The clinical picture puzzled me though. The brother-in-law had been weeks in the hospital dying of tuberculosis and nothing could be done for him. He was moribund and in extreme pain. The family was financially and emotionally exhausted trying to provide care in the hospital.
Before the advent of effective anti-tuberculosis treatment, this would have been an ordinary picture of the tuberculosis sufferer. But these days, this is not a typical picture.
Let me clarify, lest people think I am a gossip. Much of my life as a doctor-activist is spent helping people understand what their doctors tell them. People tend to ask me to clarify what's going on. What usually happens is that I give them a range of possibilities based on what they understood. Then we plan a next set of questions to ask the doctor – should it turn out they did not understand much or not enough to make certain decisions. In this case, the real question was whether the brother-in-law should be brought home to die.
The most likely explanation I could think of for a rapidly progressing and incurable TB was that the brother-in-law's inability to fight the infection was a result of his having AIDS as well.
In the course of several weeks of helping my household staff member, I learned that this brother-in-law was gay. That he had been a very good family member and a chaste person until the last few years of his life. Eventually, his longtime lover decided to help by watching over him in the hospital, thus diminishing the need to bring him home.
In this case I do not know whether my urging to get him tested did any good. Because he did get tested and he did turn out to have HIV. I believe the hospital and the doctors handled this ethically and within the law. I believe they tested only upon the patient's request and revealed the results to relatives only with his consent.
As a result of this news, however, the dying man lost his caregiver. The longtime partner disappeared. The family itself was even more stressed and they have told no one about the real cause of their brother's death. Why? Because of the stigma. Not the stigma of his being gay, because he was out to both his community and family. But the stigma of having AIDS.
The number of people living with HIV is on the rise in the Philippines and should be a cause for concern. Most countries are actually seeing a diminishing incidence while the Philippines is seeing a rise.
Let me be clear yet again, I believe in testing. I believe people should get themselves tested voluntarily. The reader of this article, if he or she is between 15 to 65, should get tested at least once to know their HIV status if we are to follow the US Center for Disease Control. In the Philippines our experts encourage men having sex with men, sex workers and injection drug users to get tested.
We should get tested voluntarily because our law cannot force us and the law requires that results be kept confidential. And, for this illness, knowledge is life saving.
By the time we were able to test the brother-in-law, it was too late. If, however, you get tested while still healthy, the chances for a long and healthy life are there for you if you turn out to be HIV positive. All the medical literature and the testimonies of those who have gotten themselves tested in time tell me that there is everything to gain in getting tested.
Free, voluntary and confidential
I am writing this column and making an appeal because there is a political context here. The Department of Health is in panic mode and is thinking of doing mandatory testing for certain populations at risk and then using the test results to do case tracing.
There is this misconception, no doubt reinforced by my story, that HIV and AIDS are a “gay” problem. Presently, the majority of people testing positive for HIV since 2008 are among males who have sex with other males. Many of them are gay but there are also significant numbers who also have female partners. In other words the data make it unclear as to who the DOH would test as a “vulnerable” population.
Everyone is vulnerable in a sense, and thus the US guidelines now recommend voluntary testing for everyone within a certain age group. One of the doctors consulted for this column says, “Anyone who has sex should be tested.” I was also informed that the Philippine Coalition Against TB recommends that anyone who has TB gets tested.
Therefore, if mandatory testing happens, dear member of the intelligentsia reading this Rappler column, you are at risk of getting tested against your will. Because, “populations at risk” could be you. You may eventually get tested against your will, your partners may be told. Like the brother-in-law in my story, you could lose the care of your longtime partner who may decide to go away and be lost to you and your family. (Yes, I asked my household staff to inform the lover that he should get tested and get on the DOH's program and get free anti-retroviral drugs. But he never replied to their text messages.)
It could be me
I hate pressing the panic button on HIV and AIDS because it leads to draconian measures like mandatory testing. But I need to panic people about this threat to our rights that won't even solve the problem but instead make it worse. And if you dear reader think this is not your problem because you are educated and relatively well-off and not gay, an intravenous drug user or a sex worker, think again. Gay and poor is not the only profile of the persons testing positive for HIV in the Philippines. Young, heterosexual and relatively upper class? Yup, we have cases. Chaste housewife? Yup. Church-goer and family man? Yup. Doctor? Yup. Lawyer? Yup. Seminarian? Yup.
So that what I really want to say without scaring everyone is that, well, anyone want to join me? Let's go get tested. It might help reduce the stigma for others too if all sorts of people get tested. Let's post our “getting tested” pictures on social media.
Like all things in the medical literature, the DOH can cite studies upholding mandatory testing but my understanding of the literature is that most studies show that mandatory testing is a bad idea. I do not wish to paint Secretary Ona and the DOH as monsters though. At this point there remains respectful differences of opinion between the civil society organizations working on HIV and AIDs, people in the medical community and the DOH.
So let me make this appeal. Let us go get tested voluntarily so that Secretary Ona may be convinced that public education (I hope this column helps even just a bit), community action and free, voluntary and confidential testing is still the way to go. - Rappler.com
(Author's note: Special thanks to Mara Quesada-Bondad, Dr. Mediadora Saniel, Dr. Mary Ann Lansang and Dr. Edsel Salvana who were consulted for this column. Nonetheless, all views and any inaccuracies are mine alone.)
Sylvia Estrada-Claudio is a doctor of medicine who also holds a PhD in Psychology. She is Director of the University of the Philippines Center for Womens Studies and Professor of the Department of Women and Development Studies, College of Social Work and Community Development, University of the Philippines. She is also co-founder and Chair of the Board of Likhaan Center for Women's Health.