It’s Your Secret (a note on disclosure)

On a personal level, I think full disclosure is the ideal situation for any person living with HIV (PLHIV).

Of course, it’s easy for me to say since I’m one of the lucky few who have been able to publicly declare my HIV status and not have suffered because of it. Other people are not so lucky. Other PLHIVs have been kicked out of their homes, lost their jobs, their friends or partners; it’s a common refrain. This is not news. This is the sad and frustrating reality of our world. Being open about our HIV status does not guarantee our safety and security in this country.

As someone who is public about my status, I can say, though, that it is an ideal situation to be in because of the advantages that comes with living my life openly. I don’t have to lie about certain lifestyle changes that have occurred in my life — most notably, my sleeping hours and avoiding stressful situations — and I can take my pills openly. I don’t have to be discreet about it.

If I have a medical emergency, for whatever reason, the people around me are usually very supportive and helpful. They become extra nurturing, even, and watch out for me.

I think the most important thing is that I don’t have to hide this part of my life from the people who matter to me the most. My relationships are secure with regards to secrets. I am not keeping a secret from people I love and from people who love me. It makes things clear and keeps things simple.

On Full Disclosure

Being open about my status also meant that I had no choice but to reveal to any potential romantic or sexual partner about being HIV positive. Naturally, this made the conversation very awkward and uncomfortable. I’ve had my fair share of dates and hookups that never reached its full potential because some people are not ready to handle someone with HIV.

I don’t take that against them. If they are not ready, then they aren’t ready. 

It’s just something that I believe in. I contracted the virus because I was reckless enough to sleep with multiple partners and not use protection. I bet if I knew someone had HIV back in 2004, being an ignorant young 20something, I probably would not have slept with him either. I’d like for people to know what they are getting themselves into with me.

So, in my opinion, full disclosure is important. In the original HIV Law, Republic Act 8504, the language of the law made it so that a PLHIV is “obliged to disclose his/her HIV status and health condition to his/her spouse or sexual partner at the earliest opportune time.” The language is not clearly defined. It is a single sentence and it is phrased in a way that it doesn’t insist on it, so there is no way to determine if you will be breaking the law by not disclosing.

In the past 11 years since diagnosis, I have always disclosed my HIV status to any potential romantic or sexual partner. I felt it was necessary. I felt it was my obligation, But over the years, my stand has changed.

Again, it’s easy for me to disclose because I’ve never been discriminated upon before. I have never suffered from stigma. But now that it’s been eleven years, and I’m not in the public sphere as I used to be, there are people out there who don’t know about my status and I no longer tell them, even if we enter a sexual relationship.

I don’t have to. Republic Act 11166, the Philippine HIV and AIDS Policy Act of 2018, is much more comprehensive and better defined in its terms and terminology. Article VI, Section 47 states “Any person who, after having been tested, is found to be infected with HIV is strongly encouraged to disclose his health condition to the spouse, sexual partners, and/or any person prior to engaging in penetrative sex or any potential exposure to HIV.” The section also includes a clause on how to disclose, which creates a safeguard the PLHIV from any sort of reprisal.

The reason this becomes beneficial to PLHIVs is the use of the phrase “strong encouraged” rather than “obliged.” 

“Obliged” is such a passive-aggressive term. It neither insists nor does it provide any alternative action. “Strongly encouraged” denotes that one is not required to inform them. It respects the notion that disclosure is solely upon the discretion of the PLHIV. And if the PLHIV has an undetectable viral load, then s/he is no longer a threat to anybody for being a “potential exposure to HIV.”

So who do you tell?

Which brings me back to my original statement: full disclosure is an ideal situation for any PLHIV. I think the amount of PLHIV who are living their lives with their status out in the open is a strong measurement for how progressive a society is. If the PLHIV community are unafraid of reprisal or discrimination, then we have a society that works for the betterment of everyone in it.

But we don’t have that right now. Conservative thinking and old school beliefs are still pervasive. These values diminish the quality of life for many members of various communities who are marginalized and live on the fringes.

And because of that, a lot of poz still live with their status kept secret.

But it’s always good to share that secret with someone. HIV is manageable but one shouldn’t have to face it alone.

Always tell someone. Definitely, your doctor. Develop and nurture a strong relationship with your doctor; someone who can address all your medical concerns and who can insist on practical solutions to any of your medical issues. Form a support group with other PLHIV who understand what you are going through.

And then, be very discerning, and choose someone from your inner circle. Be it someone in your family or from your close circle of friends. This person can help you out of situations were your HIV status may be put into question. You will have a friend who can help you avoid certain situations and certain questions that might reveal your HIV status. It helps with the stress because keeping a secret like HIV can be very stressful.

