The Rise of AIDS Infections in Women

Show: FRESH AIR
Date: MAY 08, 1997
Time: 12:00
Tran: 050801np.217
Type: FEATURE
Head: Robyn Gorna
Sect: News; Domestic
Time: 12:00

TERRY GROSS, HOST: This is FRESH AIR. I'm Terry Gross.

The number of deaths from AIDS in the U.S. declined this year for the first time since the start of the epidemic. But while deaths among men decreased by 15 percent, deaths among women actually increased by three percent.

Yesterday was the final day of the Third National Conference on Women and HIV, sponsored by the Los Angeles County Department of Health, in collaboration with the Centers for Disease Control.

My guest, Robyn Gorna, was at the conference. Gorna is the author of a book on women and AIDS and she's editor in chief of a new magazine for women with AIDS. She works for England's national AIDS organization and is on the planning committee for next year's World AIDS Conference.

I spoke with her yesterday at the conclusion of the Conference on Women and HIV. Because safer sex is a life and death issue, we spoke explicitly about sexual practices that carry high risk, so be advised that this conversation is geared to adults and you may find it inappropriate for children.

I asked Robyn Gorna, first, why she thinks the death rate for women with AIDS is climbing.

ROBYN GORNA, AUTHOR AND EDITOR, WOMEN AND AIDS: I think the number of women is rising because women are acutely vulnerable to this virus, Basically because the genital mucosa of women is easily traumatized during sex, and often because women don't have access to a mechanism that can prevent HIV from being transmitted.

The only way we have at the moment to stop HIV from being transmitted is male condoms. Women don't wear these. We can do our best to persuade men to wear them, but ultimately there's nothing a woman can do on her own.

Now if she wants to stop getting pregnant, she can take a pill; she can use a diaphragm; she can have an IUD put in. She doesn't have to rely on a man taking responsibility. With HIV, nothing she can do apart from rely on him.

And the second part of that is that of course, tragically, many women are abused, are raped, or are simply in relationships where the power dynamics are such that it's easier to allow him to have sex with you when you don't particularly want to because he pays the rent. Or for whatever reason.

And that means that a woman hasn't got the same level of power to negotiate the sex she wants and to negotiate the sex which is safe for her. I think that's one of the principal reasons why women are so vulnerable to HIV in the U.S. and, indeed, throughout the world.

GROSS: But you know, earlier in the AIDS epidemic, it seemed to be -- it seemed that women were less likely than gay men, for instance, to contract AIDS through sex. Do you -- do we know if the rising proportion of women getting HIV are getting it through IV drug use, you know, through infected needles or through sex?

GORNA: What's happening at the moment in the U.S. is that the numbers of women getting infected through sex is increasing dramatically. Now, clearly you do have a large number of women in the U.S. who've been infected via blood through sharing needles to inject drugs.

But the overwhelming majority of new cases are happening to do with basically getting semen into their bodies. And that's always been the principal route of transmission throughout the world.

And why women weren't getting infected early on was frankly because the majority of people who had HIV in the U.S. early on in the epidemic only had sex with other men. So, it was an artifact of epidemiology. It was a social constraint.

But as we've seen the epidemic grow and as it started to move into new population groups -- population groups where the men are having sex with women who, in turn, are having sex with men who in turn are having sex with more women -- clearly, obviously, more and more women are becoming infected.

The other thing we know about men is that on average they have more sexual partners than women. So, when one man is infected, his ability to infect a large number of women is much greater. And that man may have become infected himself through sex with another man. He may have become infected through drug use. He may have become infected through sex with a woman.

But really, the reason for the sudden growth in cases amongst women is about how viruses and infectious diseases work, which is that they start in a core group and then they move out beyond that core group.

GROSS: Are women having the same level of success with the new AIDS drugs -- the protease inhibitors, the combination therapy? The same level of success that men are having?

GORNA: There's some complicating factors with the combination therapies for women. There don't appear to be any overwhelming biological factors why women can't benefit from the protease inhibitors or the combination therapies.

There's a slight concern that if women have had a history of drug use and their livers are damaged, they may not do as well as people whose livers aren't damaged. And that would just simply speak to the fact that many of the women in the U.S. have, perhaps, got a history of drug use.

But apart from that, and the second component, which is that women tend to have a lower body mass and therefore they might need to have the dose of their treatments altered to take account for that.

Basically, the biological factors -- and we heard that at this conference -- are such that the drugs work as well in women as in men. But there are multiple social factors that really impact upon women's ability to benefit from combination therapies.

