Tuesday, March 5, 2013

“To sign or not to sign?”

That was a decision I was forced to make one early morning at a private hospital in Kuala Lumpur.

“I’m not signing. The hospital can go fuck itself!” My husband’s mind was made up even before I could blink my sleepy eyes twice.

For a brief second, I almost dismissed my husband’s reaction as a tad too melodramatic and was very close to signing what had already begun to threaten the tranquility of our rare morning together. But I didn’t.

I let out a big sigh and told the young woman at the front desk, “Sorry, I can’t sign this. We won’t consent to this.”

Once I had said it out loud, the look on her face told me that things were not going to be smooth for my husband and I that day. The wide eyes behind her glasses looked shocked, confused and uncomfortable. I might be biased but I thought she also reeked of judgment.

“I’m sorry but this is a hospital policy. You have to sign this if you want to get tested,” she said a bit too timidly. I don’t know how, but she seemed to sense that this would not go down well on us.

I looked at my husband, not as an attempt to persuade but for an affirmation of our decisions.

“Nope. I’m not going to sign.” He walked away to signal his unwillingness to waste any more time on this matter.

I let out another big sigh as I found myself losing patience too.

“Look, we have no problem signing a consent form for HIV testing but we do have a problem with this clause here. See? It says, if tested positive, you guys will be notifying the Government Authorities,” I explained.

“But this is the law,” she tried to convince me.

So if the law requires you to jump off the Penang Bridge, you would?

I rolled my eyes and sighed again.

“I know but we don’t agree with this law. So we’re not going to consent as a sign of our protest,” I said instead.

We were then told to wait at the lounge while she consulted her manager.

After ten minutes, an older woman came and asked to speak to me privately. She ushered me to the corner of the room and said to me in a low voice, “M’am, your medical package includes HIV screening. We’re not sure whether it is possible for us to exclude this testing.”

I stared her. It was my turn to look shocked, confused, uncomfortable and judgmental. By then my patience had hit a record low and I couldn’t help myself but to retaliate in full force.

I can’t remember what I had told her precisely but I surprised myself that day for being eloquent as I made my case. The conviction and anger inside me helped me to articulate my argument to her and in summary, I told her that nobody could force my husband and I to test for HIV/AIDS.

“Of course, of course. You’re right. Let me go and check with the company who offered you the package to confirm that it’s OK for you to go through the check-up today without the test.”

My husband looked defeated. He was convinced that we were not going to have our routine medical check-up that day. In a determined voice, I said to him, “If she comes back and tells us no, I swear I’m going to give them hell.”

After waiting for another 15 minutes, hell remained mine.

For close to ten years, my husband and I had gone through routine HIV tests annually. In fact, before we had our first sexual intercourse, we had ourselves tested. This is how strongly we feel about protecting each other from HIV/AIDS. The episode above was the first time that we had actually skipped a HIV test.

Many of you may wonder why we had made such a ruckus over this.

I had recently learned from a friend that testicular cancer is apparently rather common amongst Canadian adolescents. According to her, because most adolescents are embarrassed to talk about their private parts, many choose to remain silent when they feel an abnormal growth on their testicles. By the time they decide to seek treatment, the cancer has already advanced considerably.

I suppose the same principle applies here, except multiplied by ten because of the stigma HIV/AIDS carries. Because of our strong fear of stigmatisation, we would rather not get ourselves tested. Because of the lack of information, we are not sure what the Government Authorities would do with our medical record. In the meantime, the hospital did nothing to help us understand the procedure of HIV disclosure. If anything, the hospital did everything wrong that day to gain our trust. This problem could have been potentially solved by sound public relations and communications practices but instead, the hospital staff made us felt like we were the enemy.

