I had an interesting
call from Sean Wyman the other day. Sean is an energetic young man who is
active in our community, a patient who is currently attending medical school.
As we spoke about a
number of issues, we got onto the subject of PHA’s recent Board meeting. Sean
found it interesting and suggested I share it with the broader community.
Thanks for a good idea, Sean.
"When
you can get these leaders together, face to face, that’s when you’ll see real
change."
– Bruce
Brundage, MD (2001)
Chair of PHA’s Scientific Leadership Council (SLC)
When we talk about a Board meeting at PHA, we’re really
talking about a lot more.
Our most recent set of meetings offers a good example.
On Wednesday, March 12, I flew to Orlando and headed over to
the Marriott Renaissance. After checking sites in Florida and Texas, our staff
picked this venue because the hotel had the meeting room availability we needed
for our various sessions and activities, airfare is cheaper because there are
so many direct flights, and we were able to get a great room price.
For more fluid planning, PHA usually holds our leadership
meetings back to back, since our Board, SLC and PH Professional Network (PHPN)
structures are interlocked. Plus, holding them together keeps costs down. This
time was no exception.
We began with the executive committee of
PH Professional Network on
Thursday morning at 7:30 a.m. This is leadership of PHA’s membership group for
nurses, nurse practitioners, physicians’ assistants, pharmacists, respiratory
therapists and other non-MD medical professionals. Much of their conversation
is always about different projects they are creating or reviewing for patients
and families. (Take a look at our new
School
Resource Guide for an example.) There was also a lot of conversation at
this meeting about the restructuring of their membership newsletter,
development of online medical education programs for their peers working in PH
and their members’ involvement in supporting our International PH Conference.
When they broke at about 4:00 p.m., I headed over to a
combined meeting of the four leadership committees of the
PH Care Centers (PHCC).
This effort to create an accreditation system for PH Centers is important for a
number of reasons.
- PHA has always publically proclaimed that it is
important for patients to see physicians who are experts in PH. However, when
people contact us, we have no standard by which to make referrals.
- PH has grown from about 100 treating physicians
in 2001 to more than 10,000 today. Most of those physicians see two or three PH
patients and are not attached to the latest research in this fast-moving field.
- About three years ago, one of the nation’s
largest insurers put out notice that they would no longer be covering
combination therapy for PH patients in North Carolina and that this was the
pilot for that policy being spread across the U.S. As this limitation on access
to treatment moved toward reality, PH doctors were frightened for their
patients. PHA’s Scientific Leadership Council (SLC) joined with PH Centers in
that state to begin conversations. They made a case for the insurer to defer
their decision. They also learned that a major concern for the insurer was that
many PH patients had been diagnosed without the essential right heart catheterization,
and they claimed to have no objection to providing approval for combination
therapy where the prescribing physician was expert in the field. The only
problem is that there were no expert standards in the field.
The committees of doctors, other medical professionals and
patient liaisons were reviewing current progress and next steps. The PHCC
program is now in the midst of its pilot phase (six accreditations), and medical
leaders will be holding a
webinar on April 30 to
explain the program to patients and caregivers. It was a productive and intense
meeting that went on until 10:30 p.m.
The next morning, Friday, at 8:00 a.m., it was time for
PHA’s SLC to begin. The SLC is a body of world-class PH physicians who – among
other things – help PHA develop strong medical education activities for medical
professionals, patients and families, oversee our various
research programs and
make sure that all of our medical information is correct.
Discussions were held around the work of a number of active SLC
committees. The
Insurance
and Advocacy Committee (chaired by Dr. Ron Oudiz) works on making it easier
for PH patients to get approval for Social Security Disability and coordinates
various state efforts where the voice of medical professionals is needed to increase
the value of these programs for PH patients. The Research Committee (chaired by
Dr. Serpil Erzurum) reported on an upcoming review of our research programs, which
have, to date, committed more than $13,000,000 to research grants. The
Education Committee (chaired by Dr. Bob Schilz) has been working on fact sheets
for the three new treatments approved for PH by the FDA. All three of those new
treatments came in a 73-day period between October and December of 2013.
With 12 treatments now available – all since 1996, 11 since
2001 – PAH has as many or more treatments than all but two of the 7,000 rare
diseases identified in the U.S. The FDA has told us that, unless you count all
the cancers as a single disease, they have never seen so many treatments
approved in so short a time for any disease, rare or common. This speaks to the
collaborative work of our PH medical community and the power of working in a
community that does not separate medical professionals, patients and families.
We may be a rare disease with a rare model of operation, but PHA’s approach certainly
is working.