We heard at the conference this week that women are being prescribed the combination therapies; being prescribed protease inhibitors. The trouble is: are they able to adhere to them? However exciting the medical data is on combination therapies, these are not good drugs.

They're not good drugs because they're difficult to take. You have to adjust your lifestyle dramatically. You have to eat at specified times with some of them; you have to drink a large amount of water every day. You have to remember, frankly, to take something like 20 or 30 drugs a day if you're in quite a late stage of disease, or at least 10, 15.

And we heard from one doctor this week saying that one of her patients had asked her to write out the prescriptions for her drugs for her again. And the doctor herself had to look up the dosing, exactly when the drugs should be taken, and used up half of her prescription pad writing out the prescriptions for this women.

And she thought to herself: how on Earth can this woman integrate this into her life when she also has a job; she also has children; she has to get on with living, as well as taking the drugs.

So, I think that there are many features of these therapies that can be complicated when a woman's life is full of other concerns and constraints as well as her health. And we've always known from the women's health movement that women will often prioritize needs of others first.

And so simply, she may not have the time to really focus in on, well, I have a virus in my body that isn't making me sick at the moment. I'm taking these drugs that might have some side effects which I find unpleasant, but it's really for my good in the long-run. It's quite a complicated thing to get your head around when you've got to do that for the rest of your life.

The other psycho-social factors which are clearly impacting on this are simply poverty. And if women are still drug users or if they're in a very poor situation where they've got so many competing priorities in their lives, then using the drugs may not be the first need.

And finally, simply the access to treatment in this country is very difficult for women in a poor socio-economic situation. They may not be able to get the best possible health care provider. They may not be able to have prescribed to them the more expensive treatments.

GROSS: If you're just joining us, my guest is Robyn Gorna, and she is now chair of the community planning committee for next year's World AIDS Conference and she directs health promotion for England's national AIDS organization, the Terrence Higgins (ph) Trust. And she has attended the National Conference on Women and HIV just held in Los Angeles.

I was just reading recently in the newspaper that this spermicide ingredient "nonoxynal-9" (ph) which was believed to have the ability to kill off HIV and therefore prevent women from contracting the virus was found in a study that was done in Cameroon to be ineffective in actually preventing the transmission of HIV, and I'm wondering what you know about that?

GORNA: The data on nonoxynal-9 is very conflicting, and it's very depressing, frankly. We have this spermicide that we know kills sperm. We also have quite good data showing that it's relatively effective in killing other sexually transmitted infections like gonorrhea. So, the hope had been that it would work against HIV, and certainly test-tube studies showed that it very quickly deactivated HIV.

The problem is you've really got to see whether it works in real life, and the very first study that was done suggested that actually it could be dangerous. And the reason for that is that it seemed to cause a degree of trauma to the woman's genital mucosa.

And what that meant was that there was some abrasions, cuts, and therefore when a woman had sex and when a man ejaculated, the virus was much more able to get into her bloodstream through a cut.

And, what we've heard at the conference this week is that healthy genitals will usually protect against HIV; that actually, to maintain good vaginal health is one of -- a good way of protecting yourself against the virus. The worry is that nonoxynal-9 actually damages.

GROSS: Now -- is -- are you saying that the spermicide itself irritates the vaginal lining and causes abrasions? Or is it the diaphragm that it might be put on that's causing it?

GORNA: The biggest concern is -- actually, it's the spermicide. In the study in the Cameroon, they had used a film of the spermicide, so it didn't need to be used with a diaphragm. It could just be applied on its own. The chemical nonoxynal-9 is a very small chemical, and that means that it can actually get through the epithelia (ph) -- the walls of the vagina and enter through and cause some breakage.

They are looking, however -- it's not too gloomy -- they are looking at a number of other compounds, and we call them microbicides because that means they kill off a whole range of bacteria, viruses, bugs. And what we're looking at is much bigger chemicals -- much bigger molecules, so that they can't break through the delicate epithelia of the genital mucosa.

And it almost becomes like a chemical condom, so that instead of having to rely on a bit of latex that he wears, a woman should be able to insert this gel or cream herself and be protected.

But sadly, this is still early days, and we think will be a number of years into the new millennium before any product is commercially available. We did hear about a number of trials ongoing.

There's one in Rhode Island where they're trying out a new version of a particular gel which is different from nonoxynal-9. It's these bigger molecules. And it's looking quite safe at the moment, and if it continues to progress well, then it will go to a larger trial throughout the world.

