Inter Press Service - December 26, 2002
Mario Osava
RIO DE JANEIRO, Dec 26 (IPS) - Sumaia dos Santos Dias was railroaded into having her tubes tied after she gave birth to her third child at the age of 24, because she tested positive for HIV, the AIDS virus.
Today she is working to defend the reproductive rights of other pregnant women living with HIV in Brazil.
Boa Vista, where Dias lives, is the capital of the state of Roraima in the extreme northern part of the country's Amazon jungle reigon, near the Venezuelan border -- one of the areas farthest removed from large cosmopolitan cities like Rio de Janeiro and Sao Paulo.
Dias, whose child was not infected by HIV, was "persuaded" by her doctor to have her tubes tied, on the argument that she would "endanger the life of an innocent child," or leave her children orphans, she told IPS.
"I felt pressured, cornered, as if I were accused of spreading the disease because I was a mother," said Dias, whose husband infected her with HIV and died shortly after the birth of their third child.
The doctor "stole my right to be a mother again," said Dias.
The pressure on her to undergo sterilisation also became social, after the laboratory that found she tested positive for HIV allowed her confidential test results to leak out "in a breach of ethics," and her case began to be discussed around the hospital, she added.
Six years later, she takes six antiretroviral pills a day -- the drugs that delay the onset of full-blown AIDS -- and remains in good health while raising her children, ages six, seven and 11, on her salary as a public employee in the state government.
Dias, who wanted her experience to be of use to others, joined the Network of Positive Citizens, which groups women living with HIV. The Health Ministry's Coordinator of Sexually Transmitted Diseases and AIDS (CETSS) programme trained the members of the network to take part in prevention efforts.
In Brazil's northwestern Amazon jungle region there are many cases of women living with HIV who have been sterilised, said the activist, who heard a number of stories similar to her own as she traversed Roraima and other states in that region in her work as an activist.
The women generally undergo the procedure on a doctor's recommendation, which sounds like an "order" to uninformed, undereducated women, because "he is the authority, someone who is educated," she explained.
But the CETSS defends the right of HIV-positive women to have children.
"It is not up to a health professional to decide whether or not these women can have children. It is their job to offer them all of the elements to allow them to decide for themselves," Katia Souto, in charge of gender issues in CETSS, told IPS.
Brazil's Health Ministry provides antiretroviral medicines free of charge to all HIV/AIDS patients, including pregnant women, who by following a strict treatment plan reduce the risk of passing HIV on to their unborn children by nearly 90 percent.
The virus does not eliminate the right to motherhood, and when only the male partner in a heterosexual couple is infected, in vitro fertilisation procedures allow a woman to have children with no risk of contagion, health professionals have found in Brazil and other countries, said Souto.
She cited the success of a programme in Sorocaba, a southern municipality of 500,000 located 90 kms from Sao Paulo, in reducing the risk of mother-child infection among women living with HIV.
The municipal programme against sexually transmitted diseases and AIDS, which has been in place in Sorocaba since 1998, has reduced mother-child transmission to just two percent, and plans to diminish the risk even further, Dr. José Ricardo Pio Marins, the specialist in infectious diseases who coordinates the programme, commented to IPS.
Without prevention, the risk of mother-child transmission is 20 to 30 percent at birth and an additional 20 percent during breastfeeding.
The risk of mother-child HIV transmission in Sorocaba is now only slightly higher than the risk of congenital malformation in newborns, which is just over one percent, Marins pointed out.
Prevention consists of the administration of antiretroviral drugs to pregnant HIV-carriers, generally starting in the 14th week of pregnancy, cesarean birth before the due date, and the substitution of formula for breast milk, he explained.
Success depends on the early diagnosis of the pregnant woman's HIV-positive status, and her willingness to take the medication, said Marins.
Health professionals often run into resistance to the preventive treatment, and an intense effort, sometimes involving the woman's partner, is frequently necessary to persuade the women to follow the strict drug regimen, he added.
The Sorocaba municipal programme offers women living with HIV a "transparent" health service which informs them of the "advantages, risks and alternatives" needed for responsible decision-making, said Marins.
Simply ignoring the wish of HIV-positive women to remain sexually active and have children "would be a mistake," he argued, while adding that having a child can also encourage the women to take better care of their health and improve their quality of life.
Providing adequate care for pregnant HIV-carriers is increasingly important for prevention, due to the growing "feminisation" of the AIDS epidemic and the rise in the number of cases among teenage girls.
In Sorocaba, some 50 pregnant HIV-carriers are attended every year, and the average age of the patients has gone down since the programme was launched, said Marins. (END/IPS/LA/HE/TRA-SO SW/MO/MP/02)
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