"My Family Didn't Want To Talk About It. I Was Given Separate Utensils"

"Only the light of knowledge about HIV and AIDS can rid us from the darkness of fear, misconception and pain."

Since 1988, every year December 1 is observed as World AIDS Day. It tries to raise awareness around AIDS which is caused by the spread of HIV infection and mourns those who have died fighting this deadly disease. Today, we talk about Moyazzam Hossain, an HIV positive hero.

It all started when Moyazzam, reached Mumbai with his visa and passport ready, excited to join his uncle and live his middle-eastern dream, the only thing that was coming in between was a customary blood test. That's when his dream came crashing down, he came to know he had a disease which he had never heard before.

They came back and told me I can't go. They handed me a piece of paper with a big red stamp that read 'HIV positive -Moyazzam to EdexLive

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The knowledge about it was so scarce and fear- so rampant, that not were willing to help him understand what he had and the seriousness of the situation. All he got to know was that the there was no treatment to this irreversible disease and death was certain.

Like any person who has been diagnosed with a life threatening disease, he tried everything under the sun hoping, almost praying for it to work, from ayurvedic medicines from Babas to filling himself with vitamins hoping to build immunity to viruses, but nothing seemed to work. He finally gave up a year later and headed home, but the fear of the inevitable haunted him day and night. Though his family and friends were supportive, still the guilt and shame forced him to cut himself from the society.

Back home everyone was depressed that this had happened to me but no one really spoke about it. I sort of separated myself from the rest. I also had separate utensils. - Moyazzam 

In 2006, hopes soon rekindled when he started attending counselling sessions by an NGO and a local organization, here he met an old friend who was also positive.

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We made new acquaintances as well. The program officers told us what to do what not to and also organized regular check-ups, they told me I did not need the medication then and only if my CD4 count drops below 200 they will start me on Antiretroviral Therapy (ART).

Remembering the harrowing experience he had to go through because of the lack of knowledge and information on this dreaded disease, Moyazzam and six others formed a group for people who like them are battling this diseases day in and day out. They would meet at regular intervals to discuss problems they are facing and would try to jointly come up with solutions. The number of members since has increased to 750.

The meetings gave us the confidence that this is just a disease and we cannot let it decide how we lead our lives.

But as he feared all along his CD4 dropped to 130.

They started the medicines. The side effects were horrifying — I was vomiting all the time, couldn't eat anything and this continued for over a year. But I never gave up working for the people. We would visit them no matter how far they lived.

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In the meantime, in 2008 health department of the state proposed a project as part of the HIV eradication program, in spite of ill-health Moyazzam and his group took it up.

We did not have the skills required but we had the passion to work for those who have the same disease but are not getting proper care or the information required, we came in touch with SAATHI, an NGO which works with positive individuals, for a coalition based advocacy programme across the state. They gave us leadership and organizational development training.

As a community health coordinator and even in his own group, Moyazzam stresses that in order to live fulfilling lives people should follow the strict regime as prescribed by the doctors.

This has become a major part of the system now but back then no one paid much attention to such detail. 

Overall, India’s HIV epidemic is slowing down. Between 2010 and 2017 new infections declined by 27% and AIDS-related deaths more than halved, falling by 56%. But Moyazzam feels that proper education on AIDS and HIV is yet to reach interiors of this nation.

We want to reach people even in the interiors. But that won't be possible if the government does not give us aid or funds of any kind. We have also arranged for bus passes for positive individuals which do not reveal they are HIV positive rather is just a free pass. Initiatives like these can also help.

Moyazzam feels if the government gives the necessary boost to the positive people network who works towards educating people who have been too struggling with the disease then HIV can be eradicated or at the least restricted by 2030.

Picture Source: Facebook and EdexLive

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