GROSS: Robyn, let's take a short break and then we'll talk some more. My guest is Robyn Gorna, and she's an expert on women and HIV and she just attended the National Conference on Women and HIV in Los Angeles. And we'll talk more after this break.

This is FRESH AIR.

BREAK

GROSS: My guest is Robyn Gorna, and she is an expert on women and HIV. In fact, she's going to be editing a new magazine on that subject and she's the author of a book on women and HIV. We're going to be talking pretty specifically and explicitly about safer sex, so it's possible you won't find this conversation suitable for children in your family. So, be advised.

Robyn, what's the latest information on women contracting the virus from vaginal intercourse with a man?

GORNA: We've always known that vaginal intercourse is a risk factor. In the early days, because most of our information came from gay men, people thought that it was predominantly anal intercourse, whether between two men or a man and a woman, that led to HIV being transmitted.

It certainly does between men and women, and we need to be cognizant of the fact that perhaps one in four women do practice anal sex, either for contraceptive reasons or because they enjoy it.

However, vaginal intercourse is the predominant route of transmission, and HIV can easily be transmitted when a woman receives semen into her vagina. What we heard at the conference this week is that a healthy vagina is relatively protective.

We need to think about how you maintain that, and I was alarmed to hear that in the U.S., there's a $120 million every year spent on vaginal douching and deodorant products.

Now, this is alarming because what these products do is actually kill off the healthy bacteria -- the lacto-bacilli (ph) -- which maintain the health of your genitals and therefore are protective against HIV and other STDs. So, one of the really practical things women could do is to avoid these kinds of products.

The other key factor that seems to lead to HIV being transmitted is sexually transmitted diseases. One of the things we know about women -- and we've known this for a long time -- is that most sexually transmitted diseases can be silent. We simply don't know we have them.

So, it's a really great idea to say to a woman who's either had more than one sexual partner with whom she's not used condoms or whose had a sexual partner who himself has had more than one sexual partner -- to get a thorough STD checkup. Because if you can make sure you don't have STDs and your partner doesn't have STDs, then your ability to protect yourself from HIV is really enhanced.

What we did here, though, is vaginal sex continues to be a leading cause of HIV being transmitted and it's very easy to prevent if a man is willing to use a condom. That's an excellent barrier to HIV being transmitted.

GROSS: If a woman has, for instance, a yeast infection or another form of vaginitis, is she more likely to contract the AIDS virus because of irritation of the skin?

GORNA: That's correct. A yeast infection, vaginitis, any other STD alters the acidic balance of your vagina. It also means there's more likelihood that there will be abrasions.

And so if a woman is having sex with a man who has HIV, then she is at higher risk of getting HIV from him. And indeed, if the woman herself has HIV, she is more likely to pass it on to a man.

It is harder for a woman to pass HIV to a man, but it definitely does happen and it certainly happens much more readily in the presence of STDs or any bleeding.

One of the studies I heard at the conference which was somewhat reassuring is that if a woman is menstruating, she's not more likely to pass the virus on than any other time, but there are clearly many, many cases worldwide -- hundreds of thousands -- where women have passed the virus on to men.

GROSS: Is that because menstrual blood is different from the blood that flows through your veins?

GORNA: That's correct. Menstrual blood is basically the lining of your womb. It's old blood. It's not the systemic blood. So, there are a lot of taboo's around sex during that period of time, but actually in terms of disease, there's no more likelihood of disease being transmitted in either direction.

GROSS: So is menstrual blood free of the AIDS virus, even though blood is -- blood in an infected person would have a lot of the AIDS virus in it?

GORNA: No, it's not that menstrual blood is free of the virus. It's simply that it is at the same concentration as other sexual fluids, as other vaginal fluids. Male sexual fluids have more HIV in them than female sexual fluids, on average.

But there are other confounding variables. What we know is that if someone is newly-infected in the first three to six months, she or he will have high, high levels of virus circulating in their blood and in their sexual fluids.

Again, if someone is starting to become sick with HIV or if their immune system is failing, then they may not be aware of it. Then, again, they're likely to have much higher levels of HIV in their sexual fluids.

So at those times, whatever the fluid -- whether it's menstrual blood, sexual fluids, or blood in the system -- those will be more infectious than at any other time.

GROSS: Well, that's actually very disturbing because it means that, for instance, your partner cannot even be aware that they're infected yet, because they're in the early stages of infection, and can be spreading it more readily to you.

GORNA: I think this is one of the very alarming features, which is that the time at which we think people are most infectious is the time when none of the tests will show that someone is HIV positive. And I think what this takes us back to is: how do we prevent HIV being transmitted?

