Treatment Educator for the Spiritia Foundation, Jakarta, Indonesia
We have given considerable thought to this since we started a fund to provide therapy to activists in our network.. A number of basic elements show how we approached this:
1. Clinical criteria must be the basic entry point
2. There must be consideration of ability to adhere. For this reason, the recipient must have revealed status to at least one supporter, who must also agree to accept this role. Both must agree to learn about the importance of adherence.
3. There needs to be a committee who will decide on candidates. Preferably this should not include doctors or nurses who are caring for the candidate.
4. Priorities must be clear. This may include pregnant women, families with young children, and (in our case) activists - we can justify this because it is a principle of the fund.
We discussed this topic at our recent Treatment Educators' course. One major concern in our environment (not yet perhaps in Africa) is the fact that many who need treatment are drug users, either active or liable to relapse. The point is made that drug users are among the most adherent to their own regimen - they have to get their fix on time - but there is no doubt that active drug use does make adherence more difficult. But should we send active users to the end of the queue?
There is also the topic of subsidy. There are still many who believe that adherence is enhanced if people have to contribute to the cost of treatment, even though most studies fail to support this. The more people who contribute, the more people we can support. But should those who are willing to contribute go to the top of the queue? And what do we do if someone who agrees to contribute fails to do so, either for good or bad reasons?
As for triage, priority is given to those most likely to survive post treatment. This would suggest that we DON'T give priority e.g. to those with CD4s in single digits with TB. On the other hand, most such candidates don't consume the limited supplies for very long - and if they do, then you could say we've been successful.
One other point that rarely gets raised: we are effectively rationing by diagnosis. Currently less than 5000 people in Indonesia are aware that they are infected, out of an estimated 130,000. Our national objective in line with 3 by 5 is to treat 10,000 people by the end of this year. But we can't treat people who are not aware they are infected. And it's most unlikely we'll find enough this year - some estimates are that we'll need to test 500,000-1 million people to find the 10,000, and there's no way we can scale up VCT that fast. I suspect that similar situations apply in many parts of Africa. When I visited Khayalitsha, MSF noted that their waiting list was not very long, but nor was it getting longer. We need to work much harder on promoting the availability of ART, and scaling up VCT.
On the other hand, we need to be aware (or hope?) that prices will come down. There is no reason why first-line ART should be more expensive than TB treatment - we'll see prices below $50 per year well before 2010. What is going to be much more concerning is how we ration second-line and salvage therapies, which, like treatment for MDR-TB will remain very expensive. But if this therapy is needed because of lack of adherence, the chances are it will rapidly fail as well. Would this be throwing good money after bad? How do we allocate funding between first- and second-line?
Finally, we talk of the need for transparency, accountability and enforcement. Great, but... let's be realistic. These are not qualities for which our countries are well-known. We ask for policies to be made, yet many of our countries HATE to develop clear policies, since these limit the flexibility which allow priority to be given to 'certain' people. We need to be very pragmatic, and not aim for perfect systems, but provide communities with the skills to monitor what happens - yet be aware that they are equally open to 'bias'.
In the end, while we should aim (generally) for 'equity', this is pie in the sky. If we had real equity, people in the US and Europe would have the same access as those in Burundi. Some people will be treated, others not. The aim must be universal access as soon as possible, and in the meantime, well life just isn't fair.
BTW, I remember some time back a newspaper editor somewhere in Africa proposed that those who receive free therapy should be prepared to do something in return, particularly to speak out openly. Not sure that I fully agreed, but it is a valid point.