Peter closed the door and sat down at his desk. Most days were good days, working at Baylor Clinic in Kampala. He felt that he could really make a difference in the lives of the young adults and children who came to the pediatric HIV clinic. As a nurse his job was quite diverse, from counting pills and working in the reception to handling difficult cases. Today was a day for the latter. He felt good about the two first patients he had seen, but this last one caused him some headache. Eleven-year old Florence had come to the clinic together with her grandmother. Florence had been coming to the clinic for nine years already and to start with it had been quite an ordinary case. Even if the HIV positive status of Florence had been discovered late, she was introduced on ART without any major problems. Her mother, who had also discovered her status at that time had taken it seemingly well and had made good efforts in giving her daughter the needed drugs.
Some 12 months ago, things however started to deteriorate. Florence’s mother got ill and quickly lost weight, showing symptoms of AIDS. Six months later she was dead. It turned out that she had not been taking her ART after all. Peter remembered that he was quite shocked to hear about the death of Florence’s mother, he had always perceived her as someone who took responsibility and kept things in order. Apparently she had only seen to it that her daughter got her medication, but neglected her own.
Today was the second time Peter had seen Florence since her mother passed away. It was the first time he had met her grandmother, last time she had been accompanied by her aunt. Today’s pill count was not good, showing an adherence of only 75%. Three months ago when the aunt had collected the refill the adherence had been better, 87%. Florence was however just as happy to see Peter as she always had been. There were no signs telling that her health was secretly getting worse. The lab test today showed a CD4 count of only 128 and the viral load was up.
Peter had discussed the lab tests with the grandmother, expressing his fears that the virus was developing resistance to the first line drugs. The grandmother explained that since the death of her mother Florence was staying some time with her and sometimes with her aunt, whoever was available, and that it was difficult to remember to give the girl her medication every day. They were also in the middle of a process of trying to get Florence’s father to take his responsibility and take her to his home. The father refused and claimed that his new wife would never allow him to bring another child to their home.
Peter had today also once again tried to
bring up the issue of disclosure to the girl about her status. Florence’s
mother had always wanted to wait to tell the girl about HIV and why she had to
take the pills every day. The grandmother also refused today, saying that it
was better to wait, and that she did not want to do that. It should be the
responsibility of the father, the grandmother had stated. “He must take his responsibility for the mess he has made. And that
awful woman he is living with now, just look at her! Complaining that the girl
is nothing of her concern. But the father must take the girl now, and he should
tell her about her status, not me!
Peter had consulted one of the doctors at
the clinic about the lab tests and been told that they might have to change to
second line ART if they could not get the adherence in order. It might also
already be too late, maybe better to stop with the treatment at this time and
start over with second line when things were more settled for the girl.
Once back in the room with Florence and the grandmother, Peter noted that the lady started coughing. When asked about it she said that she had been coughing for some time now and that there was probably nothing to it, probably just a flu. It seemed persistent though, having given her fever on and off for quite some time. The red flags went up for Peter and he immediately sent both the grandmother and Florence off for a sputum test. This also gave him some time to think, and as he was now sitting back at his desk he wondered what to do.