Tracking HIV through the eyes of patients.
JUNE 9, 1981. It was work as usual in the Memorial Sloan-Kettering Cancer Center in New York City. The epidemic of unknown origin was just three days old, and Dr Jim Curran, head of the US Centers for Disease Control and Prevention (CDC) venereal disease prevention services was in New York City to see for himself some of the patients affected by diseases previously uncommon in otherwise healthy people.
He was examining the first patient when he was asked by the 36-year-old professional, “What’s going to happen to me?”
Curran loathed the fact that he did not know the answer, but he had no choice. “I have no idea what will happen,” he said.
June 10, 2011. It has been 30 years after the CDC’s first report on this epidemic was published, and the book – And the Band Played On – that tells Curran’s story had been reprinted many times and made into an Emmy-winning movie.
The epidemic, now extensively studied and monitored, has a name: HIV/AIDS. The HIV or AIDS diagnosis that used to be 100% fatal is now a chronic disease that is treatable.
Yet, some challenges still remain. We still do not have a vaccine or a cure. It is still difficult to convince people to consistently practise prevention measures, even when they are as simple as wearing a condom before having sex. Stigma and discrimination still exists, although it has greatly decreased in intensity.
These challenges are all too familiar to Vincent, Nicole, Ah Fatt (not their real names), and Michael, all members of the Kuala Lumpur AIDS Support Society (KLASS) in Malaysia who have agreed to share their experiences to help others learn to live with the virus.
“We would like to share our experiences because we know how comforting it is to have someone who is in the same situation tell us it is going to be okay,” says Michael. “When doctors and nurses tell you the same thing, it is different. Because the first thing that naturally comes to your mind is, ‘How can you understand? You do not have the disease.’”
Diagnosed in 1991: Michael, in his 50’s
As one of the first group of patients who was diagnosed with HIV after the first case was reported in Malaysia in 1986, loneliness had been a long-time companion for Michael in the early days of his diagnosis. “In 1991, the three words – Ngoi Zi Beng (AIDS in Cantonese) – was the equivalent of death. The stigma then was so strong,” he recounts. “The Malaysian Aids Council was not formed yet (the Malaysian AIDS Council was established in 1992), and there was literally nowhere to go for information or support.”
He still remembers the first question he asked his doctor. “I asked him, how long do I have to live?” And he got an answer he did not forget. “This doctor was quite ‘cute’,” he says “What he said was, ‘I do not know how long you have got. For all I know, you could die just by getting hit by a car after you walk out of my clinic’.
“This is a very positive answer, unlike the answer I got from another doctor, who just told me to do whatever I wanted. My first doctor is basically telling me that there is hope, and the second is implying that my time is short.”
After his diagnosis, he struggled to get into college to study counselling. At the same time, he found solace in his religion and tried his best to find out more about his condition.
“In those days, HIV was associated most with drug users. I remember during one of my hospital visits there was this drug user who told me that he was already clean and looking for a place to start again. However, he could not find a place as nobody would give him a chance.
“He asked me if I knew of such a place. But I knew in those days, once your employer knew about your diagnosis, you almost always lost your job,” says Michael.
That request had stuck in his mind throughout college. So, after completing his studies, he set up a shelter home for HIV-positive people. And as there was only one type of medication available then to control the HIV virus, many had died due to AIDS shortly after being diagnosed.
“Between the shelter and the hospital, not one day passed without someone dying. Soon, I found myself helping out at most of these funerals. My doctor called me the ‘undertaker’ for positive people, because when someone died and there was no one there to arrange for their funeral, I was usually the one the hospital called.”
Today, Michael reckons that a lot has changed over the past two decades. There is treatment and support available for those who are willing to reach out. Some medications are available for free in Malaysia and information about HIV and AIDS can be easily found. Funerals are also less frequent because people living with HIV are living longer.
However, there are still challenges. “It is still difficult for us to get medical insurance, and there is still reluctance among businesses when it comes to employing and keeping new staff who are HIV-positive. In many instances, HIV tests are made compulsory for candidates to qualify,” says Michael. Nevertheless, he does not view these challenges as hurdles for people living with HIV (PLHIV) to live happy and successful lives. “I believe the most important thing is that we positive people should stand up and fight for our rights. We cannot change the fact that we have this disease, but we need to live on positively, and well, survive.”
He also believes that instead of complaining about the challenges faced (while living with the virus), PLHIVs should also try and give back to their community by volunteering or giving support to other PLHIVs. Most importantly, he urges PLHIVs to take care of themselves. “There are a lot of organisations in Malaysia that can help you get the information you need. So, seek advice on how to take care of your health, and take your medications on time. The government has already given something (free medications) to us, now we have to ask ourselves, have we given back to society as well?” he says.
Diagnosed in the late 1990s: Vincent
“I was working with my former boss in the 90s, and we would always go out after work to have our ‘happy hour’ with women. But I didn’t know that I was at risk of contracting HIV even when he died of AIDS,” he says.
“My boss was so gaunt and thin when we visited him during his last days. I was still strong and healthy, so it didn’t cross my mind that I would have it one day too.” Vincent continued with his lifestyle even after he got married and became a father. However, in the late 1990s, it was a double blow when he discovered that he had HIV after an operation.
“It was very scary. I read that HIV is a fatal disease, and having seen its effects on my late boss, I was very afraid. I didn’t know anything about it, so I just followed my doctor’s orders to take the medication. That wasn’t easy. I felt nauseated and vomited every time I took them and I had no appetite to eat. I was in quite bad shape.”
