Interview with Dr. Anthony S. Fauci
Interview with Dr. Joycelyn Elders
Description of the video:Okay. Good morning. My name is Bill Yarborough and I'm the Senior Director of the Center for aids STD prevention. And today, the middle of December, I'm virtually with Dr. Joshua and elders. And we are here following urea, the awarding of Dr. Elder's, that prestigious Ryan White Distinguished Leadership Award on December the 3rd this year 2020. Dr. Elder's is a former Surgeon General of the United States, is the 13th recipient to the Ryan White Distinguished Leadership Award, which also included two former Surgeon General's C. Everett Koop and David Satcher. So she's that third former former Surgeon General. So congratulations Dr. Elder's grow this well-deserved recognition. Dr. Elder's served as a Surgeon General of the United States from 1993 to 1994. She was the second woman, the second person of color, and the first African American to serve in this role. She was born any poor farm sharecropping family in a rural, segregated part of Arkansas. She graduated as valedictorian of her senior class and went on to get a degree in biology from the lender Smith College and arc assault, and a medical degree and 960 that University of Arkansas Medical School with a specialty and medical endocrinology. And through her career, she's published over 100 articles. I'm just giving you a brief overview of her. There's a lot of information that that that you would find on the Rural Center for aids STD website. And they will be a recording of the entire awarding of that, which gives much more detail about her crew. I'm Dr. Elder's was nominated by President Clinton and confirmed as Surgeon General in 1993. And certainly she has many accomplishments and maybe good or bad, one of the most that she's noted for. As her time as a surge of dead rope. Saad mentioned that a little bit about that. But it's all a part of her renowned and outstanding career. But what I think got a lot of visibility. So as Surgeon General, she quickly faced skepticism about her advocating. For more information about sexual and reproductive health and health care for young person's. Yet, she continued to raise these important issues that some people found were controversial. And late 990 for Dr. Elder's was invited to speak at a United come, United Nations Conference on aids. She was asked if it would be appropriate to promote masturbation as a means of preventing young people from engaging in risky forms of sexual activity. She replied, I think it's part of human sexuality and perhaps should be taught. This comment raised public dispute, resulting in the loss of the support of the White House and Dr. elders, who was forced to resign by President Clinton. Over the years, she has received numerous expressions of praise and admiration, including the Ryan White Award. Just for example. I mean necessarily something Time Magazine recognized her among the most influential women in the past century. I mean, that it was real and this is worldwide competition. Each recipient of the Ryan White Distinguished Leadership Award is interviewed like I'm doing now. And this interview is placed on the website of the rule Center for aids, STD prevention. And so what I'm going to do now is try to capture which Dr. Elder's hair, her life as a person growing up in southern Arkansas, person that became a physician. And then new world got better when she became a physician. And it really got better when she became Surgeon General because she had a voice that she was committed to, to defend the right of young people to know. And her stance on that reminds me of a famous study that was done many decades ago in Massachusetts. And he asked young people the kinds of things that they want to know. And it came out with a publication called teach me what I want to know. Now. Isn't that amazing? They weren't afraid to ask. And we know that many health administrators and educators are afraid to ask. So here we go, Dr. Elder's, I'm going to start asking you some questions and who just have a conversation. Thank you. Okay. So you grew up in rural South Arkansas? And so what was that like? And how did it shape you to become the adult that you did that you'd never know how will we carried out a different way that at growing up and we'll set our actions our first bot, we were very, very poor annually, a sanctuary gaining seven. And my parents were very poor black aircraft carriers. So we had to work very hard growing up. Children from sunup to sundown. And it was, we're talking about morphine or the Bible. It work we were working to get booby. He makes sure we had plenty to eat during the winter. That was before the time the food stamps and Medicaid came and spoke step of that sort. And so we had to really try and preserve, put up on it. Yeah. Corn and peas and beans and potatoes. To last through the through the winter. In order. We raised cotton and corn, and that was my mother. Can loads of everything that you've built it it will be we didn't care if we didn't need that was we didn't go to the store and buy canned goods out of the shell. I write, my mother's canned peaches are still better than any. I've still got that right. And so that she can yeah. Like when my dad would kill how we can soft dressings, even though it was bury it. As I said, the city poor is very different from the country who owe us. We add, yeah, we really had nothing but my dad kill rabbits and raccoons and dear whenever. So for blue consumption. And so that, you know, and I look back on it and I think it was probably a pretty well bet if we didn't get jump, we didn't have jumped. Pure cure. We don't really talk about, she's talking about french fries. Heavens. We raised our potatoes and my mom cook them a very sound. Branch Branch court, Republic. We had boiled potatoes and dad. Yeah. And you may have them down. And then what was the bat? But anyway, so I'm just saying country live in what we we had tough but we were talking about survival and it was hard work. Yeah. At the time. But they have got plenty rectus ads. Yeah. So as you look back on that, on that, maybe as a sort of hard to, to identify, but did you learn certain values that that really helped you become the person that you are? You're absolutely right. See, I was the oldest. I don't hate children. So when we are the oldest, you'd probably end up with some value that you may not have that never way. That should be banned. The obese debate children act at yeah, I was always would go 1. We would have to go to the fields to chop happy and pick cotton or whatever. Well, you know, I often yum yum looks at a at a Children's have some many times my mother couldn't go with it. Back in the days when women were often stayed in bed, the 30 days after an MI, maybe 300 days are some fades. But be that as it may. But I would have to go and take my sisters and brothers to chop cotton and do whatever, whatever was going on in the field at that time. And I learned one of the things I learned a lot about it. And I learned a lot about organization. And I learned a lot about habit. Knowing what, you know, that I couldn't just go out and yeah, I love it my sisters and brothers over that he needed to get work done. I had to learn how to organize and get them to help get the work done. And now, though, those were some skills that I learn and carry me to and I'm mom was always tell who's always do your best to tell us our best today. Well, she said, When you've done your best, may not be the best. That can be done. Good point. But you've done your best. That's that in and she taught us all a Xiang have an eighth grade education. So gymnast smart eighth graders have. But anyway, she said, I always tell the truth. He says that they failed. It's a PEO. The truth is the day he began to doubt. And so she always do yeah, Actually, each breath, we should always have the true knew your best. And and to make sure that we were yeah, treat other people right. At b, there were just some basic things that horse but she stressed all the time and I still carry those values with me today. Whoa, whoa. Story. Yeah. It's resolved. Yes, that that you learned some valuable lessons because of the way that you carry yourself in a way that you have to remember to add three or her belt law. Actually, thanks for sharing all that. We're going to skip some time here and go ahead a little bit to your decision to become a physician. Was there some sometimes the light ball was it sort of term solid angle. I want to do that. Or maybe an experience that you didn't know you're going to have or surprise experience or some people's gradual. So let us tell us how you arrived at the decision that you'd like to be a physician, that you'll be going up and infantry, I was staring at cleaning that out of the current in a rag goods store. At least it would get me out of the cotton belt. And so that's how I found out about it. But then when I was a freshman in college, I ducked IV therapy. Jones, the first black person to attend the University of Arkansas Medical School. She came and spoke at are what we call capital programmer special program that has been put on that sorority. He talk about the difference between the high rose says in-between and the misty pads. The rest. Well, to info. And open that they are heard her talk until this day, until she died that night, num1 years. So two years ago, I still clearly remember her coming to our school talking. And from that day forward, I will need to be as the jest soccer. And so he's so that I I didn't now we've got wanting to be a doctor. But I knew I wanted to be adaptive. But do you know we were so poor I could even think about it. And Bosch, But I went and joined the army. It means the GI Bill to go to medical school. Oh wow. Yeah. That's a really interesting story. I think a lot of us that can recall, I, I can recall in my career that a conversation with a former professor I had about getting a doctorate degree and be professor Bengal just sort of like, Hey, I'm selling it. You know, it's, it's great to be able to, to recall those pebble to what kinds of things that maybe were just by random. If I had known this person, I mean, who knows, you know, what, what direction would have been. So so as you begin your medical career, you soon discover a commitment to chew your head, that to advocate for sexual health knowledge for young people. And did you feel like that you are sort of unique amongst your colleagues of having this kind of commitment where I'm not sure. Yeah. I knew very early that yet. Then I went into medicine. My need to be a new kind of doctor. I wanted to be. And then I was taking care. That was looked upon. The University of Arkansas. Oh, doctor who takes care of children that have something wrong with their sex? Yeah. That but but but but that wouldn't because I was taking care of children with ambiguous genitalia, have a pair of radiogenic, it'll send up. I would have endocrinologists. Yeah, so that's happen but that's how people knew who I knew who I was. And that's a way to say so. But I knew very early that I really wanted to know what once I learn, I wanted to go into medicine mindset and I couldn't go right away. But and then I went and joined the army. I went, I went down to join the army. I finished college. And they said, Why don't you don't. That was trying to recruit people into physical therapy. And so they recruited into physical therapy and I joined the army. They became a physical therapist, loved it, but use the GABA-A, I'll do it in medical school. And so but I made it sure did. Yeah, that's really good. Did you know as you continue your career, did you did get your medical degree? I mean, your known as a as a person who would would speak what you thought was right? Even though some people may not agree. And so what gave you the strength and courage to do that? You know, I think it was probably my mother or father when grandmother who always felt that I should always be of the truth, is I always tell the true. She says that they say, tell the truth. You will always be three. Wow. And so at the, very strongly about talking about young people. And when I became a endocrinologists, I really spent all my time really educating young people about their health, their sexuality, their endocrine ion, and who they were and be proud of who they were. And so we and my parents really, really never raised as f, could be ashamed of our sexuality data. I mean, I'm not a fan but said Go out and she's out. But I'm just saying that they were I was about to be proud of your sexuality, but it's your privacy and you take care. Yeah, in that sense, not in a negative sense. Course. Well, that's a gift to be raves. Were you accept yourself as a sexual being? Yes. Without apologizing or shame. Yeah. But I did appreciate and semi stand but it all yeah. Yeah. So you know, when people began to question maybe some of these stances that you had like more availability of contraception and talking about masturbation. So what did did you feel intimidated or did or how did you how did that what did that do to your hand? Would, you know when you started