It was by chance that I had been assigned to the CDC in the mid-90s. I wasn’t sure what to expect because we were never taught about HIV in school. I remember buying a book about it before I started – it’s still in my home – but really, most of the learning happens on the job itself.

In the past, there was a certain hush-hush when it came to HIV. People discussed the cases behind closed doors, so naturally I was curious. However, when I started coming face-to-face and conversing with the patients, I realised they are just like anyone of us.

Their suffering at the time was cruel. There were only two medicines. They were expensive, not very effective and came with a lot of side effects. I saw many patients dying at the time, so you could say I was doing quite a lot of palliative care work then.

Over the years, accessibility and quality of medical treatment have improved tremendously. Even then, HIV is an illness that affects you for the rest of your life. Unlike many other illnesses, it can’t be cured but is manageable. The physical suffering has been minimised now for a patient, however the psychological suffering can continue on for a long time due to societal stigma and discrimination.

When I started working at CDC, I went to the ward, speaking to patients with HIV, regardless of whether they were referred to me or not. I wanted to understand their point of view, how they came to develop HIV, and how the illness is affecting them emotionally, physically and financially.

Sometimes, I would spend an entire afternoon just speaking with the patients. It was, and still is, heavy, listening to everyone’s struggles. But it became clear to me very early on that patients with HIV needed to have someone to talk to. Sometimes, aside from us, no one else knew of their diagnosis.

This was why I insisted that doctors refer all newly diagnosed patients with HIV to me even though I was the only Medical Social Worker at the CDC from 1995 to 1997. I requested CDC to implement a blanket referral system where all patients who are newly diagnosed with HIV are to be assigned a Medical Social Worker from the start of their diagnosis. The blanket referral system resulted in more work for sure, but this was work that had to be done. Today, that system continues.

Over the years, working with patients with HIV has opened up my eyes to so many issues such as inequality and homelessness that often accompany the cases. I’ve also gained a much better understanding of people who have HIV. Where there might have been judgement before, there’s now empathy and respect for every individual who comes through our doors.

I became a Medical Social Worker to help others, but instead, I think I have been enriched because of how my worldview has expanded. While painful at times, I truly believe I have found the best job for me.

​Our goals are aligned. We, the medical social workers, doctors and nurses, simply want patients to stay on treatment and work with them throughout their healthcare journey.

Conditions were not the best in the early days. In addition to the physical discomfort, patients bore with the warm and humid ward conditions at the CDC. I saw nurses who carefully tended to a patient down with toxic epidermal necrolysis (TEN) , a severe skin reaction linked to certain medications, and helped him recover. We would also buy our patients their favourite food because many of them were skinny.

Despite the uncomfortable conditions, we tried our best. And even today, we keep each other updated of patients’ conditions.

One of my most memorable cases is of a young boy who contracted HIV from his mother through perinatal transmission. He had been in care for more than 10 years, starting at KK Women’s and Children’s Hospital before being transferred to the CDC.

For the longest time, he was difficult to manage in the ward. He would scream at the healthcare workers and refused to take blood tests and his medicines. Because of that, he remained sick for a while and kept returning to the hospital.

Despite all of that, the doctors and the rest of us didn’t give up. We gave him everything he wanted. I would get his favourite Old Chang Kee snacks every time I knew he was here in the ward.

A couple of years ago, we had a turning point. He started adhering to his medicines and his condition gradually improved. His weight increased. In the past, he often had to interrupt school for treatment. Today, he’s studying in a tertiary institution. We recently threw a surprise birthday party for him at NCID. It was the first time he was well and out of the hospital on his birthday.

This case reinforces the value of perseverance. After all, if we healthcare workers give up on patients, what chance do they have?

And because the HIV journey is a lifelong one, I make it a point to keep in touch with my patients every now and then to make sure they continue with their treatment. It is also to send the message that we are always here for them.