And we want to stay away from stress.

Poz has a great article on the basics of disclosure (https://www.poz.com/basics/hiv-basics/disclosure) that you might want to take a look at if you have any questions on how to disclose and why.

But let me reiterate, the choice is yours. It’s your secret and you are not in any obligation to reveal this information to anyone. It’s no longer illegal not to; it’s not a law. It is strongly encouraged. But again, it is up to you.

Blood Makes Noise
Wanggo Gallaga
Wanggo Gallaga has been writing professionally since he was 14. He’s a scriptwriter, poet, and teaches Scriptwriting at De La Salle — College of St Benilde. He was diagnosed with HIV in August of 2008.

Editor’s Note

RAA 11166 & IRR states:

Section 23 HIV Prevention Measures.

  • The PNAC, in coordination with the DOH, LGUs, and other relevant government agencies, private sector, CSOs, faith-based organizations, and PLHIVs, shall implement preventive measures, including but not limited to the following: 
    • Establishment and enforcement of rights-based mechanisms, which include psychosocial counseling: A. to promote HIV status disclosure to partners; and B. to strongly encourage newly tested HIV-positive individuals to conduct partner notification.

Section 47 Disclosure to Persons with Potential Exposure to HIV.

a) Any person who, after having been tested is found to be infected with HIV, is strongly encouraged to disclose this health condition to the spouse, sexual partners, and/or any person prior to engaging in penetrative sex or any potential exposure to HIV.
b) A person living with HIV may seek help from qualified professionals, including medical professionals, health workers, peer educators, or social workers for disclosing this health condition to one’s partner or spouse. Confidentiality shall likewise be observed.
c) Further, the DOH through the PNAC, shall establish an enabling environment to encourage newly tested HIV-positive individuals to disclose their status to partners. 

Read more on the new HIV Law (RA 11166) and the Implementing Rules and Regulations here: http://www.ship.ph/republic-act-no-11166-the-new-aids-law/

Undetectable Is Our Duty

In the past few years, medical experts have coined the term U = U. It means undetectable equals untransmittable. When a person living with HIV (PLHIV) is taking his antiretroviral treatment (ART), he suppresses the HIV in his body so that it becomes so small, it can’t be detected.

Because the amount of virus in your body is so low, science has determined that you cannot transmit HIV to another person. Experts have even gone as far as to say that a PLHIV who is undetectable and continuously takes his ART, he cannot transmit the virus even if they have unprotected sex.

And I’ve known this for quite a while but I’ve never really said it out loud. Not in the many talks I’ve been asked to give in forums and seminars that I’ve been invited to.

I’ve always been afraid of reckless behaviour. That is what got me in this situation in the first place. Fifteen years ago, when I was younger and less cautious, I had an active sex life and while I had access to condoms, and often enough even kept some at home and with me at all times, I would agree to go condomless with many of my partners because they didn’t want to use it.

I wasn’t being smart. And now I have HIV.

I have been taking ART religiously since 2011 and by 2014, I was undetectable. A few years later, my doctor confirmed the news about U = U and I had known for quite a long while now but it was something I shared only to a few people. Because deep down inside, I didn’t want people to ever get careless or reckless again.

I didn’t want people to leave to chance something as important as their health and safety.

What I’ve discovered only recently, from reading articles from advocates here and abroad is that U = U is an important step towards decreasing the number of HIV infections every year. Undetectable equals untransmittable is a necessary step towards protecting the community and everyone from HIV.

Many members of the PLHIV community are not accessing or taking their ART consistently. According to the HIV registry, as of April 2019, only 37,091 PLHIV are on ART. According to the same statistics, there are 66,303 reported cases of HIV infections.

If my math is correct, that approximates to only 55% of the PLHIV population who are taking ART. That’s 45% who are not on ART and we can assume their viral load is not undetectable. And then there is the estimated number of PLHIV who are not recorded because they haven’t taken the test yet.

And if these PLHIVs are still sexually active, it means they are still able to transmit the virus if they have one reckless, careless encounter.

Undetectable means untransmittable. It means we can reclaim our sexuality and our sex lives without fear of passing on this virus to anyone else. To become undetectable, it means we are accessing our ART and it means we are seeing our doctors routinely and, hopefully, it means we are taking care of ourselves.

I was afraid that if I talked about U = U, it would mean that people in the community would return to their past behaviour thinking everything was going to be okay again. I was thinking short term. I wasn’t thinking about the big picture.

