Working Toward
a
Brighter Future
Change is not
accidental.
It is the result of vision, focus and hard work.
It is planned.
This is the story of PHA’s activities and achievements during the past year.
Medical Journal
“PHA has created the first-ever
medical journal dedicated to pulmonary hypertension. They have helped us take a long-needed step
to a better future. This will make a huge difference in educating the medical
community to this illness and how to deal with it.”
Bruce
Brundage, M.D.
PHA
President
Bend,
OR
In 2002, PHA launched Advances in Pulmonary Hypertension: Official
Journal of the Pulmonary Hypertension Association. This new medical journal is sent to every
cardiologist, pulmonologist and rheumatologist in the United States – 31,000 doctors. Worldwide, doctors, nurses and patients are
able to have access to this publication on the Internet at www.phassociation.org/Medical.
The best PH researchers and clinicians in the world are
writing to educate their colleagues on the latest thinking in diagnosis and
treatment. Two issues have been produced so far and a third will be completed
by the end of the year. In 2003, this
publication will become a quarterly.
The annual cost of bringing this pioneering medical
journal to the medical community is over $210,000. This is considerably more than PHA’s entire
budget was only five years ago. It’s
still a lot for us to spend but the return in the expansion of medical
interest in and knowledge of PH makes it an essential activity for our
future.
Patient-to-Patient
Support Services
“I was on the Helpline one day when a young woman
called. She had just seen her
doctor. He told her that she had PH and
that she had six months to live. He also
gave her a PHA brochure. She was with
her father and they called the Helpline from his cell phone while they were
still in the parking lot. I told her I
had been living with PH for 15 years.
She cried. This time, it was with
relief.”
Dorothy Olson
PH patient
Sebring, FL
The Patient-to-Patient
Helpline is one of PHA’s original services…and it is still going
strong. Volunteers, all with a
relationship to PH - many of them long term survivors, are available to talk to
other patients and family members who are just learning about the illness or
who are going through a difficult time.
The dedicated volunteers staff the Helpline in one week rotations with
the calls being routed into their homes.
Thanks to the family of Sarah Ing, an active Helpline volunteer and PH
patient who died in 2002, the Helpline will benefit from the Sarah Ing Patient
Helpline Fund.
Local Support Groups
are the other mainstay of PHA’s support programs. In the mid-1990’s PHA had only a handful of
support groups. A little over one year
ago we had 44. Today, we have 101. This means that fewer patients have to face
this disease in isolation. We have grown
quickly and we must continue to grow so that someday soon all patients
will be able to meet and talk with others who understand and share what they
are going through.
In 2002, PHA organized a training session for over 30
support group leaders. We videotaped the
event and are now editing the tape to distribute it as a tool for all support
group leaders. Video is becoming an
important way for us to help develop valuable programs for support groups. A second videotape has been approved under a
federal grant PHA recently received…and we are planning to create other taped
programs, getting the word out to support groups about the latest treatments
and providing other important information.
Both of these patient programs will benefit in 2003 from a
generous grant from The Medtronic Foundation.
With the foundation’s support, PHA will be able to hire a full-time
employee to train and support the courageous volunteers that provide these
services for the PH community.
Advocacy and Awareness
“If
our fellow citizens knew what we are going through, they would help.
It’s our job to tell them.”
Jack
Stibbs
Parent
of PH patient
The
Woodlands, TX
In 2002, PHA had strong success with our Advocacy and Awareness program. Media coverage increased. The highlight of the year (so far) was a full
page article explaining PH in Parade
Magazine. Parade’s circulation is 37,100,000.
We believe that the story of PH is best told through
glimpses into the lives of our members. At
conference, we videotaped over ten hours of interviews with patients. These are being reviewed for editing and
transcription to further expand our public awareness effort in 2003.
Legislatively, we have been working on language to improve
insurance coverage for medications used by many of our members. Recently, we successfully mobilized our
network on very short notice to help pass H.R. 4013 and H.R. 4014. H.R. 4013 writes the NIH Office of Rare
Diseases into law so it cannot be eliminated in the future. H.R. 4014 authorizes $24 million annually so
the Office for Rare Diseases can fund rare disease research. The bills also
authorize $25 million per year for the FDA's Orphan Products Research Grants,
which currently gets only $12 million. As
this report is written, PHA continues to monitor this legislation as it awaits
President Bush’s signature.
