KUALA LUMPUR, Feb 18 — A Malaysian couple has accused a private hospital in Johor of discrimination after a paediatrician allegedly refused to treat their newborn because of the father’s HIV status – despite the father being long-term undetectable with the virus.
The father – identified as Adam (pseudonym) – accused KPJ Bandar Maharani Specialist Hospital in Muar of subjecting his wife, mother of their baby boy, to unnecessary testing and intimidation after he disclosed his HIV status.
Adam alleged that a doctor at the private hospital asked invasive questions, threatened to transfer the baby to a government hospital, and called security to intimidate them.
“This distressing experience has deeply troubled us. We felt discriminated against, stigmatised, and marginalised solely due to my HIV status. It’s disheartening to think that, more than 40 years since the HIV pandemic began, such ill-treatment could still occur within a private health care facility, especially due to outdated policies.
“What’s even more troubling is that I was not the patient—my wife and our newborn baby were the ones directly affected,” Adam told CodeBlue in a recent interview he held with his wife, Eve.
‘Panic For No Reason’: Hospital Visit Turns Hostile
Adam and his wife, Eve (pseudonym), a serodiscordant couple—where one partner is HIV-positive and the other is not—went to KPJ Bandar Maharani Specialist Hospital in August 2023 for the birth of their third child.
Adam, 47, has been HIV-positive since 2016, but has maintained an undetectable viral load shortly after starting treatment, meaning he cannot transmit the virus.
A day before the delivery, Adam informed the obstetrician-gynaecologist (OBGYN), Dr Mary (pseudonym), about his HIV status. He later learned that, in his absence, his wife was asked to sign a consent form for a rapid HIV test.
“I was alarmed because the test, which we had to pay for, was unnecessary and outside the testing window,” Adam said.
Eve said the hospital staff’s immediate reaction showed a lack of preparedness. “I feel that when he broke the news, everybody just panicked for no reason. They panicked, and then they had no protocols or precedent to follow,” she said. At the time, she was already in labour.
The couple said the test was redundant, as it was conducted outside the proper testing window and Eve had already undergone HIV screening twice at a government clinic—once during her first visit and again in her last trimester.
Their baby was born the next afternoon. During the evening check-up, consultant paediatrician Dr John (pseudonym) entered their room with a nurse, instructing her to document everything. He questioned Adam about his medical history and warned that if he refused to cooperate, Adam’s baby would be transferred to a government hospital.
Adam said he tried to discuss the basis of Dr John’s concerns, but the paediatrician insisted it was a person living with HIV’s (PLHIV) responsibility to disclose their status to all doctors.
“I couldn’t believe what I just heard,” Adam said. “I questioned him about which rules or regulations supported his claim. That seemed to put him in a rage, and he quickly demanded the nurse call security.”
A guard arrived but did not intervene. Dr John returned with further questions, asking Adam about his last viral load test and whether he took daily medication. Adam said the doctor displayed a poor understanding of HIV treatment.
“Newer treatments like CAB-LA (long-acting cabotegravir) mean patients don’t always take daily medication,” said Adam, adding that he regularly reads medical journals to keep up to date on HIV/AIDS.
CAB-LA is a long-acting injectable form of PrEP, initially administered with two injections four weeks apart, followed by an injection every eight weeks thereafter. Studies show that CAB-LA is highly effective at reducing the risk of HIV infection through sex, making it a more reliable option than daily PrEP pills.
Adam began HIV treatment in April 2016 and initially made frequent trips from Muar to Sungai Buloh Hospital. He maintained that just three months later, follow-up tests confirmed he was undetectable, and he has remained so ever since. (CodeBlue did not review Adam’s medical records.)
He continues to receive regular check-ups at the Medical Outpatient Department (MOPD) at Hospital Pakar Sultanah Fatimah (HPSF), a government hospital in Muar.
Dr John later issued a referral letter for Adam and Eve’s baby to HPSF for further management.
KPJ Says Committed To Patient Confidentiality, Providing ‘Ethical, Professional, And Inclusive Care’
The couple left KPJ with their baby and did not file an official complaint. However, hospital management reached out and invited Adam for a meeting a week later.
Dr Mary and two senior staff members acknowledged the situation could have been handled differently but did not issue a formal apology, commit to policy changes, or take action against Dr John.
When contacted by CodeBlue, KPJ Healthcare confirmed it was aware of the issue and the concerns raised. The private hospital added that in 2023, it engaged with the relevant authorities and councils regarding the matter.
“At KPJ Healthcare, we are committed to patient confidentiality, as well as providing ethical, professional, and inclusive care in line with established medical guidelines. We also regularly review our procedures to uphold the highest standards for our patients.”