When I first saw that young woman’s reaction when we declined to sign the consent form, and her subsequent looks after that, I knew that I had made the right choice not to sign the paper. She carried a look that spelled, “They have AIDS. That’s why they’re not signing the paper.” She was very awkward with us. She would tense up whenever we appeared before her. When we went to collect our test results a week later, we felt unwelcomed. The doctor who went through our report dismissed me when I told him that I thought I felt a lump on my neck. He did not even feel my neck. He behaved as if he couldn’t wait to get rid of us.

Act 342, Section 10 (2) is the clause that compels every medical practitioner to notify the government authorities if he/she is aware of the existence of any infectious disease. Under the same section, it also compels anyone, other than a medical practitioner, to do the same. This means, if I know my work colleague has HIV/AIDS, I must report this to the authorities.

In the United Kingdom, the General Medical Council states that a disclosure of HIV positive patient to anyone other than a healthcare professional is unlawful. Their Data Protection Act provides legal redress to people living with HIV/AIDS if their confidentiality rights have been breached. In Malaysia, there is no such law yet unless the personal data is used for commercial purposes.

In the United States of America, hospitals do report to the US Centres for Disease Control and Prevention, but only after they have removed all personal information from the patient’s record. This is mainly because the federal and state funding for HIV/AIDS is often targeted at areas where the epidemic is strongest.

An American survey revealed that one-third of 20,000 respondents knew at least one person who is afraid to take HIV test for fear of prosecution if they are tested positive. More than 60% of Americans do not know whether their state has a HIV specific disclosure law. Accordingly, many people at risk may prefer not to get tested for HIV rather than risk being accused of or criminally charged for non-disclosure if they are tested positive. In a similar survey, when asked what motivated people to disclose their condition, majority of them cited moral or ethical reasons; honesty, love, desire to protect their loved ones. Less than 1% said that the law is the primary motivation.

All these studies point to the understanding that having a disclosure law such as the Act 342, Section 10, does not help to reduce the risk of HIV/AIDS. On the contrary, it has significant repercussions because it stops people like my husband and I from getting tested and seeking appropriate treatment once diagnosed.

Driven by curiosity, I called two organisations* relevant to this subject matter for more information. I could not get through one but the other told me that I could get an anonymous HIV test for free.

“Total anonymity? How come the law doesn’t apply to you guys?”

“That’s because we’re an NGO. There are a couple of NGOs around that do anonymous testing. Do drop by and get yourself tested. It’s important.”

Free anonymous testing with an NGO versus a private hospital that doesn’t seem to give a toss, it’s a no brainer really who will have a more successful campaign against the spread of HIV/AIDS.

* The identities of the organisations have been deliberately kept confidential to avoid getting them into trouble with the authorities.

This article was first published on The Malaysian Insider on 5 March 2013.

It generated quite a bit of discussion on a friend’s Facebook. According to this friend, the local NGOs are not exempted from reporting to the Government Authorities if you’re tested positive for HIV. He also left a comment on my Facebook and here’s what he said:

“Also, at the NGO, you are testing live with a person, who then gives you the result. You are no longer anonymous to him. Some people don't go to such NGOs because they may know people from the community who are volunteers at the NGO. So actually, this creates a different problem. People who would go for such testing in spite of the social barriers (being recognised, reporting, etc) are already monitoring their sexual health -- even if some do test positive eventually. The problem is getting people for whom the lack of anonymity prove a deterrent. Some people also have to overcome the guilt of being judged for being irresponsible at such an NGO as these NGOs have been aggressive in promoting Safe Sex messages with moralistic overtones (you are irresponsible if you don't use condom, you are a slut if you have multiple sexual partners, etc). It is a lot to overcome for most people. In Taiwan, their anonymous testing works like this: you get your blood taken for testing and you are given a code and a phone number to call; you call the number and tell them your code and you get your result without needing to reveal your name at all.”

Another person left a comment on this article:

“As a matter of fact[ly], both Malaysian and Singaporean law requires medical practitioners to report patients tested positive for HIV. Both deport and ban entry to foreigners if tested positive while in the country.”

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