Five years ago, in an article titled “Scent of the plague”, published in the Mail & Guardian (June 29 2001), I summarised my experiences as a doctor working in a health service faced with the plague of HIV infection among children in South Africa.
I wrote about how difficult it was to break the news of a deadly infection to the parents, whose likely HIV status was revealed by the illness of their baby. Young doctors were working in busy environments with the ever-present danger of HIV infection from their young patients through needle-stick injury. Aids among children was largely a disease of infants who, in large numbers, rapidly succumbed to infections, especially pneumonia. Their uninfected siblings were likely to be orphaned.
The face of paediatrics had changed: death in childhood, which was relatively uncommon in preceding decades, was now painfully common. An immense amount of suffering that would inevitably lead to death confronted us daily. We, ordinary doctors, were “raw and edgy”, “irascible, combative or demoralised”.
At the time, the Treatment Action Campaign was confronting the Department of Health over its apparent reluctance to prevent mother-to-child transmission (PMTCT) of HIV. The M&G article was used in court papers. The court ordered the government to introduce a PMTCT programme. Since then a similar process has occurred over anti-retroviral treatment (ART). The question is: how have things changed for doctors treating HIV-infected children since 2001?
Widening gaps
Seated at the table are doctors from around the country. We have come to share experiences of a method of auditing child deaths. The aim is to identify “modifiable factors” in the health system: if one can remove a common factor one may save children’s lives.
The initiator of this system presents her findings for the Mafikeng area. Year two was better than year one in towns; less so in the rural North West province. The system, with its feedback loop, is useful. Then it is the turn of a paediatrician from Port Elizabeth.
Silence follows his presentation. More than 30 children die each month in his hospital, a majority from Aids.
Under such an avalanche of death, where does one start? We try to give words of encouragement to a careworn colleague. Next is a delegate from George in the Western Cape. Nine deaths over three months, only four related to HIV.
The inequities are indeed stark, but can we learn nothing from the contrast?
Maturation of the pandemic
In a paper soon to be published it is reported that, at the Red Cross War Memorial Children’s Hospital in Cape Town, after a seemingly inexorable rise, the number of children dying of Aids-related conditions at the hospital dropped in 2003. The trend appears to be continuing. The study shows that, while numbers of children dying of Aids are decreasing in the hospital’s catchment area, more children from older age groups are dying, suggesting maturation of the pandemic.
Fewer children in the Western Cape are becoming infected with the virus; survival is improving for HIV-infected children.
Programmatic war was declared on Aids by a senior member of the provincial health department. HIV/Aids still drains the fiscus and the emotions, but the sense of hope is palpable. Political will and good management are changing things for children. It could and should be done elsewhere.
Prolonging dying
While ART has brought life and hope, it has also brought new difficulties. In 2001 we wrestled with decisions about the aims of treating infected babies. Babies might spend weeks in hospital being rescued from repeated life-threatening complications only to die in a pain-ridden weakened state.
Senior doctors had to deal with the expectations of their junior staff. “Surely something can be done?”
Well, now it can. Just as we were learning when to let go, the possibility of ART has arrived. But who for? And when? These babies do not all respond to ART and getting the treatment going takes a lot of work.
When are we only prolonging dying with our ART?
New choices, new difficulties
We are on a ward round at a local district hospital. The doctors comment on the differences they see between attitudes towards the HIV-infected adults and children they treat. Their sense is that the sick adults who are admitted are “sent to the hospital to die”, whereas everyone goes out of their way to help the children to survive.
The social criteria for commencing ART (used to assess potential adherence to the regimens) can be less rigorous for children because, even if, through breaks in treatment, resistant viral mutants appear, they are not likely to be transmitted to anyone else. Doctors dealing with children in an era of ART are also very keen to get the children’s mothers on to the ART programmes.
Part of the impetus is the arrival of relatively healthy graduates of the PMTCT programme. Identified very early as HIV-infected, these babies carry an aura of hope that was lacking in 2001 when identification only occurred with the onset of severe opportunistic diseases.
Fewer children are getting on to ART programmes than adults owing in part to the extra skills that are required when using ART in children but, where programmes exist, the commitment of staff to get the children treated is impressive.
Late presenters
In 2001, I made the point that it was not the Nkosi Johnsons who were bearing the brunt of the childhood HIV/Aids pandemic, it was the infants. They were dying early and painfully in countless, uncounted numbers. They are still dying in large numbers, as my Port Elizabeth colleague’s experience testifies. What has changed is the arrival of older children whose disease is showing itself in different guises.
We are seeing school-age children with lung diseases, bone marrow disorders, unusual forms of tuberculosis and cancers. These “late presenters” were infected with HIV around the time of their births but the virus has taken years to produce symptoms.
The age of these children calls for a different approach from that suited to infants. Now we must talk to and with the children themselves. An added complication is that it is now more likely that such a child has no surviving parent.
Another new phenomenon is the teenager with HIV infection. Not the ones who get infected as teenagers — they are in the mainstream of national preventative efforts- — it’s the infected babies of the 1990s who did not die and are now (or soon will be) a new kind of teenager in South African society.
For them, as with the “late presenters”, the issue of when to disclose their infection status to them, and how and when they disclose to others, especially intimate others, comes up.
Helping them to cope with this and the ART regimens in societies disrupted by the self-same disease is no minor task.
We can change this
In 2006 all the features of Aids in childhood that I described in 2001 still exist in most areas of the country.
HIV/Aids and its baleful partner, child poverty, remain the biggest issues affecting the health of children. Prevention of HIV infection among adults remains the first prize. Among children, the pandemic is maturing, producing a new kind of infected child to add to the challenge.
PMTCT and ART are bringing hope to children, families and health workers and change to survival rates, but this change is not close to being a universal experience in the country.
I ended my 2001 article wondering whether childhood Aids “may be too great for us ordinary, unexceptional people”. I now know that this need not be. With PMTCT and ART and political will we can change things for the better for children and families, but we need the help of political leaders, senior managers and the public to do it.
This article was written by a doctor working in the public health sector. He wishes to remain anonymous for professional reasons