he said, Oh, wow, beautiful people or don't like what I'm saying. Doing, Thank you. I guess act out that atleast as a frame the right thing. Yeah. My parents really never never brought us up to be ashamed of our sexuality at yeah, that they always thought of the importance of protecting our sexuality and making, making sure we weren't out when promiscuous enter tech sector, I will be in our bodies, but never, never in any way to be ashamed of it. Well, that's what a blessing to him. So now let's turn to this time when you were Surgeon General, you know, you were appointed by President Clinton. Do you think he had any hesitancy and pointing year relative to that? That maybe one. What I did it to you by your colleagues if you're outspoken about some of these things that they maybe weren't. So do you think he was hesitant or users or what? Yeah. How do you think about that? I think present tiny new light African about any new outspoken wise. Yeah. And he knew the thing that, you know, that Amazon was then to tackle back instead of me. And Erin. Thank you. By that, he wasn't there. Well, I know what you're about and I want you to go and I want you to be the Surgeon General and I want you to make sure we educate our children. It's in Mumbai. I want you to do is we need to reduce teenage pregnancy, which we were the second highest teenage and the second highest teenage pregnancy and in the world and at ease. And I want you to do something about that. And he always felt that you'd want to Eric to everybody. All people have as many children as they wanted to add it, make sure they were planned well-being of children. So we went out that we went out to educate and try and make after I became director. You see, when I was in a pediatric nephrologist at the medicine that they I was I took care of children with that who that ambiguous genitalia, upbringing, early development, or anything like that. They would they would even call a switchboard operator as well. We need to see that doctor who see children who have abnormal sex, or it's up in the switchboard new to send them to kill. It was but but I think that one of the things we've worked on his children, why don't we proud of their sexuality, but to protect their sexuality and you take, and to make sure that they didn't didn't do anything to really learn that Sandler. And I'm sure our doctors do that, but I mean, we really everybody knew I did that. Right. Yeah, no. Though there may be another people love talking about it. But you had the string commitment encouraged to that result in being more visible. And then, like you said, I want to talk to Dr. Elder's Ricci's back. She's the expert on all this and she'll tell you the truth. And so that's a great thing. It's a tribute to you. So plus, then talk about this United Nations Conference on aids course. You were asked the question? Yes. And did that surprise you? And did you have to ponder your response or it just sort of came out? But it surprised me that that would be bec question. But meeting, but I really knew everybody in every professional people's up and I didn't think that this movie. So when now I was asked a B, C, B a is thanks. Yeah, strengths and we flip that out. And then it's about why. I think it was the characters that you're asking me about masturbation. You know, I didn't know I had said aid, abstinence. They all signed up and then and then the d the duet of things I didn't even say my patient and I bet. Then he got up and asked me very directly and we asked directly. Have to yeah. Everybody knew I always ask the question now is answered it directly. And so I did. And well, of course said and you know, even if I had to give that answer this morning, I probably get the same word, wow, Well, good for you. So then, you know, I guess a lot of people are uncomfortable the whole topic anyway of even saying the word, actually I had, let alone something represents the federal government. But it's unfortunate it had to lead to two all you leaving US. Surgeon General. This feels makes me feel good at the fact that you're still proud of of what you did and watch your what you what you said, and what did the dismissal surprise you? Yes. It did surprise me, but it didn't surprise me to the point and I didn't. But Amazon to be open, honest than that. I felt that I was really I had to be open and honest for the children. That was a pediatric endocrinologist. And I wanted our children. I took care of children with ambiguous genitalia and MFA, but anyway, I'll always be proud of their thick brown. Let's model for all of us who are committed to advancing sexual health for young people to, to realize that. I mean, if a person wants everyone to approve, what do you do that indigo and sexual health are in the wrong field, right? Some people try to discredit at, intimidate and, and silence the voice. And those of us in sexual health education to really admire what you have you have stood for and your strength and courage and commitment to do that. In your career, you have faced criticism for being to fray, going to bold. And you've talked some about the kind of personal traits that it takes to, to do that. But if you were, you know, talking to some physicians in earlier, there are medical school. Maybe what you've already told us was what you would tell them. But Joe, anything else you'd like to add that you'd really tell them about being truthful to to the disciplined and being truthful to the principal. So of education. I think they have to act our bins, then it can be open about it. We don't act it shiny and then mean that we don't yeah, Our proud of I think maybe we don't meet. And and for that reason we have to make sure and we teach our young people will lean out. Yes, the app the same care about adolescent young people that we teach our adolescence to be crowded with your sexuality, but protected and respected and always do the things that you're proud of. And I feel that maybe we are open and honest in teaching our children. Act is no course. And so, and that's how I have it. That's how about we approached me. Yeah. Well, it's so refreshing to hear let because a lot of ways that people in Pandas that have a need to do that because of their occupation or even parents, I really struggle with that. And you don't, oftentimes in this field that you're in and I am as a, as a scientist and an educator, do you get many pats on the back and say, thank you. It's almost like we're walking down the hall and I think I'll go the other direction. So we have because they don't have the commitment and the strength and the courage and, and you know, it's because of the values that you have. Well, and I think most parents being yeah, I'm a pediatric endocrinologist. I guess not the most narratively, when I was asked about this 00, no doubt always wanted me. Oh, please. Please do so. So I I I never I never met a parent who did not want me to talk to their children about their sexuality, even though even though that the children who had precocious puberty, early sexual development, they wanted they wanted somebody to really talk with them and they wanted to talk with them. And so yeah, to be proud of that whole course and night. Comparing what you're saying. And I, I believe this myself. Most parents want their children to know about sexuality, but they don't know how themselves to approach it or to do it, right? Yeah. And so and of course, with fear, prestige and as a physician and those are woven physician so forth, you had a lot of credibility. And so it's really sort of a calling to say, you know, I have an opportunity to hear to impact some young people. Yes. And, you know, there's a lot of award in life. It could be an NIH salary and secure job. But when you educate a person and begin to accept their sexuality and are responsible for the international price to that Smiley break. To responsible fact that, yeah, right, It's just really quite rewarding. So as you look back on your career, did you ever imagine the head, that's the creator that you add? Well, I think when I look back on my PR reacting, I probably reuse that I could imagine. I was starting out, I was a pediatric endocrinologist and I really am. But then I was referred all the children to do the hospital, yada. Yada. But that had ambiguous genitalia or any yeah, we didn't have a huge cadre of people. So I so I will have an opportunity to see a wide variety of children talking with parents who had children with different beliefs and thoughts. And I really enjoyed it. I think the parents enjoy and that kids enjoying it, and the children in Galilee and sell. And I'm really proud of bank rate where you should be. And, you know, it's really, many people are sometimes. And, you know, it's a really a blessing to be able to look back and, and to feel, you know, that the personal gratification of, of making a difference and that you live your professional career based on your tenets of your character. And so certainly, you know, you deserve or the Ryan White Distinguished Leadership Award. And what does it mean to you to receive that award? You can't know how much that really means to me. It it git add No. Yeah. I've known who ran odd amalgam brand wildlife are very long time and I'm very proud of what the banks that his mother had just stand up by a bar and worked for or children. And that to me, this was just really repeat. It really was very, very important. And a lot to me. And it means a lot to me. What we're continuing to do for young people that are coming along behind them and put them don't work. And for what she what she's down. I'm very proud of Ms. White, and I think that she really stood up and fought for for our Chow. Yeah. And really made a difference for our alkaline. And i'm I'm, I'm, I've been proud of her for a long time. And a this essence. We first got into the field and worrying about HIV, AIDS and ambiguous genitalia. Get lawn. That's what I've been. And I'm trying to make a difference for children and making them feel that they're important. And then and just go, do, go and do, but they want to do best. Wow. Well, thank you for those comments. I mean, you certainly do succeed. What do you want to be most remembered for? Opat? Think about what I want to be. The most remembered bar. I'm not sure I really know. But I want to think that death after elders who was always up front air and thought for the rights of children in the rights of people. Acting must be anchored. Mean. Yeah, I know they do. And that's one reason why you were selected as one of the 100 most influential women in the past century by Time Magazine, That's right. Your eye, a model for all of us and sexual health. And you got to Ryan White Award. And is there anything else that you would like to add that maybe we haven't addressed? Now? I certainly thank you for what you. Doing thank you Ben, to, to make a real difference in but haven't ran wider war arguably. I just think that yeah. And I think Miss way yep. Of what she's wasn't always easy. But, you know, I know that, you know, and, and, and, and so I DO. But the whole country really, really owes her real gratitude that maybe we haven't paid it yet. I know. I'm just being a mom, is it? Yeah. Yeah. I know. I have to add $0.02. But dev group but She's been anxious actual didn't know that. Yeah. Well, thank you for saying that he I've worked with her for over a decade on the Ryan White Award. And I got to know real well and I really admire and admire her. Certainly a role model. Yeah. Dr. Elder's, you are truly a public health hero. And your advocacy for young people's right to know about their sexual health. You advocated for what they want to know and what they need to know. That despite opposition, you're courageous belief and commitment to educate young established a model for all of us and improve the health of many people. As you have said, we've tried ignorance for 1000 years. It's time to try your education and bulk dry. That's right. Our admiration of you can the best reflect it. And just paraphrased quote from Martin, Martin Luther King Junior. The ultimate measure of a person is not how he or she stands in a moment of comfort or convenience. Where he or she stands at times of challenges in controversy. We are thankful for you and for what you stand for. Congratulations again on receiving the Ryan White Distinguished Leadership Award. It's been great that we could gave you this award and we admire what you've done and thanks for all of your contributions. Thank You, bet we also thank you for the contributions you've made. And they knew that making over the years and you've made it through upheld it. I hit the amines around. People walked around and in the cars and nobody taught me talk openly about. And I think, yeah, Anyways, aids made this come out and start talking a little more than we were ever talking before. And hopefully we began to eight, edgy, educate people. And we've tried ignorance. As I said for about 100 years that reflect this time. Try education. Well, okay, Thank you. Great way to end this interview with a famous quote of yours and congratulations again, recreate all you've done. Thank you.
