The Economic Value of Reducing the Stigma of HIV/AIDS

Robert J Brent


Expert Rev Pharmacoeconomics Outcomes Res. 2013;13(5):561-563. 

Stigma can be defined as assigning a mark of shame or discredit to a person or his/her behavior. HIV/AIDS stigma has led to many adverse consequences as those with the disease try to avoid the shame by not disclosing their HIV-positive status and this leads to the unnecessary infection of others and also to a failure to access treatment when otherwise it would be available. In fact, the UN Secretary General Ban Ki-Moon has stated that stigma is a chief reason why the AIDS epidemic continues to devastate societies worldwide.[101]

A number of possible interventions exist to reduce HIV/AIDS stigma.[1–3] In Sub-Saharan Africa, there can be educational programs that present unbiased information pointing out that not all those infected pursue behaviors that are either high-risk (injecting drugs intravenously) or what some persons may think morally questionable (males having sex with males) as the majority of the HIV transmission arise from heterosexual activity.[4] In the USA, there can be the repeal of some or all of the legislation in 33 states that criminalizes the actual or potential exposure of HIV.[102] But any stigma reduction intervention involves the use of scarce resources that could be devoted to other uses.

The policy issue then is to establish whether the stigma interventions are to be considered socially worthwhile. To do this, one needs to undertake an economic evaluation in the form of a cost–benefit analysis (CBA) that tries to establish whether the monetary benefits of any intervention exceeds the monetary costs.[5,6] Cost–effectiveness analysis (CEA) studies of HIV/AIDS stigma prevention do exist.[7,8] But at present there is only one CBA.[9] Note that a CEA does not establish whether something is socially worthwhile as it does not place a monetary valuation on the output and so it is incommensurate with the costs of the inputs that are expressed in monetary terms. A CEA merely ensures that, provided that one has already decided that some intervention is socially worthwhile, it could then be undertaken in the most cost-effective way (least cost for a given output, or highest output for a given cost).

In order to carry out a CBA of a HIV/AIDS stigma intervention, the issue thus revolves around the question of whether the stigma reduction outcome really can be valued in monetary terms. The answer coming from an economist is that anything can be given a price provided that there are appropriate data. However, the response needs to be even stronger than this by saying that a change in stigma must be valued in monetary terms, or else there is a risk that it will be ignored in making an economic evaluation of an intervention that can reduce stigma. This is because there is a real danger that the change in stigma will be classed by a non-economist as 'priceless', which with a literal interpretation means that in practice it will effectively be given a zero price! If there are no reported benefits, then it is not surprising that few economic evaluations of HIV/AIDS stigma interventions have taken place so far.

So how then can one value reductions in HIV/AIDS stigma? The starting point is to have available a quantitative measure of stigma.[10] A comprehensive measure used by psychologists is the Berger scale.[11] This is a 40-item instrument, 10 for each of 4 categories which measures perceived stigma in terms of personal stigma, disclosure concerns, negative self-image and concern with public attitudes toward people with HIV. Each instrument is on a scale of 1 to 4, which means that the overall score lies between 40 and 160.The remaining step is to put a monetary value on each unit change in the overall Berger scale score.

What critics of CBA fail to appreciate is that the discipline provides a large number of alternative benefit methodologies to choose from so evaluators should be able to adopt a methodology that they are comfortable with. Common practice for healthcare evaluations is to use the human capital approach whereby effects are valued by income changes. So for HIV/AIDS stigma there are studies which record the loss of job security.[12] This basic approach to evaluation is criticized by non-economists on ethical grounds and by economists as being unrelated to the central principles of CBA that rely on the preferences of those most affected by an intervention to count. Thus, best practice in CBA is to adopt a method that uses the preferences of those actually experiencing the HIV/AIDS stigma. Income changes reflect effects on other individuals (i.e., forgone output for the rest of the economy) not effects on the people themselves (though losing income is a part of the loss of satisfaction of those being stigmatized). We will refer to a study that values changes in stigma (the Berger scores) by using this best practice methodology.[9] The data set is related to the preferences of nearly 1000 persons aged over 50 years living with HIV/AIDS in New York City.[13]

The basic idea was to use a happiness index (overall quality of life on a scale from 1 to 10) to find the trade-off between changes in measured stigma and changes in income. A unit of stigma had about a -0.01315 impact on happiness and a unit of income (US$1) had about a 0.000015 impact on happiness, which means that one unit of lower stigma was equivalent to US$854 in happiness terms. Allowing for the fact that stigma would reduce the income that a person earned produced a final valuation of around US$1000 per unit of stigma. If an intervention could be devised that would completely eliminate maximum stigma (the Berger score would fall from 160 to 40), this would be valued at nearly US$120,000.

Obviously, US$120,000 is a lot of money, especially as it would be experienced each and every year if a permanent, complete solution were feasible. In reality, one could expect that an intervention would affect stigma by a few points, say 5 to 10. In this case, we might use a value of US$5000 to US$10,000 for the benefits. This would then become the benchmark for costs, with any intervention costing less than these amounts per person being judged worthwhile. The challenge now is for healthcare professionals and policymakers to identity interventions that will realize specified stigma reductions and to ensure that they are fully costed including all inputs to no matter whom they accrue, including hospitals, doctors, patients and family members.

One way of thinking about the US$120,000 valuation is to consider this thought experiment. Say you inform someone else that you have a chronic life-threatening condition. One is likely to receive sympathy. Now consider telling someone that you have HIV/AIDS. You will now, because of HIV/AIDS stigma, probably receive disapproval or silence. What would it be worth to you to be able to disclose that you have HIV/AIDS and be treated like anyone else with a chronic life-threatening condition? The estimate is around US$120,000 per year. In principle, that is, if those infected with HIV/AIDS are fully informed and rational, the US$120,000 would be an estimate of the valuation of the sum total of all the adverse ways that stigma affects an individual, for example, by not getting tested; reduced interaction with family members, friends and society as a whole; and not seeking treatment.

The role of stigma in reducing access to health treatment and services is not unique to HIV/AIDS. Stigma has been found to be a barrier to managing many chronic illnesses,[14] mental health services,[15] Medicaid[16] and obesity.[17] In Tanzania, people would rather pay for condoms (albeit at a subsidized rate) from a condom social marketing program outlet at night rather than receive them free from a public health facility during the day where they would be visible to all, so informing others that they needed protected sex, which would probably attract stigma whether people were married or unmarried.[18]

There is a catch-22 situation with any healthcare intervention that relies on public assistance. The interventions will necessarily target the needy. But, by receiving the assistance, the patients are acknowledging and announcing to everyone that they are in fact 'needy'. So stigma will almost always exist with any assistance program. The task for policymakers is to come up with interventions that will reduce the stigma by specified amounts, value the reductions in monetary terms and evaluate them using CBA to see whether they are socially worthwhile. The end result would be that one would be able to evaluate an intervention as a package consisting of the intervention itself and the associated level of stigma. For a given level of stigma there would be a corresponding level of utilization of good health service. Valuing that level of utilization and valuing the given level of stigma, or its reduction, in the way we have indicated above, would supply the overall monetary valuation of the intervention package.