We can talk a lot about the biology of it, but I was very encouraged in a biological session at the conference that the researcher said: what we need to concentrate our trials on, where we need to get the gold standard of research, is on behavior.

We need to understand why people have risky sex or don't have risky sex. We need to think about how people communicate with their partners and lovers -- whether they're in a monogamous relationship or whether they're having multiple partners. What is it that helps them to avoid unprotected intercourse? And ultimately, what can we do to educate men?

If we only have the male condom and the reality -- the female condom -- available to us -- both of which require either the male to use it or full male consent, we need to think about what is it that could motivate men to use these to protect the women they love; the women they want to have sex with. Because ultimately, that's the only strategy we have available to us at this point in time.

GROSS: What's on the horizon that you're hoping for?

GORNA: Well, I think most of us are really hoping for a microbicide. It's almost a tragic indictment of male-female relationships, though, one has to say, because what we're hoping for with a microbicide is that a woman can use it without having to say to a man: I'm using it.

Now, partly, she'll want to use it because a lot of people don't like condoms, and I think that's fine, and we ought to be honest and open about that and say condoms aren't the most wonderful, most pleasurable bits of latex that have ever been invented.

However, they can save your life. They can also prevent an unwanted pregnancy. I mean, however annoying and irritating they are, they have a great benefit. But we must look to something which women can use without telling men, or, indeed, which women can use to make sex more pleasurable and ensure that it's safe.

Because after all, this is an activity that's usually engaged in for pleasure, and yet it can cause such devastating disease and such terrible loss of life.

GROSS: I'd like to hear a little bit about your forthcoming magazine. I believe it starts publishing in June -- in July?

GORNA: That's correct. It's called "Demi-Monde" (ph) and we've used that title because women are half the world, but also because the word "Demi-Monde" often refers to woman sort of of the underclass, and it feels as if women with HIV and other immuno-compromised conditions, are treated as sub-standard. They're not taken as seriously as men with those conditions or, indeed, as women without those conditions.

And what we're hoping to do is really to advocate for women and with women who are living with HIV, with Lupus, who've received chemotherapy and radiotherapy -- about what the changes are in their lives that they need to live powerfully and well.

Women with HIV have learned from the very first people -- the men with HIV -- who became feisty activists and advocates and really partnered with their health care providers to make sure that they got the care they needed.

And as women with HIV are learning to develop this partnership role with their health care providers, we think there's a lot that we can do to educate them about what's happening within their bodies; what their needs are; what's happening in their lives.

And to pass that learning out to other women with immuno-compromising conditions, who have the same and similar needs for education and support.

GROSS: Robyn Gorna is the author of "Vamps, Virgins, and Victims: How Can Women Fight Aids." She is the editor of the forthcoming magazine on women and AIDS called "Demi-Monde" and she's on the planning committee for next year's World AIDS Conference.

She'll be back with us in the second half of our show.

I'm Terry Gross and this is FRESH AIR.

BREAK

GROSS: This is FRESH AIR. I'm Terry Gross. Back with more of our conversation on women, AIDS, and safer sex.

My guest is Robyn Gorna, author of a book about women and HIV, and editor of a new magazine on the subject called "Demi-Monde" which will be launched in July.

I spoke with her yesterday from Los Angeles, where she attended a national conference on women and AIDS. She works in London with England's leading AIDS organization.

Because safer sex is a life and death issue, we spoke explicitly about sexual practices that carry high risk. Be advised that this is a conversation geared to adults that you may find inappropriate for children.

Robyn, I'm interested in hearing the latest information about oral sex. Let's start with a woman having oral sex with a man. Can a woman contract the AIDS virus from sperm during the act of oral sex?

GORNA: There have been a few cases reported throughout the world of women or men becoming infected from getting sperm into their mouths, and it's caused a great deal of fear and anxiety.

The most important thing to say is that we believe that the act of oral sex on a man is safer sex. There has been some division between Europe and America on this, but I would say that most of our American colleagues would concur with that.

It's important to emphasize "safer." It's not safe. And there's very little in this world that is risk-free. And what we do know is that occasionally, the virus has been transmitted that way.

It appears that if you do not get sperm into your mouth, then the likelihood of your contracting the virus in that way is extremely rare, extremely low. But there have been a couple of cases reported.

And this comes back to similar features we were discussing in terms of vaginal intercourse -- that there are times in the life of a person with HIV when they are more infectious and that particularly when they have a sexually transmitted disease; when they have just become infected themselves; or when they are, perhaps, becoming unwell with AIDS or where their immune systems are damaged.

