By John P. Leonard, MD
2008-09-01
Dr. Leonard is the Richard T. Silver Distinguished Professor of
Hematology and Medical Oncology, Director of Hematology/Oncology
Clinical Research Program, and Professor of Medicine at Weill Cornell
Medical College.
Whether we work in practice or research, our ultimate goal as
hematologists is to improve outcomes for patients with hematologic and
related disorders. The Society has always kept the needs of hematology
patients at the forefront and has sought to ensure that patients and
their families have access to the information necessary to combat the
diseases they are facing. These efforts take many forms, including
disease-specific educational materials and the "Find a Hematologist"
feature on the ASH Web site.
The ASH Web site has also provided links to various patient groups
that represent the needs and advocacy interests relating to specific
hematologic diseases. Some of these groups act primarily as support
groups and are volunteer-driven organizations, while others are active
in medical and research policy issues and exert significant influence
in the public policy arena. The Society has always recognized that
whether through support, education, research funding, or advocacy,
these groups are important sources of information and serve as a voice
for hematology patients.
ASH has begun hosting an annual Patient Advocates Networking
Reception in conjunction with the National Heart, Lung, and Blood
Institute's (NHLBI) Public Interest Organization (PIO) meeting. The PIO
meeting provides the opportunity for patient groups and professional
societies to meet with each other and NHLBI staff. The meeting is
designed to encourage and promote public input and involvement in NHLBI
activities and support interaction among the various organizations.
The reception provides a forum for ASH to inform the
hematology-related patient groups about ASH resources and services that
may be of interest to their constituents. During the reception, ASH
updates the patient groups on ASH advocacy efforts and opens a dialogue
between ASH and the patient groups about possible collaborations on the
advocacy front.
I had the pleasure of representing ASH and speaking with many of the
representatives from these organizations at this year's Patient
Advocates Networking Reception in June. They uniformly thanked ASH for
its leadership and expressed an eagerness to work with the Society on
issues of common interest, particularly in advocating for NIH funding.
In that spirit, the ASH Government Affairs Committee is in the midst
of establishing an advocacy plan with several patient groups. The goal
of this initiative is to increase the effectiveness of ASH's advocacy
through synergistic efforts and increasing the visibility of ASH and
hematology among policy makers. With an increasingly tight federal
budget, ASH has recognized the importance of a united voice in support
of hematology research and has sought to strengthen the Society's
relationships with these groups. This is being done through promoting
the ASH Grassroots Network and Advocacy Center, sharing fact sheets and
other materials on common issues, sending consistent letters to
Congress and federal agencies on issues of common interest,
coordinating legislative targets, and possibly collaborating with
patient groups on their Hill Days.
The Society looks forward to a continuing dialogue with patient
groups to discuss common issues of concern and develop strategies for
further collaboration in areas such as patient education and advocacy.
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