HIV's Unlikely Conspirator

Narayanjot Kaur · #1 (**permalink**) 25-Aug-2009, 10:46 AM

Hiv’s Unlikely Conspirator
If NACO had implemented its HIV testing programme for infants, would hundreds of them be alive? DIVYA GUPTA reports

EVER SINCE she got married in 1997, 32-year old Gurwinder has lost her closest family members at regular intervals of four years. In 1998, she lost her first husband. In 2002, she lost her 3-month old son. In 2006, her second husband passed away and a day later, so did her 3-month-old daughter, Jaspreet. Gurwinder was only aware of her second husband’s HIV status. Like her, it was positive.

Reference:: Sikh Philosophy Network http://www.sikhphilosophy.net/health-and-nutrition/26404-hivs-unlikely-conspirator.html

Surrounded by three other HIV positive women, Gurwinder finally broke down while describing Jaspreet. “She was so beautiful. Even the hospital staff who sometimes treated me badly would say so,” she said. Her candid personal account emboldened the other women. Bindu, 37, started talking of her own infant daughter, born in 2003. As she turned six weeks, Bindu was advised by Din Dayal Upadhyaya Hospital to wait for 18 months before getting her daughter tested for HIV. Unaware of her own HIV positive status until a year later, Bindu breast fed her daughter for one-and-a-half years. She was diagnosed HIV positive when twoand- a-half years old and died in 2006.

That same year, amidst much fanfare, Sonia Gandhi and Bill Clinton inaugurated a paediatric center at the Lady Hardinge Medical College in Delhi as part of an ambitious ‘National Paediatric Initiative’ aimed at preventing parent-tochild transmission of HIV/AIDS and treatment and care for HIV/AIDS patients. It was launched by the National AIDS Control Organization (NACO) – India’s apex body for implementing the country’s HIV/AIDS prevention mandate.

CASE STUDY 1

SUNEETA, 27
JJ Colony, Rohini, Delhi
A housewife, Suneeta found out she was HIV positive in 2007, two years after her husband did. Last week, he took their 5-month-old infant to the paediatric centers at the Ram Manohar Lohia Hospital and the Kalawati Saran Children Hospital to inquire about an HIV DNA PCR test. He was informed it would cost Rs 3,000. In a good month, he barely makes an income of Rs 2,500
Reference:: Sikh Philosophy Network http://www.sikhphilosophy.net/showthread.php?t=26404

CASE STUDY 2

URMILA, 30
Agar Nagar, Nangloi, Delhi
She can’t hear very well, but Urmila, who found out she was HIV positive in 2008, says she heard the hospital staff at Dr Baba Saheb Ambedkar Hospital clearly. “They told me that the test only happens after 18 months.” Her local quack informed Urmila that she can get her 7-month-old baby tested for HIV but it would cost her Rs 3,000. She hasn’t gone back to him since.

PHOTOS: TARUN SEHRAWAT Three years later, NACO still has not tested a single infant under 18 months for HIV, in clear violation of its own ‘National Guidelines on HIV Care for Infants and Children,’ which unambiguously state that the HIV testing of infants below 18 months of age “will be done” using DNA PCR testing. Routinely used HIV tests for infection in infants younger than 2 years born to HIV-positive mothers are of no value because of the presence of maternal antibody to HIV in the mother’s blood. HIV infection can however be reliably diagnosed by a “polymerase chain reaction’ or PCR testing for HIV pro-viral DNA in the children’s lymphocytes also known as a HIV DNA PCR test.
With a budget exceeding Rs 7,000 crore between 2007-2012 and assistance from the Clinton Foundation, UNICEF, WHO and Médecins Sans Frontières (Doctors Without Borders) to roll out of 127 paediatric AIDS treatment centers across the country, how did NACO fail to implement its own guidelines? By NACO’s own estimates, 33,000 newborns get HIV every year from their infected mothers and over 50 percent of these children die within two years. How did NACO then fail to diagnose infants under 18 months for HIV for three years when global experience has clearly demonstrated that mother-to-child transmission of HIV is almost entirely preventable.

With a budget of Rs 7,000 crore, how did NACO fail to implement its own guidelines? IN THE US and Europe, a combination of timely diagnosis of HIV in infants below 18 months, counselling to HIV positive mothers, regular anti-retro viral medication (regarded as the most effective HIV/AIDS treatment worldwide), caesarean births and no breast-feeding resulted in negligible mother-to-child HIV transmission rates. Since 2006, countries across Asia and Africa including South Africa — with the highest AIDS prevalence in the world — have established the infrastructure to enable PCR-based technology for early infant HIV diagnosis using the Roche HIV Amplicor DNA PCR version 1.5 assay — the definitive gold standard for HIV DNA PCR testing which “provides an accurate method for identification of HIV- 1 infection in infants and young children less than 18 months of age and is currently the only assay with extensive validation data in Africa and extensively used in the US and Europe,” according to the Open AIDS Journal. Meanwhile, India is in the same position as Mali, Benin, Senegal and Jamaica on early infant diagnostics – nowhere at all. NACO claims “in the past three years, there were no tests available in the world which were ‘confirmatory’ for children below 18 months of age.” Yet in India’s own backyard, reputed private and public AIDS treatment hospitals are diagnosing infants under 2 years using the DNA PCR test, even if at a cost to the patient. YRG Care Medical Center in Chennai detected the first HIV case in India in 1986. Dr N. Kumaraswamy, Chief Medical Officer at the centre told TEHELKA: “We are using the Roche DNA PCR test. It’s the only method available for testing infants under two years of age for HIV.” The Tamil Nadu-based Dr MGR Medical University is similarly using DNA PCR testing in Namakkal District – a high HIV prevalence area, 305 kms from Chennai. “We are using a home brew method developed by the National Institute of AIDS Research. The results are concordant with the Roche kit, ” said Mini Jacob, senior AIDS researcher at the university.

India is in the same position as Mali, Benin, Senegal and Jamaica on HIV infant diagnostics If accuracy was a concern, then what is the difference between the Roche kit that NACO referred to the National Institute of AIDS Research for validation and the one that the Drug Controller General of India (DCGI) licensed two years later? If availability was an issue, then why didn’t India roll out the ‘home brew method’ for DNA PCR testing developed by the NARI, particularly if its results were “concordant” with the Roche kit? If national validation was a pre-requisite, then why did NARI’s “home brew” not receive DCGI approval itself? If infrastructure was an obstacle, why did we not utilise the “many machines available across the country in both government and private set ups which are compatible with the DNA PCR kit,” to use NACO’s own words? And if price was a limiting factor then why are patients still being quoted Rs 3,000 for a DNA PCR test at the paediatric AIDS treatment centers in government hospitals when Roche India is prepared to offer NACO less than Rs 800 per kit?

The only answers which surface point to ambitious plans gone unacceptably thin, stupefying bureaucratic delays, stark conflicts of interest and a nation’s scientific pride giving way to numbing inaction, even as the clock ticked away on possibly thousands of unsuspecting infants whose deaths were entirely preventable. Scratch the surface and it reveals a negligence of a more sinister kind – the self-appointed guardians of the tiny hearts beating in thousands of wombs across the country simply didn’t care enough to give them a shot at life.

WRITER’S EMAIL
divya@tehelka.com

From Tehelka Magazine, Vol 6, Issue 34, Dated August 29, 2009