The time when their viral load is highest is when these cases of transmission have occurred. But I would want to emphasize that we're talking about perhaps a dozen cases having been reported worldwide, and yet we know that there are 22 million people with HIV.

So, one would want to not be overly reassuring and say that this is 100 percent risk-free, but compared to the dramatic fear and danger of transmission through vaginal sex or anal sex, this is a lower-risk activity.

The reason we say that that is important, because we have got other behavior studies that show when people over-estimate the risk of how HIV is transmitted, they tend to become almost complacent and say, well, if I can catch it from oral sex, I don't need to worry about condoms for vaginal sex because I know already I've got it anyway.

So, it's important that people have an opportunity to make choices in their lives. Some of us would never get on a bicycle without wearing a helmet. Others would be quite happy to cycle the wrong way down a freeway on a bicycle. It's your life. You make choices. But there definitely is some risk associated to oral sex.

GROSS: Now, if you're having oral sex with somebody and you have, say, a blister in your mouth or you burned your upper palate on a hot slice of pizza or your lips are chapped -- your lips are cracked. Are you more likely to contract the AIDS virus from a partner because you have an abrasion of the skin?

GORNA: Some of the data we've seen has suggested that if you have a severe abrasion in your throat or your mouth, such as the abrasions or inflammations caused by gonorrhea and other sexually transmitted disease, then there is an increased likelihood of this very rare situation of HIV being transmitted by oral sex.

I think it's important not to get things out of proportion. There was a time when everyone said: don't brush your teeth before you have oral sex. Use a mouthwash instead. I don't think we need to get totally hysterical about it. But it's certainly true that good oral health is protective.

One of the other things to say is that saliva is incredibly protective. Throughout our lives, from the minute we're born, we put a lot of gunk in our mouths. We pick up things. We don't wash our hands. And we're actually very able to fight off infection, to fight off bacterias. And they have discovered a chemical substance in saliva that seems to be good at fighting HIV.

But certainly, if you've got major bleeding of your gums or if you've got an abrasion at the back of your throat, then there is a slightly increased risk that you would be vulnerable to be getting HIV from semen that way. And again, I would want to emphasize the importance of regular screening for sexually transmitted diseases if there's any chance you've been at risk, 'cause that's one of the best ways that you can boost your health.

GROSS: Are you any more at risk if you swallow the sperm?

GORNA: I think debate has been had about swallowing or spitting, and frankly the evidence seems to go either way. If you really want to be careful, then not getting semen in your mouth is the best starting point. But ultimately, if you swallow, then the gastric juices in your stomach are acidic and they are likely to kill off the virus. If you spit, you may maintain contact with the mucosa of the mouth for longer, so I don't think there's a lot in it that way.

GROSS: So the question is whether you get it in your mouth or not, that's the big issue?

GORNA: That's right. But again, I would want to emphasize that hundreds of thousands of people throughout the world have got HIV-infected semen in their mouths and have not become infected that way. Most people have acquired HIV through getting semen into their anuses or their vaginas, and that's because the mucosa of your genitals is much finer, is much more delicate. And the ability to cause trauma and to have abrasions and routes of entry is greater in the vagina or in the anus than it ever will be in the mouth and throat.

GROSS: We're talking to about women and HIV, and we're having a kind of frank, explicit discussion on sexual practices that can lead to contracting the HIV virus, so be advised that we are talking frankly about that.

Let's talk about sex between women. Is oral sex any more or less risky between two women than between a man and a woman?

GORNA: OK, well, if we're talking about the act of cunnilingus; if we're talking about oral sex where a woman or a man is stimulating a women's genitals with their mouth and tongue, we have no evidence of HIV ever being transmitted that way from an HIV-infected woman.

That doesn't mean there's not a tiny theoretical possibility. There have also been a couple of case reports which have suggested HIV has been suggested HIV has been transmitted that way, but when we've looked into them with greater detail, we see that HIV has not been passed that way.

There are a couple of reasons for that. One is that the concentration of HIV in women's sexual fluids does appear to be less than in men's sexual fluids. And the reason why women can pass it to men during vaginal sex is that there's a greater time of contact.

There's more likelihood of trauma abrasion if the sex is going on for longer. There is more of the vaginal fluids or the menstrual fluids that can contact the parts of the penis that are vulnerable. So A, it's because of the amount of fluid that's available there and the level of HIV in it.

