on second thought.......

Last year when I was still the AIDS/STD desk Officer for the state, I undertook a project that was half way through its implementation, that was to organise and implement the mandatory testing of HIV for Sabah, so that we will be on par with the rest of the states in the country. At that time, we were pressured to be one of the only 3 states that were not implementing the mandatory testing yet.

The effort from the Healtyh Department is just to prepare ourselves and provide the testing when it is needed. We are not in the position to make it compulsory, being just the service provider, the callhas to come from the authority of the religion, namely Islam. And they have, to date, passed a decree, or (what is it called in BM I can't remember now) and the head of JHEAINS - Jabatan Hal Ehwal Agama Islam Negeri Sabah - has announced the 1st of January 2009 to be the date of launch and mandatory implementation.

Yes, I was proud to be involved in making it a reality, we were even thinking of bringing it to the other religions, and be the first in the country to implement it amongst the non-Muslims.

But I'm having second thpughts now... especially when I have to confront the statistics, and the Human Rights issues... sigh... what should I do?

Below, the article Marina Mahathir (whom I totally idolise) wrote in her blog, and the article from UNAIDS on the issue of ethical testing.

Friday, December 19, 2008
Why Mandatory Premarital HIV Testing is NOT the way to go

The announcement by DPM yesterday is not something new. Mandatory premarital HIV testing was first started in Johor in November 2001. It should be noted that this was a policy of the Jabatan Agama Islam Johor (JAIJ) which makes it the first time that a religious department has made health policy, thus far the purview of the Federal Ministry of Health (which up to yesterday did NOT support mandatory premarital HIV testing, at least officially).

After which, state by state, religious departments have taken it up so that now we have a situation where almost every state now has mandatory testing.

Interestingly enough, we have absolutely no data on the efficacy of this policy which ostensibly is to prevent women from getting infected. The MoH is unable to give us statistics on how many people were diagnosed HIV+ through this programme because, they said, all state results are integrated into one report and they are unable to segregate how many were diagnosed through the premarital testing and how many through other avenues ( testing of drug users in Pusat Serenti and prisons,STD clinics,blood donations etc) . So basically we have a policy for which there can be NO monitoring and evaluation. Isn't that a great way to spend taxpayers' money?

The HIV prevalence rate in Malaysia is currently less than 1%. Prevalence rate refers to the % of people infected among total population. Now if we test couples intending marriage, we are testing the general population ( as opposed to at-risk or vulnerable populations such as drug users, sex workers, fishermen etc). Therefore we can expect that the results of positive diagnoses would be also less than 1%. Does it make sense to spend all that money on testing equipment and human resources to get such a low return?

Let me state that I am not against testing if it is voluntary. I think it is good and healthy for a couple intending marriage to talk frankly to each other about what risks they may have taken and to allay any doubts and fears by going for testing. It may interest you to know that the small anonymous voluntary testing programme that the MoH did run had a better take-up and higher positive diagnoses rate than the mandatory testing programme. That's because people who feel they have been exposed are voluntarily taking the test themselves, and the anonymity gives them comfort that they won't have to reveal themselves until they decide to.

In terms of preventing infection to women, this is not only a particularly lazy way of doing things but also paternalistic and patriarchal. It is based on the assumption that infection only occurs from men to women and therefore women should be protected from these bad men.

Well, guess what? In the very first cohort of people tested in Johor, they found women already HIV+!!! So you don't need to get married to become infected.

What anecdotal reports we have also suggest these people were not given adequate counselling. All the HIV+ people diagnosed were allowed to get married if they wanted. Most of them did, because to not do so would risk broadcasting to their entire community that they were possibly HIV+. However these marriages did not last long. What's more some of the couples refused to even live together, from which you can surmise that they did not have basic info regarding how HIV can or cannot be transmitted. And certainly were not told about condoms.

More importantly is this: testing only tells you what anyone's status is at that point in time and no more. Without pre- and post-test counselling as well as sustained public education about HIV, there is no guarantee that anyone would remain HIV-free throughout their lives. And as long as women are unable to refuse sex with their husbands even when they suspect their husbands may be HIV+, they will be unable to protect themselves from infection. If anything, mandatory testing gives a false sense of security to these couples. (In KL, there have been 60-year old married women diagnosed HIV+.)

