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| Carl Hicks, Bette Perez, Lisa Beth Gansberg, Gina Parziale, Rino Aldrighetti |
Almost exactly one year ago, I began an important new
conversation with PHA’s Board of Trustees.
At that time, PHA was able to look back on significant and
almost uninterrupted growth during the past dozen years. Looking forward, however, we anticipated
that, without changes, this growth could be at risk.
Let me start by explaining why growth is important in our
disease state and the risks we face and then I will talk about our plans for
the future.
PHA has always known that it is no less complex or expensive
to solve the problems of a disease state like PH, with our 20,000 to 30,000
diagnosed patients in the U.S., than it is to solve the problems of a disease
like diabetes (24,000,000 diagnosed in the U.S.) or arthritis (73,000,000). In the face of that reality, we have built a
system that has allowed us the funding to do what we need to do. That system has been built upon our members
and friends who give very generously, special events organized at the grass
roots level, external givers like foundations and industry.
Industry giving has been significant and there is a reason
for their strong support. PH – which had
no treatments before 1996 and only one (Flolan) until 2001 – has as many or
more treatments today than all but two of the 7,000 rare diseases identified in
the U.S. by the U.S. government. Here is
that list as of June 2011:
Leukemia…………….25
HIV/AIDS…………….24
PH/PAH………………..9
Hemophilia……….….9
Growth failure….….8
Having said that, industry giving functions parallel to
their business cycle in a disease. As
their products mature and move toward generic availability, the good news is
that pricing will go down…we are already seeing that with Revatio. However, the other side of the coin is that
we anticipate this segment of PHA’s funding will begin to recede.
Even if industry funding was to hold steady or increase –
and, with new products in the pipeline, that might well happen – PHA still
needs to develop alternate funding. We
have always been driven to do all that needs to be done and never to be limited
by the size of our patient population.
As we have grown, we have been asked to – and strive to – do more:
·
to coordinate, train and assist a support group
network that will shortly include over 250 groups
·
to organize and provide essential online and
face to face medical education for a medical community that is rapidly growing
·
to develop and assist patient and caregiver
groups for segments of our community with specific needs and interests
·
to increase support for adult and pediatric PH
research within our five research programs
·
to support the development of a system of
standards that will result in defined and accredited PH Centers of Care to
improve the quality of clinical treatment for patients
·
to rapidly expand our early diagnosis campaign, Sometimes It’s PH, toward our goal of reducing
the time from onset of symptoms to point of diagnosis over the next five years
All this is exciting opportunity to make things better for
our community…but it also requires significant resources.
So, that’s why continuing growth is important and those are the
risks we face. Now let’s talk about how
PHA is responding.
At PHA’s board meeting in early 2012, I talked to our board
about the same issues I am writing about in this blog and we began a discussion
to ensure our sustainability…an eight month process of search and discovery. Our goal has been to find and build a
structure that will keep PHA strong and independent in the coming years to do
all the things we must do. Our
timetable was to make a decision and establish our new structure for this goal
by January 1, 2013.
As I post this blog on the last day of 2012, it was quite a
trek but we have met that goal.
In the early months of 2012, board and staff began to
investigate and discuss different options.
For various reasons, each was rejected as not being capable of fully
meeting our needs.
Then, on July 17, we had a full day meeting with the
leadership of the Cystic Fibrosis Foundation.
Our history went back a long way with CFF. A year or so after I began work with PHA as
its first staff person, board member Jack Stibbs and I had a number of meetings
with Bob Dresing, who was one of the founders and who had been CFF’s first
CEO. More recently, our Scientific
Research Council had been working closely with Dr. Bruce Marshall, their VP of
Clinical Affairs about their development of Centers of Excellence.
At our July meeting, we brought in 5 board members with
business and medical background and 5 staff.
We went through a number of issues with their long-time CEO Bob Beall
and COO, Rich Mattingly and a number of others.
During follow-up discussions, it was clear that we had
unanimous agreement that their Chapter structure fit both our mission and
goals.
We had a target. In the end though, it’s always about
people. To maximize our chances of
success, we now needed to staff that target…and staff it we did.
On October 1, Carl Hicks became the first member in PHA’s
history to move from a board position to a staff position. Following his resignation from the board, we
hired Carl to fill a newly created position, Vice President for Field
Operations…certainly not because he was a former board Chair but because – with
his military and corporate leadership experience at the highest levels – Carl
is clearly the right person for this job.
Our task is to create new funding streams to support the
work described above and the work to come.
In the first year, the plan we developed calls for three such Chapter
offices to be established and brought to significant profitability within the
first 12 months.
Carl has been working rapidly since early October to build
this new support element for our structure.
By November he had completed the process of city selection for our first
three Chapters. Once New York, Chicago
and San Francisco had been chosen, over 100 resumes were collected and,
following many phone screenings among the candidate pool, he began to travel to
each of the cities. In New York, he and
Joanne Sperando Schmidt – a support group leader, event organizer and former
board member – completed nine first round interviews in a day. He did eight interviews the next day in
Chicago with Liz Rossi – who had organized some of PHA’s earliest large
events. He repeated the process in the
San Francisco area with participation by PHA board member Rita Orth.
By late November, Carl and I began second round interviews
at the PHA office. In early December, we
had completed hiring for PHA’s first three Chapter Executive Directors:
·
New York: Gina Parziale has well over a decade
of rapidly increasing responsibility among New York area non-profits, serving
as the District Director of the Muscular Dystrophy Association and the Division
Vice President of the American Liver Foundation (New York/New Jersey).
·
Chicago: Lisa Beth Gansberg has been developing
fundraising events for over a decade and a half. Her work has benefited organizations such as
the Chicago Chapter of the Arthritis Foundation, the National Kidney Foundation
of Illinois, the National Kidney Foundation of Illinois and the National ORT.
·
San Francisco: Bette Perez has been leading
non-profits in the Bay area for over two decades with strong experience in
special events and major giving. These
include St. Vincent DePaul Housing and United Way of Sonoma-Mendocino-Lake. (Bette set a record after being hired,
securing the first major gift through the new Chapter structure within an hour
of accepting her position!)
On December 18, we began a three and a half day training for
our three executive directors at PHA’s office in Silver Spring, Maryland. Besides
learning about PH and PHA…
·
we analyzed their needs so that the national
office is positioned to provide effective support
·
they connected with each other to form a strong
team
·
they developed their budgets
·
funding goals were established
·
advertising was placed (and hiring has begun)
for what will soon be three person field offices in each of the cities
We have hit our first two goals. Our first field offices have been established
with strong leadership. Our national
office is positioned to provide necessary support for the field structure’s
success. Now, in the new year, the field
offices will begin to raise funds as a key component of the funding strategy
that will allow PHA to continue to respond to our community’s needs. Our third goal is to bring each of the
Chapters to positive income flow by August.
Following that milestone, we will continue to expand the field structure
annually
So, as we close one year and open another, I present this to
you as a window to future opportunity for our community.
As I wrote above, it is no less expensive to solve the
issues of a rare disease than one with millions of patients. We cannot be limited by our numbers. We must always find ways to exceed them. If we
do not fight for this community, if we do not work to defeat this disease, who
will?
We have a plan. We have
a team, We have a worthy and critical
cause.
May 2013 be a year of new breakthroughs and realized
opportunity.
Today I am thrilled to bring to the PH community a new
initiative that, for me, has been several years in the making. But first, here’s
how we got to today…
PHA has been helping me address these concerns via the
Corporate Committee, a group of representatives 
