I went to Niloufer Children's Hospital today, saw the ART Centre, and spoke to the superintendent. It was a different experience for me, being an internist, but one that definitely made me think a bit.
Niloufer is a government hospital, much like Osmania General Hospital and Gandhi Hospital here in Hyderabad. It is fairly close to NIMS, but not really connected to a main road, like the other hospitals are. It turns out the my wife's uncle was the superintendent (the equivalent of a Chief of Staff at a US hospital) of Niloufer in the 1980s. The outer gate is guarded half-heartedly by a man who offered little resistance as Dr. Lakshmi and I pushed through. The inner gate, representing the main entrance to the main building, was guarded more vigorously. Yet, we were able to pass with no problems and perhaps a 10 second delay. Most of the delay was related to negotiating past the mass of humanity that was trying to gain entry.
Once in, we proceeded to the lab, where we learned that the person with whom Dr. Lakshmi wanted to meet was still off site. We were offered the chance to go to the ART Centre, to which we agreed readily, and were led outside, again past the throngs (where a gipsy-like lady was being manhandled by the security guard for trying to get through. As an aside, it is still not clear to me why people were not allowed to pass. It seemed that they were there to visit a sick, pediatric relative. Anyway.) On our way out, I caught a glimpse of a sick infant in the TB area; a fairly effective reminder as to why I did not go into pediatrics. I was bad enough with the concept of sick kids before I became a father. Now it is even harder for me to see them.
We went to an adjacent building and climbed a flight of stairs to the "first" floor. At the top of the stairs was a long hallway going off to either side. Just in front of us was a door leading to the ART Centre. In stark contrast to the rest of the hallway, painted in the usual pale yellow I have grown accustomed to seeing in Indian hospitals, there was a painting of Baloo, Mowgli, and other Jungle Book characters. It was a nice touch, and a bit unexpected for me, I admit.
Upon entering, we met the junior medical officer, who led us to her office/exam area. I launched into my introduction, explaining that I am an HIV specialist from the States and that I am interested in learning about HIV care in AP. As the doctor began to describe the center, the power went out. She continued to speak for another two minutes, in near total darkness, before suggesting that we adjourn to the naturally lit hallway outside the pharmacy. After giving me the background on the Niloufer ART Centre, she gave me a tour of the pharmacy (an adjoining room with one shelf) and we chatted a bit more informally about HIV care, research, and the like.
Niloufer just opened their ART Centre two months ago. They have 29 patients registered there (all, by definition of eligibility less than 15 years of age); 21 on co-trimoxazole alone and 8 on antiretroviral therapy. CD4 cell percentages are used in the toddlers to determine who needs ART, as one would expect. For the kids over 4 years old, a CD4 cell count of 200 is the threshold, as it is in all ART centres in India for persons age 15 years and older. Kids on ART are seen monthly, given medications in one month supplies, and have CD4 cell monitoring, along with CBC and chemistries, every 6 months. The kids that are not yet on ART are seen twice a year. The patient population is the poorest of the poor (nobody with any money would go to a government hospital in India) and all live on less than US$1/day. About half the kids are urban, from Hyderabad, and half rural. Although the rural kids are usually from surrounding areas, there are occasionally families that come from remote parts of the state because they do not want to be seen in their towns going to an HIV clinic. Apparently, some 8 years ago, almost all the cases were in Hindu families, but this disparity no longer exists. Half the kids at the Niloufer ART Centre are Muslim, mirroring the population of Hyderabad itself.
The clinic provides first line regimens in the form of fixed-dose combinations (FDC). There are three different FDCs of stavudine/lamivudine, with or without nevirapine. Zidovudine/lamivudine is available for non-anemic children and efarienz is available as a suspension. Viral loads are not measured; treatment success is measured only by CD4 numbers. This means that virological failure probably happens months before clinical failure is apparent. While this would be considered a disaster in my practice, it is really not that bad here, when one considers that there are no second line regimens available. Failing first-line therapy means hospice care for these kids.
The JMO is not convinced that adherence is very good. Some of the families have asked her to give their child (actually, not their own offspring, since the majority of the 8 kids on ART are orphans) a pill to [kill] them. So adherence is probably not a big priority for some of these families at home. Overall, there are about 373 kids in Hyderabad on ART, spread out between this facility, Osmania, Gandhi, and the Chest Hospital. It is anticipated that many of these children will eventually get their care from Niloufer, once things are up and running.
Data on pediatric HIV in India are lacking. A place like Niloufer could contribute a lot to our understanding of the pediatric epidemic here. The overseeing authority is the Andhra Pradesh State AIDS Control Society (APSACS), so any outcomes work would probably have to go through them.