Washington, DC – Tomorrow, hundreds of thousands of people in our nation and around the world observe World AIDS Day to raise awareness about HIV and AIDS.
World Aids Day was established in 1988 by the World Health Organization (WHO) to ensure renewed and continual attention to the threat posed by HIV and AIDS. The Center for Disease and Control (CDC) estimates that over 1 million people in the United States are currently living with the HIV infection.
Hemophilia Federation of America (HFA) observes and acknowledges this day to honor all the hemophilia community members who contracted HIV and Hepatitis C after injecting contaminated anti-hemophilic clotting factor prior to 1985. Approximately 10,000 people with hemophilia contracted HIV and Hepatitis C during this time; more than 8,000 have died.
“In honor of our fallen community members and those who still struggle with co-morbidities from contaminated products, we offer gratitude for your heroic diligence and sacrifice in ensuring a relatively safe blood supply for all,” said Kimberly Haugstad, Executive Director of Hemophilia Federation of America. “This annual event focuses attention on the importance of comprehensive health care. Such care is at the heart of major changes currently happening to our health care system, and can positively impact families.”
Comprehensive care is vital and essential to treating the physical, emotional, psychological, social, and educational needs of people with hemophilia and other bleeding disorders.
*Photos/personal stories available and can assist media in setting up interviews.
About Bleeding Disorders
Bleeding disorders are a group of conditions in which there is a problem with the body’s blood clotting process. These disorders can lead to heavy and prolonged bleeding, either spontaneously or after an injury.
An estimated 3 to 5 million Americans have a bleeding disorder, including about 20,000 with hemophilia. Worldwide, one in 1,000 women and men have a bleeding disorder. However, 75% still receive very inadequate treatment or no treatment at all. Bleeding disorders can affect all ethnic and economic groups.
Hemophilia and von Willebrand Disease (vWD) are two of the most common types of bleeding disorders and are lifelong, genetic illnesses in which one of the proteins needed to form blood clots is missing or reduced.
Hemophilia is a sex-linked, hereditary blood clotting disorder. The underlying cause is missing or deficient protein — known as factor — that is needed for blood to clot. The bleeding can occur spontaneously and/or after injury. Bleeding episodes may be external or internal into joints, muscles, the abdominal cavity, brain, and other organs. Untreated bleeds can lead to crippling deformities of the joints or life threatening bleeds within the body.
Currently, there is no cure, and medication needed to treat the disorder typically costs $60,000 to $300,000 annually per person.
About von Willebrand
Von Willebrand Disease (vWD) is an inherited bleeding disorder with similarities to hemophilia. vWD is caused by a decreased or defective function of a protein called von Willebrand factor, which is necessary for normal blood clotting and affects men and women.
Hemophilia Federation of America is a national 501(c) (3) organization consisting of 36 member organizations and numerous individual members who offer assistance and grassroots advocacy education on behalf of the bleeding disorders community. Incorporated in 1994, HFA provides programs and services to improve the quality of life for persons with hemophilia, von Willebrand disease (VWD) and other rare bleeding disorders.
For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.