it turned out, the risk more than paid off.  Advances has published regularly in the ten years since then, reaching over 40,000 cardiologists, pulmonologists and rheumatologists four times each year, providing leadership and education from world recognized experts.  The field has grown considerably since Advances began publishing and I'm confident in saying that this journal has played an important role in that growth.

Now back to India... About 10 percent of the publication's distribution is sent to physicians in 63 nations outside the U.S. and international interest has been growing.   Over the past year, PHA has received several unsolicited requests to license international distribution and translations of Advances.

The editorial committee, led by Dr. Erika Berman Rosenzweig of Columbia University has carefully worked out a template agreement for international licensing that protects the integrity of content and allows, with PHA's editiorial review and approval, the addition of some additional content relevant to the particular nation.  Leadership of PHA's Scientific Leadership Council has approved the template.

Today, I signed our first agreement.  An Indian edition of Advances will soon be published. 

May it be as valuable to Indian physicians and their patients as Advances has been in the United States...and may it be the first of many such agreements.

People make change...

We usually write about end points...the things that happened.  The reality is that the outcomes and results we celebrate are most often built upon long and hard work.  Today, my blog is about a year's long process that, in truth, began quite a bit before the 2006 event with which I open and will no doubt continue long after this month's victory with which I close...
In 2006, Carl Hicks (then PHA board chair-elect), Dr. Ramona Doyle (then at the Vera Moulton Wall PH Center at Stanford, Congressman Tom Lantos (who has since passed), our Washington representative Gavin Lindberg, myself and others went to the Department of Health and Human Services to meet with their leadership and discuss our concerns about the then new PH transplant standards.  The new rules moved PH patients lower on the priority list...based on interpretations of information that our medical leadership and PHA disputed.

HHS was engaged and the meeting led to follow ups with the United Network for Organ Sharing (UNOS).   UNOS is the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government.

PHA's medical leadership worked hard to get it right and to build some appropriate flexibility into the system for PH patients.  Their interest led to increased activity within the influential International Society of Heart and Lung Transplant (ISHLT) and, for the past several years, these doctors have been building a strong and active assembly within ISHLT and continuing to engage UNOS.

In early-August, PHA circulated the following message to over 600 physicians who are members of the PHA medical group, PH Clinicians and Researchers.  (The LAS mentioned in the note refers to the Lung Allocation Score.)

Physicians PHA works with, who are also involved with the REVEAL Registry, gave a presentation at the ISHLT in 2009. Following that, UNOS invited them to speak to the thoracic council about their results on the LAS score. Dr. Ray Benza was then asked to be on the thoracic board and began to advocate changes in the LAS for PH patients. Dr. Benza reports that the Thoracic Board - particularly its current chair, Mark Barr - was very receptive. UNOS’ new policy on submitting lung allocation score exception requests for candidates diagnosed with PH appears below.

Dr. Benza has asked us to circulate this to the PH medical community as quickly as possible since it may impact current and future patients awaiting transplant.
PHA thanks and congratulates the physicians who have been building a rapidly growing and effective PH section within ISHLT, including Drs. Benza, Frantz and Park and others and Dr. Benza for his work on the UNOS thoracic board.

The change is partly described by UNOS, as follows:

Lung transplant candidates diagnosed with pulmonary hypertension (PH) and who meet the following criteria may qualify for an increase in their Lung Allocation Score (LAS):

1. Patient is deteriorating on optimal therapy, and

2. Patient has a right atrial pressure greater than 15 mm Hg or a cardiac index less than 1.8 L/min/m2.

We hope this decision will increase options for more patients living with PH and needing to consider the transplant option. 

People make change.  We benefit from their persistence and thank them for their dedication.