It took more than 30 years for The Normal Heart, originally an award winning play, to be turned into a movie this year.

The story, of the onset of the HIV-Aids crisis in New York City in the early 1980s, is about a gay writer who witnesses first-hand the mysterious disease that has begun to claim the lives of many in the gay community and starts to seek answers. He tries to sound the alarm, both in the gay community and among officials, over the outbreak of a so-called gay cancer.

Known for his criticism of political figures, media and medical organisations for their poor response to the AIDS epidemic, the activist writer Larry Kramer, wants people to get a glimpse of those terrible years.

In the 1980s, Kramer was the most strident, scolding voice in New York City on behalf of gay men infected with HIV.

“The gay world did not want to know about this illness — that’s where I got the reputation for being a screamer. It was the only way you could get anyone to pay any attention. It’s a plague!’ he says in an interview with the press recently.

Stigma remains the single most important barrier to public action … — UN Secretary-General Ban Ki Moon

Today, 33 years later, although HIV and Aids are now household terms, the stigma that surrounded HIV and Aids since the beginning of the epidemic is still the same in our part of the world. We are still largely in denial about HIV, and this is a dangerous thing because Aids affects not only the person who contracts it, but can affect entire families, or in some cases entire communities or villages.

As a social worker, I have often interacted with HIV/Aids patients from across the country who would come to my office. The harrowing stories they shared varied from men whose parents shunned them and who were evicted from homes by their families and rejected by their friends and colleagues.

Zubair’s* experience is consistent with that of many whom I met. A 32-year-old from Gujranwala, while seeking a work permit for the Gulf he tested HIV-positive during a mandatory test. “I have been through a lot of pain, both physically and emotionally. I have been cut off from friends for a long time. It is very lonely and depressing.”

It is not ethical (and in many countries illegal) to discriminate and withhold care based on a patient’s HIV status, yet we often see that people with or suspected of having HIV may be turned away from health care services or employment and even refused entry to certain countries, especially in places where non-discriminatory laws are not being implemented.

Although subsequent tests conducted by a reputed private hospital laboratory showed a negative result, the Gulf Board rejected the “HIV-positive” candidate. Sadly, stigma from the flip-flop testing still sticks to him wherever he goes.

It is not ethical (and in many countries illegal) to discriminate and withhold care based on a patient’s HIV status, yet we often see that people with or suspected of having HIV may be turned away from health care services or employment and even refused entry to certain countries, especially in places where non-discriminatory laws are not being implemented.

Riffat, 21, was ill for more than a year after her husband, who worked in the Gulf, left their home in Federally Administered Tribal Area.

Until recently Pakistan was classified as a ‘low prevalence high risk’ country but now Pakistan is in a ‘concentrated phase’ of the epidemic with HIV prevalence of more than five per cent among injecting drug users (IDUs) in at least eight major cities.

“I was HIV positive. That was a u-turn in my life. The nurses and doctors instead of comforting me became scared of coming near me. I was an untouchable for them. Instead of reassuring me they told me ‘there is no life for you’. Finally they wanted me to pack up and leave the hospital but my in-laws wouldn’t take me either. There was only one doctor in the entire hospital who really thought I was a human being and treated me like one. The rest, I feel sorry for all of them. They cannot be called masiha.”

Ramzan, 28, from Khyber Pakhtunkhwa says he came to know about his HIV positive status much later. “Not just me, the whole village came to know about it as my father broke the news to just about everyone.” Since then his life has been one long nightmare. “I don’t care if they treat me like this, but it’s my father, a medical technician who is known and respected as a doctor in our village, who has never come to terms with my being HIV positive.”

According to the information posted on the National Aids Control Programme website, Pakistan is the second largest country in South Asia that stands only a few steps behind India and Nepal in terms of HIV epidemic.

Until recently Pakistan was classified as a ‘low prevalence high risk’ country but now Pakistan is in a ‘concentrated phase’ of the epidemic with HIV prevalence of more than five per cent among injecting drug users (IDUs) in at least eight major cities. According to the latest national HIV estimates there are approximately 97,400 cases of HIV and Aids in Pakistan.

As we marked Dec 1 as World Aids Day and as experts continue to search for a cure, we must understand that fear of discrimination remains an enormous barrier that prevents people from seeking treatment or admitting their HIV status publicly. An enabling environment needs to be created; denial will not make the problem go away.

Coming back to where we started, The Normal Heart is vocal, passionate and emotionally touching. It is a reminder that in this part of the world, there is still work to be done.

** Names changed for privacy*

Published in Dawn, Sunday Magazine, December 7th, 2014