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Not so long ago, many people viewed a positive HIV test as a death sentence. HIV almost invariably led to AIDS, and AIDS was almost always fatal. But now, some people infected with the HIV virus are living longer, healthier lives than once expected, thanks to new drug therapies that keep the virus at bay. This means that some HIV-infected Americans are pursuing a dream they once thought off-limits: having children. The new drugs extend life but do not eliminate the risk of getting HIV from unprotected sex. An unusual new program in Boston aims to help HIV-positive men and their uninfected female partners have a baby without passing along the virus.THE NEW DRUG THERAPIES meant a big change in thinking for a Boston couple named Charley and Barbara. Charley has been HIV positive for a dozen years; Barbara is not. With medications, Charley's health is relatively good, so for the first time they can plan life more than just a few weeks out.
Charley: The horizon seemed to expand from tomorrow to next year, and not wondering if I was going to be sick tomorrow, but I was figuring that I would be fine tomorrow and the day after as a result of these drugs.But not so fast. If Barbara and Charley have unprotected sex, odds are she won't get HIV, but there's certainly no guarantee. At any given time a man may have more of the virus in his semen; at any given time a women may be more susceptible than usual to getting the infection. And few women get pregnant on the first try.
Barbara: That presented us an opportunity to be normal, to be like another couple.
Charley: Then to be thinking about the possibility of having children was very exciting.
Barbara: I thought thoughts that I think other people do, of what would this feel like growing inside me. Not to have a child, but to have our child.
Harvard University researcher Ann Kiessling wants to test a treatment for couples like Barbara and Charley. Kiessling directed the laboratories at two Harvard-affiliated infertility clinics and also studies the basic science of sexually transmitted diseases. Kiessling considers a man with HIV infertile, even if there's otherwise nothing wrong with his sperm.
Kiessling: They can't conceive naturally without a real risk to the mother and the baby. That's never been part of the infertility definition, but in their day-to-day world, they're infertile.There may be thousands of American couples in which the man is HIV positive and the woman is not. Scientists call them serodiscordant couples. Among them are Harrison and Lilly, who did not want to give their real names because their families do not know that Harrison has HIV. The couple was married six years ago. Harrison tested positive for HIV shortly after. Now they're enrolled in Ann Kiessling's experimental program.
Lilly: We always thought we'd have children. Then we became an HIV-positive discordant couple. And we thought, "That's it, we can't have kids, we just can't have kids." And then we met Ann. And now....In addition there's this question: if Lilly contracts HIV, would the baby get it, too? The chances are high: HIV-infected American women have a one-in-four danger of transmitting the disease to their children. Studies show that with anti-AIDS drugs, that risk can drop to less than 10 percent - still a high figure. Researchers say a key to helping the female partner get pregnant without transmitting HIV is a laboratory technique called sperm washing.
Harrison: There are a lot of issues we have to work through. Is it morally reprehensible to have a baby if you're HIV positive?
Lilly: Knowing that one parent can die. ...A lot of people say anyone can lose a parent. But they don't know that ahead of time. You don't know that going in.
SFX: Lab sounds, clicking and clatteringIt's a relatively simple procedure used every day in conventional sperm banks and infertility clinics to boost the potency of sperm. With a centrifuge and other equipment, lab technicians separate sperm from the rest of the semen, removing extraneous cells and fluids.
SFX: Timer goes "ding!"Once a sample is cleaned, only the most potent sperm cells are left, which are then injected into the woman's uterus by artificial insemination. Harvard researcher Deborah Anderson is an international authority on HIV transmission. Her lab conducted extensive research on sperm washing and found it highly effective against HIV.
Anderson: I don't think you can give 100 percent guarantees. But what you can offer is numbers that say that by doing a sperm wash the couple is much better off, much safer than trying to conceive on their own. We can decrease the virus load in semen 100,000-fold.Anderson believes HIV generally lurks in white blood cells and other parts of the semen that get washed away - not in the sperm cells. In men who have a very advanced case of AIDS, the sperm may get infected. Ann Kiessling notes that the question of whether sperm cells can carry HIV is still scientifically controversial.
Kiessling: Other labs claim that those particles can actually adhere to the sperm. We haven't been able to detect that; that's not been our experience.Sperm washing is not available to the American public. But it's been offered for a decade in Milan, Italy. Research from the Italian program has been published in leading international medical journals, a sign that the Milan clinic does scientifically credible work. Doctor Augusto Semprini has artificially inseminated more than 470 women with washed sperm taken from their HIV-infected partners.
Semprini: No woman who has been inseminated has ever developed infection with HIV. No child has ever got infected. So we think the risk of infection by achieving pregnancy with our method is quite low.Semprini says sperm washing for HIV is now offered in at least four other European medical centers. Despite the Italian success record, the federal Centers for Disease Control and Prevention in Atlanta does not condone the practice. CDC epidemiologist Scott Holmberg says other researchers need to replicate the Milan results before the technique should be widely used.
Holmberg: I think for my colleagues and myself we have not yet seen this enough to feel real comfortable. At least initially it will be a gamble on the part of the people using the technique.Ann Kiessling freely acknowledges that her Boston infertility program is experimental. But she says too many HIV-infected couples are already betting that they can make babies the traditional, unprotected way.
