17 June 2013

From Treatment Cascade to Treatment Two-Step

By now, you may have heard a lot about the HIV Treatment Cascade. If you haven’t, and you want to read about it from a source other than me, you can consult a couple of excellent articles on Positive Lite: one by Gus Cairns and another by James Wilton and Logan Broeckaert. My own interpretation of the ideal outcome, the goal for which to shoot, is somewhat different.

1 Starting point: HIV-infected individuals

The whole thing starts with the number of people infected with HIV, which we would all like to be as low as possible. We can take that as a given number and we can affirm our collective interest in keeping that number as low as possible, through all the means at our disposal. I would suggest that there might be some limits on the deployment of some of those means, but we’ll get to that later.

2 Testing and Diagnosis

The next step in the traditional treatment cascade is the number of people infected with HIV who are aware of their status: the testing/diagnosis question. I’m one of those people who tested too late, and I never miss a chance to tell people that it is really a good idea to get tested if you feel like you might have had a risk of HIV transmission, at least from the point of view of managing your own physical health and making good decisions about your own behaviour.

On the human rights side of this step, there are a few dangers that merit our attention. First, we always have to be sure that people are providing free and informed consent to their being tested. I cringe every time I hear the term “universal testing” and relax a bit when we clarify that to “universal offer of testing”. We’ll leave aside for now the question of whether universal offer of testing is an efficient use of our scarce resources (but you’re probably detecting a hint of my point of view on that because I am so subtle).

Other human rights considerations on the testing question include the impacts of being tested. If you are tested regularly, following public health recommendations, you might find yourself having to leap additional hurdles to get any kind of insurance, even if your tests all come back negative (insurance risk). That question on the insurance application should be outlawed in the interest of public health. If your result ends up being positive, you can probably forget about the insurance (I would suggest some new actuarial calculations are in order, given our long life expectancies with treatment), but you can start worrying about disclosure and criminalization. Is criminalization a disincentive to testing? We all think it is (we still need good data on this) and our society needs to consider whether it is more important to encourage testing or to reward ignorance. A subject too long to discuss in the context of this article.

3 & 4 Link to Care and Retention in Care

How many of those people who have found out their status have access to medical follow-up in a continuous manner? In the US, this is one of the big gaps (likely a product of their resistance to universal health care), but even here in Canada, where health care is generally freely provided to citizens and permanent residents, there are challenges to ensure the continued access and adaptation of medical care for more marginalized people and those who have some doubts about the professionalism and confidentiality of the system.

That means that we have to continue to work on ensuring that all people who are diagnosed have appropriate follow-up, including a broad range of medical and social services to respond to their needs. Those services need to be accessible, taking into consideration the particular challenges that some people face in dealing with the structures of our health care system, which are generally not very accommodating.

How are we doing so far?

So far, I am totally on board with the treatment cascade people: we need to minimize the infections, encourage all who are infected to be tested and to be aware of their status, and ensure that everyone who tests positive has appropriate ongoing care. I would add that everyone else ought to have appropriate ongoing care, too, especially if we want them to stay HIV negative, but that is also a subject too large for this particular article.

5 Anti-retroviral Treatment

Here’s where I have some dissonance with the cascaders. I do believe that everyone for whom antiretroviral treatment is indicated for their own health, including their mental health, should have unfettered access to that treatment. When I insist on mental health, I include people who might be very concerned about transmission and choose to go on treatment to reduce the risk for their partners. I don’t believe that everyone who is HIV-positive needs to be on treatment.

Some people will insist that the theoretical basis for the concept of treatment for all, whatever the state of their immune system, is sound. I would counter that the theoretical basis for asserting that sustained undetectable viral load (with all the conditions that implies) eliminates transmission is also sound, but I don’t see a lot of public health authorities jumping on that bandwagon. The truth is that there are studies underway to prove that earlier treatment is advantageous, but these have not reached their conclusion yet. If we are going to act on hard data, then we need to produce the hard data.

There is also a political aspect to this question. Apart from the informed consent to treatment aspect, there is also the rather poor track record we had with our last bout with “hit hard, hit early” in the 1990s. Show me a jurisdiction that addressed the emerging issue of lipodystrophy in an adequate manner at that time (or even now!) and I will show you the jurisdiction I would trust to recommend earlier treatment. Our system has to be ready to take charge of treating any possible emerging long-term side effects if we are going to charge ahead with earlier treatment.

My viral load: flat parts are undetectable, blips are blips

6 Undetectable Viral Load

Back to the non-controversial here. All people on treatment ought to have access to a treatment regimen that brings them to undetectable viral load. This is not as simple as it might seem, and for me includes access to all of the diagnostic and monitoring tests that are needed to find the most appropriate treatment, patient information that promotes active participation in the choice of treatment and all of the support that is necessary to help people follow their treatment and optimize its results. That includes a lot of adaptations and additional support for people who face greater challenges.

My Ideal

It may be due to the fact that I have always pictured myself as a cowboy, or that I have a long personal history of country dancing, but in looking back on this I see two steps: one where all who are HIV-positive are tested and aware of their status and have a regular medical follow-up adapted to their needs, and the next where treatment that is indicated for the health of the person, including mental health, is readily and easily available and accompanied by all the support necessary to ensure that it results in an undetectable viral load.

That, for me, is the Treatment Two-Step, and if you don’t want to go with the country imagery, you can foxtrot it (same rhythm).

No comments: