The story of AIDS is a story of darkness, and a story of light -- of hope, healing, and gratitude.
One of these stories is that of the hemophilia community, which nearly thirty years ago suffered through the loss of thousands of lives.
Hemophilia is a genetic condition that makes it difficult for a person’s blood to clot. Common sites of bleeding are muscles and internal joints and organs, including the brain, which can cause injury and death.
In the 1980s, the hemophilia community’s lifeline was a medicine – clotting factor-- derived from a large and diverse blood supply. It was only after people with hemophilia began to be diagnosed with HIV that they soon realized the blood supply was tainted.
Eventually, 90% of people with severe hemophilia were infected with HIV from contaminated factor.
Cries for help were met with silence from drug corporations and the federal government. People with the disease were left to fight this fight on their own, and they have served as the guardians of the nation’s blood supply since then.
This week marks nearly thirty years since the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was signed into law, creating the most extensive federal program that provides services exclusively to people living with HIV. Ryan White, a hemophiliac, whose story captivated our nation and the world, never lived to see passage of the new law, but his bravery, courage and heart will never be forgotten.
In his honor, and for all those lives lost in the hemophilia community to AIDS, construction is now underway at the National AIDS Memorial for a beautifully designed memorial feature to forever remember and honor their legacy.
When completed next month, the Hemophilia Memorial will consist of a new stone circle inscribed with the names of those within this community who lost their lives to AIDS. It will also pay tribute to the courage and activism of those who worked tirelessly on behalf of the hemophilia community to ensure America’s blood supply is safe and this type of tragedy never happens again.
When completed next month, the Hemophilia Memorial feature at the National AIDS Memorial will forever bring the hemophilia and gay communities together, bound by their common stories of fear, prejudice, loss and hope.
Were it not for the strength of so many in both our communities who stood up during the worst of times, the breakthroughs we see today in HIV research, prevention, and treatment would not have happened.
Today, horrific events display the same type of discrimination, hate and fear we experienced nearly thirty years ago. It reminds us that while much progress has been made, now is not the time to rest. The greatest way to honor the nearly three quarters of a million Americans who have died of AIDS is to pledge not to ever return to a time where stigma and fear ruled.
By continuing to tell our stories and working side by side we will help ensure that future generations understand the past and can use those lessons to shape a better tomorrow.
Each name inscribed at the National AIDS Memorial will help do that, and as well, tell a story of a person who was loved, and who was gone too soon.
John Cunningham is the executive director of the National AIDS Memorial. The Ryan White CARE Act was signed into law on August 18, 1990. The Hemophilia Memorial feature at the National AIDS Memorial will be completed in September 2017. For more information about the memorial and how to have a name inscribed please visit www.aidsmemorial.org.