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Interview with Dr. C. Everett Koop
Description of the video:My name is Bill Yarborough. I'm the senior director of the Rural Center for aids, STD prevention. This is a joint project of Indiana University, University of Colorado and University of Kentucky. We have established the Ryan White Distinguished Leadership Award. That award was established in 2009. A genie white, under Ryan's mother was the first recipient. And we're here today to present it to C. Everett Koop, MD. Ryan was a 13-year-old, typical Indiana rural youth who contracted HIV from tainted blood products for treatment of his hemophilia. And during this times, afterwards he was harassed, he was isolated that school taunting, and he received a lot of difficulties with public accepting his condition. And throughout all of this, he remained courageous, you remain determined. And Ryan's vision was increase aids awareness. Then also to end discrimination and stigma of persons with HIV AIDS. Throughout all of this difficulty, there was enormous media attention. It actually, he became a hero for many people in the country. Before his death and April the eighth, 990. He became well known and he had in his efforts to increase aids awareness. Soon after his death, the Ryan White the Ryan White Care Act was established. This act was the largest single federal effort to provide resources for persons with HIV aids. Before his death, he spoke to many schools and communities. He had his mother traveled around the country as spokespersons for HIV AIDS, right? Had planned to 10 Indiana University in Bloomington. But he, his death occurred before that. And within a few weeks here, we will be celebrating his 20th, the 20th anniversary of the death of Ryan. His legacy continues on and one way we continue his legacy is to recognize outstanding contributions through this award. In honor of the legacy of Ryan White, the Role Center for aids STD prevention has established the Ryan White Distinguished Leadership Award. And this award is presented for individuals for outstanding contribution and HIV aids. Today we'll be presenting to the doctor. Before we do that, Jeannie White, gender Ryan's mother, has a picture and words to say to Dr. Koop. This picture, doctor, Surgeon, Surgeon General Koop and right. And y and 980 a. And it is such a privilege to see you again. Thank you. Was such a blessing in our lives when you came forth when the political figures were not doing so, acknowledging this disease. And you said Ryan, why this boy should be in school. So I want to thank you, and it's so wonderful to see you again. Thank you from the bottom of my heart for all the people living with HIV and aids today, even you've made a difference in everybody's lives. Thank you. This award is given today to Dr. Koop for his outstanding contributions and HIV AIDS prevention. There are very few people they've done the courageous things that you did in your Surgeon General's report, your pamphlet that went out to almost every household United States. Understanding aids. We admire the courageous efforts that you have and that you did. And that certainly made a big difference in our efforts to control HIV AIDS. Certainly it's an honor for the rural Center for aids STD prevention to present you this award. And I'm going to read what toward says before Genie presents it to you. The Rose Center for aids STD prevention at Indiana University presents to Dr. C. Everett Koop, MD, Dr. science, the Ryan White Leadership Distinguished Leadership Award in appreciation of your numerous outstanding contributions to HIV AIDS prevention and for being the exemplary bear the standard of excellence and commitment needed to combat HIV AIDS. March the 17th, 2010, Hanover, New Hampshire. Genie, could you present that to Dr. Koop? Thank you. Congratulations. Yes. Congratulations. Thank you. Yes. Dr. Koop, you may recall recall in June a second or excuse me, the June the fifth 1981, was that infamous CDC report in the mortality and morbidity weekly report. About five young men in Los Angeles who were diagnosed with a rare pneumonia, pneumocystis pneumonia. And that really brought attention, I think too many people in the country about possibly what might be occurring. And course it was known as aids at that time. But that report came out a few months before you actually sworn in as Surgeon General in November of 81, when you became Surgeon General, did you ever imagined that you would have to face such a major health problem such as aids? No, sir. I never imagined it, but I can tell you if ever there was a disease made for a surge in general, it was aids. And you have to remember on that day that you told about the first report from MMWR? No one ever heard of aids before. We didn't even have a name for aids. The government had no position, but this is very important. The cabinet of the President of the United States had a position, not the president, but the cabinet. And it was this who gets aids, promiscuous women. Homosexual men, IV drug abusers, people were pregnant and shouldn't be, don't they deserve what they get? And that was if you want to say it, the official word that you would get if a member of the Cabinet talk to you about aids? I was the only person in the Public Health Service who had ever seen a case of pneumocystis, Korean ion ammonia. And in my job as a pediatric surgeon where you have to diagnose that and ammonia by an actual lung biopsy? I saw them all the time. Well, you'd think that would give me maybe that much head allowing with these guys. I had I had questions immediately because shortly after that, they came back and reported 20 young men with another disease. And I was the only person that ever saw that. But I raised a question. And this this should be history. I raised a question and I said, I know nothing about what we're talking. But I do know this. You are does cussing a new disease that is contracted by homosexuals. You have one huge load on your hands because of the forced sodomy in prisons. And I said The Public Health Service, as you know, has control of the federal prisoners and we have no preparation whatsoever if there is a connection where, you know, they laughed at that. And a couple of years later, just the people leaving the DC jail had 70 percent positivity for eight. If I'm describing to you something that Sam very chaotic, it was, wow, so that was, that, is that the way you would characterize the federal government's response after that CDC report? Yes. As chaotic. So how were you able then as the deaths of aids mounted, I mean, you were really the highest officials in Washington DC that actually mentioned aids. That first the first person to really tell it. What kind of barriers did you have that? Well, Watson, I believe in filling holes. And when people leave government and there's no bunny appointed to do their job, I stepped in and did it because I've had it. I don't see how when I was a new kid on the block, I didn't even know the rules here. You don't do that, but I did it. And pretty soon people had confidence in what I said and they knew I never lied to them. And I not only told them about how you get aids, but how you don't get aids. Because you will remember this was an era in which people didn't know how you connect, contracted aids and they thought she got it from mosquito laser handles? Yes. Computer keyboards. Mosquitoes for rights. Yeah. And we had we had a wonderful study on hemophiliac, people who had grown up together and who live together. And we found that they shared towels. 6% share toothbrushes, that all sorts of things were shared and there was no contamination and no passage of the disease gave us gave me tremendous authority when I said, it doesn't do it that way. Yeah. So in those early days, in your early years as Surgeon General a bit a lot of times did you feel alone in your voice? Oh, sure. I felt alone and, you know, I I didn't have anybody stand that in the sidelines and go get him, Boy, it right? Yeah. As a matter of fact, I am people in the cabinet were really opposed to me. And I, this is pure speculation. But I bet Ronald Reagan had more requests to fire me than any other member of its government. Well, certainly in all the things that you did in your report, the Surgeon General's report, I think really established the importance of science, what science says about disease transmission. And in this report, you talked about sex education for, for young people. You discuss condoms. I mean, those are really were sort of very unique things at that time. What led you to publish that report? Well, necessity. What really stimulated to do it was, I don't have any money. The Surgeon General has no budget. But France was putting out some kind of propaganda to the people of their country. And then I said, if they can do what we can do it. And as soon as I published that report, you're talking about France copied a big piece of it, and Australia copied a big piece of it. And I said, I went to Congress and I said, ridiculous for something that your Surgeon General wrote is being copied and used to prevent a disease that we know more about. But we haven't gotten enough money to tell people about it. Well, I got money hand over fist from then on and it was used. Well, and that report you're talking about is just as true today as when we wrote it, except for the dosage of drugs. Yeah. Right. Yeah. Wow, that still remains true. And I think it illustrates that, that there's no particular newer ways of transmission that people thought about though. One very strong a12 thought about, well, yeah, of course it right, but I'm not sure I want it. I want to tell you another thing. Where criticize so many times that we didn't move faster every time anybody sent an idea and no matter how cockamamie it was, we tested it. And that's all to the credit of Dr. Tony Fouchier. If somebody wrote in and says, if you take bee's wax and the role it in flower and put it on your screen. It'll keep, keep, keep the disease out. We would try it well, so you test it and say, right, it doesn't work well. And so we know we got rid of mosquitoes and better bugs, months, odds of other things. But the one, the one voice that you could understand and that you could count on being truthful and not lying about it was the voice of the Surgeon General, right? And certainly all of us are very, very proud and pleased that you did. And I think it really set the tone for what the Office of the Surgeon General could do? It did really. Then after that, you came out with this pamphlet called Understanding aids. And that was sent to every American household. It was really the government's first and I guess, only attempt to reach every citizen of this country, as well as the mood of the country or the mood of the administration before you may have mailed that out. I mean, where people H's are worthy worried. Well, France again had sent something and I said, if a country like France that doesn't have nearly the resources we have, nor the experience clinically, nor the experience. Research can do this for their country. We look like Pinker's doing nothing about it. And I said, we should notify every single household in this country. So no one can say, I didn't know. And that's how it came about. And it was a big thing, the unfolded, right? And it also is still everything in its true. So after was published where there wasn't any sort of