What is the big picture? If everyone who has HIV is on ART and their viral load is undetectable, then no one will ever have to get HIV again. Stop the spread from the source. But at the same time, it means we protect the lives of all the PLHIV out there because undetectable also means that virus is not destroying their immune system.

U = U really equates to life. A meaningful life. A long and healthy existence with an active and safe sex life that’s free of fear. Of course, I’d still prefer that people use condoms because there are other sexually transmitted infections out there than just HIV but it means we don’t have to worry anymore about the one we already know we have.

I’ve been so afraid to talk about U = U for so long now because I can detect some level of guilt for having been sexually active for so long before finding out I was HIV positive. I still haven’t forgiven myself completely for my part in my infection. There’s always just a little bit of guilt and self-hatred that lingers even if your life is okay again, like mine is. That never goes away.

But I’ve let it stop me from talking about U = U, which I’ve finally come to understand how important it is to the community and for everybody.

We need to get every PLHIV on ART and we need to get them to an undetectable viral load. Because that’s how we can stop HIV from spreading.

I was quiet about it before but I’m not. My viral load is undetectable. I’ve been undetectable for over five years now. I cannot transmit HIV to anyone. It is my duty to stay undetectable for as long as I live.

Blood Makes Noise
Wanggo Gallaga
Wanggo Gallaga has been writing professionally since he was 14. He’s a scriptwriter, poet, and teaches Scriptwriting at De La Salle — College of St Benilde. He was diagnosed with HIV in August of 2008.

Message from the Editor: For more info on U=U please see https://www.niaid.nih.gov/diseases-conditions/treatment-prevention

Safety First: Why Condoms are Essential

Do you carry a condom with you wherever you go? If not, how accessible would one be if you were to need it?

This question, of course, applies strongly if you are sexually active. And as many accounts have been shared, there are many people who have narrated to an unexpected sexual encounter that have led to unprotected sex because they were not prepared.

It is these sudden, unanticipated sexual encounters that have led to HIV infection. All it takes, really, is one chance moment; a passionate tryst with a stranger or a romantic partner that can lead to HIV, or any kind of sexually transmitted infection.

Last year, I was part of a team that produced a documentary called “HIV Rising,” and in that documentary we spoke to Dr. Ditangco of the Research Institute of Tropical Medicine and I distinctly remember that she had theorized that the reason why condom use is so low in the Philippines is because condom use is a learned behaviour.

“Based on our studies,” she shares, “if a man’s first sexual experience is without a condom, it is unlikely that he would use a condom in his subsequent sexual encounters.” Condom use, as per the studies of RITM and Dr. Ditangco, has to begin early — as early as the first sexual experience — for it to become a habit or a learned behaviour. Out of the many reasons that people have given as to why they don’t use condoms, the most frustrating is “because it doesn’t feel good.”

As adults, one would think that the switch to protected sex would be automatic after all the news about the growing number of monthly HIV infections but it hasn’t changed our sexual practices at all.

In the article “The Real Reason Why People Don’t Use Condoms” from Very Well Health by James Myhre and Dennis Sifris M.D., they consider “ignorance and apathy” as “knee-jerk reactions” and these don’t really dig deep into the problem that is at hand. They identified, in their article, three causes for the low usage of condoms by men and women.

The first is what they call Perceived Risk, which deals with our own perception of how vulnerable we are to infection. This varies from person to person but it includes all our misconceptions about individuals and groups who may or may not be HIV positive. We make quick assessments from how people look and their reputation and we make pre-judgements as to whether they could be positive or not. This involves biases we may have involving class and status. How often have we heard, “He looks so healthy, he can’t possibly be HIV positive.”

It’s these misconceptions that can lead us to disregarding the need for a condom.

The article also mentions Condom Bias, which has a lot to do with Dr. Ditangco’s research findings. Condoms themselves have their own reputation and the article states that oftentimes, people are afraid to use condoms because it might make their partners think that they are promiscuous or that they might be unfaithful. The writers have also accounted for instances when people lose their erections the moment they put on a condom and that there have been findings that people say that it feels or tastes bad.

Condom Fatigue is what the article calls “general weariness felt by those tired of condom use.” Protected or safe sex can take its toll on committed users and the growing knowledge that an undetectable viral load or usage of PrEP can render condoms unnecessary.

But even if PrEP or a partner who has an undetectable viral load can prevent transmission, condoms are still effective to prevent other sexually transmitted infections. It’s not just HIV that we have to be cautious about. Condoms are effective, no matter what anybody says. And while abstinence is still the best way to stay away from any form of STIs, it is not a practical solution for many people.