Making things worse was his family members’ reaction to him. “At that time, there was still little information. When I ate with my family, although we sat together, I had my own cutlery. Sometimes, even when I sat on another chair, someone would remind me that others may be reluctant to sit there after that.”
To pay for his medications, Vincent had exhausted his savings and even sold his car. “I had no choice but to look for help. Fortunately, at that time there were NGOs like Kuala Lumpur AIDS Support Services. I started to volunteer at hospitals and understand more about HIV. After a few years, the medications I was taking were given free.”
Soon, reality set in and Vincent had to find a job to support his family. “I got a job that paid the bills, but soon I was back to my bad habits again. I gambled, and forgot to take my medications on time. Not too long after that, the first-line medications I was taking failed to work and I needed to go on other drugs that I couldn’t afford.”
This was the turning point for Vincent. “My family and I appealed to the hospital and some charitable organisations to help me partially finance my medical bills, and I have been compliant ever since.”
Now a volunteer at a shelter home, Vincent has this to say to young people out there. “I hope they understand that safe sex is important and it is essential to practise it. Because if you have this disease, and you pass it on to your partner or your child, it is really bad. You child is innocent.”
Diagnosed in 2002: Nicole, in her 30’s
“I first developed symptoms of AIDS in 2002, but I knew even before my HIV test that I would have the disease because my husband had just passed away due to AIDS,” says Nicole.
“But because the medications were very expensive, and the stigma was great, I kept it to myself and got more and more depressed because my mind could only focus on pessimistic thoughts. Somehow, I thought I was going to get arrested just because I have the disease.”
Unable to turn to her family because their relationship had soured over her marriage, Nicole had attempted to take her life before nearly losing it to AIDS. Tears started to appear in her eyes. “At that point, I had no choice but to contact my family again. But I was lucky because they gave me the support I needed to survive.”
Surviving wasn’t easy. At first, staff at a private hospital turned her away because her family revealed her husband’s history and asked them to perform a HIV test. Then, when she was diagnosed, she could not afford the medications she needed to live on.
“That was why I went to a shelter home and stayed for six years, and even went on a TV programme to appeal for funds so that I could afford those medications. Fortunately, shortly after that, the Malaysian government announced that first-line HIV medications were to be given free. That helped a lot,” she smiled.
At the shelter home, Nicole soon got stronger and healthier. She decided to find a job to support herself. However all the jobs that she applied for had a requirement she was reluctant to fulfil: a blood test and medical check-up. “On top of that, as I was not working for a long time, it was quite difficult to get used to it,” she says.
She then went back to the shelter home and offered her services as a caretaker to the people who were staying there. “I stayed there and helped out, and learned to assist PLHIVs like me. I also learned how to help new people feel at home, especially those who just found out that they have the disease, and whose family members were actually willing to pay to send them to shelter homes because they didn’t want to take care of him or her.”
Soon, she found herself joining more and more activities at KLASS as she became more and more optimistic about living with HIV. While she would only reveal her status to those who are close to her, even at KLASS, the fear of being “found out” has lessened. “I think I have become stronger. Now, I am not so scared that people would know about my diagnosis,” she says.
All she wants is for people to understand her. “HIV is not like cancer, where people sympathise with you. They seem to think that you brought the disease upon yourself and deserve it. But it was not my choice. My husband gave the disease to me.”
But to newly diagnosed people, she has one advice: “Seek treatment early. Don’t wait until your immune system is destroyed to seek treatment, because I know from personal experience that it is very difficult to recover after that.”
Diagnosed in 2006: Ah Fatt (in his 40’s)
After living with HIV for five years now, Ah Fatt is a face of optimism when it comes to living with the disease. “I suspected I was infected with HIV long before I found out in 2005, but I was not brave enough to test myself. But I got worse, developed AIDS, and was admitted to the hospital. My doctor examined me and told me about my diagnosis, and asked me whether I wanted my family to know,” says Ah Fatt.
“I decided to tell them because I needed their support. I knew I needed to take my medications, so I thought it was better to let them know so they would be mentally prepared,” he says. Although he initially feared the uncertainties that come with the diagnosis, Ah Fatt was in a better position because more information about the disease was available. “I consider myself luckier because at that time there were many avenues to seek help, information and support,” he says.
He went to stay at a shelter home for PLHIVs so that he could recover and joined KLASS to find out more about his condition. “When I was in the shelter home, I met a lot of people in the same situation and knew that it is not a death sentence. “The point is, people can tell you that repeatedly but nothing beats meeting another PLHIV who has managed to live on well. I mean, look at Michael. He is a living testament that you can live on for 20 years if you get treatment.”
As he listened to Michael, Vincent, and Nicole’s story, he observed that stigma and discrimination has lessened over the past few years. “A lot of people can accept PLHIVs these days. Because they realise that we are not very different from any one of them. If you go to see your doctor for your routine checkup, you can’t even recognise another PLHIV even when you know that this is the place where PLHIVs get their treatment,” he says.
“That is why, if PLHIVs are willing to step out and meet other people in NGOs or support groups, you can find the information and support you need. On top of that, you will finally believe that it is possible to live on when you see others living on well.” To find out more about HIV or KLASS, you can call the KLASS helpline 03-40453686 from Wednesday to Saturday (6.30 - 9.30pm). All calls are private and confidential.
Courtesy of The Star.