Nearly a month after two hurricanes
hit the Gulf States region, comprehensive information on their impact
on the bleeding disorders community is still difficult to gather. The
overwhelming scale of the disaster has devastated New Orleans’s
overall infrastructure and ensured that full recovery will be a protracted
and painstaking process.
The early effects of Hurricane Katrina were felt most acutely by the
Louisiana Comprehensive Hemophilia Center at Tulane University. The treatment
center was flooded, its staff evacuated, and patients dispersed and displaced.
Steps were needed to ensure that affected individuals would have access
“Following the disaster, NHF took a leadership role to serve as
a clearinghouse for information and, where possible to coordinate services.
We wanted to do what we could to help, so that individuals directly and
indirectly affected by these hurricanes would continue to have access
to care,” said CEO Alan Kinniburgh, PhD. “Our continuing
goal is to help bring resources to bear quickly.”
The National Hemophilia Foundation took a lead in contacted area chapters
and treatment centers, to immediately link people to resources. The
NHF Web site – www.hemophilia.org – posted updated information
and continues to do so as more comes in. NHF’s Information Resource
Center HANDI provided referrals so that patients would continue to
have access to medicine and treatment center professionals. In addition,
NHF created the Hurricane Katrina Relief Program. Through this fund
the national office is receiving online and mailed donations, which
are already going to aid affected NHF chapters.
Cindy Leissinger, MD, director of the Louisiana treatment center, funneled
information through NHF so that their patients would have the necessary
contacts and direction. As part of this effort, Dr. Leissinger collaborated
with Keith Hoots, MD, director of the Gulf States Hemophilia and Thrombosis
Center in Houston, TX. Dr. Hoots is also the chair of NHF’s Medical
and Scientific Advisory Council (MASAC).
Soon after the storm and subsequent flooding, the Gulf States center
was ready to write and fill prescriptions for factor products for displaced
patients. Dr. Hoots explained, “I tried to act preemptively, taking
into consideration legal, logistical and financial issues in order to
be prepared to provide treatment for patients.” In addition, Dr.
Hoots along with his colleague, Dr. Deborah Brown, both volunteered to
treat evacuees at the Houston Astrodome.
Pharmaceutical manufacturers made significant compassionate factor product
donations to help patients in the three affected states. NHF also received
several donation offers of factor and housing from concerned individuals,
which were forwarded to the Louisiana Hemophilia Foundation, based in
The Louisiana chapter responded to the needs of community members statewide.
They coordinated multiple services and were able to offer direct
help including financial assistance, referrals to treatment providers
factor suppliers. They also made available crucial supplies such
as food, water, personal care items, diapers, rubber gloves, saline kits
and gas cards.
The University of Mississippi Medical Center in Jackson extended help
to displaced patients to provide acute care and assist with the acquisition
of factor products. The Mississippi Hemophilia Foundation was also prepared
to help displaced patients by offering basic essentials.
The hemophilia organizations in Texas, the Lone Star Chapter of NHF
in Houston and the Texas Central Hemophilia Association in Dallas went
from shelter-to-shelter to identify individuals with bleeding disorders.
The chapters were prepared to help those evacuated to the central and
northern part of the state with clothing, food and transportation to
the treatment center.
The Hemophilia Federation of America (HFA) offered office space to Tulane’s
treatment center staff. The Louisiana Comprehensive Hemophilia Center
accepted the offer and is now operating from Lafayette. HFA contacted
United Blood Services, also based in Lafayette, to make certain there
would be an adequate supply of product that, if needed, could be sent
to Louisiana hospitals. In addition, they contacted area hematologists,
who regularly treat patients and who agreed to write prescriptions for
factor and see patients who were experiencing a problem. In light of
the fact that hospital patient records were not accessible and telephone
service was almost non-existent, HFA notified representatives in Washington
DC about specific problems with access to care.
Dr. Leissinger was clearly inspired by the collaboration demonstrated
by many. “The support of the hemophilia community has been unbelievable,” she
said. It has allowed us to re-group and continue to help our patients
despite a major loss of institutional infrastructure. From a personal
point of view, words just can't express my gratitude to colleagues who
stepped in so quickly after the storm to help us get up and running,
and who continue to offer their support and encouragement. We couldn't
have done it without them!”
The potential risk of disease and other dangers is still a major concern
for local and federal health officials. In the interest of public health,
the Centers for Disease Control and Prevention have an entire section
on its web site dedicated to Hurricane Health & Safety. Areas of
information include illness prevention, food and water sanitation, clean
up precautions, environmental concerns, injury prevention and disaster
mental health. To check the site go to www.bt.cdc.gov/disasters/hurricanes/index.asp
Those who would like to make an online donation to NHF’s Hurricane
Katrina Relief Program can go to www.hemophilia.org/NHFweb/
Or you may send a check to the National Hemophilia Foundation and indicate
that it is for the hurricane relief program.