Monday, January 30, 2012

A 20 year anniversary...

Earlier today, Amanda Butts was digging into our archives and found information about PHA’s original non-profit incorporation. What was striking was the date of that incorporation – February 11, 1992 – almost exactly 20 years ago.

A lot has happened in two decades…

PHA was known as United Patient Association for Pulmonary Hypertension (UPAPH) then. At the annual meeting in January of 1992, with ten people present and $858.31 in the bank, Ed Simpson proposed that PHA organize an International Pulmonary Hypertension Conference. And, organize they did, with the first PH Conference being held in 1994.

Taking place every two years since, PHA’s Tenth International Conference will be coming up this June in Orlando, Florida. Thanks to the willingness of these early patient and caregiver leaders to risk and work to create something extraordinary, these have become the largest PH meetings in the world drawing attendance from up to 20 countries.

In July of 1992, Stuart Rich, MD, Elizabeth Kaufmann, RN and Paul Levy, ScD published a key paper on calcium channel blockers in the New England Journal of Medicine. Today, the research field for PH has swelled as a unusually cooperative and productive body with the results that there are now nine treatments for PH (all since 1996, eight since 2001).

The minutes of the 1992 UPAPH meeting report on the intent to create a Scientific Advisory Board and the compiling of regional lists of doctors with interest in PH. Well, they certainly got that done. With what has become a globally recognized Scientific Leadership Council and two medical associations within PHA (one for physicians, the other for allied health professionals), not only are medical professionals listed but they are working actively with each other on many important projects…from face to face medical education, online education, research and journals to webinars for patientsknowledge videos and the creation and approval of new informational pieces for our entire community (too many possible links for that one!).

At the same time, the early leaders decided to create information packets for patients and new members. That was the seed that led to the dozens of brochures and booklets and thousands of pages of online information now being offered, including information for new patients.

The two support groups they started 1992 with have now grown to well over 230…and the 141 UPAPH members then are over 13,500 PHA members now.

Oh, and the database they authorized at that meeting has now grown to 70,000 people who are – members or not – interested in this disease and are potential connections for change.

So this seems like a blog that’s more about the details than the personalities…but I don’t think so.

To me, the numbers tell the story of possibilities – possibilities transformed to reality by people who refuse to accept impossibility.

All of us who are concerned about changing the history of this disease are indebted to the pioneers who created focus and direction 20 years ago. We build on what they began.

Monday, January 23, 2012

Affirming the human spirit...

“Thank you for reminding me why I became a doctor.”
The first time I heard those words were in 2002 at PHA’s Fifth International Conference in Irvine, California. It was a striking statement from a globally recognized PH physician.

I’ve heard similar words since from other medical professionals and I’ve heard so many stirring words from patients and their families about what Conference means to them…

“These past 4 days were honestly life changing. I found hope.”

“I will always remember this conference. Words cannot explain the blessing it was to me. I loved the research room. It gave me a chance to make a difference in maybe a cure for the next generation.”

“Coming to the conference brings out the best in us; it usually gives people a reason to shine.”

“This conference is such an opportunity for me to learn and feel the love and support of my fellow fighters.”

What is it about this event that makes it so special in people’s lives?

I guess every person whose life has been touched by Conference has their own answer. I can only give you mine.

Conference to me is an affirmation of the human spirit.

I have listened to Carl Hicks speak eloquently and movingly about “Why I Fight”.

I have seen the barriers between medical professionals and patients dissolve as physicians and their patients participate in a centerpiece of each Conference, the Journeys discussions…an activity that is so much more about relationships than medicine.

I have seen doctors, nurses and other allied health professionals at the highest levels of expertise in this field give enthusiastically and freely of themselves to offer clear and valuable education and fellowship to patients and families…and to each other.

And, most of all, I have seen people connect in deep and meaningful ways, in ways that make them – and all of us – stronger in the fight against PH.

We are an extraordinary community; there is no doubt about that.  Nowhere is that sense of community more visible than at Conference – the largest PH meeting in the world. This year especially, PHA’s Tenth, I hope you will be able to join us from June 22 to 24 in Orlando, Florida. 

Thursday, January 5, 2012

Making a big noise for big change...

Remember the famous question, Would there be a noise if a tree fell in the forest and no one was around to hear it?

I've often thought that our challenge with PH is like that. 

Without an awareness among our neighbors and fellow citizens of what PH patients and their families are going through, how can we be heard?
How can we build an effective movement for change?

Over the years, we've made public awareness a taget and, despite our small numbers, have had good success. 

During my first year at PHA, we asked our members repeatedly to send us all the articles they could find on PH.  The total we received in that year - 1999 - was four.  Today, if you check Google News, you'll find one to four articles on any given day...and many of those articles have been driven by the efforts of our media volunteers and other community members.  Our stories drive our power for change.  They take us from the loneliness of the forest to consciousness in the public square.

An example of that consciousness came in mid-December.  As I mentioned in my last blog, we were awaiting publication and on the 16th of the month, USA Today included an eight page insert on pulmonary hypertension in six major metropolitan areas - Boston, Chicago, Dallas, Nashville and St. Louis.  The 485,000 inserts reached an estimated 1,200,000 readers.  It's online now and worth your read.

In 2012 PHA will be doing more to build that consciousness as a tool for change.  Through a recent reorganization, we have recently targeted strengthening our internal public relations and marketing capabilities. This includes bringing on a new Vice President for Community Engagement, Mollie Katz, with strong pr and marketing background.  In coming months, you will also have an opportunity to be part of the launch of an Early Diagnosis Campaign with the goal of speeding the time from onset of symptoms to diagnosis and treatment.  A broader by-product of that effort will be a larger spotlight on this disease.

We may never be able to answer the question about the falling tree but we can certainly make a big noise...and a big difference.

May 2012 be a year of great change and a better life for all those living with PH.