The Patient Care Centre (PCC) in CDC also gave patients with HIV a place to gather and find comfort as a community, together with us healthcare workers. Even though the PCC has since moved to our new location in NCID and is now known as NCID Cares, our team spirit continues and this will always be a welcoming space for one and all.

​We’ve always done our best for our patients with HIV.

One of the biggest changes we managed to push for was increasing accessibility to and lowering the cost of HIV medicines. The doctors and medical social workers teamed up to push for this change and this made a huge difference to survival rates of patients with HIV over the years.

What was close to heart for me was helping homeless patients with HIV get a roof over their heads at nursing homes. In the past, there were no establishment, not even shelters, that would take them in. Once they were discharged from the CDC, some of them who had been rejected by their families, had to sleep in open areas. How could we allow them to be homeless when they were sick?

Eventually, we made headway with the nursing homes. After reading an article in the newspaper, the Catholic Welfare Services approached me and asked if they could set up a place for homeless patients with HIV. This was how the Catholic AIDS Response Effort (CARE) housing came about.

For a long time, we have also worked with the Singapore National Employers Federation (SNEF) to conduct outreach programmes to educate business owners and workplaces to remove long-held misconceptions about working with individuals with HIV.

It was also important to us to help patients get back on their feet. The Red Ribbon Project, which we started in 1999 at the Patient Care Centre (now NCID Cares), provides patients with life skills and a stipend for making and selling handicrafts or performing administrative duties there.

CDC has always been a safe space for patients with HIV to be themselves and make friends. Many have found comfort and solidarity through micro-communities like our Women’s Support Group and Agape Support Group.

In particular, Agape has been extremely popular. A patient actually thought of the name ‘Agape’ – it means universal love. People gather to paint, attend different workshops and discuss issues like drug use and relationships. When patients come together in these groups, they feel accepted and less alone.

We also feel heartened by our robust volunteer programme. In the 90s, the only volunteers we had were a handful of Catholic nuns. Today, we have a strong group of volunteers who come to befriend patients in the wards or contribute their skills and knowledge where they can. For example, we even have a volunteer who is an insurance agent who can advise patients on financial matters.

Our volunteers come from all walks of life. To have our patients gain acceptance from these members of the public is the most important benefit that comes from the programme.

While it’s difficult to quantify the success of these programmes, we know we’re doing something right when patients are able to move on with their lives. Some go on to get married and have children. Some have even become grandparents. I just think “wow” and feel thankful for their amazing progress.

Few diseases are as stigmatised as HIV. I have a patient with both HIV and mental illness. He’s happy to share how he has overcome depression but he will never mention his other diagnosis, HIV. And while you can see patients with mental health issues talking about it on television, you can’t say the same about people living with HIV.

It doesn’t help that HIV is widely misunderstood. Some people still think HIV can be transmitted by mosquitoes. Employers assume that patients with HIV are a liability because they tend to take more medical leave.

Some of my patients don’t dare to hug young children as they call it the “dirty disease”. And more heartbreakingly, some blame themselves for getting HIV, even if they had gotten it from their one and only sexual partner.

Thanks to advances in medical treatment, it’s now easy to get patients back to good physical health. Emotionally however, the pain and fear persist, sometimes even after decades following the diagnosis.

The fact is that with current medicines that suppress the virus, HIV can’t even be spread through sexual contact. Why then, should we condemn patients to a lifetime of shame?

No one wants to be labelled a HIV sufferer. Like you and me, they are fathers, mothers, sons, daughters and competent employees at the workplace. There is much more to these patients than their diagnosis.

Instead of casting a judgemental eye on patients with HIV, everyone should recognise that we are not perfect beings. And there is so much room for society to be more inclusive.

I truly hope that we can see everybody as part of our community and support and work with each other. As I embark on more research work in the near future, I aspire to generate studies that can help shift public perception of HIV.

And perhaps one day, patients with HIV can safely share their diagnosis with everyone without fear of being judged or the repercussions of doing so.