MMC Dismisses Complaint: ‘No Further Action’
Adam lodged a complaint against Dr John with the Malaysian Medical Council (MMC) on August 27, 2023, but the council dismissed the case nearly three months later on December 15 without further investigation, citing Regulation 40(2)(a) of the Medical Regulations 2017.
“This decision reflects a systemic failure to address discrimination against PLHIV and uphold ethical medical practices,” Adam said.
In response to CodeBlue’s enquiry, MMC said it regulates medical practitioners through the Code of Professional Conduct 2019 and other guidelines. It cited Section 29(2)(b) of the Medical Act 1971, which grants the MMC disciplinary authority over doctors accused of serious professional misconduct under its code and directives.
“Accordingly, any complaint regarding a registered medical practitioner will be investigated and decided upon appropriately. However, the MMC will not disclose or communicate the grounds or explanation for disciplinary decisions to external parties.”
CodeBlue understands that MMC did not disclose or communicate the reasoning behind its disciplinary decision even to the complainant himself. MMC’s letter to Adam dated December 15, 2023, as sighted by CodeBlue, merely said the Council agreed with a recommendation by Preliminary Investigation Committee 5 that was based on Regulation 40(2)(a) – “no further action shall be taken on the complaint or information received.”
“As such, there will be no further investigation to this medical practitioner,” MMC president Dr Muhammad Radzi Abu Hassan, who is also the Health director-general, wrote to Adam.
Adam’s complaint to MMC, as sighted by CodeBlue, accused Dr John not only of discrimination, but also of disregarding his and his wife’s confidentiality and privacy. “He openly discussed our health information among colleagues without a need-to-know basis and without obtaining our consent.”
‘Worse Than A Criminal’
Adam said the incident had shaken his trust in Malaysia’s health care system. “Over the years, I’ve heard countless stories of how PLHIV are marginalised and stigmatised within Malaysia’s health care system.
“I used to feel awful for those who experienced such treatment. Now, being on the other side, I am living through the same unfair treatment and marginalisation,” he said.
“After enduring too many horrifying experiences in hospital settings, I’ve learned that it’s often better to remain silent than voluntarily disclose my serostatus to health care providers. Despite being long-term undetectable and posing no risk to health care workers, the way I am treated makes me feel worse than a criminal.”
Adam said his family’s experience at KPJ Bandar Maharani Specialist Hospital was not an isolated case, but part of a broader issue of stigma in Malaysia’s health care system.
He recalled a hospital stay at HPSF in 2022, where he was admitted for a perianal abscess, a painful condition requiring surgery. Despite the severity of his condition, Adam said he was left waiting over two days and forced to fast for more than 26 hours before surgery, only to later discover the delay was due to his HIV status.
“Most government hospitals in Malaysia still follow outdated guidelines that prioritise non-blood-borne disease patients over those with conditions like HIV, regardless of urgency. This practice, which is typically reserved for emergency disaster scenarios to protect health care workers and patients due to limited resources, is still in place at HPSF, contrary to the Ministry of Health (MOH) and World Health Organization (WHO) guidelines.
“As a result, I endured unnecessary hours of extreme pain while waiting for my turn in the operating room, a situation no one should have to face,” Adam said.
Adam said he now avoids seeking medical care whenever possible.
“The thought of being admitted to a hospital fills me with dread. However, the reality is that I have no other options. Some private hospitals refuse to admit HIV-positive patients into their operating theatres, leaving me with limited choices. I often try to manage or delay treatment to avoid facing discrimination in hospitals.”
Call For Legal Protection
Adam urged lawmakers to introduce stronger protections for PLHIV and others facing medical discrimination.
“While protocols and guidelines are important, they are not enough. Discrimination persists, and progress has been too slow and insufficient. I urgently call on lawmakers to step in and address this decades-long issue,” he said.
“The government must incorporate into national law instruments that protect the human rights of all persons with disabilities or medical conditions, including the right to work, social security, family life, an adequate standard of living, medical treatment, and education.
“We need laws to protect not only PLHIV but also individuals with disabilities, mental health conditions, substance use disorders, and others who face similar discrimination. So far, the efforts have been too little and too slow.”
To other PLHIV, Adam had a simple message: “Speak up, stand up, and defend your rights. This is not just for you but for others living with HIV, their families, and future generations.
“Everyone deserves the same rights and medical care as anyone else. Do not settle for less because of your medical condition. Say no to bullies—even if they are doctors or medical personnel. Life can be hard sometimes, but seeking help shouldn’t be.”
