World Marks Nearly 30 Years Of AIDS

Nearly 30 years after the emergence of AIDS, the stigma attached to the disease is still a major obstacle to curbing the pandemic. On World Aids Day, host Michel Martin speaks about the stigma of HIV/AIDS with Reggie Smith who is himself HIV-positive and a holistic health practitioner. Also in on the discussion is Dr. Sohail Rana, a Professor of Pediatrics and Child Health at Howard University who treats HIV-positive children and adults.

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MICHEL MARTIN, host:

I'm Michel Martin and this is TELL ME MORE from NPR News.

It might be the most hyped game of the year in the National Basketball Association. LeBron James has returned to Cleveland to play against the team he once led, then left behind. We'll get some insight with what to expect with the help of hoops great Kevin McHale in just a few minutes.

But, first, on this World AIDS Day, the United Nations has decided to focus this year on universal access and human rights. So we decided to spend some time talking about the discrimination, even the violence, that some HIV and AIDS patients still confront once their condition becomes known. Many people say the stigma is more hurtful than the virus itself.

To talk about it, we've called upon Reggie Smith. He's an HIV positive author, a certified holistic health practitioner and an advocate for living well with HIV. He's also a husband and a father. Also with us, Dr. Sohail Rana, professor of pediatrics and child health at Howard University and he's been taking care of children and adults with HIV/AIDS for some 25 years, and I thank you both so much for joining us.

Dr. SOHAIL RANA (Pediatrics and Child Health, Howard University): Thank you for having us.

Mr. REGGIE SMITH (Author, Holistic Practitioner): Thank you for having us.

MARTIN: So, Reggie Smith, I wanted to ask, HIV has been around, at least it's been known about for some 30 years. I'd like to ask you, what has changed over the course of time that you've been living with the disease?

Mr. SMITH: I've been diagnosed since 1988 when there were no medications. So the most important thing that's happened is that we have more options. Attitudinally, people have - are not as afraid of catching the virus. That's a double-edged sword, because we've lived and survived and thrived for as long as we have, people have begun to minimize the importance of staying HIV negative. And that's an unfortunate thing.

MARTIN: How did you find out that you were HIV positive?

Mr. SMITH: When my wife and I got pregnant with our now 22-year-old, and I think you missed my important title, which is as a grandfather.

MARTIN: Oh, yes, exactly. Congratulations.

(Soundbite of laughter)

Mr. SMITH: Thank you.

MARTIN: And so you were telling me what happened. Your wife was pregnant and you got - why did you get tested? That wasn't routine back when you were first diagnosed.

Mr. SMITH: Well, it was - you know, I was in a high risk group. They were telling us back then, but we didn't pay much attention to the fact that sexual activity was putting us at risk. Besides that, I was an IV drug user. I had been clean for a few years and we probably should've gotten tested sooner, but didn't make any sense until we got pregnant. My test came back positive and my wife's came back negative, thank god.

MARTIN: And did you tell anybody?

Mr. SMITH: No, we did not tell anyone for the first 14 or 15 years because people were acting crazy, Michel. There were a lot of things being said as a result of fear. And rather than have to deal with that energy, I felt it would be more well placed to use that energy for healing.

MARTIN: I see.

Dr. Rana, what about you? What has changed in the years that you've been caring for patients with the disease? And I think a lot of people are particularly interested in how children are treated. Because you remember, some of the most poignant stories that emerged when HIV was first known were how children were being treated. They were being shunned and isolated. There is even a piece of legislation around this, named for a young boy named Ryan White who inspired a lot of people. But what have you observed that's been different over the years?

Dr. RANA: Well, I started taking care of children with HIV almost 25 and a half years ago. We recently surveyed Washington community, and close to 30 percent of them said that they would feel uncomfortable sitting next to a person in the bus who has HIV. And 20 percent said they would feel uncomfortable sending their child to a school where they know there is a single student with HIV.

And, having taken care of more than hundred children with HIV and maybe knowing 500-plus women and their spouses with HIV, I don't think things have changed much, just because we have not paid attention to it. I think they may have, in some way, become worse. Most individuals with HIV have to think a hundred times before they tell somebody that they have HIV. And in many cases they're absolutely right not to tell other people.

Because, you know, here, people who are most open about HIV, they say, oh, you know, I have HIV and they say, oh, but you don't look like you have HIV. Now, what does HIV look like? Do you see, there is a problem already. Any one of us can have HIV. No religion, no color of skin, no age, no gender, no sexual preference, no habit protects you against HIV.

MARTIN: If you're just joining us, this is TELL ME MORE from NPR News.