fall out from that or anything, negative things or how did that how did that change your your role as Surgeon General in any way? Well, it made the role of Surgeon General much more prominent. It also started a spate of very funny cartoons that the country was flooded with cartoons about the Surgeon General's pork. You know, one of them I remember was a rural mailbox and the lady of the house was lying prone in the streets. That's it. Surgeon General must have sent and another letter. But those cartoons played their role. And. There are a lot of them because I have a 101 of them saw the Muslim and a bunch of math to do these reports. And particularly this understanding age, that's one of the things that you're most known for. And I think it took a lot of courage for you, so and it may not have had that much really support among your colleagues. Did you get your strength to do the these kinds of things? Well, you know, I I was raised if you're going to do anything door right. And I think that it's it's that simple. Be honest. And if you're going to do anything, do it right. It keeps you out of trouble, if we would, if we had that go on in our government of a boy, we'd be way ahead. Some people have called you the first celebrity Surgeon General. That you remember that? Abby, do you consider yourself a celebrity Surgeon General? I did that make your job more easy or did it make it more difficult? I don't consider myself a celebrity. But the publicity that sort of hung by these various reports you're talking about made me a very popular speaker. And sometimes I gave four lectures in four different cities on aids and the same day. And I enjoyed it. I enjoyed more than anything. The question and answer periods because that was the time I find what the public had incorrectly believed and I could correct it before hundreds or thousands of people. And if you have to be a celebrity in order to get that done, I take that I certainly don't never sought the role of a celebrity and I I never thought of myself as a celebrity Surgeon General. And but there's no doubt about the fact that nothing succeeds like success. Sure. And if you have a couple reports like that, and you remember the first report that you mentioned was requested in-person by President reagan. So that put a stamp of approval and authority on it. And it, it was very funny that you wouldn't believe how many people in the United States government thought that they ought to sign it. So there is desire, I would say, among of the government people to assume the celebrity role of the Surgeon General. Sure. And one of the best people we ever hadn't government was the The man who was Secretary of HHS? Hhs. Hhs at that time. And as a family practitioner who became three-time governor of Indiana. And he said to this huge group of people who thought they should sign it. He said, You know, when I was a country doctor and I got a consultation from an expert and I didn't take it. I was a fool. He said. So I've had some focus groups. And I said, Who would you like to receive this message from? And he said, it may surprise you that every one of them said they'd like to hear from the Surgeon General. So he said check you are signing this thing. And I said, You know, Dr. Bowen, I think that the buck stops on your desk and I think you ought to sign it. And I said You've been so supportive in getting all these things done. We couldn't have done it without you. He said, I heard my people. They have said Cool, should sign it cooped on the assignments. So that's how I got to say, Yeah, that's great. That's a very nice story, a very interesting one, particularly I'm, you know, that he's a former go to the state where the Rural Center for aids, STD perhaps it has housed and and you know, he's, he's still tend some advances. So thanks for sharing that story. So as you look back Dr. Koop on your career, especially your work and aids prevention area, what are your thoughts? And what would you like to be most remember about in your work to prevent HIV aids? Well, I'll give you the answer. I gave somebody else to that same question. I I enjoyed a very unusual relationship with lots of people. One of them was the press. And the press gave me a farewell party when I retired. That's pretty much unheard of. And one of the senior members of the press corps said, Dr. Koop, how would you like to be remembered? And I said, I would like to be remembered by you in such a way that may be 10 years from now. You right? About me. And you say, you know, even after he left office, he was the health conscience of America. And that's what I tried to be. Thank you, Dr. Koop for your insights. There has been a great interview. I really appreciate you providing the information about what happened when you were Surgeon General. Thanks for all that you did. Certainly role appreciative and congratulations on your award. Thank you, sir.
Interview with Jeanne White Ginder
Description of the video:My name is Bill Yarborough. I'm the senior director of the Rural Center for aids STD prevention at Indiana University in Bloomington. And with me is Jeannie White Ginder, Ryan White's mother. And the occasion that we're here is the celebration of Ryan's life. But also remember of the 20th anniversary of his death. Ryan died April the eighth, 990. And here at any adversity actually, tomorrow and Friday, the 9th, we're having a special occasions in which we honor Ryan and honor his legacy and gt will will be speaking. Actually GD, our center here had Create has created a new award called the Ryan White Distinguished Leadership Award. And the honor of Ryan and people, they've done outstanding work and aids prevention. And actually last year in 2009, Jeannie received at first award and we're pleased that we're able to do that. So now less stiff talking about what the situation is right now, let's look back at the very beginning of, of Ryan discovery of HIV infection. Just tell us a little bit about how the medical community and the predisposition, so forth, what age they discovered that he was infected with HIV. High bail. Right? Turn 13 on December 6. So he had just turned 13 and it was just a few days later that he started getting the pneumonia. He started getting to where he couldn't breathe. They put him in the hospital. They treated him for bacterial pneumonia and he never got any better. Finally, they transferred him to Riley Hospital. And there the infectious disease doctor climb and madness. And they ended up doing a two-inch biopsy out of his left lung and send there was no aids test at the time, so true. Sent the results to Denver, Colorado where the results came back that he had pneumocystis, so the medical community was not prepared for that. I mean, they that's why they were treating him for bacterial pneumonia, so yeah, things changed. And after that is when the chaos started. Yeah. I want to talk a little bit about debt was you said it was just sort of knew and he epidemic, they didn't have much experience. Where were some of the medical staff very hesitant to, to be involved or worthy? Little bit uncomfortable with this. Now recognize what it is or or or did you find that that's not wasn't a particular issue? Now, it was a big issue at the house fell and not at first row now, I mean, at first, but the CDC started getting involved and the CDC had all these forms and I mean, there was like 20 pages they wanting me to fill out everything we do in our family. And I said, You know, and the gowns and gloves and masks all of a sudden start going up in the hospital. And that's when it started becoming scary for me because I mean, to me, this was like the government coming into an investigating us so to speak. And I I said, you know, we're a real affectionate family. We hug, we kiss, we share drinks. And they assured me me than back in 1980, 40th for that no family member had ever come down with aids. And so I had nothing to worry about. So I kinda thought maybe everybody, a lot more people knew about eight more about aids and I did because I didn't know anything. Sure. So that's kinda just how the medical the CDC, the gowns, the gloves and the mask. That's what's kinda started. And I'm sure you found him to be very helpful and very supportive for the information. Yeah. But I also noticed that certain people were always taking care of Ryan. I noticed they were asking for volunteers and I did not know that because Laura creature was her name. She always volunteer to take care of Ryan. But I also had an experience down in the canteen area. Andrea and I both we heard this lady say I'm not going in that kid's room and you're not going to make me. And I turned around and looked and it was a surgeon who did the surgery on Ryan and the biopsy. It was him and his assistant. And I sit, Andrea, I think they're talking about Ryan. So I me. Then you start waking up and you start you start noticing things like the nurses and, and so forth. And suppose you then, as time went on, there was a group of individuals that you felt really comfortable with, that the situation was he felt safe with under medical community who really gave a lot of primary care to right? Definitely venue. As more of the doctors there, Riley especially were educated and about that from a hematologist doctors to on down, you saw a big improvement. I mean, then nobody was afraid of writing, especially in the medical community. Yeah, it'll good. Now we'll talk a little bit about some of the reactions of different individuals upon learning about this. And you but a little bit later, what what's your recollection of how Ryan reacted to this information at a time or, you know, I tell Ryan we didn't know we didn't know when to say anything. He I wanted him when they gave him only three to six months to live. I wanted to I didn't want him to know until I felt like he thought he was getting better because I didn't want to him to wait, wake up and have all these tubes all hanging out of him and think, Oh my gosh, this is it. So we're just kinda played it by air and it was the day after Christmas and Christmas Eve morning he had gotten all these tubes out of his legs, which they were bugged him to death. And so he was glad to get them out. And then the day after Christmas, it was on a morning my daughter was with me and the minister had come down. And I just thought that I didn't know for sure. I said Ryan, I said, You know, you've been really sick and he said yes. And I said, Well, they say you have aids. He said, let's just pretend I don't have it. And I said, Ryan, we can't really do that because we have to take precautions to keep you from getting sick. And my daughter, Andrea said Mom, that's not what he means. And Ryan's see, mom, she knows me better than you. He said, I just don't want every time somebody enters a room to talk like Paul Ryan, he's dying. He said, I just want to go ahead and go on with my life. Okay. So and then another thing he said, there's Laura. No. And I said lower, your nurse. He said Yes. Does lower know because I had read that people with A's could not get people to take care of him. And he wanted to know if Laura knew and she was still taking care of him. Well, it's really amazing that he was thinking rather house, always ask is I write, always think of other alloys. Yeah. But he as far as you could tell, he realized what his situation was relative to the diagnosis? Yes. Exactly. Because he had read he'd gotten Time magazine since