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Grandma Margaret Namitala, 61, says she administers the HIV drugs she got from the pediatrics clinic at Uganda's Mulago Referral Hospital to her grandson Sam accurately on time. She is optimistic that the drugs will certainly change his health status by his second birthday.
Namitala is not alone. Uganda has over two million orphans, most of whose parents died of HIV/AIDS. At least half of these orphans are double orphans — having lost both their parents — and are now being looked after by their grandmothers.
Grandmothers have taken on a big role in caring for HIV orphans in Uganda and other African communities. Health officials, however, argue that these old women cannot administer HIV drugs for the children effectively.
Most of the grandmothers like Namitala do not take the children back to hospital for follow-up on time. They also usually get confused by the dosage of the three types of HIV drugs that are administered using a graduated syringe.
At the age of 13 months, baby Sam Mubiru is one of the 4,000 HIV-positive children accessing HIV drugs at Baylor-PIDC children's clinic in Mulago Referral Hospital. He is also among the 600 children there who are double orphans and thus require assistance from adult caretakers in taking their HIV medications.
Mothers Again
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Dr. Addy Kekitiinwa
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Namitala says she gets confused by the many bottles of drugs she has to give her grandson. Often, when it is time for his drug dose, she is either away in the garden or tending to her cow. Her social movements are also limited as traveling means taking Sam and the drugs with her.
"It is not easy," she lamented. "[Sam] needs to feed well so I have to plant the food we eat and tend to the cow that gives us milk."
Namitala sorrowfully remembers her two sons and daughter who have succumbed to HIV/AIDS in the past six years. With her children, she played her role as a loving, caring mother able to provide for their basic needs. Now with Sam the cycle has started all over again, only this time she is weak and poor, and lacks her dead husband's support.
Many households in Uganda and sub-Saharan Africa are headed by grandmothers with orphans left by parents who succumbed to AIDS. In other instances, the parents die with no surviving relatives, leaving behind child-headed households.
While the grandmothers manage to ensure that food is available for the children, there is the bigger problem of drug administration.
"Most grandmothers cannot pull the syringes to the right doses for the HIV syrups we give the babies. There are different graduations for each syringe and the grannies usually get confused," said Dr. Addy Kekitiinwa, executive director at Baylor PIDC Mulago's children's ward.
Confusion
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Medicines requiring refrigeration are put in pots filled with sand and water to keep them cool.
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HIV syrups are administered to babies using syringes since they cannot swallow the pills. Sam is lucky he will probably celebrate his second birthday, unlike many other babies who are not able to access HIV drugs. Most children respond well to the drugs, but at least half of the HIV-positive babies who cannot access drugs by the second year die.
However, at their age, the grandmothers are not entirely to blame. After diagnosis, the children are given seven bottles of syrups of three combination drugs, and one of them has to be stored under low temperatures or refrigeration.
"At first I used to wait for all the drugs to get finished then I take Sam back to hospital. But these days, although I have been educated about it, I cannot bring him on time when they are finished because I have no transportation," said grandma Namitala.
Some of the syrups administered, such as Niverapine, Lamivudine, and Stavudine, have a low volume and are finished quickly. Zidovudine, on the other hand, has a much bigger volume and takes much longer than the other medications to finish. The infants are only taken back to the hospital for follow-up after all the drugs are finished. This causes problems in dosage since the drugs are finished at different times.
The drug Stavudine offers another angle to the complication, since it has to be kept under refrigeration between 2°C and 8°C (36°F to 46°F). The clinic has made a provision for the patients to put the syrup bottles in a pot.
"We deal with children whose blood levels are low. Most of our clients do not have refrigerators so we have improvised. We tell them to put sand in pots, make it wet and put the bottles inside the pots," said Kekitiinwa.
For the pots to keep the drugs cool though, they have to be checked every week and more water added, or twice a week in hot temperatures. Yet again, the grandmothers forget to check the pots and drug storage is tampered with. They also do not bring the children back for dosage follow-up and changes.
Drug storage and changing children's dosage plays a crucial role in keeping resistance to the drugs at bay. Children's doses of HIV drugs change as they grow up. The doses need to be adjusted to their weight and height at least every three months.
Distressing Dosing
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Thousands of pills are broken down at the clinic to provide smaller doses for the children.
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Kekitiinwa says that for every 10 percent increase in weight, there should be a 10 percent increase in the dosage. The World Health Organization (WHO) recommends administering 10-14 milligrams per kilogram of the weight of a child.
But because most of the children are never brought back on time, the dosage given at the clinic is not accurate. This in turn increases the chances of the children developing resistance to the drugs. Private clinics are being blamed for keeping the babies on the same doses, thus intensifying resistance to HIV drugs among children.
For the older children who can swallow pills, the pediatric clinic in Mulago has to break the pills into smaller parts to obtain the right dose. This also makes administration easier for the younger children who cannot swallow big pills.
The clinic started breaking the pills for their clients when they realized that most of them were being taken care of by elderly caretakers who could not split the pills and that the children had frequent change of caretakers.
The clinic's records show that at least 40 percent of the 4,000 children there are orphans who might have a frequent change of caretakers. Fifteen percent of the children are also double orphans.
It is a tedious job for the 12 clinicians who work at the pediatric clinic to split the pills for 1,900 children who are old enough to swallow them orally. However this number is bound to increase.
Soaring Numbers
In July 2003 there were fewer than 700 children attending the pediatric clinic and accessing HIV drugs. Now, that number is up to 4,000 children. Records at the clinic show that at least 120 children test at the clinic every month. Forty percent of these are diagnosed as HIV-positive.
Kekitiinwa thinks that the HIV rate is very high in the clinic because this is a referral hospital and pediatric HIV treatment is not widespread in Uganda. Most of their clients are babies 6 to 10 weeks old who are brought in for immunization and children brought in by their mothers for postnatal follow-up.
However, Kekitiinwa says there are other reasons. One of them is that pediatrics HIV has been ignored for a long time because the clients affected are young and fewer than the adults. An estimated 2.1 million children in sub-Saharan Africa are HIV-positive compared to 25 million adults. Specialized tests are needed to determine their status and their drugs cost thrice as much as those for adults.
The hospital takes on children between 6 weeks and 18 years and is in partnership with the Baylor International Pediatric AIDS Initiative (BIPAI). The programs are sponsored by the President's Emergency Plan for AIDS Relief (PEPFAR) and the Infectious Disease Institute (IDI).
Namitala talked of a world changed from the days when her own children were growing up. "Then, food was available and the cost of living was more affordable."
"It is not easy to become a mother again," she said sadly. "The responsibility we shoulder is too big and society is not very kind to the children sometimes, but we are expected to play the mother role perfectly again."
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