Frerichs, R.R. Response to Acceptance of HIV Personal Screening.

SEA-AIDS Network, July 11, 1998.

Posted in response to:

SEA-AIDS, June 30, 1998

From "Ditch" Townsend, Malaysia

The issue of context for Personal HIV Testing (or any actively promoted Voluntary Public Testing) has been mentioned again recently by Rebecca Firestone (#46). She notes potential problems where there is inadequate access to treatment, information and opportunity for 'mitigation of concerns' (the latter two arguably forming the core of HIV-related counseling). These however, are not the only problems being faced by marginalised communities.

Confidential testing with pre- and post-test counseling, can seem obvious. UNAIDS has noted a whole range of reasons testing and counseling; access to anti-retroviral treatment to prevent vertical transmission; safe bottle feeding for babies of HIV+ mothers; improved nutrition for HIV+ people; earlier access to care and treatment and emotional support.

Added to these are issues like preparing a family to cope with bereavement; preparing wills; arranging for guardians or adoptions of prospective orphans; using condoms where partners have different HIV serostatus; accessing welfare provisions; withdrawing life insurance and pension monies.

Unfortunately, in some communities, knowledge of HIV+ serostatus may be damaging, particularly for women - where there is no access to AZT/ZDV to prevent vertical transmission, because of cost or availability;

- where dirty bottle feeding is more likely to kill infants than breastmilk transmission of HIV;

- where nutrition is generally poor and resources and skills are too limited to lead to nutritional improvement despite knowledge;

- where health services (if even marginally available) may unofficially discriminate against those with AIDS-related conditions, if HIV infection is known;

- where treatment of the virus is astronomically expensive, or apparently only available in the field of uncontrolled quacks’ dispensing ‘miracle cures’ at the cost of a life’s savings;

- where a counseling workload of sufficient coverage would overwhelm any attempts at professional support service;

- where family and community are ill-prepared to provide emotional support;

- where the diagnosed infected person is likely to withdraw from medical or social contact - merely awaiting or hastening death;

- where a man would rather divorce his infected wife and take custody of or abandon their children, than modify his behaviour;

- where a woman is not in a position to ask her partner to do anything for fear of him or other cultural reasons;

- where many in society are overwhelmed with survival in extreme poverty, let alone taking in fresh, dependant children to feed and nurture;

- where condoms are not available, too expensive, poor quality, poorly used, used under the influence of alcohol, not ‘macho’, associated only with CSWs, not within the purview of a woman to raise as a topic with her partner;

- where there are no welfare provisions to access;

- where there is no life insurance or pension savings;

- where society will shun those known to have AIDS and their children;

- where women have little if any control over their fertility or circumstances;

- where a national history of strife makes for an uncertain future, enhancing one's resignation to fate;

- where there might be evidence that people with diagnosed HIV with nothing added, die sooner than people with undiagnosed HIV and nothing added (I can not attribute a source - only hearsay that a such a study was done in Zimbabwe/Southern Africa - perhaps another reader can clarify this);

- etc.

Personally, I feel empowered to use a personal HIV test kit with reasonable insight. I do not wish to restrict personal choice for others who feel the desire to do so either - though pre-test counseling might cause them to choose not to. My problem is with PROMOTING testing in contexts where (until I am convinced otherwise) inadequately empowered people will end up more damaged. To me, this issue falls within the debate on the ethics of any kind of health screening.

Vis-a-vis comments in recent postings by Ralph Frerichs, I worry when he says, 'Perhaps colleagues in wealthier countries who fund HIV/AIDS programs would consider remaining neutral on this issue, thereby opening the door to further experimentation by Public Health officials in the Developing world.'

Clearly, if (as Frerichs says), "detection will likely lead to behavior change" - in a marginalised context - then promotion of testing will bounce back up my hierarchy of priorities in these contexts. However, I am frankly astonished at the claim and wonder at its sources. I am not a researcher and would value an exchange of opinion in SEA-AIDS on this question.

