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NHF and Community Respond to Gulf States Hurricanes
 

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 to treatment.

“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 Baton Rouge.

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 and 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/
katrinaDonation.aspx?menuid=38
. Or you may send a check to the National Hemophilia Foundation and indicate that it is for the hurricane relief program.

 

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