By Kevin Keane, Key Correspondent for the Irish Forum for Global Health
I had no idea that the gate I would step through
to finally enter this world
would be the space my brother’s body made. He was
a little taller than me: a young man
but grown, himself by then,
done at twenty-eight, having folded every sheet,
rinsed every glass he would ever rinse under the cold
and running water.
-Extract from ‘The Gate’ by Marie Howe.
Anti-retroviral therapy today can be the difference between a life lived out fully and one cut tragically short. For many, drug developments have come too late or remain inaccessible. Marie Howe’s brother John died from AIDS-related complications in 1989. He was 28. She told Fresh Air’s Terry Gross in a 2011 interview – “When he died, it was a terrible loss to all of us. As you know, as everybody knows, you think, ‘My life is changed so utterly I don’t know how to live it anymore.’ And then you find a way”.A few years after her brother’s death she wrote a collection of poems called ‘What the Living Do’. Words, she says, have the power to save us.
Now, in 2017, the power of the written word is being tested in India. In April, it became the first state in south Asia to pass legislation prohibiting discrimination against the country’s 2.1 million HIV-positive people. The HIV and AIDS (Prevention and Control) bill focused on jobs, housing, education and hospitals. It also banned staff in public places such as restaurants and shops from refusing entry to people living with HIV. Under the new law, central and state governments are obliged to provide for anti-retroviral therapy (ART). “The Government of India is showing bold leadership and commitment to people living with HIV,” said Steve Kraus, Director of the UNAIDS Regional Support Team for Asia and the Pacific. “It will keep individuals, families and communities healthy and productive and ensure that India ends its AIDS epidemic by 2030.” The Indian health minister JP Nadda hailed the bill as historic and promised action “against those who create hatred against HIV patients”.
The bill is not without its critics. There has been opposition to a requirement that all state governments must establish an ombudsman to investigate violations of the new law. Some feel that commitments in the bill do not go far enough. Anjali Gopalan is the founder of the Naz Foundation which works with children affected by HIV in India. She welcomes the law for giving recourse to those who suffer discrimination. She has strong misgivings, however, about a clause in the legislation which promises that the government will provide free treatment and medicines “as far as possible”. “This is a huge loophole which will lead to problems. As to the ombudsman, when state governments implement federal laws, they make their own rules and these can often water down the original law so I’m worried about how this will work out,” she said. Many believe the ombudsman posts will remain unfilled or they will be occupied by those without the correct skillset.
Whilst there have been reported drops in cases of discrimination in India’s cities, hostility towards HIV-positive people remains entrenched among the less-well developed areas. Violence, addiction, poverty, and AIDS afflict many parts of the country that seem to have received nothing from modernity. The question will now be whether the new legislation can actually take hold and spread, to create truly country-wide change.
In India and beyond, how we treat the most vulnerable, the marginalised, the poor, and the sick defines us. Actions and words leave a trail for others to follow. That is what the living do.
Kevin has worked as a public healthcare professional for the past five years. Prior to this he worked in the pharmaceutical industry. He is passionate about global access to healthcare, photography, climbing, and coffee. Kevin lives with his wife in Dublin.
1. Marie Howe in conversation with Terry Gross (Fresh Air podcast) http://www.npr.org/2011/10/20/141502211/poet-marie-howe-on-what-the-living-do-after-loss