But the other side is: how does the virus enter the body of either the man or the woman who is performing oral sex? And there doesn't seem to be a particularly good route of entry. In vaginal sex, we know that the male urethra and the top of the penis is quite vulnerable to infection, but the tongue isn't particularly vulnerable. The saliva in the mouth is, again, a protective feature.

And it's different from oral sex on a man because it's rare for you to receive women's sexual fluids, say, to the back of the throat. And generally, they don't sort of transmit at a similar rate of speed. There's a theoretical risk that if the person performing oral sex has a lot of breaks around their mouth; a lot of, for example, cold sores on their lips -- that they could be at some small risk of getting HIV that way from a woman's sexual fluids. But really, there are no reliable case reports of that having occurred.

However, I would say that in terms of sex between women, there have been a couple of case reports where I think HIV was transmitted from one woman living with HIV to another, and that has been through the sharing of sex toys which have not been cleaned or have not had a condom applied to them in between. And this is simply because the ability of the women's sexual fluids to be placed into close contact with a vulnerable surface has been increased.

And also in that case, I believe that one of the women had sexually transmitted diseases as well, which made it much more easy for her to have the sexual fluids enter her own genital mucosa through an abrasion.

So, I think the good news is that oral sex among women is really relatively safe, but the news for women who do partner with women is that there are still some risks and good hygiene and sexual practice is tremendously important.

GROSS: My guest is Robyn Gorna, author of a book and editor of a new magazine on women and AIDS. She's on the planning committee for next year's Global AIDS Conference. We'll talk more after our break.

This is FRESH AIR.

BREAK

GROSS: Back with Robyn Gorna. We're talking about women and AIDS. Be advised that we're talking explicitly about safer sex to protect against AIDS.

What's your best advice to women on how to prevent HIV?

GORNA: It's so difficult to advise women about how to prevent HIV if they are in a situation where they don't feel in control of their sexuality. And I think that the big shift we need to make is to honest and open communication with our sexual partners or would-be sexual partners. We can start with our children, with our family, with our friends.

If we can reach a level of honesty where we discuss what it is we like sexually; what it is we don't like; what our fears are; what are hopes are -- hopefully, we can start to discuss some of the more difficult issues, such as: is this a truly monogamous relationship?

You know, 80 percent of the women in the world who became HIV infected already got HIV from the one man they ever had sex with. They believed they were in a monogamous relationship. He wasn't maintaining it as monogamous.

And if we can develop our loving and sexual relationships in such a way that we can talk about that -- we can make agreements. We can say: OK, for me this is just about you, but if you ever want to play the field; if you ever find yourself having sex with other women or perhaps with other men, please, please, use a condom to protect me.

It's that kind of message; it's that kind of openness. And I know that that's very scary for women, but I think that might take us a long way forward. And perhaps not just in terms of HIV prevention. It might enrich our human relationships.

But frankly, from a disease perspective, it's that kind of openness and honesty that we need because so many men fear it. At our help line at the Terrence Higgins Trust in London, we often find on a Monday morning that we get calls from men who, over the weekend, have perhaps gone off and had sex with another man, and they're terrified.

Their wives expect them to have sex. They want to have sex with their wives. They still love them. They've never used condoms. What are they going to do? If they introduce condoms, she'll suspect.

And we really have to talk with them about the whole context of their relationship -- about how it is that they have this loving relationship with a woman, and yet may potentially put them at risk. And I think those are the starting points.

From the biological point of view, I would say to keep yourself healthy, vaginally healthy, is really important. One of the doctors at the conference this week spoke about how much women spend on getting nail extensions; on getting facials -- the things we do with beauty products to take care of ourselves.

And if we could only take a similar care of our vaginal health, we would really be doing some good. And the best things we can do there is not to douche and to get STD screens.

GROSS: You have been studying women and HIV and you're an activist in that area as well. In fact, you're going to be editing a new magazine for women with HIV and other immune-compromising conditions. Why does this still need to be a kind of subset within AIDS? I mean, why do women still need to be treated differently?

GORNA: Women living with HIV need to be treated differently, frankly, because their life experiences are usually different from those of men and because, tragically, there is still insufficient research to help us understand the course of disease; to help us understand how we can best work with women to prevent them from becoming unwell; to help them to comply with the medications that are now available; to help them know what are the opportunistic infections that may occur.

One of the alarming things that we heard at the conference was about the rates of cervical cancer and cervical pre-cancer. We've always known that within HIV-infected women, the likelihood of developing pre-cancers of the cervix is much greater than amongst HIV-negative women.

