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A Place of Unity
& Remembrance
National AIDS Grove Memorial
Hemophilia Dedication
By Sonji Wilkes, Staff
I t was July 16, 1982 when the Centers for Disease Control Through a partnership with the National AIDS Memorial
and Prevention (CDC) released its Morbidity and Mortal- Grove, Hemophilia Federation of America (HFA), the National
ity Weekly Report (MMWR) with the headline, “Epidemiologic Hemophilia Foundation (NHF), a hemophilia memorial will
Notes and Reports Pneumocystis carinii Pneumonia among be established at the Grove. The dedication will be held on
Persons with Hemophilia A.” The report listed three cases in September 16, 2017 as part of the National AIDS Memorial
patients with hemophilia: two had died and one was critically Grove in Golden Gate Park in San Francisco, CA.
ill at the time of the report’s release. All three were heterosexu-
al males and none had a history of intravenous (IV) drug use. “There is something spiritual about the Grove,” explains Kim-
Pneumocystis carinii pneumonia (PCP) had not been previous- berly Haugstad, HFA’s CEO & President. “As we move forward
ly reported among hemophilia patients, and at the time, CDC to have a memorial here, I’m pleased that HFA has been able to
noted that the only other groups of people who were present- contribute to the capital campaign and has made a meaningful
ing with similar symptoms were homosexual males, individu- contribution to the process. That unity is only going to make
als who had history of IV drug abuse, and Haitians who had this place so much more special.”
recently entered the United States. The unusual rise in PCP
patients across the United States ultimately led to the discov- The Hemophilia Memorial will be a place where the bleed-
ery of Human Immunodeficiency Virus (HIV) and Acquired ing disorders community can grieve and remember. It will
Immunodeficiency Syndrome (AIDS). be a place to honor the past and look to the future with hope.
Strengthening these community bonds, family members have
The hemophilia community was in a state of shock as we the opportunity to have their loved ones’ names engraved in
learned that men with hemophilia began to contract HIV and the crescent for a nominal fee.
Hepatitis C through their clotting factor. At the time, pharma-
ceutical companies were not heat-treating the product, and re- “The hemophilia community is owed an enormous debt of
combinant factor had not yet been developed, so if one plasma gratitude for its (unintended) role in alerting the country to
donor out of thousands was HIV or Hepatitis C positive, that the contamination of the blood supply from the 1970s through
entire lot of factor became contaminated. Clotting factor con- the 1990s. Faced with evidence that pharmaceutical companies
centrate had only recently become available for home use with- and government regulators knew that the treatment for their
in the last decade, allowing patients who had previously been disorder was contaminated, they launched a powerful and in-
tethered to the hospital or local hemophilia treatment center spiring fight to right the system that failed them and make it
to begin to experience a sense of normalcy, only for it to be safer for all. They have stood as guardians of the nation’s blood
snatched away by an opportunistic and deadly virus. supply since that time,” says John Cunningham, Executive Di-
rector of the National AIDS Grove Memorial. “This story will
By the early 1990s, nearly 90% of patients with severe hemo- empower communities for generations to come, but only if it’s
philia had been infected with HIV or/and and Hepatitis C. The known. The National AIDS Memorial will ensure that [this sto-
bleeding disorders community was losing not only patients, ry] is told with reverence and dignity – and that our lost broth-
but spouses too: community members were losing their loved ers and sisters never be forgotten.”
ones daily.
To have your loved one’s name engraved in the Hemophilia
In the decades since, the story of the bleeding disorders com- Memorial at the National AIDS Memorial Grove, visit www.
munity’s quest for answers has been told, but not always widely aidsmemorial.org/news/hemophilia. General donations for the
or to a public audience. Up till now, family members who lost completion and ongoing maintenance of the project are also
their loved ones because of HIV had no public memorial to go welcomed and needed. n n
to for remembrance, meditation, or healing.
Fall 2017 | Dateline Federation 5
