Pathlight Summer 2016 - (Page 7)
THE SLC CHAR
Letter from the PHA Scientific Leadership
25 Years of...." is the oft heard refrain this year for good
reason. PHA has evolved in size and scope in ways that
would seem impossible but were accomplished with
the clarity of the mission and the amazing talents of the
community. After I was asked to write a guest editor letter
for this edition, I pondered what I could add to the story of
PHA. But then I realized that my journey as a PH health
care professional mirrors much of the PHA story.
As I began my internship in 1992, I had never heard of
PH (if it was mentioned in med school I certainly don't recall
it!) until I was taking care of a patient in the CCU who was
being tried on calcium channel blockers. Sadly, the patient
died and I was taught that there was really nothing to do for
these patients. Thankfully a few years later, as a pulmonary
fellow, I was assigned to work with a PH specialist and
quickly fell in love with PH and the courageous patients.
Contrary to my first PH experience, I learned there is hope. I
decided to focus my career on PH.
Central to my growth as a PH professional is PHA.
What I didn't expect was how central PHA has become
for me personally. I attended my first Conference and was
overwhelmed by the sense of community and commitment
and was eager to serve in any way I could. I was appointed
to the SLC Research committee as my first "official"
engagement and learned much more about PHA and its
mission. Since that time I have been privileged to serve PHA
in so many ways, from speaking at Conference, to serving
on multiple committees including the SLC where I am the
outgoing Chair, to being on the Board of Trustees.
So how is this similar to the growth of PHA? Much like
the need of the PHA founders' to find others to connect
with, I needed to meet other medical professionals to learn
more about PH, develop a professional network, promote
research to identify effective treatments, and to increase
awareness of PH. I needed to connect and learn and grow in
my approach to treatment of PH patients.
But then I realized that just like effective communities
everywhere, my community needed me as much as I needed
it. Serving PHA any way I could was the best way I could
give back. In giving back, I have received so much more.
It seems almost impossible that we have come this far:
PHA programs serve to educate and promote early diagnosis
and appropriate treatments. More than $17 million in
PHA research dollars is targeting the goal of identifying
more effective treatments. Developing the PH Care Center
accreditation program and the associated patient registry is
providing the foundation for patients to seek quality PH
care and participate in research. A network of "PHAs" and
Serving PHA any way I could
was the best way I could give
back. In giving back, I have
received so much more.
support groups now exist across the world. We lead advocacy
in PH early diagnosis, access to care for all, and research.
And in only 20 years, 14 FDA-approved PAH treatments
are now available.
I fully expect that PHA will continue to play a unifying
role in the goal to develop and make accessible treatments
that lead to normal, full lives for our patients. Being part of
that makes me incredibly proud.
I have also made a commitment to support the mission
of PHA with dollars in addition to my time as a volunteer. I
like the feeling of putting "my money where my mouth is"
and knowing how that money supports the cause I believe so
I have received so much more from PHA than I have
given. I have developed a network of friends and colleagues
around the world who support me and provide advice in
my professional life. I have made many friends with the
staff and other PHA volunteers that I cherish greatly. I have
had opportunities for personal growth through PHA that I
would had not have had elsewhere.
Bringing my daughters to Conference so they see the
power of coming together, see who the people are who
occasionally take me away from them, and watching them
make new friends and understand that having an illness does
not make them any different has made them better people. I
can't envision any better life lesson for them and am grateful
I could not imagine not having the gift of PHA in my life,
professionally and personally. I cannot wait to see what the
next 25 years look like!
Karen A. Fagan, MD
Chair, Scientific Leadership Council,
Table of Contents for the Digital Edition of Pathlight Summer 2016
Message from the Chair
Message from the SLC Chair
A Day in the Life of a PH Physician
GO PHAR Research
Ask the Expert: Post-PE Monitoring
End-of-Life Conversations: Tough Questions & Important Answers
Conference & Leadership Changes
Advocacy PHact or PHiction? Test Your Knowledge of PH Advocacy
Calendar of Events
Question of the Quarter:
Pathlight Summer 2016