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Frerichs, R.R. Responding to NACO insensitive to "right to life" of children.

SEA-AIDS Network, Nov. 19, 1998.

Posted in response to:

SEA-AIDS, November 12, 1998

From I. S. Gilada, India

While, HIV continues to hit India "below the belt" pushing us in the third phase, affecting a large number of housewives -- more than 1.5% in Mumbai and 0.5% in rest of India. Perinatal transmission contributes little in the gross HIV infections, but the incidence of paediatric AIDS is increasing.

India has some activists for the cause of trees, animals and human rights but there is dearth of "Child-Rights" activists, as the foetus does not even cry and continues to be a neglected lot. In a country ridden with poverty, illiteracy, double standards and multiple scandals, poor health care seeking behaviour and limited medico-social support to women, it is an uphill task to provide "positive health" to women and prevention of HIV is a major challenge. IHO-Wadia intervention model to reduce the impact of perinatal transmission is a beginning to pursue "Right to AIDS-Free Life" for infants. To prevent perinatal HIV transmission is our prime responsibility, come-what-may! 

The National AIDS Control Organisation (NACO); which is the single responsible body in preventing millions of children being infected with HIV in due course is not only insensitive and callous in this regard, but has been raking unnecessary controversy by planning the "AZT Trial on Pregnant Women." Spending millions and wasting time on re-inventing the wheel on the time-tested modality which has been proved for reducing mother to child HIV transmission from 50 to 95% with different models, will surely put annually some 100,000 children to risk of HIV. While the NACO delegations have gone to USA, Uganda and Thailand to look at those models, they did not bother to see IHO-Wadia model. The two important conferences on "Prevention of Perinatal HIV Transmission" in last two weeks one at Mumbai on October 30-31 and at Chennai on November 6-7, had no representation from NACO.

Crusading against AIDS against all odds for 13 years and on evaluating multi-pronged approaches from street-corner meetings to the World Congress, IHO has been spearheading the community mobilisation against AIDS. Safe-Motherhood project was initiated in 1992 as a collaborative effort of IHO and Wadia Hospital, without any official support but with a clear foresight and fullest community mobilisation better nutrition, treatment with ACTG-O76 and avoiding future pregnancies.

Thorough education of all ANC attendees at a large Women's Hospital using effective tools:

  1. pre-test counselling in groups of 10-15 followed by a system of negative consent;

  2. sequential, systematised HIV screening of almost 12,000 women each year;

  3. ELISA test by "pooling", identify infected one, retest positive woman and encourage spouse testing;

  4. seropositives with less than 20 weeks gestation given choice to decide fate of pregnancy;

  5. seropositives with gestation beyond 20 weeks given choice of modified ACTG-076 protocol: ZDV 400 mg/day x 8 wk to mother, 10mg/kg x 6 wk to infants; Caesarian Section, Modified BF; and

  6. children are followed quarterly till 18 months and tested for HIV at 9 and 18 months

In all only six women went for second and two for third pregnancy, rest opted barrier contraception. None committed suicide and only 3 opted for divorce. The largest, innovative, cost-efficient and replicable model of perinatal HIV intervention for busy hospital settings in Asia has emerged.

It has now been replicated elsewhere. In orthodox society to achieve behaviour modification is hard; for which one needs knowledge of local customs, beliefs, languages, experience and practices. For evolving cost-effective, socially acceptable, harm-minimisation strategy, we need sensitisation and aggressive promotion. ZDV given to infected women in low doses commensurate to average weight for a shorter duration has been equally efficient in preventing perinatal transmission. Due care should be taken as regards selection, drug resistance, toxicity, orphans, cost, counselling/care, discrimination, option of MTP, patients on ART, expensive tests, management of other diseases and ethical issues.

Dr. I. S. Gilada, Secretary General

Indian Health Organisation(NGO); Municipal School Bldg,J.J.Hospital Compd,

Mumbai-400008, India

R.R. Frerichs Posting

How refreshing it was to read Dr. Gilada's posting of November 12 on SEA-AIDS and learn of his experience with reducing mother-to-child HIV transmission at Wadia Hospital (described as a larger women's hospital) in India, which began six years ago. You stressed among other issues that programs like yours need to consider costs and must be practical if they are going to reach many people. Specifically, you mentioned several key components that I would like to reiterate and address (my comments follow each point).

1) [the program was started] without any official support with clear foresight and fullest community mobilization.

It is encouraging to see what a non-governmental organization (NGO) can do on its own, even when government support is not yet forthcoming. Such independence leads to greater experimentation, which may not occur if the government intrudes too early, especially in these changing times. While government agencies debate what needs to be done next, you have moved forward and now have something useful to share with others.

2) Pre-test counseling in groups of 10-15 followed by a system of negative consent. HIV screening of almost 12,000 women each year.

I gather by "negative consent" that you mean they have the option of not continuing with the testing process, but must say so. Others would refer to this as routine testing, similar to routine measuring of blood pressure, anemia and the like. You recognize that individual pretest counseling is expensive when faced with the task of screening 12,000 women per year. Thus you have come up with a working alternative that greatly reduces the cost, and perhaps is sufficiently effective at informing the women of what is to come.

3) ELISA test by "pooling," identifying infected individuals, and retesting positive woman

Assembling the blood in pools so that one ELISA is done for a batch of 5-10 specimens is an important cost savings, especially useful when the prevalence is low. If the pool or batch is positive, then the individual specimens making up the pool are tested separately to find out who is or is not infected. UNAIDS and others have been recommending such pooling for a long time, and it is nice to see that progressive groups like yours have adopted this procedure.

4) Encourage spouse testing

This important step is often overlooked in pregnant women testing programs, as if husbands do not exist or are unimportant. Programs that test and educate pregnant women offer good opportunities to also test husbands, vital if the disease is to be discovered and addressed. By ignoring spouse testing, health programs give out the message that couples cannot be trusted to share such intimate matters with each other. We need to overcome such attitudes if the barriers to testing are to be eliminated, as you apparently are successfully doing.

5) Seropositives with less than 20 weeks gestation are given the choice of deciding the fate of their pregnancy

In the early stages of pregnancy, you are sharing the information with the women and encouraging them to decide for themselves if they want or do not want to have an abortion. Thus it is the woman that chooses, rather than the medical care provider.

6) Seropositives with gestation beyond 20 weeks are given the choice of a modified ACTG-076 protocolzidovudine (AZT) 400 mg/day x 8 wk to mother, 10mg/kg x 6 wk to infants; caesarian section, modified breast-feeding

Based on recent research findings in the New England J of Medicine (339 (20), November 12, 1998), even lower doses of AZT seem to be effective, adding further flexibility and options to your treatment recommendations.

Finally, you stated that most of the HIV infected women opted for barrier contraceptives and that only a handful again became pregnant. Furthermore you pointed out in your setting that no one committed suicide and all but three (who were divorced) kept their families in tact.

Perhaps others in Asia have similar practical experiences that address the important issues of cost and effectiveness of programs aimed at reducing mother-to-child transmission. If so, please share them with us.