Disclosure

It's World AIDS DAY! That fact did not mean that today was different here than any other day; since it is something that we deal with everyday. But it is good that people elsewhere are maybe acknowledging the problem today. There have definitely been many changes for the better in regards to HIV and AIDS in the last 10 years, but we still have a long way to go. And we have challenges today that we could not really imagine having 10 years ago. One of the major challenges is the teenagers and young adults. Ten years ago children who were born with HIV in Africa did not make it to their teenage years. Today, with the increased availability of anti-retrovirals, their numbers are raising steadily (as I have mentioned before). This is a wonderful thing - all these children who would not have lived are surviving and thriving. However, as if being a teenager was not hard enough, they find out that they have a lifelong illness that requires lifelong daily medication! How they discover this information is critical to how they will be able to process what they hear and can have an impact on the success of their treatment. Many of these children have been taking medications their entire lives, but in most cases no one has given them any reason to take the medication other than "because I told you to" or "you are sick" (which if they are taking the medications properly they often feel perfectly healthy). Many begin to question why they should take medications when in fact they feel healthy.

Baylor has developed a stepwise process of disclosure so that the children are not lied to and the process is begun at a very early age. It comes with a flipchart of pictures and uses the analogy of soldiers and bad guy to explain what HIV is. The name HIV is not used until children are ready which can be anywhere from 9-14 or so, depending on their development. It only takes a few mins to explain this analogy to children and then the idea is refreshed at each visit and new concepts are added on. However it does typically require someone who speaks Setswana and does take an extra 3 or so mins. In many of the busy local clinics patients are seen by doctors who do not speak Setswana, there are no designated translators, and often patients spend a total of 5 mins with the doctor. All of these are huge barriers to disclosure and many of the medical officers feel that it is the caregiver's job to tell the children anyway. The caregivers often have no idea how to go about telling children and many have a lot of guilt over giving their children HIV. As a result, most of the children at these clinics have no idea why they take the medications or will say "because I am sick." I spend a fair amount of my time trying to explain what is really going on in a way that they can understand (that is after I have tracked down a translator!)

Here are two recent examples.

I was waiting at one of the local clinics for transportation to a clinic 60 kms from Serowe, when one the nurses approached me and asked if a patient (who had been referred from another clinic where they do not dispense ARVs) was eligible for ARVs. The patient was a 14 yr old boy who was living with his aunt. He had been sick a few times during his life and recently had had chronic diarrhea. His mother had died when he was young (his aunt assumed from AIDS, though the mother had never been diagnosed). The aunt had brought him to the local clinic for an HIV test when the diarrhea did not resolve after a few weeks. I went to see the child and his aunt. He looked about 8 years old, he was severely stunted and underweight (a common problem in children with untreated HIV). He was very quiet. We talked for awhile about his history; I examined him, and ordered the lab tests we would need before starting medications. It is quite rare for children to live 14 years with HIV without being very ill. But it is possible that he had acquired it slightly later in life through breastfeeding (as those were the days before formula was available to mothers who were HIV positive). We talked to him about whether he had ever had sex (which he denied) and whether anyone had ever made him do anything he did not want to do – to attempt to ensure that he had not gotten HIV from abuse. Finally I asked (with the help of the Setswana speaking nurse) what he knew about why he was here. He said that he only knew he was sick, but had not been told anything else (his aunt confirmed this with a nod of her aunt and looked down - I think she just had no idea how to tell him). So we got out the flipchart and told him the story of the soldiers (CD4 cells) who protect the body and the bad guy who is trying to attack them. We explained that with medication to protect his soldiers and put his bad guy to sleep, he would live a long life and could do anything he wanted to do. At the end I asked if he wanted to know the name of the bad guy. He nodded. "It's called HIV." His aunt sitting next to him on the couch began to cry silently looking straight ahead so that he wouldn't see.
"What do you know about HIV?"
"That there is no cure"
"You're right. For now there is no cure, but we hope that someday there will be. Until that day if you take medications every day you will remain healthy and you can play football, go to school, etc."
He nodded. We talked for a few more minutes about how things were different today than they had been many years ago when he had gotten HIV - now that we had medications to fight it. His aunt secretly wiped her tears and looked a bit relieved that she had not been the one who had had to tell him.

A few weeks later I witnessed disclosure how it should be. I was in Mahalapye seeing a 5 year old with one of the nurse prescribers. He was thriving - growing well, about to start school in Jan and clearly a very smart and happy child. Without my asking, she took out the flipchart and began to explain, with great animation, about the soldiers of the body. When the children are very little we only tell them that they take the medications to keep the soldiers of the body strong and we add to the story each time. The little boy listened intently and answered her questions correctly. At the end I gave him a sticker which he put right in the middle of his forehead. He gave us a huge smile and headed out with his grandfather. I hope that when he reaches 14 he will remain the happy, smart, and confident child he is today.