There is nothing wrong with an active sex life but it has to be protected. Safety first.

Blood Makes Noise
Wanggo Gallaga
Wanggo Gallaga has been writing professionally since he was 14. He’s a scriptwriter, poet, and teaches Scriptwriting at De La Salle — College of St Benilde. He was diagnosed with HIV in August of 2008.

Is the Future of ARV Treatments Injections?

One of the biggest life changes I had to make, after my HIV diagnosis, was adapting the habit of taking meds twice a day. But HIV meds, called Antiretroviral Treatment or ARVs, aren’t any ordinary medication. They follow a strict schedule. And you have to do this religiously to manage the virus.

For someone who has never taken pills before, it has definitely become a chore.

Last March, there were several articles in various publications and websites that presented new studies on replacing regular ARVs with monthly injections. From a report from Tech Times by Diane Samson (https://www.techtimes.com/articles/239367/20190309/injections-better-than-pills-at-treating-hiv.htm), two international research projects “confirmed that getting monthly shots is as effective as taking two pills a day.”

Then the following month, The Body released an article by Kenyon Farrow (https://www.thebodypro.com/article/long-acting-hiv-treatment-is-coming-health-care) of similar studies broaching into phase III trials for Edurant (cabotegavir and rilpivirine), the only long-acting injectable ARV treatment that has reached this phase of trials. According to POZ (https://www.poz.com/article/viiv-applies-approval-first-longacting-injectable-hiv-regimen), Viiv, the company who manufactures cabotegavir, have already filed for FDA approval and we might seeing the rollout of this new procedure by the end of the year in America.

Does that mean an end to constantly be carrying my pills whenever I leave the house? Will I no longer freak out if suddenly remember that I haven’t taken my pills yet at the prescribed time frame?

These two articles are just examples of the many articles found online about various studies in trying to make anti-retroviral treatment more convenient and aid in patient’s adherence to their medicine.

Anti-Retroviral Treatment or ARV are pills that people who are living with HIV (PLHIV) take daily to suppress the spread of HIV and help manage the virus in the body. Consistent use of ARVs can keep a PLHIV’s viral load to a level known as undetectable, which means that the virus cannot be transmitted because the amount of HIV cells are extremely low.

Adherence to the treatment is one of the leading causes as to why many PLHIV experience a resurgence of the virus in their system. Inconsistent ARV use can lead to the HIV cells adapting and gaining a resistance to the treatment. Keeping to your regiment is vital to managing this condition.

But there are many reasons why adherence is a challenging thing. Many PLHIV have not disclosed their status to people and being able to take the pills discreetly is a known obstacle, especially for people who do not live alone. Also, members of the community are given three to five months worth of medicine and changes in your schedule can sometimes get in the way of your visit to replenish your supply. You may have scheduled your next pick up way in advance but you can’t predict the future and there are some events that just pop up and cause issues with getting your meds.

And oftentimes, and I am guilty of this, there are days that get so hectic and stressful that you just forget to bring your pills with you when you leave the house to go to work.

Taking your ARV with you is just part of your routine and if you have been living with the virus for a long while now, it’s something you take for granted. But there are days when it slips your mind. It’s carelessness. You can get caught in the moment. But it happens.

So these new studies on replacing the regiment of daily pills (depending on your treatment, it can be twice a day or once a day) with a monthly injection would be a great convenience for the PLHIV community. For those who are not public about their status, there is no need to have to discreetly take their medicine when amongst friends and if they live with other people, they don’t have to hide their bottles of pills.

Removing the stress of keeping with your regiment on a daily basis is one way to really help the PLHIV community. It’s one more thing they can take out of their to-do list everyday and can help them maintain their secret if they wish to keep their status discreet.

But the medical community is also studying the possible negative side of these monthly injections like the possible cost of this method and what happens if the PLHIV misses their scheduled appointment? At the same time, injectable Edurant has to be injected in the buttock muscle (gluteus medius), which means additional training and staffing for all the clinics that will be administering these treatments.

Right now, many of these studies have been working on trial runs and have yet to be made available to the public. And while we are still far away from any sort of cure, studies like these which can lead to better treatment will alleviate the burden that comes with a daily regimen and can help PLHIV keep their undetectable status.

Blood Makes Noise
Wanggo Gallaga
Wanggo Gallaga has been writing professionally since he was 14. He’s a scriptwriter, poet, and teaches Scriptwriting at De La Salle — College of St Benilde. He was diagnosed with HIV in August of 2008.