.JPG)
The
other
SLC committees also moved forward on many fronts. I was touched that so
many of the
SLC
members donated their travel expenses in honor of Dr. Richard Channick, who
is completing a very productive term as SLC Chair. The suggestion had been made
by his successor, Dr. Karen Fagan. The SLC meeting went on through mid-afternoon, but I had to
leave at 2:00 p.m. as PHA Board Committees began their sessions.
PHA’s Development Committee was first up, followed by the
Strategic Planning Committee and the Governance Committee and, finally, the
Conference Committee. So what do these folks do?
I think the most succinct description I’ve ever heard of the
job of a development committee came from a nun who was president of a
non-profit hospital in Rochester, Minn. She said to Dr. Mike McGoon, “No money,
no mission.” It’s true. Unlike government, organizations like PHA don’t get
money through the power of taxation; unlike businesses, we don’t have a product
to sell. We keep our doors open to do the things we are asked to do because people
vote with their pocketbook. PHA’s basic dues have remained at $15 per year for
well over a decade and a half, and while our membership numbers have grown
considerably, if every patient in the U.S. joined PHA, dues would only bring in
about 3 percent of our budget. Our Board throughout the years has directed us
to build a structure that will not be limited by our numbers. After all, it is
just as expensive to fix a rare disease like PH with 20,000 to 30,000 patients
in the U.S., as it is to fix a more common one like diabetes with 26,000,000. So
the Development Committee works with staff to make sure our fight is never
limited by the size of our disease.
The Strategic Planning Committee has similar simplicity to
its mission. If you haven’t decided where
you want to go, you’ll never get there. PHA’s Strategic Planning Committee
works with staff and stakeholders (various segments of the community we serve) to
plan our future directions and evaluate whether we are progressing toward those
targets. Our plans are usually developed for three-year time periods and
evaluated annually.
The Governance Committee proposes the rules that the Board
will live by. This runs anywhere from conflict of interest policies to
nominating future officers… and a lot in between. While PHA is a community
rather than a business, we also have a strong responsibility to manage well the
resources that our members and friends provide. Thoughtful governance provides
direction for us to do that.
Then there’s the Conference Committee.
PHA’s bi-annual International
PH Conference has grown to become the largest PH meeting in the world. The
2012 Conference drew well over 1,500 registrants from 30 nations. Pre-Conference
includes
Scientific
Sessions, the
International PH
Association Leaders' Summit (PHA has played a central role in expanding the
number of global PH associations from three in 2000 to 68 today), support group
leader and other training sessions and
patient and family meet-ups.
And that’s just before Conference opens. Conference itself is a complex
agenda of patient
and medical education, individual and group connections and plenary sessions
designed to display the present and the future.
On Saturday at 8:00 a.m., we moved on to PHA’s Board of
Trustees meeting. PHA’s Board is a volunteer group of patients, family members
and medical professionals. This blend helps us to get the best from each
constituency to benefit our mission: To
find ways to prevent and cure pulmonary hypertension, and to provide hope for
the pulmonary hypertension community through support, education, research,
advocacy and awareness.
After a difficult 2012, we were able to report on stronger
financials for 2013. This was especially important considering the major new initiatives
PHA has been asked to take on. There was considerable discussion about the PH
Care Centers since our Board provides oversight and ultimate governance for
that important new program. Also, the Board reviewed progress on our new
Specialty Pharmacy
Advisory Board, which emerged from the frustration of patients and medical
professionals in a field that is undergoing major changes. PHA has recently
hired a staff person (Eva LaManna) to manage this program and to help move it
rapidly to its next stage, evaluation of pharmacy response time and comparing
the patient/medical professional and company view of the success in positively
closing cases. You will be hearing much more about this program as we complete
Phase 2 of the feedback system.
The five-year Early Diagnosis Campaign has accelerated with
Jessica Armstrong as our new staffer on the project. Jessica began to show
symptoms of PH at 17,000 feet in Afghanistan… and was described as a
malingerer. Her story appears in the
winter 2014
issue of Pathlight. She
understands the importance of early diagnosis and has been successfully moving
our three committees forward.
We spent considerable time discussing the
Chapter structure begun in
January 2013. This was something the Board came to after investigating many
options. The goal was to assure PHA’s ability to sustain its programs into the
future. The Chapters’ goal is to create new funding opportunities in
communities to support the programs we are asked to begin and maintain.
Progress is good although not instant and the Board must carefully evaluate our
investment and movement toward stability and success. Between our grassroots
and Chapter events, PHA is on track for more than 100 events in 2014. Board
members are among the many in our community who organize and host these events.
Well, there was a lot more, but the Board meeting ended on
Sunday afternoon. A number of us were stranded for a while due East Coast
weather conditions, leading to flight cancellations… but that’s the nature of
service on the Board.
We count on the U.S. Food and Drug Administration (FDA) to
ensure that the medications we buy are safe. 
