/ 16 May 2008

The hungry stats hole

In 2003 the South African Cabinet approved the use of antiretrovirals (ARVs) in the public sector and in early 2004 the programme started. Now in its fifth year, government often claims that it is the “largest treatment programme in the world”. While public health workers and activists might disagree on some aspects of the roll-out, they agree that it is an important vehicle to transform the lives of ordinary people living with HIV/Aids and a vehicle to strengthen the public health sector by increasing spending and training.

But five years later government is not able to provide accurate figures about how many people are on ARVs in either the public or private sectors. Nor can it share the “lessons learned” and health outcomes. Few providers in the private sector are willing to do the same.

For any government to admit that it has no clue is worrying: the department of health told Parliament about two months ago that although it was aware of how many people have enrolled for the programme, poor data collection means it has no idea how many people have stayed on it.

South Africa’s official country progress report, submitted to the United Nations General Assembly special session on HIV/Aids (Ungass) in February, says that in 2007 of the “889 000 people who needed treatment, about 488 739 (55%) were enrolled and 371 731 (42%) initiated on the ART programme”. But according to independent data collected by civil society we estimate that, at best, the figure of 375 000 patients was reached only in February 2008, a full year later.

Then there is information collected by the monitoring and evaluation cluster in the department of health, data which was not publicly available until recently. It shows that from 2004 to September 2007 about 418 000 people were “enrolled” in the programme. The information is concerning. In the fine print beneath the tables of enrolment figures it cautions that “the interpretation of patient numbers … should take into account the effect of patients who are lost to follow-up, deregistered and those who died after the commencement of treatment. This information is not currently captured. Provinces are in the process of starting to report on these indicators.”

In other words this information tells us nothing about the number of patients who receive treatment, nor how many have been lost: a disturbing sign that little emphasis is placed on continued monitoring and evaluation of treatment outcomes.

These outcomes are important because patient attrition rates are a major indicator of the success of any treatment programme. It is meaningless to know how many patients are enrolled without knowing how many are continuing treatment.

Such statistics serve little purpose. They also obscure information about the rate at which the programme is growing, which is critical not just for evaluation progress but also for future projections. The average monthly growth rate in the Western Cape, the only province that took patient loss into consideration, is 12% — much lower than the other provinces that reported only cumulative figures, such as average monthly growth rates of 26% in Gauteng to 69% in Mpumalanga.

There is no meaningful basis for gauging the overall velocity of the national treatment scale-up. Importantly, it casts doubt on the 2008 ARV drug tender, for which bids have already closed. How did this process continue in the absence of reliable data about existing patients and projected patient growth?

What is going on? Why is it that provinces — with the exception of the Western Cape — are not compelled to get better data? Why have we waited five years to contemplate better monitoring and evaluation systems?

Compared with other African countries, such as Rwanda — which has collected accurate and useful data — government cannot use the excuse of “poor infrastructure”.

If we can provide ARVs to people in urban, informal-urban and rural areas, then surely with political will we can collect data on the effects of the programme?

We should be able to explain why some people stop treatment or are getting it elsewhere. This will not only help with better planning, but also increase the number of people on treatment and meet the target of treating 80% of those in need by 2011, as set out in the National Strategic Plan on HIV/Aids.

In the private sector no one –including regulatory bodies — has an accurate picture of treatment numbers. Data collected by the Aids Law Project a year ago indicated that at least 100 000 people were on treatment in the private sector. But the SA 2008 Ungass report claims that the figure is about 75 000. If this is true, what happened to those 25 000 people? Have they died, stopped taking drugs, moved to another country or enrolled in public health programmes?

Does the department of health really know what is going on? Has it considered the overlap of public and private patients that cross regularly between workplace programmes, medical schemes and the public sector?

We are a middle-income country — the old excuse of “limited resources” will not hold water anymore. We have no reason to behave like an economic basket case, because unlike other African countries we actually have substantial resources, infrastructure and expertise.

What we lack is political will. The health minister continues to respond with a sense of half-hearted obligation: doing just enough to placate critics of the notorious delay in making ARV treatment available but lacking genuine commitment to addressing Africa’s greatest health challenge.

Paula Akugizibwe is the TB and HIV/Aids officer at the Aids and Rights Alliance for Southern Africa. Fatima Hassan is a senior attorney at the Aids Law Project