PHA’s Fifth International PH Conference
“The PHA Conference is a unique and
amazing event. Where else can you find patients, family members, doctors and
nurses meeting together without barriers?
We share information and we work on our common cause – supporting each
other, while working toward the cure.”
Susan
Salay
PH
Patient
Irvine,
CA
PHA held its Fifth International PH Conference in June 2002
in Irvine, California.
Over 850 members registered to attend more than 50 patient and medically
led workshops. More than $50,000 in
scholarship funding was raised to help support attendance of 120 patients and,
in the case of children, their guardians.
New research grants were announced and current researcher
award winners spoke about their advances.
Medical poster sessions were introduced to the event. Patient support activities were woven
throughout the three days. Over 80
persons attended an international session to begin working together on PH
issues across national boundaries.
A spirit of growing hope was in the air. As Dr. Adaani Frost of Baylor College of Medicine
said, “In recent years PH research has burgeoned. Before we had a disease we just couldn’t
treat. It was frustrating. Now we have ever-increasing novel therapies
for PH. We are working together and
advancing. It is very exciting.” Our
challenge is to accelerate the spirit and reality of hope as we move toward PHA’s
Sixth International PH Conference in 2004.
Web site
“A web site is more than a place to
get information. For us, it is a place
to organize, a place to share, a place to give and receive support, a place to
build community.” Sally Maddox
PH Patient
Rome, GA
PHA’s web site took a series of important jumps forward in
2002. Over 2,000 visitors came to the
site each week. A new Medical Resources
gateway was added, highlighting PHA’s Medical Journal, consensus statements on
patient treatment from leading doctors, a Frequently Asked Questions section
and a bibliography of PH articles.
Expanded information is being included in our PH Doctor’s listings.
New message board software is providing a much easier and
more functional service to the users who are posting over 300 messages per
week. New chat software has led to the
founding of two regularly scheduled on-line support groups.
A new support group database makes it easier for patients to
find nearby support groups. The
information being provided is richer, too. All support group leaders now have a
page on the web site where they can update their group’s information.
Additionally, visitors can subscribe to a variety of list-servs. The most popular is PHAnews, a bi-weekly electronic
newsletter that has well over 900 subscribers.
Scientific Leadership Council
“When PHA first invited us to join
the Scientific Advisory Board, we took on a passive role. We were asked a
question and we answered it. During the past two years, our role has become far
more active. We have become a Scientific Leadership Council,
developing a larger agenda and looking outward to involve the entire PH medical
community under the PHA umbrella.”
Michael McGoon, M.D.
Chair,
Scientific Leadership Council
Mayo Clinic
PHA’s Scientific Advisory Board held two meetings at the PHA
Conference this past June. These
meetings were a celebration of the accomplishments of the past year and a look
toward the future. The group decided to
ask the PHA Board to approve a name change, reflecting their expanded mission
and activities. The Board was
enthusiastic about the change…and the Scientific Leadership Council (SLC) was
born.
In early 2002, the Publications Committee launched PHA’s new
medical journal. In November, the
Editorial Committee of the journal is meeting in Chicago to begin to implement
the expansion of the publication to four issues in 2003. The Consensus Committee met in Utah and emerged with nine consensus
statements – ranging from recommendations on exercise to patient referral. These were later approved by the entire SLC.
The SLC’s Executive Committee met at the PHA office in Silver Spring, MD in mid-October to refine their
action plan. An important goal is building
stronger communication links to advance research and treatment protocols more
rapidly. The meeting was followed with important visits to Dr. Stephen Groft,
head of the Office of Rare Diseases at NIH and Dr. Claude Lenfant, director of
the National Heart Lung and Blood Institute.
The work of the Scientific Leadership Council is moving so
rapidly that PHA has made the commitment to staff their activity. The new Medical Services Director works with
the SLC as well the Pulmonary Hypertension Resource Network (PHRN), a
developing group of nurses and other medical professionals organizing within
PHA.
Communications
“When it comes down to it, one of
our most important roles is as communicators.
We have to educate ourselves to this illness. We have to teach each other ways to educate
our families, friends, the broader public and the medical community to
pulmonary hypertension. We have to
communicate ways to live with and fight against this illness. We do that well
through PHA.”