And we heard, for example, that amongst a group of 2,000 women with HIV, 58 percent had also got the virus HPV -- the wart virus, which can easily lead to cervical cancer.

And the real tragedy is that whilst there is a treatment, if you have lesions, which suggests that you're going on to develop cervical cancer, in women who don't have HIV, 10 percent of women who are treated for that pre-cancer go on to recur. Yet in women who do have HIV, 50 to 60 percent who are treated go on to have a second bout of the pre-cancer.

What this means is that women with HIV have very special and specific needs which are different from men's, and it's so easy for these to get lost and hidden. We also still have a situation in the U.S. where the FDA does not require that all clinical trials have women involved or, more importantly, that there's a bi-gender analysis done.

And what that would mean is that every time we hear this great news about combination therapies and protease inhibitors, someone ought to be looking at the data and saying: are they working differently with women?

There may be good reasons why they should -- the endocrine system; the body weight mass; or simple factors like: are they interacting with the hormonal contraception that a woman is using?

We do know that if you are taking one of the protease inhibitors, it may be that your contraception no longer works as well. And women have often wanted to know: do some of these anti-retroviral drugs, which are powerful drugs, do they affect their menstrual cycles? Do they affect their hormone systems? Sadly, we still don't know the answers to those questions.

Those are just the biological questions. From a social point of view, there are many, many needs women have that are dramatically different from the majority of men in the U.S. living with HIV and, indeed, worldwide.

The most obvious point is, of course, children. And obviously, not all women have children and most women spend most of their lives not pregnant. But when you are pregnant or when you do have children, the ways in which you're able to deal with your HIV disease may radically alter. And we need to look at those specificities. We need to help women to make the adjustments in their lives that make sense for them.

GROSS: At the end of March, it was reported that AZT, one of the AIDS drugs, largely prevents mother to child transmission of HIV, even among pregnant women with relatively advanced HIV. What do you know about that?

GORNA: There have been reports now for something like three or four years about the role of AZT in pregnancy. And it is good news, however I think it's sometimes being taken slightly out of context. What we also know is that if you don't breast feed, your likelihood of your child becoming HIV-infected is halved. That's extremely significant news.

We also know that if your membranes are not ruptured for more than two to three hours, the likelihood of your child being infected is significantly reduced.

If you don't have any interventions during the birth, again, your likelihood of the child being infected are dramatically reduced.

On top of this information, we know that using AZT can reduce the risk of the child being infected by up to two-thirds, and that is great news. I do think it's important to put it in context, however. And the context that's important to remember is that the protocol for the trial that led to this great news is extremely cumbersome.

Basically, a woman could be taking AZT for up to six months from the beginning of the second trimester of her pregnancy. She'll be hooked up to an IV solution of AZT during the delivery of her child, and her child will then be given AZT syrup for the first few weeks of life. And it's a sort of belt and braces and belt again approach, whereby we try and hit all of the different times when HIV transmission may occur.

I think it important for people to understand that even through the extraordinarily intimate and prolonged exposure to a woman's blood and vaginal secretions, the overwhelming majority of children will not become infected with HIV even if no AZT is taken. In Europe, our rates are one in seven. That means six in seven babies will be born -- without any intervention -- without HIV.

What we need to find out is better ways of reducing the risk than just using AZT. AZT alone is seen as sub-standard care for anyone living with HIV at this point in a developed country. And there are a number of people extremely concerned at this conference about the use of AZT in pregnant women.

GROSS: My guest is Robyn Gorna, an expert on women and AIDS. We'll talk more after a break.

This is FRESH AIR.

BREAK

GROSS: My guest is Robyn Gorna and he has just attended a national conference on women and HIV in Los Angeles. She is editing a new magazine that will first be published in July on women and HIV, and she's the author of a book on that subject as well, called "Vamps, Virgins, and Victims." And she works in London, where she directs an AIDS program for England's leading AIDS service organization.

You first became an AIDS activist working with gay men who had AIDS and I guess it was around 1986 that you started this work. What led you to work on women with AIDS and to focus on women and HIV?

GORNA: As a woman, I've always been concerned about feminist issues and women-centered issues. And I can care deeply about the impact that AIDS is having on gay men and the prejudice and the stigma. As time has progressed, the numbers of women infected and affected has grown dramatically.

When I started in 1986, I remember there was one woman with AIDS involved in my organization, and there were 30, 40 men. That's now changed dramatically. I have dear friends who are women living with the virus.

