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Podcast Transcript: Jeanne White-Ginder

: Jeanne White-Ginder in the exhibition at the opening

Elizabeth Cohen: Good morning and welcome. My name is Elizabeth Cohen and I am a medical correspondent with CNN Television and I am proud and honored to be the MC of this event today.

Elizabeth Cohen: I want to introduce to you Jeanne White-Ginder. Jeanne White-Ginder is the mother of Ryan White and an advocate for people living with HIV and AIDS. Ryan White was a 13 year old Hemophiliac with AIDS and he was barred from attending school in 1985 on the grounds that he might give HIV to the other students. It's hard to appreciate this now but that's the way it was then. And he eventually won a court battle to return to classes, but the family still faced ongoing intimidation and harassment. In the five years before his death in 1990, Ryan became a national celebrity for his work to end discrimination against people living with HIV and AIDS. And his mother, we are honored to have her here with us, Jeanne White-Ginder who continues her work to share her son's remarkable story. It's a pleasure to welcome you here.

Jeanne White-Ginder: Wow, thank you. I'm so honored to be here amongst such prestigious people. My name is Jeanie White-Ginder, I'm the mother of Ryan White and I also have a beautiful daughter Andrea who is a sixth grade world history teacher in Umatilla, Florida and I'm equally as proud of her as I was my son Ryan White. Our story was started really in 1984, when Ryan White was one of the first children and first hemophiliacs to come down with AIDS. It was at a time when there was no education on AIDS and people thought you had to do something bad or wrong to get the disease, otherwise you didn't get it. People were afraid that kissing, tears, sweat, and saliva spreaded AIDS. I would try to explain to people, "Well, he got it from his Factor VIII used to treat his hemophilia" and they would say, "He got it how? Why don't we hear of others?" In 1985 as they started bringing in all hemophiliacs they found out that 80% of them was all HIV infected. But this brought on a lot of discrimination that our family faced. Ryan wanted to go to school. Only given 3 to 6 months to live he wanted to go to school and be just like everybody else. However, the school system put obstacles in front of him. They discriminated against him, would not allow him to go to school. But concessions were made and he eventually won the right to go back to school.

Jeanne White-Ginder: Ryan White died April 8, 1990 at the age of 18.

Jeanne White-Ginder: This mother believed in miracles, this mother believed that there would be a cure someday and I always thought that if I believed hard enough and I believed strong enough that I would get that miracle. When my son Ryan White died it was very, very hard. I used to always just follow Ryan around; I mean I used to always give him all my support. But when he was gone I felt like my life had literally ended. I just thought what is the use of miracles, what is the use of cures if they don't work or if you don't get them. I was very fortunate to have a big support team.

Jeanne White-Ginder: Senator Kennedy and Senator Hatch had just named a bill after Ryan because they said that no one has given so much attention to this disease and brought forth so much publicity and somebody has finally put a face to this disease that people can relate to. They said, "We would like to name it the Ryan White Care Act." And at the time, never realizing how enormous it would ever become, I just said, "Well that would be nice." Well, a few weeks after Ryan's death, Senator Kennedy called me, I was feeling sorry for myself; I was just questioning God, questioning everything; why? Why did this happen to our family? And Senator Kennedy called and said, "We would like for you to come to DC." I said no, I said you know, "Ryan used to do that, not me." He said, "No, we really need your voice. We would like for you to come to DC and talk to senators." I said no, I said, "I'm not smart enough," I said, "I know nothing about the government," I said, "I'm afraid I would hurt the cause more than help the cause." And they kept persisting but I kept saying no. Finally, my friends from AMFAR kept calling and saying, you know, "please, please do this for us." Finally, Senator Hatch called me and he said, "Jeanie, we're not going to take no for an answer." He said, "I have 20 senators lined up for you." He said, "All we want you to do is tell these senators what it was like to watch your son live and die from AIDS." I tell you, I—it was hard, it was hard. He convinced me to go to DC and just tell my story. He said, "We'll have people that know about the bill, you just tell these senators, OK?"

Jeanne White-Ginder: I didn't feel like I did great, but for the first time I felt like maybe I had a voice in this AIDS epidemic. I felt like just maybe I had the inner strength to do something that I never thought I could. Especially in school, in high school when I didn't take–I didn't do any oral book reports, I took an F instead of giving an oral book report. I was always very insecure. Even working at General Motors I can remember days when people would be absent and people would talk about the person who was absent so I never wanted to be absent because I didn't want people to talk about me. So, but I found the strength. And I think it's a mother's strength because I think that sometimes, because of the love of your children, you can do a lot of things that you never thought you could. And this is one mom that has seen this epidemic, through the eyes of moms and dads and seen the suffering, not only the person with AIDS, but also through the eyes of the moms and dads and the families. So, please, if something touches your heart, you go for it. Don't think that you can't do it, because you can make a difference in the lives of people that you love and people you care about. Thank you.

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