Like I have indicated before, I am non inflexible. Nor, I hope, is Prof Frerichs who replied to my last posting 'Testing issues may be different in Developed versus Developing countries. This certainly could be true.'

'Ditch' Townsend (Dr)

AIDS Projects Development Advisor

MALAYSIA (3 years so far on my current contract; resident in Southeast Asia for half my life)

From Jacques Jeugmans, Philippines

Thank you to Prof. Frerichs who keeps raising issues it helps all of us clarify our understanding and force us to better analyze and assess the various strategies that we want to support or implement.

I would like to comment on "personal HIV screening". As policy makers, we need to devise strategies based on objective and accurate data. Epidemiology brings us information that is essential to ensure that a considered strategy is scientifically sound. This is the first condition to proceed. But this is not enough. We also need to (i) assess the impact of the strategy on the people who are going to be affected, and (ii) consider alternatives and how to best use limited resources.

HIV home testing is epidemiologically sensible as described by Prof Frerichs, but let's consider the other aspects. Home testing will create a lot of suffering that may be avoided with a more careful approach. In HIV/AIDS, we are dealing with life-threatening issues. When you discover that your life is threatened (by HIV/AIDS, or with cancer for example), it is a "shocking" information and all of us would need friends and support at that time. With personal testing at home, to face the diagnosis alone, or worse, in front of a partner that trusted you, may be very painful (For one time casual partners, home screening may not have the same psychological impact, but then we have the window period. But this is not my point.) 

Home testing will be useful when HIV/AIDS is considered as a "normal" disease, when the community is ready to support the patient. We are unfortunately not at that stage yet home testing without any support, especially if promoted as a public health strategy, will just put pressure on people and create useless sufferings.

Before we promote individual home testing, we should create an environment where (i) information is easily available and accessible to everybody and (ii) the community is ready to provide friendly support to those who are affected (and this include psychological support AND medical treatment).

Priorities are (i) to inform and to change attitudes, so that the problem is more easily identified and addressed by the whole community, and (ii) to establish the necessary support for people living with HIV and AIDS.

Rapid tests are needed and must be developed, but to be used in the health centers or in a community ready to support (NGOs included). But home testing should not yet be promoted as a public health strategy there are other priorities.

Jacques Jeugmans

Asian Development Bank

Manila, Philippines

R.R. Frerichs Posting

The discussion of the pros and cons of personal screening tests for HIV has certainly become lively, as more SEA-AIDS postings are added to the mix. I would like to respond to two of them (Townsend and Jeugmans, both posted June 30, 1998). I prefer not to address the issues raised by a third commentator (Hammar, June 30, 1998) regarding the link between HIV and AIDS, since this has been widely addressed in other circles. Different from Hammar, I believe that HIV is causal to AIDS and that the presence of HIV antibodies is indicative of past and present infection. Thus I favor testing schemes for detecting HIV. 

The Townsend and Jeugmans postings bring up two important issues that need to be considered in a developing country context, especially those where HIV is common. First, do the benefits of HIV detection exceed both the financial and social cost associated with the information? Second, if detection is deemed desirable, how can this best be done in a developing country setting? For many health professionals, the answer to the first question is positive when considering blood transfusions and is becoming positive when considering testing of pregnant women to avoid mother-to-child transmission. Where people seem to differ is in testing couples who are either married or planning to be married. While Dr. Townsend states that he is not a researcher, his comprehensive and thoughtful list of concerns certainly suggests that he thinks like a researcher, trying to identify the various problems that may arise with testing. Each of his points would probably be worth considering in a study setting, although the investigations would take some time to carry out.

