PERSONAL STORIES
A Force
In Treating HIV/AIDS

After 25 years, Datuk Dr Christopher Lee is more or less an institution by himself in the world of HIV/AIDS treatment and care. He remains at the forefront of charting the direction of infectious diseases in the country and shows no signs of slowing down.

Dr Lee has chosen to remain in government practice as he says he is able to pursue what he wants instead of dealing with the “bread and butter” issues. He adds that one is also able to work with younger doctors and even though it can get frustrating at times, there are times one hits the jackpot.

“You see them and you get motivated by them. The family of infectious diseases has grown bigger and they are already doing a better job than I ever did before,” he says. “That compensates for all the shortcomings such as money.”

Yet, Dr Lee remembers the days when it was a lonely job in infectious diseases. He was one of five specialists with the MOH treating infectious diseases including HIV/AIDS at the time.

HIV/AIDS did not figure on his radar when he started out as he was thinking of specialising in cardiology. He remembers it started when he was a medical officer in Sarawak in the 1990s, about to be posted back to Peninsular Malaysia after serving three years.

When he returned and was posted to Hospital Kuala Lumpur (HKL), Dr Lee was handed his first HIV case. He was not informed of the patient’s condition.

“I was the new kid on the block. I tried to do my best,” the 57-year-old recalls.

“In the end, when it came to HIV at HKL, the cases were sent to me.”

The University of Malaya graduate then pursued a fellowship in infectious diseases, which included training at the Regional Infectious Diseases Unit, City Hospital in Edinburgh, Scotland. He served as infectious diseases physician at HKL until 2006 and currently heads the infectious diseases unit and department of medicine at Hospital Sungai Buloh.

He is also national advisor for infectious diseases in the MOH.

With his years of experience, Dr Lee also sits on a number of committees including chairing the MOH fellowship training programme for the sub-specialty and the National Infection Control Working Committee and the National HIV/AIDS Treatment Registry.

When it comes to his work with professional societies and NGOs, he is the former President of Malaysian Society of HIV Medicine, former Vice President of MAC and founding President of the Kuala Lumpur AIDS Support Society (KLASS).

Dr Lee was also a Tun Dr Siti Hasmah Award recipient from the MAF in 1998.

“I could’’ve done cardiology. When it comes to HIV/AIDS, there is stigma. But the more I did it, the more motivated I became,” he adds.

“You have to defend the patient’s rights. I didn’t plan this. There was no big ambition.”

Way back when, and now

Earlier on, Dr Lee says HIV/AIDS was a disease that people shunned. A situation that remains until now. “You hear HIV, you run in the opposite direction. But when you go towards the area of danger instead of walking away, it makes you look special even though I’m not,” he adds.

In some ways, Dr Lee feels a connection with those in palliative care as he remembers the time when his patients died at a faster rate compared to today. “It was painful thinking of how many funerals I went to,” he says.

MAC, he says provided those in the field with much-needed comradeship as there were no colleagues per se in those days. There were only medical officers and nurses, who looked to him for guidance.

“In terms of talking about policies and major decisions, and being brave enough to do something new, it was the NGOs, working with MAC,” he says. “I found support there.”

He also remembers being part of the group that got the protocols written out so the medicine assistance scheme could start. It provided much needed financial aid to a group of patients in the days when first line medication was not free and there were no generics available.

“We did it from scratch and the scheme exists till now. We could only help 40 patients. It didn’t change the world, but it started the change,” he says.

The advancement of treatment, he says has helped people living with HIV (PLHIV) live longer to the point he is able to make a running joke with one of his former patients. “I asked him, ‘How long already ah?’ He whispered back, ’25 years’ and shook my hand. And he said ‘see you in another 25’,” he adds.

He emphasises the importance of family support for patients in the care of PLHIV, recalling a patient’s brother helping to pay for medication until the patient got back on his feet again and found a job.

Another poignant memory he has is of a retired 70-plus-year-old mother, who went back to work for her former employer as a ma che (live-in servant). “She told me, ‘I thought I could rest but now I have to take care of my son. What to do?’ It really hits you. There he is looking helpless in the wheelchair and the old lady,” he says.

“These are the stories we should tell. They didn’t change the world but she helped her son. Not every parent would do that.”

Setting up the infectious diseases unit

Dr Lee tells of the time when the then Director-General of Health Tan Sri Dr Abu Bakar Sulaiman wanted to set up an infectious diseases unit. He was among those who help draw up the map. He adds that general medicine was a “whole discipline” rather than infectious diseases being a sub-speciality.

It was also during this time when he gained the reputation of the doctor who would see anybody and was involved with the affected communities.

As the number of patients increased, Ward 54 opened at Hospital Sungai Buloh. Dr Lee says the location was chanced upon during a drive from Kuala Kubu Baru when they passed the National Leprosy Centre near the hospital.

“We went to the place in a beat-up old Volvo. It brought back memories where we had our leprosy posting,” he says. They then approached the relevant authorities to make it happen.

He adds that nobody wanted to volunteer to work there but they nevertheless opened the ward to give a space for patients to recover and get the nursing care. “There were six to seven nurses at the time. They ended up staying until they were transferred out. One stayed one until she retired,” he adds.

Initially, the ward was filled with terminally ill patients and there were some who did not have family members who wanted to take care of them. “It was the motherload,” he adds.

He remembers nurse Azizan, who read the yasin to a dying patient. “Who would do that? Not even the patient’s loved ones. The patient was a stranger,” he says.

There are now Wards 55 and 56 with two infectious diseases clinics and some 8,000 patients to treat. “There is so much to do. So much you want to do,” he says. This includes training of healthcare staff, keeping them motivated and looking at the overall picture for the country’s healthcare system.

Dealing with stigma and discrimination

One case of discrimination that he came across was when there were doctors who were reluctant to perform a lymph node biopsy on a patient. “The case was handed from one doctor to another for more than a week. I scolded them. I ended up doing it myself,” he says.

“Patients deserve respect.”

In turn, patients needed to realise that there were no conspiracy theory but safety protocols that need to be followed.

He also related how his father, although proud of him, was initially reluctant to tell people what he was doing as a doctor. “He just said I was a physician in HKL. Then one Sunday, he told me, ‘Monday, we are having an annual general meeting (at his club). Can you come and give a talk? The idiots are going to Hatyai and not using condoms,” he says.

He is a firm believer that healthcare staff must get enough training when it comes to HIV/AIDS and is quick to credit people in the community such as founder of Faith Helping Centre Michael Chow who have gone beyond the call of duty in caring for PLHIV.

“They have made great sacrifices. What they are doing is special,” he adds.

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