We're observing World AIDS Day. We decided to focus on the ongoing challenge of living with HIV/AIDS, particularly the stigma. Our guests are Reggie Smith. He's an HIV positive author and an advocate for living well with HIV/AIDS. And he's a husband and a father and a grandfather. He just told us.

And also with us, Dr. Sohail Rana of Howard University. He's been caring for people with HIV/AIDS for some 25 years. So, Reggie, when you finally decided to disclose, you said, you told us a minute ago, that you didn't tell anybody for 15 years. When you finally did talk to people, of course, outside of your wife, right? What did you say and what was their reaction?

Mr. SMITH: Well, there were people, you know, especially doctors and professionals that just didn't know everyone was afraid. And I had a metal splinter in my hand, I'm an electrician by trade, and so working on the job, got a splinter in my hand, went to the doctor and it looked like it was going to be infected. And I finally had gotten the courage to share with the doctor, because ordinarily, I wouldn't have said anything.

And the doctor, you know, suddenly he started putting on plastic gloves, which he should've been protecting himself anyway, and almost didn't want to serve me. He basically told me that I should have said something from the beginning. And so it did cause a lot of pain and trauma, just dealing with folks. And if people would change their attitudes, I was surreptitiously observing the way that people were behaving around HIV. So, that in and of itself helped me to remain silent in an effort to protect my family, my wife, from having to deal with all of that.

MARTIN: So, in a way you were modifying your behavior in response to something, in anticipation of it, for a very long time.

Mr. SMITH: Absolutely. And we had been living in a sort of denial. We were still dealing with some attitudes even in our relationship that needed to be dealt with, questions that people were beginning to ask my wife were causing a lot of strife in our marriage. And it actually stressed our marriage to the point of almost dissolution. And that, in and of itself, caused me to get sick. I was six foot four, I was down to 116 pounds. The doctors gave my family three days for me to live. And their continued love and our continued prayers and the lifestyle changes that I had made, have me here better than new.

MARTIN: Well, congratulations. That's great.

Dr. Rana, what do you think would make a difference? I know you've been at this for a long time, and I think if you had the magic wand you would've waved it long since by now, but

Dr. RANA: Well, I personally think that we really need to understand this phenomenon of stigma. I had one kid, 18 years old, she has a school right next her. She changes three buses to go to a school just because somebody whispered about her diagnosis in that school. It hurts me greatly when a patient, 16-year-old, comes to visit Dr. Rana. My sister won't hug me still because she thinks she'll catch...

And no matter how much you educate, it's not all that easy to reach all the people. I think unless as a society we work towards de-stigmatizing all illnesses. And the only way is by spreading knowledge. That is going to cost money. And, you know, you look at vaccine, several billion dollars. You know, they are pouring money into vaccines, which is wonderful, but you got to have people who would be willing to accept the vaccines, who are willing to be tested and then followed.

Close to 30 percent of individuals living in Washington D.C. would refuse to get tested because they don't want to find out.

MARTIN: Wow. Well, finally - and thank you both for these very important insights. I wanted to ask each of you if we are fortunate enough to meet 25 years from now, okay, 'cause each of you have been working on this for 25 years to this point, what kind of conversation do you think that will have?

Dr. RANA: We are going to establish a global network of experts to share expertise in studying stigma, as well as we hope to establish a center for study of stigma and we plan to make enough noise so that there will be money for interventions to de-stigmatize this illness.

MARTIN: That's interesting. OK, Reggie Smith, what about you?

Mr. SMITH: People will have evolved around the idea that HIV is not a moral issue, it's a biological issue. And we'll be talking about how the human race has perpetuated in spite of the disease. HIV is a very super intelligent virus that we are at war with. And it's really going to take some of the out-of-the-box thinking and the approaches regarding wellness - spiritual enlightenment, meditation and things of that nature. We will have raised our vibration in 25 years to a point where I believe that we will be stemming the tide, if not, have overcome the HIV virus.

MARTIN: OK, well, let's make a date. We'll meet again, 25 years, we'll test our theory.

Mr. SMITH: Sounds good.

MARTIN: Reggie Smith is an HIV positive author, certified holistic health practitioner. He's an advocate for living well with HIV and he was kind enough to join us from Georgia Public Broadcasting in Atlanta, Georgia.

Dr. Sohail Rana is a professor of pediatrics and child health at Howard University. He's been taking care of children and families with HIV/AIDS for some 25 years. And he was kind enough to join us from our studios here in Washington, D.C.

Gentlemen, I thank you both so much for talking with us.

Dr. RANA: Thank you so much, Michel, for having us here.

Mr. SMITH: Thank you very much.

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