The clearest evidence of the merits of HIV testing comes from the many discordant couple studies that have been published in the literature. In general they show that couples act different when they know that one is infected and the other is not, and that this knowledge leads to behavior change that reduces HIV transmission, at least within the couples. The value of testing in an organized setting in two developing countries was recently described by Susan Allen, MD, PhD in a presentation given on April 17, 1998 at the Center for AIDS Prevention Studies, UCSF AIDS Research Institute, San Francisco, CA ("The Next Generation of HIV Prevention in Africa"). 

Once people decide that providing couples with HIV test results is important and desirable, then the second question comes up -- how can this best be done when resources are low? Here the answers are murky to say the least. Most health professionals feel that counseling must accompany testing, or else people will react badly or inappropriately, thereby causing additional harm. Dr. Townsend provided many examples of what might occur, and likely has occurred in various settings. Unfortunately, counseling and testing centers are often too expensive for developing countries to maintain in other than large urban regions. When this occurs the coverage of testing services is inadequate for the majority of people who live in small towns and rural villages. As a result, some people in the developing world are offered testing services but most are not.

If testing decreases viral transmission (as shown by the many discordant couple studies), then some urban couples benefit and most rural couples do not. So how can testing be expanded to rural areas? One strategy might be to included HIV testing in existing family planning programs, expanded to include treatment for minor STDs as part of a reproductive health unit. Here non-medical personnel would administer the test and provide information about what the results mean, and what should be done next. Such a program might work if there is sufficient government support to fund the effort.

Another strategy might be to combine public education with personal screening tests, encouraging couples to test each other and act on the information. This strategy might be especially useful if there is inadequate government resources to pay for testing, since it allows people to decide for themselves if they value the test. The sales and distribution system would probably be similar to what is now used for condoms, or for various pharmaceutical products. The specific schemes would have to be worked out in local settings, as is usually done in the private marketplace.

Dr. Jeugmans of the Asian Development Bank offered in his June 30 posting the helpful suggestion "Before we promote individual home testing, we should create an environment where (i) information is easily available and accessible to everybody and (ii) the community is ready to provide friendly support to those who are affected (and this include psychological support AND medical treatment)." He went on to state "Priorities are (i) to inform and to change attitudes, so that the problem is more easily identified and addressed by the whole community, and (ii) to establish the necessary support for people living with HIV and AIDS."

I agree with his general thoughts on the need to normalize (or destigmatize) the disease, but differ on the strategy to bring this process about. It is hard for societies to accept HIV infected persons when they are hidden from view and all they read or hear is that the disease is too horrible to bring out in the open. To address such thinking, I favor the approach we have taken here in the United States, namely to give exposure to prominent people (and some not so prominent) who are infected.

The message that Earvin "Magic" Johnson sent out at his press conference was loud and clear, and remains so every time he appears on television or in other media. The same holds true for Mary Fisher who addressed the Republican political convention several years ago and many others who appear each day in newspapers, magazines, radio and television. Similar efforts to normalize the disease are underway in many developing countries, in which people living with HIV are encouraged to speak out and let others see the human face of the disease. Such efforts, requiring individual courage, help bring about the social transformation that both Dr. Jeugmans and I agree is necessary. Finally, I would like clarify the issue of my scientific neutrality, alluded to by several commentators in the many "Acceptance of personal HIV screening" postings. As should be obvious, I am far from neutral on the issue of HIV detection. As an epidemiologist who believes strongly in prevention, I feel that testing is an essential first step in finding HIV and promoting efforts to reduce further transmission. Where I am much more neutral is on ways to increase testing. While I have written extensively on personal HIV screening, it is more to stimulate field experimentation, than to establish a program with fixed guidelines.

I also favor experimenting with rapid tests in clinical settings, with testing by lower-cost non-medical personal, and with inexpensive ways of informing people about the meaning of their test results. Such investigations are often termed "operations research" studies, trying to figure the best way to deliver a service to the general public. Here much research is needed, especially in the higher prevalence countries reached by SEA-AIDS. Perhaps we will learn more about such testing studies as the 12th World AIDS Conference concludes in Geneva.

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