And just seeing the different impacts on their bodies has really affected me. And as well as the women living with HIV whom I know, it's also been thinking about how I protect myself -- how the women I encounter protect themselves. And how really dramatically different the gender politics make it for us to be able to protect ourselves.

I think that there's a lot similarities between gay men and women. I think that the way that gay men are marginalized from society is similar to the way that women are not taken seriously in society. And at the same time of their being great similarities, also I believe there are great differences, and we need to help gay men who hold most of the power around HIV and AIDS -- certainly, the community organizations -- to understand the very specific and difficult needs of women.

At the moment, I'm pregnant and trying to have my gay male colleagues understand the demands that that places on me and the differences that create is extremely difficult, because it's a life reality that most of them never face.

GROSS: What do you feel they don't get about it?

GORNA: They don't seem to understand why I'm tired so much. They just don't seem to understand the different demands of a personal life which is something perhaps they couldn't hope for.

And I suppose in an HIV context, where we are so used to our friends and colleagues dying, that it's almost depressing for them or upsetting to see me embarking on a new life, and on so much hope and optimism.

So, there is something quite discomforting when they're used to being supportive of each other around someone's deathbed. We're used to organizing funerals together. It doesn't make a lot of sense for them to start thinking about how could we organize to support me in bringing up children.

GROSS: That's a very interesting way that you put that. So -- I wonder if that's -- if you're feeling that same paradox yourself because you've been surrounded by friends who've died and you've worked so closely on AIDS and now you're bringing new life into the world. I mean, do you -- is it hard for you to feel celebratory about it?

GORNA: It's certainly somewhat contradictory, but I'm absolutely thrilled. But it is a strange thing because I think any new mother worries about the world that you're bringing your children into. And when I look around at something like the AIDS crisis, I continue to see stigma, prejudice, discrimination, disease.

And a very limited hope -- an optimism which isn't the kind of optimism I can fully believe in. And of course, one's just horribly aware of the range of suffering and devastation throughout the world.

We've spoken mostly about the U.S. and Europe, and yet I'm so conscious that the majority world living with HIV is a majority world that doesn't have access to clean water, let alone adequate nutrition, let alone any therapies that could be useful to them to prevent PCP or even reduce their viral load.

And the inequities that surround HIV and surround our health are so overwhelming that it is hard to feel hopeful about the world one's bringing children into.

GROSS: We're just about out of time, but I know you're working on next year's international AIDS conference. What are you most hoping to have addressed at the conference?

GORNA: One of the critical things we need to start looking at is how -- although the hope is limited and the optimism isn't absolute -- how the new therapies can make sense to people in the majority world, the majority of people living with HIV.

How it is that we can secure a future for the planet and how we can make sure that people who are most vulnerable to this infection A, avoid it; and B, when they are infected with HIV, can have a high-quality of life and hopefully as long a quantity of life as possible.

I think we need to accelerate research into the behavior issues. What is it we know about human behavior that can help us to prevent people from becoming infected? And also, research into vaccines and microbicides are dramatically important.

We've got to find new ways of protecting people. With 4,000 new infections every day amongst women, this epidemic is seriously out of control in our world, and we need to be as imaginative and creative as we can be in finding ways to stop people from getting infected.

Because that's really the principal goal, and then if, tragically, they become infected with this virus, how can we find a way to keep the virus under control; to suppress it in the long term in such a way that makes sense for people's real lives.

And the drugs we have now don't make sense in people's real lives -- not over a decade or two. They might be drugs that you can take for a year or two, but they require an unnatural act. They require you to really take on board far more medication than most people could ever dream of. And that's not something that's sustainable.

GROSS: Robyn Gorna, I want to thank you very much for talking with us.

GORNA: Thank you very much, Terry.

GROSS: Robyn Gorna is the author of "Vamps, Virgins, and Victims: How Can Women Fight AIDS?" and is the editor in chief of the magazine on women and AIDS "Demi-Monde," which will be launched in July.

She's based in London where she works for the AIDS organization, The Terrence Higgins Trust.

Dateline: Terry Gross, Philadelphia
Guest: Robyn Gorna
High:
Spec:
Please note, this is not the final feed of record

Copy: Content and programming copyright (c) 1997 National Public Radio, Inc. All rights reserved. Transcribed by Federal Document Clearing House, Inc. under license from National Public Radio, Inc. Formatting copyright (c) 1997 Federal Document Clearing House, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to National Public Radio, Inc. This transcript may not be reproduced in whole or in part without prior written permission. For further information please contact NPR's Business Affairs at (202) 414-2954
End-Story: Robyn Gorna
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.