he was ten years old and I don't know too many kids that reason. I say prototype. Yeah. Sure. Yeah. Okay. So what was his reaction to somebody your friends about when they learned this? Just hardly any of them was very positive From my best friends since the fourth grade. Me, her husband said, you know, I don't want that kids around AI and Andrea No more. We just we saw a lot of it. We saw a lot of it that people were just scared now my immediate family was fine. I think they were a little nervous about the disease itself and the kids being around Ryan and Ryan pass away or Sure. I think the grieving process of what what Ryan's going to have to go through wizard troubling to them. But no, I think in general my family was very supportive, but we soon found the people in the community where we're very distant, even at church. I mean, we notice that kinda at church right away because of Easter Sunday, nobody would shake Ryan's hand. I mean, it was you could just tell every time Ryan coughed or because he had a because of the numerous issues he had a strange little wispy coffin. People would turn around, look unlike, give you a disgusting look like, you know, like you shouldn't be here. And that was very noticeable. And when you notice that at church, then you start I'm interested in everywhere. Yeah. Yeah. I'm sure cuz she would think there'd be more supportive. And a little bit we're understanding that your church would always be on my side. I taught scientists go for 10 years to, to four-year-olds. And it was not like we were new members of the church. I went there my whole life. So it was it was, it was quite depressing to see that change through time or that state. Not really because then the fight to go to school became horse a problem. That church a lot, they had a lot of Western communities, school people that went there. And so it became, it can't became part of the battle itself. Right? So let's talk a little bit about how the school and community responded. Then we weave all who've read the story about Ryan is really deal with. There were a lot of battles, a lot of difficult. Circumstances that are unbelievable that you and Ryan, uh, you know, a family had to go through and yet there are some good stories too. And one of the communities, but how did people find out? I mean, you are trying to hide this. I mean, but how's the information I wonder got to people about what was what was occurring. Do you recall when people ask me all the time why did you go public? Well, we never went public but we really didn't know not to either. I didn't think to hide it. I didn't think I had anything to be ashamed of. But Ryan, when he was first diagnosed, he had missed two weeks to school and three teachers came down to visit him owing to, as I remember, came up to the to the to the floor and they asked me what was wrong with him and I said, Well, you know, they say he has aids, but I said I think they're going to find out it's something else because I just I just kinda understand how my son could be one of the first children and first hemophiliacs. And then I said all you have to do is put on these gown and gloves and you can go in and see him. And there was this big panic on their face. They said, Oh no, that's all right. I said no really, it's for his safety. Sure. You know. And they said, no, we'll leave the cards and letters out here. And I thought, Oh my gosh, these are teachers and they're afraid. So that's when you just start seeing that you start seeing all around the hospital and where you didn't see it before? Whores. So how did that make you? You felt maybe some isolation from all that. I mean, is it something that surprised you and a lot of ways and something that just never really got comfortable with or time you just learned. Habit bother you? I think people's reactions. You ha, you notice it easy but you don't focus on it. Sure. Because you realize they did, they just don't understand. Now, comments made that that's a little bit different. I mean, but looks and people backing away or not wanting to be with you in the elevator, you since that yeah, I bet you do. I'm sure that some of the comments were really hurtful. I just wonder how how what gave you the streaks and your family the strength to get through all of that? Wanting my son to get better. So you're wanting to give him the life the where he could have hope and and just be supportive of the things that he wanted in life. I mean, at first that mean when you think you're only going to live three to six months, it's like a boy, you're very, very protective in your course. Then he starts getting healthy. And then the highlight of his day is his sister getting home from school. And are we getting home from work? I mean, because he's thereby himself and he's watching, I Love Lucy and Andy Griffith on TV. You can. So it's the highlight of his day was when we got home and he started gaining weight and he's feeling great. He's thinking, why am I just set in here? And I just felt like he was waiting to die. And that's just really hard to accept because you're like waiting on three to six months you have been waiting for for for something to happen to you, but he lived over five years now. So I mean, I'm glad I did what I did, but because otherwise, I mean, that's a long time out of your last 5.5 years, a long time out of your life to just set at home and Way and I don't I don't think he would have lived as long because I think the fight to go to school, I think that gave him something to dry for sure. I may accomplish. And as long as he had that fight, you know, it's like he's going to accomplish something, he's going to get to go back to school. Now that really says a lot, doesn't it going to be that kind of determination, but something to really fight to live for. Two. Why do you think? I don't know if this is the right way to say it that people did liking, but maybe that is accurate, but I mean, why why do you think he was he received so much of of language against him and isolation and harassment. Just a simple is made with the fact that they were not knowledgeable or fearful or I think they were not knowledgeable on A's, but I think at the same time, they didn't want to deal with aids. They thought it was a punishment from God. A lot of people, especially the religious community, felt like because of religious or moral issues that surrounded the disease that you had to be gay, you had to be an IV drug user. You had done something bad or wrong, or you wouldn't get this disease and maybe even something bad or wrong at home, right? Yeah. Well, they thought that too. Yeah. There's some funny things going on in that household. That's why that boy got aid. She's just trying to make up excuses why he got aids in. I would try to explain to people you got it from his hemophilia, used the medicine used to treat his hemophilia. And they'd say, Well, why don't you hear of others what you didn't till 1985 as they started bringing you all hemophiliacs. So it was just like they thought I was just making things up, excuses. So I know there's probably no adequate words to explain how a mother would respond to a diagnosis like this. I mean, how was it for you? Yeah, it was a factory worker. I was a single mom and I want my kid to live. I want I wanted him to have hope. I wanted him to Just me everything that he could be and I just thought, you know, I don't know how I'm going to do it because I was it I was very naive person. I mean, I I, I was I was not well educated and I just felt like but I just found that because of the love of your children, you could do a lot of things that you never thought you could. And I thought, Ryan, I'm going to do whatever it takes, whatever you want to accomplish in life. I'm going to try to see that you could do it and you don't. A lot of people know that. There's a lot of people are really admire you for the course. I'm sure it wasn't easy though. Maybe only a person who is a mother could maybe completely they understand the power of, power of that. And of course, we know there were so many harsh reactions of people and all the way from just a word and looks to a shot. It'll bullet shot into your home. And what do you think that that happened? I think they wanted us to leave. I think they I think it was they felt like, you know, that if they could do make us do something, then they wouldn't have to deal with the situation. Just, you know, I remember the comments saying why does she just keep him at home and play games with him? I'm like My gosh, can you imagine a 13-year-old can keep him, help him playing games or apply to games and then they're tired of playing games. Sure. So I mean, it was just kind of the things that people would go through it too. I just cannot understand how any of these parents couldn't understand what I was going through and be thankful that they had they weren't going through what I was very disappointed. Yeah. I just couldn't understand why they couldn't be just thankful that it wasn't their kid that was diagnosed with loads? Yeah. Did you ever feel unsafe? After the bullet hole? Yes, but we weren't home. Now, my daughter and three, I think was the most fearful. My daughter Andrea was like, you know, she really was afraid that that there was going to be some crazy person out there that will actually try to harm our family. So that was a long time ago, and so now this is 20 years later and people know a lot more about HIV AIDS and I hope that they don't stigmatize people as much, but do sometimes thinks to continue. I do here I hear all the time that were like distributive. Now, why even directed to us at the state and time two people with aids. But luckily, if because we have the drugs and treatment now I think a lot of people choose not to be public about it, not in too, because I don't want to lose their jobs and their insurance and so forth. And they do relatively want to live a life like Ryan, a kind of a normal life as well as much as possible. But take meds. I think there's a lot of people that that that would enjoy, that they don't want to be criticized or because they have aids or people dissect them because they have a sure or like what do you do or how would you get it or so. People I think are self-respecting in that way. But it is Eddie. Things that you feel hurtful continued toward you, right? Well, yeah. I mean, they still have things still even after 20 years. After 20 years, you still have people that say that with what they knew at the time they felt like they were doing the right thing. And then you have people say it became so ugly they didn't want to have an opinion because it will create so much controversy. And then you have people that are in complete denial. And they say it's God's punishment. And that still though it may, even today, you will have people. And it's funny at the children's museum the other day a lady come in and she said, this whole story is a lie that none of this is true. Yeah. Hey, there's an exhibit to the exhibit at the Children's Museum. So she was teaching these three kids. That was with her, that the story was a lie and that, you know, and it's like two thousand and ten. Thousand and ten. Well, so let's talk a little bit ago, Andrew, how powerful this for her? How did she react to that impact her life? You think Andrey was two years younger than Ryan and she was like Ryan was her best friend, everything she did. She played with Ryan. I mean, she was kind