Kiessling: I think about how many women have put themselves at risk of infection since I started thinking about this ten years ago. It's thousands and thousands of women.The Italian infertility specialist, Augusto Semprini, says American doctors have been slow to offer help to HIV-infected men because there's an unrealistic belief in the US that a novel medical technique should carry zero risk.
Semprini: While here we accept that the patient may decide to take a small risk against the benefit of parenthood.The potential level of risk in the Boston program is simply unknown. To further reduce the danger to mother and child, the program will encourage couples to use in-vitro fertilization, the process of creating a human embryo in a lab dish. That way the woman never comes in contact with sperm or semen - just the embryo. It may be possible to test the embryo for HIV before it is transferred into the woman's body. But that test is still experimental. The Boston infertility program is set up as an independent, non-profit foundation. Ann Kiessling teamed up with several Harvard infertility specialists to build a clinic - in a distinctly unorthodox location.
SFX: Highway noiseIn the parking lot of a suburban Boston medical center, Kiessling unlocks the door to a conventional-looking recreational vehicle with a connected trailer.
SFX: Road noiseThis is a mobile clinic that's designed to do andrology, semen analyses, and embryo transfers that's attached to a smaller unit that's designed to be an embryo culture lab.
Inside is nearly all the gear needed for in-vitro fertilization. Why a clinic on wheels? Over the years Kiessling's tried to convince a number of infertility programs to offer help for HIV-infected couples. She says some were interested but then backed out for fear of unwanted publicity.
Kiessling: I decided that since I had so many hospitals decide it was a bad idea that we needed to pick up and move if we needed to, so that's how we got into the concept of a mobile clinic.The mobile lab has yet to produce its first human embryo, but it's already generating scientific controversy. Kiessling's Harvard colleague Deborah Anderson runs a completely separate HIV research program and is trying to get the CDC and other medical authorities to endorse sperm washing as a safe technique. Anderson fears that Kiessling is moving too quickly. Anderson recalls a 1990 Virginia case where a doctor tried to help a couple through sperm washing. The woman contracted HIV but did not get pregnant. The CDC investigated but couldn't determine whether the woman got HIV because of the sperm washing procedure.
Anderson: And it set the field back ten years. And that could happen again without the proper protocols in place.Kiessling has asked the research oversight committees of three separate Harvard teaching hospitals to approve her study figuring that at least one of them will take on the politically delicate project. Indeed, one hospital has granted initial approval but wants assurances that the research subjects fully recognize the risks involved. Some critics grumble that Kiessling is too much a maverick People who know her say the 54-year-old biochemist is used to scientific conflict. Her supporters include retired California surgeon Leonard Simpson, a trustee of her Assisted Reproduction Foundation, who says Kiessling's independent nature impels her to serve the patients that other fertility specialists neglect.
Simpson: I think she's probably dealt with controversy throughout her whole professional career. You know, being a maverick or one who thrives on standing up to controversy when she believes it's right is probably a driving force for her.If the experiment succeeds, the Boston infertility program will serve a diverse group of patients. The clinic will probably be the only one in the nation to accept applications from women who wish to carry the child of a gay man with HIV disease. Trustee Leonard Simpson is an activist on gay and HIV issues and the father of a girl conceived before he contracted HIV. Simpson says gay men have as much right to assisted reproduction as heterosexuals, even if those men have HIV disease.
Simpson: With HIV disease there is prejudice, discrimination, ignorance around HIV disease. If a woman had breast cancer, and, assuming that the pregnancy would not hasten her clinical course, most of us would be very sympathetic if a woman wanted to conceive and have a child in the face of an illness.The Assisted Reproduction Foundation has raised more than $350,000 to create the clinical program for people with HIV. A key goal is to offer infertility services at low cost. At many clinics, the bill for in-vitro fertilization can easily top $10,000, and most patients pay out of their own pockets. It's not the money that Harrison and Lilly brood about as they struggle with whether or not to have children. Their eyes rim with tears as they weigh the dangers to Lilly and the child.
Smith: Let me ask you, because we're talking about this risk, the awful question of how would you feel if the child is born with HIV?And there's a final issue to struggle with. Harrison is worried by some reports that the anti-AIDS drugs which keep his illness under control are turning out to be less effective over the long term than first hoped.
Harrison: I don't think we could handle that.
Lilly: I don't think I could deal with being responsible for losing my own child.
Harrison: If there's a measurable chance that that could happen, we just wouldn't have a child.
Harrison: A few years ago we thought maybe I won't die. Now that's no longer the case. I don't think children without two parents have as much opportunity in the world.Harrison and Lilly have much more thinking to do before they can decide to try for a child through the experimental Boston infertility program. It's a gamble, but they have time. Ann Kiessling wants to start working with patients this summer, but it's still unclear whether she can raise enough money and get the final scientific approval she needs to proceed.
Lilly: You can see it everywhere. There's so many social problems now. It all seems to be coming back to nobody's home with the children. People are just doing what they want 'cause it feels good. We can't do that. We can't just go ahead because we want a baby. There's more to it than just your desire to have a child.