Gail Boyer
Hayes
PH Patient
Seattle, WA
The 215-page second edition of the Patients’ Survival Guide
has been in print for a little over a year.
With all the advances in PH research and treatment, a team of 20
volunteer researchers, writers and graphic designers has already begun work
that will lead to a third edition.
Pathlight, which has served as the PH
community’s primary newsletter since the founding of PHA, has continued to
expand its coverage of activities within the organization. It provides an ongoing history of the
advances taking place and also provides a listing of the losses our community
has suffered. Persistent Voices tells the story of patients living with PH and
was revived as a member service about a year ago with a new format. Pathlight
is a quarterly newsletter, while Persistent
Voices is mailed twice per year.
PHA’s membership
brochure is distributed through the cooperation of many doctors’ offices
and is an important recruiting tool for the organization. PHA plans to update this brochure in
2003. Pulmonary Hypertension: Helpful information for patients and families
has been available for about a year and provides a quick 8-page overview of the
illness.
Besides print publications, PHA communicates through the web
and other electronic media. In 2001, PHA
created the Understanding Pulmonary
Hypertension CD-ROM. In 2002, an
updated and expanded version 2.0 was released.
A second CD-ROM, PHA’s Quick
Guide to “Funraising” Events is being released toward the end of the year. The purpose of the “Funraising” CD-ROM is to
help volunteers throughout our network who want to learn how to create simple –
or complex – events to support PH research and programs.
Research
“In the end, the only way to beat
this illness is to attract more researchers with good ideas to this field,
while keeping the ones we have active and working hard.”
Lewis Rubin,
M.D.
Chair,
SLC Research Committee
University of California at San Diego
PHA has been raising and spending money for research since
1999. As a matter of fact, PHA has
the only non-governmental peer-reviewed program in the U.S. dedicated to pulmonary hypertension
research. PHA funds young researchers at the front end
of their careers, encouraging what we hope will be life-long interest in the
field. Eight awards have been made under
this program and four are currently active.
PHA,
through the leadership of its Research Committee, also completed a Memorandum
of Understanding with NHLBI in 2001. This exciting agreement commits the two
organizations to jointly funding five 5-year research grants. These will phase
in at the rate of one new fellowship per year. We are awaiting a decision on
the first grant which is expected to begin in February 2003. When the cycle is fully mature, PHA's annual
commitment for this portion of its research agenda will be over $300,000 per
year. NHLBI has committed itself to fund approximately $500,000 and will absorb
all administrative costs for the grant awards. This means that our donations
will leverage over $800,000 per year in new PH research. PHA is very pleased to
partner with one of the world's premier research support organizations and is
looking forward to advancing research through this new program.
PHA also
works closely with NHLBI, the Department of Health and Human Services and the
Centers for Disease Control on research and awareness opportunities. NHLBI’s PH research portfolio has expanded rapidly
in the past three years and is now over $19,000,000.
Support for PHA
“All that we do is made
possible by the generosity of our friends and family, by the members of our PH community. Our work is hard. It is expensive. There is no doubt though that, when it is
over, we will be able to say, ‘it was worth it all.’”
Linda Carr
PHA
Past President and parent of a teen with PH
Miami
Springs, FL
As we work
to fulfill our mission, PHA will raise and spend over $1,500,000 by the end of
2002. This is ten times the
organization’s budget only five years ago.
PHA’s
growth and continuing success has been made possible by our members and donors,
by foundations and corporations and by our many friends and volunteers.
This year
PHA received its first bequest, thousands of tribute and membership gifts, many
hundreds of individual donations large and small, and funds from special events
across the country. PHA’s Corporate
Committee was also formed with membership from Accredo Therapeutics, Actelion
Pharmaceuticals, GlaxoSmithKline, Myogen, Pfizer, Inc., Pharmaceutical Research
& Manufacturers of America (PhRMA), Texas Biotechnology Corporation/ICOS, TheraCom
and United Therapeutics.
As we prepare
to enter 2003, PHA is preparing to launch our new Development Committee under
the leadership of Bruce Brundage, MD, who has accepted this position as a sign
of its significance to PHA’s future.
All of us
at PHA are deeply grateful to our supporters and volunteers.
Conclusion
The
Pulmonary Hypertension Association is giving voice to our common cause.
Some of
the ways it is doing so are described in this report.
There are
more…and, with your help, there will be more to come.