of a tomboy and she like GI Joe, she liked everything that Ryan light because Ryan was had this huge imagination where he could. Really get into characters and all that. And she like do it. She like playing with Ryan. But I think I kept her in skating. She roller skated competition. She had done that way before Ryan got sick and she was quite good. She was a national champion roller skater and and I even though we couldn't afford it really, I tried to keep her in it as much as I could because it was Greg great outlet for her. And it was great time for me and her because we would go to skating meets me and her. And it was tel quality time spent with her and that was important to me to try to keep her involved in our lives to just privately and all by herself. You know, what? Ryan course begin to speak out. He became a celebrity. Well, how did that make you feel? You don't get caught up in it? At first. I mean, at first it was just like, You know, he had a story and I thought it would take one court hearing. I mean, I didn't think it would be long long going. I really didn't. But the media loved him land. And they've told me they see a person on camera and off camera. And Ryan was always the same and they weren't afraid to be around Ryan. And so Ryan liked being around them because they weren't afraid to be around. So they were covering both sides of the story, of course, and and really supporting Ryan, but they couldn't say that they were very good to Ryan. They got his message out there. They thought they saw how important it was that he educate people. And so they were always very impressed with Ryan. So, you know, there were several well-known celebrities that really got involved with Ryan. See like one of the ones that were smooshed close was Elton John. I mean, how did they emerge happen? Well, the first ever aids benefit in New York was happening and I am far had ask a frame would like to come and co-host this event with Elizabeth Taylor. And we thought, oh, what a great educational tool because Elizabeth Taylor doesn't want to get aids. I mean, sure, these celebrities, you could get it from coughing, kissing, tears, sweat, and saliva like everybody thought. I mean, these celebrities wouldn't want to be around him and all these celebrities showed up and he went on Good Morning America. And they, david hartman, a lot of people remember David. He asked Ryan, he said, Ryan, Who are you looking forward to meeting at this Aids benefit? Ryan said, Oh, meeting Elton John, definitely. And I was shocked because I thought it was a little differently. And all that with all those colored hair as you know, all that lashes and their hand. But Ryan said Mom, I like him because he's not afraid to be different. Because Ryan sound like everybody thought he was different because he had aids course. So I that, I didn't connect to that right at first, but, but Elton didn't come to the benefit. But he saw Ryan on TV and he said he called us in the lemma as we were hidden back to the airport after the event. And he said, I want to meet you, Ryan, I want to meet you and your family. So. Two months later we flew to LA. We stayed five days with him and he said, Why don't you guys stay five more days? So he threw a party for Ryan at Disney land in California with his band and their wives and everything and treated as to Universal Studios, we did the work, so we did that. We had the private tours and all that. So but that was only the beginning. I mean, that he didn't forget somebody that's continued to hold these years, Rogers. And he, we, we saw him in so many concerts to Haiti, had so many events and it was just it was like we were a part of his family. Yeah. I mean, I've read were Started crucially. Elton John foundation of the Ryan was the impetus for that to happen. He went into rehab after rhyme passed away. One of the things that was so amazing I think was when he was at the hospital, he just couldn't understand. You know, he said I all this money that I have all this money between Michael, how that goes. I like to tell that story. Go ahead. Michael Jackson called the hostname course. Elton was there the whole week that Michael called and he asked to speak to Ryan. And I said, Michael, he won't be able to hear you. He's in a coma. And Michael said No, he'll be able to hear me. He said I know he will. He said can you get a telephone line ran to his room. And I thought, well, if anybody can out and you should. I mean, he's just like I was the one getting things done. So I told Elton and we got a telephone line ran to Ryan's room and Michael Jackson called the hospital and Elton John picked up the phone, he started talking to Michael. You said Michael, I'll put the phone up to Ryan's ear and you can say what you want to. He said, okay. So I looked over it out. We put the phone up to Ryan's a year and I looked over Elton and he had these tears streaming down his face and I put my arm around him. And I said, What's the matter. And he said, You know, with all the money that's in this room, we can't bring this point back to life. So that was a real realization. Dial it down cocaine. He'd been alcoholic admin, blame me. He had been just he had all the money he could ever spam, but he didn't have his health as well. So he entered rehab after Ryan and he contributes his life the unsaved because I've ran away. Well, I mean, you want to store yeah, thanks for sharing that. I don't think that probably people know that match a very, very special story. So it's been 20 years. And so now as you look back and we doesn't seem possible, spent 20 years to go quickly. I can't believe that we're still facing this aids epidemic really. I mean, I think when I saw the drugs come about, I thought, Oh my gosh, we're onto something and I mean, I've wished Ryan could have been here to see those drugs, but I mean, just about three years after he passes away, then there's all this hope for people living with aids. And so I think that I thought there'd be a cure me. I thought, you know, they come on to that so fast that same ligand was helping people. I thought, oh my goodness, 10 years or so we'll have a cure for this disease through. So it's, it's kind of amazing to me that we don't have washed your data. It's very difficult situation medically to deal with. Yeah. What do you think was Ryan's main messages? Gosh, people just to treat people with aids respectfully. And like a person for who they are. I love what he said. Like I'm Phil Donahue. He said, I'm surprised we even have dogs nowadays because they're different. And I'm like, Oh my gosh, Ryan, I can help here. Where are you going? He goes with some people, said, I can't believe you allow a dog into your house, but you won't allow someone because of their race, their color, religion, or what they have in them. Meaning aids in here, man, I was like, Oh my gosh. I'd never heard him say that before. And it was just like fell down and he was like, that is the most serious person I've ever met in my life. He said, and I've met an awful lot of people. And I'm just blowing because he's my son and I'm so proud to be a mammal. And it's just that I was always proud of him, but I don't think I ever really understood that how everybody was so impressed with you. I think it'll Phil Donahue comment was shared by hundreds of thousands of people because they could see how genuine he was, how sincere he was in his style and his approach. I think what really made him a national, national hero. And I thought it was just mom saw, but there were other times in which he really surprised you? Oh, there was there was a lot of times, I mean, sure. He just seem to answer everything. And he didn't. It's strange because people will ask you the same question over and over again. And he tried to find some other way to Amazon's DNS so they wouldn't be embarrassed or, you know, it'd be like I just answered that bed. But he would try to answer it differently so they wouldn't feel bad. So how would you like for people to remember who I am? You now that he put a face to a disease and he help educate people, and he did it with a smile. I don't think that, you know, there's so much else. I mean, I think people could relate to him for the first time, especially within this disease. People started caring about people with aids. And because, and they realized this could be anybody. And I think that just to have made that komplett accomplishment jet just for people to look at a disease and say, Gosh, I feel compassion for this disease. Now, you know, many young people could do that, right? Obviously was very special. And he had a lot of special traits that came from his family, came from you and certainly that's a tribute to you. Would you like for people to remember you, you know, just as Ryan's mom would be fine. I don't need a name. You do what you have to do. And sometimes it's not that easy road. And I just I just feel like, you know, I've always wanted to be the best mom I could be in. I feel like I've tried to be that best. Mom, you know, me, I've had failures to I mean, I've done things that maybe I should have done differently. In this case. You know, our road has been so rocky, so up and down. And I try not to dwell on the bn down. I try to, even on this day after 20 years, I just I try it. People say, oh, how can you do this? How you do, how do you not get so upset? And I try to remember just the good times. I try to remember his smile. I try to remember his message and and it does skip. It does get rough. You have you have highs and lows. I mean, you know that most of all, I am just so proud of my sad and why he's accomplished and to leave a mark on this world as genuinely as he did. And to accomplish the rights for others, for people living with aids. I just I could not be more proud. Certainly understood. Well, and I think you characterized it just perfectly because that's what he did. And he certainly had a presence and you've been able to carry out that precedence. So I need to thank Senator Kennedy and Hatch for that because I really didn't think I had it in me. Hi. I didn't think I was smart enough. I didn't think I really felt like I would hurt their cause more than help it. And Senator Kennedy and Hatch both were like so convinced because the Ryan White Care Act, they had hearings on him. And they said, We really need your voice. And Senator Hatch, suggest be a mom. Because I think I I didn't want to appear dumb or anything there. And being a mom, I could do. If you give me a mom and tell the senators what it was like to watch your son live and die from aids. And that I could do. I mean, who I lived it. I know I knew what I went through. You know, the love my son is just in my heart forever. And everybody told me they get easier, but it does it. You learn to live with it and you learn to live with it because you have to not because you want to. Yeah, Exactly. Well, certainly we're proud of him. Many people are certainly around the world are proud. I'm proud of you to Jeanie preside know it's been a difficult situation, but you're a model for all of us. And the courage and strength that you have and the debate you've dealt with this and I'm sure it has a bit easy. But also we know that, you know, you're shining beacon for what Ryan stood for. And so thanks for sharing your thoughts today. It's great to get to know you better and to have you part of the rule set for aids STD prevention. Thank you, Julie. Thank you.
