Jorge Pérez, MD, MS
Vice-Director, Pedro Kourí Institute of Tropical Medicine (IPK)
Director, IPK Hospital, Havana
Dr. Jorge Pérez is known to virtually everyone working in HIV/AIDS in Cuba today - and perhaps most importantly, to nearly all of the 6,682 Cubans who have become infected with the virus since the 1980s. He was the founding Director of the Santiago de las Vegas Sanatorium, where patients were obliged to stay before the 1993 policy shift that gave them the option of ambulatory care. As a physician, he has accompanied many in their search for a way to live with the disease and to become active in prevention and counseling. And he has accompanied others in their most difficult moments. MEDICC Review spoke with him about Cuba’s experience with mother-to-child transmission over the last two decades.
MR: Cuba’s mother-to-child transmission rate is very low, compared to other countries in the region. How do you explain that?
JP: I think one thing is that we began indicating HIV testing as part of the regular prenatal laboratory workup for pregnant women as early as 1986-1987. Obviously this was indicated to women in the context of an appointment with their physician, in which the test was explained, followed by another session to inform each woman of the results.
I don’t think other countries approached the problem quite like this. And we were criticized for it: people said that this violated women’s human rights. But we didn’t see it that way. We thought that women had the right to be informed if their child might be born with the infection, and that this was the only way to responsibly guarantee their right to decide whether to continue the pregnancy or not. It’s every woman’s right to know, because it’s very, very tough to go through a pregnancy, give birth, and only then find out that you have infected your baby, or that you risked doing so.
So, we began to order HIV serology among the tests. And if the results were positive, then the woman was counseled, so that she would understand her situation, explaining that she had the right to decide to have a therapeutic abortion or to continue her pregnancy. If she decided to continue, then she was brought into a special program from that time forward, aimed to reduce the risk of infection for her baby. This included preparing her for delivery by caesarean section, and advising her against breastfeeding - which were the only things we could do at that time.
In addition, she was given special nutritional supplements - not told to go home and eat this or that if she didn’t have it available - but actually putting the supplements in her hands.
Now, when prophylaxis with AZT (zidovudine, ZDV) was discovered to be effective, we began administering it to each seropositive woman beginning in her 14th week of pregnancy, 500mg per day. Later, other protocols and guidelines were established internationally depending on viral load and recommending anti-retroviral (ARV) chemoprophylaxis in such cases, in order to reduce the viral load to a minimum.
In essence, I think that our record of so few births of seropositive children is due to active testing from the start - the search for possible cases among pregnant women - in order to then follow up with the appropriate therapy. Over 200 women have gone through with their pregnancies, and just 26 of the children born were infected with HIV.
MR: Are there other things that Cuban health authorities have done differently from other countries?
JP: Yes, one important thing is that we didn’t just study the woman herself, but also her partner. In other countries, neither the woman nor her partner is necessarily tested.
Partly perhaps because in some countries, discrimination against HIV-positive women in the health system itself is a serious problem. But here, luckily we’re able to tell women that they have every right to have their babies, and to have the medical care they need. And so, women and their partners were able to understand the health reasons for testing, because they wanted to protect their unborn children. Later, of course, when seropositive women saw that the chemoprophylaxis was quite effective, they were even more encouraged.
MR: Could you elaborate on the program for seropositive women in pregnancy?
JP: The primary thing is that their pregnancy is followed more closely by their family doctor and obstetrician - instead of seeing the doctor once a month like other women, they’ll see the doctor every two weeks for at least the first two months. They are given chemoprophylaxis, their viral load is studied, CD4 count, so that each one knows her situation. And in the process, she’s further educated about HIV, how to handle her pregnancy, her delivery and care for her newborn to obtain the best possible results.
Finally, she’s hospitalized for a caesarean. And when the baby is born, she’s given formula to substitute breastfeeding. The care is free of charge, of course.
MR: What about discrimination against HIV+ children themselves? Stigmatization in school and in their communities. What is the situation in Cuba today?
JP: We live in this world, like everyone else. So, yes, some children may have been the victims of discrimination based on people’s ignorance, especially ignorance on the part of other parents. But we haven’t seen serious cases of this, and we have never had institutional discrimination. These children attend school, have friends, play.
But you have to realize how tough it is for them even so: you have to understand that these children are limited in many ways. First, because they are sick, and they get sick often. And second, because they may suffer polymorphism that distinguishes them from other children their age. And then they don’t grow like other youngsters, they don’t gain weight like others do. Despite all the treatments, the very lives of these children are fragile and constantly at risk.
MR: In terms of school, do the teachers know these children are HIV-positive?
JP: No. That’s the decision and responsibility of the parents, not ours. In some cases, the parents don’t want others to know. We even have cases where the parents have not told the child him- or herself. It’s hard for us to conceive of that, but it’s their decision and we have to respect it.
MR: The international literature refers not only to “AIDS orphans” but also to children who are especially vulnerable….
JP: Yes, they’re referring to street children, beggars. But as such, these are not social problems in Cuba. You might find a child who approaches a tourist to ask for money, for candy or gum, but that child has shoes and a meal at home. We’re poor in Cuba, no doubt about that, but it’s not the extreme, indecent poverty you see in some places.
Of course we have some people who live better than others, that’s true, and that’s why we have social workers and special programs to assist families in need, and to assist the children born into those families, who we might also call vulnerable. In those cases, then, the family is exempted from rent, they’re given additional food allotments, and so on. There may be some exceptions, but I would venture very few.
MR: What about medications for these children?
JP: For some time, we used to prepare their medications from the adult versions. But now we import special pediatric medications for them.
MR: The situation in the world concerning MTCT is alarming and tragic. What do you see as the most important steps health systems can take to protect newborns?
JP: One thing is that a woman should know her HIV status, and once she knows, she needs to be counseled and collaborated with to do everything possible so the child will not be infected; to make sure that there is good adherence to ARV therapy, and good laboratory follow-up. That’s on the medical side. On the human side, we should help to keep her from feeling discriminated against, from becoming discouraged or depressed, encouraging her so that she can assimilate all she needs to in order to protect her child.