On Tuesday, November 16, 2004, PHA held it’s first-ever
Congressional Luncheon on Capitol Hill at the Rayburn House Office
Building. The luncheon was designed as an opportunity to educate
members of Congress about pulmonary hypertension (PH), an emerging
chronic disease that afflicts up to 200,000 Americans. Representative
Kevin Brady (R-TX) and Senator John Cornyn (R-TX) have introduced
in their respective chambers the “PH Research Act,”
which authorizes the following:
- An expansion of pulmonary hypertension research at the National
Hearth, Lung and Blood Institute.
- The establishment of three “Centers of Excellence”
with public, non-profit or private entities to support basic
and clinical research into the cause, diagnosis, early detection,
prevention, control and treatment of PH, PH training programs
for scientists and health professionals, and awareness efforts.
- The establishment of a pulmonary hypertension data system
and clearinghouse at NHLBI.
In order to build support for passage of the legislation, we
need key decision makers to know about PH. For that reason, PHA
organized the Congressional luncheon at which PHA supporters and
Hill staff had the opportunity to interact and discuss issues
concerning PH.
In the preceding weeks, members of PHA were asked to help get
their member of Congress to the luncheon. Once their Senators
and Representatives were identified, PHA members were asked to
first write then call their member of Congress to invite them
to the luncheon.
Speakers
at the luncheon included: Carl Hicks, PHA Board Member and father
of a PH patient; Dr. Anne Caesar, PH patient and PHA activist
who is also the Director of Advanced Life Support Education at
the George Washington University; Dr. John Berger, physician at
Children’s National Medical Center; and Rino Aldrighetti,
PHA President. Hicks gave a general welcome to the audience and
introduced the topic of PH and the PH Research Act. He also shared
his story of having a daughter with PH. Caesar presented from
the unique perspective as both PH patient and physician. Lastly,
Berger addressed medical advancements for diagnosis and treatment
of PH while presenting children’s experiences with the illness.
The talks ended with a question and answer session moderated by
Aldrighetti.
Throughout
the luncheon, patients, congressional staffers, representatives,
and other invited guests were able to engage in conversation.
Discussions about the PH Research Act and individual patients’
lives with PH were had throughout the afternoon. Afterwards, patients
and constituents were broken into smaller groups for a mini-lobbying
session. Some of the congressional offices visited included: Sens.
Barbara Mikulski (D-MD); Paul Sarbanes (D-MD); Jon Corzine (D-NJ);
Frank Lautenberg (D-NJ); Arlen Specter (R-PA); Rick Santorum (R-PA);
George Allen (R-VA); John Warner (R-VA); and many more. Once at
the congressional offices, patients explained about their illness
and why it is important for their member of Congress to support
the PH Research Act.
Overall PHA’s Congressional Luncheon was successful at
bringing awareness of PH to the members of Congress and their
staff. Rep. Tom Lantos (D-CA) offered to work with PHA and Rep.
Brady’s office to make sure attention is brought to the
PH Research Act. Lantos spoke briefly and urged his fellow members
of Congress to support the bill. Thanks to this event, PHA has
been able to secure more appointments with other members of Congress
to discuss the importance of the bill. The luncheon was an important
part of a large effort to bring further awareness to PH and eventually
finding a cure.