Interview with Jill S. Waibel
Description of the video:My name is Bill Yarborough. I'm the Senior Director for the Center for aids STD prevention at Indiana University. And today I'm talking with Jill label, MD, who's recipient of the Ryan White Distinguished Leadership Award. Congratulations. And this event is actually the 20th anniversary of the death of Ryan White. This is a remember it's celebration of his life. And part of that event is that we awarded the Ryan White Distinguished Leadership Award to jail. And I'm using this opportunity to talk with her. And certainly the major impetus that we awarded this honor to her was the fact that she founded the Indiana University Dance Marathon, which is actually I guess the second largest Dance Marathon in the United States and has raised over a million dollars for the Ryan White Infectious Disease Center and also at the Indianapolis to Medical Center at Indiana University. But also we recognized her because the fact that she was very instrumental and Ryan White becoming accepted and feeling safe at Hamilton Heights High School in Cicero, Indiana. And so I ask you some questions about all that and how that started and how you got involved and so forth. The gel how did you learn that he was moving to Cicero? Well, you know, we are all very aware of what has happened to Ryan and COCOMO has how I personally liners. I had a phone call from the superintendent. I was incoming student body president, and I thought that was strange. Tenant would call you in for a meeting because I was thinking I would be afraid of homecoming and sure. And I went into school about a month. That was the summer before my senior year and before Ryan and moved in. Tony Cook, our principal and superintendent, table, and he said, Ryan White is living into our school. And that was the first I'd heard of it. And then not too long after that, D and E and B and Ryan moved in our neighborhoods and so well, yeah. Yeah. And so then at what point that just sort of actually get involved with Ryan and after he moved in and wash, I was first well, an initial my mom and dad said we're taking the new neighbors some cookies or no. I mean, that's how I was. Oh, wow. Yeah. Sure. We went over and knocked on the door and we were welcomed into their home. And I think we had a special connection with. I mean, right away, maybe you're a London and became evidence. Again. As I reflect back 20 years later. Now, at the time you don't realize what's going on, but everyone was afraid of aids. But of course, we had a couple of years on COCOMO. Shot had happened two years. Educationally blinking a lot more cases are being recognized. How the science and move forward might admit, but Indiana kind of took it upon ourselves to be a leader in the industry. And the former Governor owes bond was at Health and Human Services in Washington DC, was working closely with what he Myers, the State Medical Association president who was working closely with our school. So it was very well. But now we are going to educate the children and having children tell their parents should educate them for you. We'll rely on parasitic core children. And in this instance, the thought was, let's see if we can stabilize the youth first, which was really quite amazing and didn't work and work that well for when? Yeah. I think we had about two weeks where we had nothing that aids education and our school speakers and you know, the kind of things that you're here. And then when Ryan came to school, there was, I think one that came. And the child looks at the data. A. Wow, I don't know, not everyone's excited to have Ryan. Wow, Yeah, I remember from our players are carried books and so it's very, very different experience, of course, different time and a little bit, the time had gone up. Everything with brands. And the education certainly was very powerful. Yeah, good. So but of course you became friends and you spent time with him and took him to school in the car. So I mean, I guess those neighbors that move in and sometimes people get involved and sometimes they don't. Why did you get involved with this situation with Ryan and, you know what what occurred there? He thinks that open that up to you. To this day. I think Ryan's so unless inspirational human beings I've ever met and and you know, his, his mother as well. They it to be around them. You're very, you're drawn to them. They're good human beings and they have good values. That I just think riot. It was just a natural friendship on some level. I mean, writing, charming, and he was eloquent and I was very impressed that here's this young teenager who just carried this incredible burden between the hemophilia and aids associated with aids. Nine. And he just made it look effortless. I mean, he knew that he had to wake up every morning and help the other people in the world and moths. And he recognized the ignorance for what it was that he didn't have a mean bone in his body and I think and he never complained. I don't think I ever heard really complain. No, I had this really amazing sense of humor. And we do remember any rec recall a single CEO Mercer, the stuff top your head or not. While I share the funny I mean, I have many funny story I think. My favorite was there was always press at our high school to kind of share me was first high school in the country to have someone with high school. So Ryan and I would try to sneak in the school without the press C. So sometimes we drive to school for three blocks away, go right out of school because I don't know if I should tell the car. Okay. Okay. Sure. He was just I mean, you spent more time? Yes. Ryan on elasticities, Mexican food. That was his favorite restaurant. Wow. Yeah. So when you became friends, were saying that friendship grew, I guess by what you just said, your family was okay with it. Is that true? Yeah. I mean, I think my I mean, ryan definitely had a core group of friends. I think Ryan and I we were friends. Yes, definitely. We had a year the neighbor relations, but he and I are also in many I'm going to call professional situation. Sure. He was nice enough to ask me to go to several of you yeah. Sure. Traveling events. I would say testify in front of Congress. And so we often in serious discussions too long. Yeah, sure. We talked a lot about why he was doing this and the answer was always that you wanted to help other people. Sure. We had a lot of talks about life and death. We had a lot of talks of his family and his mother. And so there was a very serious also thought-provoking cyan if Ryan and I think he and I shared a lot of that because we were doing these things nationally together and so we had that kind of a connection. And you were two years old. I noticed I have a one-year-old HDL, but not the same class, your software and use freshmen or shame or when you saw him? I was a junior but I think Ryan that one year. Yeah. There was a cup with its thickness. So we've actually where we were probably officially body my birthday, not able to immerse. I think he's officially probably two years older, but with the way the birthdays fall, and I was a junior and he was coming. He had a lot in common relative to maybe way that personality. Maybe you looked at the world and they know somebody or life principles and that probably just really help you connect in a natural way. Yeah, Yeah. And he, he was such a leader and very charismatic, you know, when people say someone charismatic and he was, he was anyone on, walked into the room or you were just drawn and he was a very quiet just power, just naming there and people were very drawn to him. He must have been really appreciative, of course, your friendship. Did the jewelers any friends or have any negative things from this? Now, some effects I've always felt guilty. It was an amazing experience for me to go through. It really changed my life. He was an inspiration for how to be a good human being. And it was a terrible thing was going on with him and his family. And I always just I've always felt so blessed that I got to the part into new teeny and Ryan, it's there. It was an amazing time to see a disease, especially now that I'm a physician to see a disease unfold like that, you just did our first time like here, that kind of situation now his friend? Yes. Yes. And to live through that disease and then as a doctrine out and know that we've made it a chronic illness we have seen, but may come so far measure. Just unfortunately, we couldn't give that, Ryan. Oh, wow. Yeah, that's true. I'm sure you have so many memories. I mean, maybe it's hard even to select just one or two, but any sort of special situations, circumstances that that you'd like to share? One of my favorite I think one of our busiest days was the day we went to testify to the congressional aids Commission. Ryan was talking about his experience and then I was talking about how the school how we dealt with it for our school. And Bryan hated public speeches. He was such a mess in a good way, like No, he didn't want to go to bed that morning. I won't GV and I to come into their hotel room. And and so he was like, I'm not going off. And we just laugh because, but then when he would get to these speeches, he would just nail them. He was beautiful. Probably our worst experiences were on Nightline together. It's very, very intimidating and Ted couple was very nice. I put you in a dark room, a black room because they don't want one guess if somebody's like in California, in somebody's in studio. So they put you in a black room, it's about 90 degrees hot. He put a headphone on you and they shine a light on you. I was in a room, I wasn't rude and pages were singing singers towards Ryan and I. I mean, I remember, but it was also an amazing experience. But now that's half bow and they don't happen like in the same 24, 48 hours. I right. Yeah. So I mean, any of these times, did he rehearse what he was going to say? Are you guys talked about maybe potent points are well, he did spend time writing his speech, but most of the time he knew he spoke from the heart, knew what he wanted to get across. He didn't enjoy doing the interview. Yeah, But he was very passionate to help other people and to help other people with aids shouldn't prevent the suffering and to educate people. Now he had been the victim of so much, of course, many horrible things that the, at the hand of ignorance and not understanding. Even though this was an era community that was much more open and accepting, did you witness some really tough situations on like, harassment or anything? She didn't have it. I mean, I know it was it was a very different theories. And again, I think we had some time to deal with that issue. Yeah. Been done by the readers have no I really don't recall very any electromagnetic interference in our in our reality. There were still some things going on in the world. Exactly. Yeah. I think in a bad way to Ryan just hit was