TREAT Asia Pediatric Site Profile: Hospital Raja Perempuan Zainab II, Kota Bharu, Malaysia

July 2008—As a pediatrician treating children with HIV at Malaysia’s Hospital Raja Perempuan Zainab II, Dr. Nik Khairulddin Nik Yusoff has witnessed the transformation of HIV/AIDS from a death sentence to a largely manageable illness. The life expectancy of his HIV-positive patients has increased thanks to the availability of free highly active antiretroviral therapy (HAART), and the number of new infections in children has dropped dramatically over the last decade as a result of government programs to prevent mother-to-child transmission.

But these medical triumphs are only part of a complex picture. The young patients Dr. Nik sees still face a host of challenges, including poverty, family instability, stigma and discrimination, and resistance to first-line antiretroviral (ARV) drugs. “The majority of these children come from unstable families with poor socioeconomic backgrounds,” Dr. Nik explained. “Their diagnosis is usually kept a secret by their parents. Nearly all the children of school age are at school; however, the schools are not usually informed of their diagnosis because discrimination and stigma still occur.”

Kota Bharu, where the hospital is located, is the capital of the state of Kelantan in northeastern Malaysia, close to the Thai border. Kelantan had the second highest number of new HIV infections in the country in 2007, largely the result of injection drug use. The path of HIV in this area usually starts with infected men who pass the virus on to their wives, who in turn transmit it to their children. According to Dr. Nik, the hospital—a TREAT Asia pediatric site—sees about 90 percent of all the pediatric HIV/AIDS cases in the state and is currently treating 110 children between the ages of 3 months and 16 years, 65 of whom are on HAART.

Dr. Nik, deputy head of pediatrics and a consultant pediatrician who has worked at the clinic since 1992, said that the first case of pediatric HIV/AIDS at the hospital was diagnosed in 1994. “During the initial years, these children were repeatedly admitted to the ward with opportunistic infections and died at a very young age,” he said.

In 1998, the Malaysian Ministry of Health implemented a program at government healthcare facilities to prevent mother-to-child transmission, which includes antenatal screening, the use of ARVs to prevent transmission, elective caesarean sections, and six months of free infant formula to replace breastfeeding. The program has led to a significant drop in the number of children with HIV, as Dr. Nik has witnessed firsthand. “We are now seeing fewer new cases and detecting them earlier when children are still asymptomatic,” he said. “On average now we are seeing five to seven new cases per year, compared with roughly 15 to 20 cases before.”

Another important development has been a reduction in the number of patients who abandon treatment, from more than half five years ago to less than 10 percent today. Dr. Nik attributes the higher retention rate to the expanded services the clinic is now able to offer, which include free HAART for all HIV-positive children, free infant formula, easy access to the clinic through drop-in visits, free CD4 and viral load monitoring, family counseling, and referrals for financial and social support by the hospital’s patient welfare unit.

The pediatric clinic is staffed by four to six doctors and 10 full-time nursing and paramedical personnel. The HIV clinic, which is open each Wednesday, sees 15 to 20 patients per week. Although they do not have enough staff to make home visits, Dr. Nik and his colleagues provide counseling during patient visits and arrange for medications to be delivered to other districts in the state when patients live too far away to travel to the hospital. In addition, they work closely with local NGOs that can provide support for families.

Providing support and counseling to a family can be crucial to a child’s treatment, as one girl’s story shows. Now four years old, she has been Dr. Nik’s patient since she was born. Upon learning of her diagnosis at birth, her father refused treatment despite repeated counseling. “He grudgingly brought his daughter to our clinic three weeks later for review,” said Dr. Nik. Although the girl was already showing signs of infection, her father continued to refuse further blood testing, though he did allow doctors to begin treatment. “At subsequent visits, the father became more and more receptive and began to be involved in her treatment,” Dr. Nik continued. “We started her on HAART at the age of two months and she responded very well. Her viral load has remained undetectable for the last three years.”

While many of the children and their families face stigma and discrimination, the problem is particularly acute among orphans, many of whom are rejected even by family members. According to Dr. Nik, 50 percent of his HIV-positive patients have lost at least one parent; of these, half have lost both. In some cases, their guardians are unable or unwilling to take responsibility for their treatment and follow-up at the clinic. In addition, none of the local orphanages accepts HIV-positive children. However, one NGO, which provides support for single mothers with HIV and their children, has recently begun to provide full-time care for orphans at its center.

While increased access to treatment and services has greatly improved the lives of many of the clinic’s patients, much more remains to be done. Dr. Nik would like to see “a greater variety of HAART medications made available, a wider choice of drugs to use as second-line treatments and beyond.” Dr. Nik also hopes to expand the clinic’s staff to provide more counseling and home visits to assess adherence, and to form closer relationships with NGOs in order to help orphans and other vulnerable children. After more than a decade of caring for children with HIV, he knows that helping them reach adulthood successfully will require something more than just medical treatment—a commitment by families, communities, and leaders to end stigma and give them the support they need to grow and flourish.