Last year I presented a paper on a cohort of 300+ HIV+ widows in Kota Bharu at the 8th International Congress on AIDS in Asia and the Pacific in Colombo, Sri Lanka. All of them became infected through their husbands and all were left with children and no means of support. Many of them knew that their husbands were drug users when they got married but did not know that this put them at risk of HIV infection. They only found out their own status when their husbands were diagnosed, very often very late.

You have to wonder why these women married men they knew to be drug users. Some only realised how bad it was after they got married. Not all the men were HIV+ yet when they got married but eventually became so after a few years, probably after graduating from smoking to injecting. In many cases, it is only their younger children who are HIV+ which suggests that infection occurred later in marriage. While I do not recommend it either, it would seem that a premarital drug test would give you a better indication of who is likely to become HIV+ in the future than an HIV test.

Is the answer then to keep testing people throughout their marriage? Obviously not. We need public education about HIV and we need to empower women and uphold their rights. We have far too many cases of women being told that they have to have sex with their husbands because it is their duty even when they suspect or know their husbands are HIV+.

And of course we should talk about condoms. In a study of HIV-discordant couples ( ie one partner HIV+, one not) at KLH a few years ago, it was found that despite counselling, Muslim couples still did not use condoms, thus putting the negative partner at risk (usually the wife). Although the study did not ask why, we can surmise that it is because Muslims believe that condoms are haram. Our ulama, unlike in Indonesia, have not unequivocally said that condoms are ok within marriage.

For international policy on HIV testing, read this.

Now, here's a question: if couples run away to get married in southern Thailand, will they be subjected to HIV testing after they get back? But then they are already married, which means transmission of HIV can already have occurred. How do you then protect the women?

Posted by MarinaM at 12:51 PM 5 comments


HIV testing and counselling

In 2003, it was estimated that only 0.2% of adults in low- and middle-income countries received voluntary HIV counselling and testing services. People fail to be tested for HIV for many reasons: lack of access to testing services, fear of stigma and discrimination, fear the test will be positive, and lack of access to treatment. These facts mean thousands of opportunities for increased access to treatment, care, support and prevention have been, and are being, missed.

In light of the need for individuals to have earlier access to treatment, care, support and prevention, UNAIDS and WHO are supporting a major expansion of access to HIV testing and counselling through the scaling up of client-initiated testing and counselling services and through the expansion of provider-initiated testing and counselling services in health care settings. Such efforts are not only necessary to improve the health of individuals, they are also necessary to achieve universal access to prevention, treatment, care and support and to mount effective responses against HIV.

UNAIDS does not support mandatory testing of individuals. All testing, whether client or provider-initiated should be conducted under the conditions of the “Three Cs”: involve informed consent, be confidential, and include counselling. Recognizing the urgency of connecting HIV positive people to prevention, treatment, care and support, UNAIDS and the World Health Organization released in May 2007 operational guidance on provider-initiated HIV testing and counseling in health facilities. The guidance is in line with the 2004 UNAIDS/WHO Policy Statement on HIV testing and recommends that traditional voluntary testing and counselling be supplemented by provider-initiated testing in all health settings in generalized HIV epidemics, and in selected health facilities (such as tuberculosis, sexual health or antenatal health clinics) in areas with low or concentrated HIV epidemics.

Implementation of this guidance must be informed by an understanding of social and epidemiological context in which testing is taking place. Where there are high levels of stigma and discrimination and low capacity to implement testing and counselling under the Three Cs, these issues should be addressed before expansion of access to provider-initiated testing and counselling in health facilities. Though access to anti-retroviral treatment is not a prerequisite, there should be some realistic expectation of such access within the context of the country’s plan to achieve universal access by 2010. Furthermore, there should be access to a basic package of prevention, care and support, as the cornerstone of expanded access to HIV testing and counselling to achieve beneficial health outcomes.