doing so much for the eighth world. Yeah, sure. People knew of him and I guess realized, finally, watch about anything. When people saw Ryan, it really did change how they felt about aids. And that's understanding personality air, and we understand that now, sure, we're afraid of this horrible disease. It is a horrible disease course. And so that explains a lot of land and waterways and there they didn't know how to react and that's one way they would respond to their life course. Yeah, exactly. Yeah. It was one of the first diseases we had seen in the United States in the current times with lethal the ocean very quickly elsewhere and it was contagious and yes, I can yeah, Well, disease. Sure. We didn't completely understand how their first but then yeah. So tell me a little bit about the IU Dance Marathon. How did Did you get that going? I mean, how did that I didn't even a merger or what did you even feel like you needed to do something? Well, it was really I had just driven home from Ryan's people and as you know, he died on April 8th and his funeral was a couple weeks later and it was almost finals here in Indiana. And I drove home and I got I was so upset, I actually got lost on the way home. I had to call my brother directions. I was just see uh-huh. And I drove here to the Indian or moral union and I went up to, I was an, a student government at the time, the Student Alumni Association and Jeff Jones was the Assistant Executive Director and I went to see him and he just sat down to talk to him in and he was like, wow, you know, it's really sad. Are you doing? We're talking and he was in the middle of watching some TV clips and I'm like, well, what am I interrupting? Said? Well, I'm a judge for these philanthropy events across the country in, and one of the ones that he was looking at was the Penn State has similar dance man. And just within two minutes, he, I mean, he's like We should do one of these and I'm like We should do a VR IN and he was like, I think a bit of Israeli hospital for children. So I mean, it was the day of Ryan's funeral, games together. And then really was supportive Indiana University using and 12 amazing student leaders and they came together. And now over the last 20 years it's been 10 thousand liters. And I'm very proud because one of the things that we set out to do is said that we didn't want a cookie cutter organization for students where you just get a notebook in Sharp, go have a luncheon and it's the same luncheon with the same menu every year course. The whole concept that this was, let's have students who run this thing. And they really do. And now they're raising over million dollars a year and doing it for the hospital and for children. And it's for a good cause. It really touches her heart and it's part of the Indiana The Medical Center in the course. I mean, it's I think in the end it should be very proud. Yeah, well, you should be proud of slavery in the country. The largest student in the country. Yeah, well then it's really a tribute to her idea. That's a tribute to all their work to RBI mean it's, it's a real plus for the university and I'm sure To Medical Center, it's a great thing for them. And then the OH, it's a part of a, of a way that people can really demonstrate their affection for. I hope that research continues. And in the logo for the answer on Ryan White's name is yeah, all the way he writes The obscene SHE look for it. Isn't the logo. I'll have to dig through dancers that are kind of modern-day as Ryan way while his one, yeah, You mentioned incredible store the day of his funeral. This the day the idea emerged. Well how so then what after the idea, what was snacks? Well, if it was a startup company, 11 thousand the first year, I think you're going to have to actually do it. Yeah, of course, role and it didn't happen. And so there's a whole year went by and then the next. So then we identified what we do with our time. Leaders, I can't tell if I'm with various organizations. We had the presidents from us, the other organizations and they came together. We had the dormitories, then we have the, the Greek houses and we had Independence and we had the politicians and everyone worked hours. I mean, our badly, we're all full-time students and I that we put another 30 or 40 hours on top of that week all summer long, which is off really pleased to have executive meetings for like six hours on Monday. And they still do. And how they push more time than WE DO now. Yeah. So then the first time it occurred to us when you are senior, 91. Mm. So you've got, as a student, you are a real experience. He mowed what? Onetime Yamanaka and it's probably been back several times. Yeah. I think I've missed four or five this because yeah. Of course. Children, right? Yeah. Right. But it's vessel Sarah, this, right? Yeah. Right. It and many students always remember if they're involved when they talk about their experience at IU. Medium, talk about that. And really the event is not yes, variance is sure the experience comes from behind the scenes when the students go to Riley grand tour and they see this sexual and it's yours. They may do is take all the committee members down O'Reilly. This is why we should if they meet the family, maybe kids they see with hospitals all about. There's a lot of inspiration to me and of course, there's a lot of, you know, there's a lot of meetings, there's a lot of planning, but it's the skills that you acquire when you're part of that. So the Prozac, like any event, no matter what the event is. Exactly. And I think that that is a win for everyone because this does have a lot of this goes as Darwin, but they get to refine them. And I think it's probably the perfect example of the, the value of extra curricular activities beyond the classroom. On a college campus. It goes a phase when they're successful on this and had a leadership role. I think any future employer would be really impressed with that because they can illustrate these skills, enable to pull it off and be able to do so. He knows a lot of people very, very thankful for what she did because she hadn't had driven driven down here that day. I mean, who knows? Sometimes the circumstance, but it takes someone with vision and passion like you, I guess, good thing. Because it was the amazing people that came together. Any administration was to share the genie was around 40, the doctor climate and Riley, I mean, it was a group of people. Group of people, but they're all need, always need a catalyst. So this, look back again a little bit about Ryan. Probably have thought of this and the sum, but maybe you have a chance here to articulate it. How the dry and change your life for her, diddy. Yeah, Ryan had great impact on me. I you know, I always go back and say when you're 17 or 18 years old, you're very self-centered. Here world revolves around very superficial nations. And I always say my, my biggest decision that day was what genes do I where the joint density. Luigi, sure. And so having someone come in, meeting someone dying from a horrible disease and decided to spend that time in his life. He was very aware that he was very at peace with that. He wanted to live, but he had a great acceptance that he may not. And therefore, he was going to spend his life to help other people. I don't think most kinds could do what he particularly maybe as a teenager, you and me don't lie to me as a human being and I I still try on days when I wake up or you want to complain about me? I still try to think about right away and putting up. Okay. I think that life's bigger than the addition that you should wake up every morning and be grateful to be alive course and try to do good things for other people. So I think he had a profound impact. And in many other people in publishing someone like that whole course. And then of course, I took Ryan, I went with some of his doctor's appointment and meeting Dr. crime and really inspired me to be a physician. Wow, now suspect cross this impact us bloodflow. And a lot of different ways to select you, say add new data to remind oneself one another now and to know Jeannie too, I feel how she was a mother, probably quite a role model for others. Sure. And again, to have for it, I have to go through what she has to go to. What do you think was Ryan's most important message? I think is most important messages treat each other with kindness. That we're all human beings and there's no room for prejudice, no any level. Sure. It doesn't matter what we're talking about. How would you like for people to remember horizon? Well, I think to remember him for hope and his strength for Halley, how one child's change that May 7th, entire disease. Yeah, the right one. So carry that message on the person who did what was right for any people. So now it's been 20 years ago since his death, that may seem possible. It went this way. So here I'm sure. But what does that mean to you that that 20 years. What are your feelings associated about that? I mean, I guess you just expressed it, but yeah, everything to add to that or I like it that I feel sad that we lost Ryan and many other aids patients. I mean, it's a huge victory now that we can keep aids patients alive. Sure, it's a horrible disease. They still suffer. The chronic disease. Yeah. Well, you have a diagnosis of aids, HIV. It's not a death sentence. I think that Ryan would be happy for her. And I wouldn't have thought snide. A lot of people talk the other way that we have a cure when our vaccine, yeah, there's not many diseases that you can come this far that quickly. Okay. I mean, look at MS or cancer. We sure. We the battling a lot of diseases for a 100 years. And in 20 years we can keep people alive. Yeah, Finished great achievement. It really is the, the scientists, the CDC that research really the antiretroviral drugs and there's new ones coming out every day. Washington quite an accomplishment. I'm sure he would have been pleased effective medicine was able to do some of this stuff. And I didn't help that the world continues to listen to your message, not discriminate. And to educate as we learned today, of course, say, for the ways we know how to prevent, think it's a really great point. I think many people maybe can continue his message and in their own different way. The principles and the ideas of a head that the value of awareness, value of knowledge, but also the value in humane aspect of being compassionate with individuals. Well, thank you for sharing your ideas and thank you for what you did for starting a dance marathon. I mean, certainly that is one of the most significant things on campus. It's really helping the hospital, but also helping continue the legacy of Ryan and certainly a worthy cause. And gosh, this thanks for bringing his friend and being there at that moment. And I think a lot of people appreciate that too. So thanks to you. Well, thank recognizing Ryan. I think it's wonderful.