Gajanan Khergamker is an independent editor and legal counsel with more than 30 years of experience. He heads a media-legal think-tank and is interested in public affairs, law and policy. Media-legal, think-tank - he belongs in a Govt of India committee or commission doing nothing, but here he is writing for Newslaundry.
Medical Reportage Page 3-Style
When some mainstream publications across the nation screamed “Found: A cure for HIV” and “HIV baby cured by US docs” on their front pages in the last few days, it smacked of a stark disdain for the accountability and ethics associated with the media, particularly in medical reportage. Predictably, giving substantiated research the convenient slip, the publications “shocked” their readers with their irresponsible reports.
The information these publications didn’t share with readers was that in the United States of America, transmission of HIV from mother to child was rare with only about 200 cases a year or even fewer as infected mothers were generally treated during their pregnancies. Making public this data now would only dilute the sensational value of the news item. So, it seems the Indian press chose to keep readers oblivious of facts that, advertently or otherwise, would nip the enthusiasm of the news of “A cure for HIV”.
According to the news reports, doctors in the US had made medical history by effectively “curing a child born with HIV”. The infant, now two-and-a-half years’ old, needs no medication for HIV; has a normal life expectancy and is highly unlikely to be infectious to others, doctors believe.
Though medical staff and scientists are unclear why the treatment was effective, the surprise success has raised hopes the therapy might ultimately help doctors eradicate the virus among new-borns. Details of the case were unveiled at the Conference on Retroviruses and Opportunistic Infections in Atlanta.
Newspapers back home quite conveniently ignored the fact that since the mid-Nineties, HIV-testing and preventive interventions have resulted in more than a 90 per cent decline in the number of children perinatally infected with HIV in the United States.
There is already a way of preventing these infections using a drug in a way far better than procuring “a functional cure” using a deadly cocktail. The problem was: To ensure the drugs and the medical staff are in the right place at the right time to treat mother or baby or both. Now, in India, that has been the problem and a persistent one.
Mainstream newspapers have failed to detail how, in India, there already exist effective therapies which drastically lower the chances of transmission of the virus from mothers to children, and how drugs used to battle HIV come with potentially toxic side effects. Even UNICEF’s fact-sheet on India’s performance in prevention of transmission of HIV from mother to child with a single drug is very encouraging. This brings into sharp focus the need to justify the toxic effects of the use of three very powerful anti-HIV drugs for infants, particularly when one alone does the job. To worsen matters is the new-fangled need to watch for long-term side-effects of the three drugs individually, and in their interactions with each other while acting as a “functional cure”.
Apart from reporting a “functional cure” as a “cure for HIV”, it’s the treatment of the news item itself which accorded it a finality that was suspect. Besides appearing on the front page of publications, none of them exercised the regulatory “attributions”, examined the risk-benefit ratio associated or provided readers with informed backdrops. They were simply populist and bordered on cheap sensationalisation. The reports failed to pre-empt the inherent risk of people presuming that HIV is now “curable”. These reports also compounded the dangers of HIV-positive persons opting for babies because having babies would be safer and those born with HIV could be “definitely cured” and may lead to a surge in risk in HIV-positive pregnant women defaulting on medications thinking that now HIV in babies is “curable”. Concurrently, there risks a surge in expectation and reality mismatch leading to frustration being vented on doctors and increased attacks on members of the fraternity.
To reduce the federal deficit in the US, automatic spending cuts of $659 million to HIV/AIDS and viral hepatitis programs were on the anvil as the result of “sequestration”. The National Alliance of State and Territorial AIDS Directors (NASTAD), The Foundation for AIDS Research (amfAR) and the National Minority AIDS Council (NMAC) have since long been advocating against budget cuts through sequestration. “Sequestration will undermine everything we’ve done to accomplish the National HIV/AIDS Strategy (NHAS) goals of reducing HIV incidence and death”, has offered Chris Collins, Vice President and Director of Public Policy at amfAR since long. These cuts reportedly amount to an 8.2 per cent reduction in funding for most non-defence discretionary programs based on a calculation using fiscal year 2013 spending levels.
The sequestration quashes crucial medical research and inflicts far-reaching damage. And now, news of the recent “cure” will have very harmful repercussions to the National Institutes of Health which co-funded the study. The National Institutes of Health anyway stands to lose $1.6 billion of its $31 billion budget through September as a result of the sequestration.
The National Institutes of Health, the NIH, in conjunction with the Foundation for AIDS Research, also known as amfAR, paid for the research of the child who was infected with HIV, the virus that causes AIDS. The timing of the HIV cure discovery and sequestration (automatic cuts in federal spending) is perceived as a “cruel irony,” by Chris Collins, vice president of public policy for amfAR who feels, “If we were in the business of ending AIDS, this would be the time to invest, not pull our resources out”.
Incidentally, sequestration risks thwarting crucial medical research. The recent “cure” will concurrently be affected as the National Institutes of Health, which co-funded the study, stands to lose $1.6 billion of its $31 billion budget through September as a result of the sequester. As the largest supporter of biomedical research in the United States, it could slash funding for hundreds of research programs, such as the HIV case. If the timing of the “cure” and the sequestration was “a cruel irony” as Chris Collins puts it, the overwhelmingly slanted media coverage on the “cure” only compounds the situation.
The need here is to get back to basics: Ensure the highest-level of ethics and accountability in media coverage particularly in the case of medical reportage that affects millions of readers directly. In view of news of this nature being compromised and, in the face of editorial independence being corrupted by “paid” coverage, we have a lot to fear and it’s not just from the HIV virus.