The Cure Chronicles: HIV with Benedict Bernabe

The Cure Chronicles is delighted to welcome Benedict Bernabe to the show! Benedict is the Executive Director of The Red Whistle which is a volunteer organization promoting HIV awareness, SOGIE equality (Sexual Orientation and Gender Identity or Expression), mental health, and LGBTQ+ rights. Benedict has been involved in HIV advocacy for the last ten years, including work with UNAIDS Philippines in 2010 and as trustee and officer for various HIV nonprofit organizations. Benedict is also a Vinyasa yoga teacher based in Manila, Philippines. He started the practice with Yoga for Life in 2010, a community-based organization that offers yoga as a complementary therapy for people living with and affected by HIV. Benedict has a Master of Development Studies degree from the University of Melbourne, Australia, and is currently pursuing his Juris Doctor degree at the University of the Philippines College of Law.

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Jeff: Ben, thank you very much for joining us on the HIV Cure Chronicles today.

Benedict Bernabe: Thank you so much, Jeff. I am very excited to be here.

Jeff Galvin: Thanks. Right off the bat, you're the first person that I've interviewed from the Philippines. I have talked to people in the Philippines before because there's a lot of people that are aware of our work and maybe even hopefully some of the people in the Philippines that follow us on social media will be watching this show.

And it's been hard to get an impression of what things are like over there because I have had a few meetings with people that sometimes were FaceTiming me on their cell phone from a hut, in a very rural area and had real difficulties getting medication and even getting diagnosed for HIV.

And, given that this is the HIV Cure Chronicles, that's a big focus for us: the experience of people diagnosed with HIV. You're an advocate for them. But interestingly enough, you're one of the rare people that I have interviewed that is not living with HIV themselves, that is putting this kind of effort into reducing stigma and helping people to find treatment while also working on a lot of LBGTQ rights and awareness and stigma reduction there.

So you have an amazing scope of work that you do, but what inspired you to jump into this and how did you end up involved with all of these initiatives? 

Benedict Bernabe: You know what, Jeff? I think it's a very common story in HIV advocacy that we always come into the advocacy because there's someone close to us who got infected with HIV suddenly. And in my case, and in the case of the Red Whistle, which really started out as a group of friends, our friends started getting infected with HIV around the early 2010s, the late 2010's, pretty much in the same way it happened in big cities in the US like in the 1980s, like New York or San Francisco or like Sydney or London. Many of your gay friends are getting infected with HIV and not knowing where to go or what to do, and the only people you have are your friends.

So that really, it is a very basic need. Because for us, we want our friends to survive and we want our friends to live a good life. And sadly, not all of them got the treatment or not all of them got the testing in time. So that's why we started the Red Whistle back in 2011 and among other organizations. Actually, there are many community-based organizations started out by our other friends focusing on other HIV-related things like some of our friends are focused on testing and treatment. We do testing and some of our friends do community support or community-based psychosocial support.

So it really is based on friendship and based on that desire to make sure that the people that we love survive. 

Jeff Galvin: Yeah, I think there's so much power in love and empathy, and so much motivation and also so much reward in helping other people. I think it's an underappreciated type of feeling of success and feeling of just fulfillment, just the service of other people.

And I'm so happy to hear you bring that theme out right away. It wasn't your problem but it was a problem for people that you cared about, and now you're making a difference in that, maybe even for a lot of people that you don't know, directly now through your work.

Jeff Galvin: Let's go down that direction a little bit further. Interestingly enough, you said it started to take off around 2000, 2010, so there were reliable treatments at that point. In the eighties in San Francisco it was a death sentence, or in New York it was a death sentence.

And then around '94, '95, it became a life sentence of taking antiretrovirals and they were very painful, handfuls of pills back then. And then when you get into the 2000s, you start getting down to much less volume of pills and now it's one pill a day.

Even the side effects have been greatly reduced. And there's even now new versions of antiretrovirals where you get an injection every couple of months or something, and they're working on even longer ones. So the picture has really changed. And it sounds like in the Philippines, this epidemic really exploded there at a point where there was some understanding of HIV.

But then it also sounds like even though the Philippines came in later on the learning curve, it didn't necessarily mean that everybody could get tested and everybody could get treated. So tell me, back then, and then coming forward till today, what is it, what's the difference for somebody living with HIV in the Philippines?

What are they experiencing in terms of the pressures on their life, including, whatever you think is significant and their ability to go ahead and become treated for this. 

Benedict Bernabe: You know what, Jeff? We really learned a lot from the epidemic response in the nineties. We did have a good law back in 1997, that's one of the first HIV laws in Asia, and it became like a model HIV law for lower and middle income countries.

Benedict Bernabe: But the epidemic was focused on female sex workers and migrant workers. So the government thought that we're getting transmission among female sex workers under control. We have a good program for migrant workers, so maybe we're doing really well. As we know during the 2000s, 2010s, global travel became a lot more accessible, like with all of these low-cost carriers and everyone can basically go anywhere.

And what we didn't anticipate was that the epidemic would shift to men who have sex with men. And I think it was going on for a good maybe five, six years, maybe more. We started seeing the trend around 2006 or 2007. But we didn't get the full picture until around 2010, 2011, when we saw every year the number increasing by 100%.

So yeah, at that point, that's when we realized that we don't have a program for gay men or for men who have sex with men. And a lot of the barriers to getting access to number one testing and then treatment is the stigma around men who have sex with men or, gay men, LGBTQ community in general.

And the Philippines is predominantly a Roman Catholic country. There has been a lot of conservative ideology behind the health programs for some time. And especially since HIV is a sexually transmitted infection, it makes it a bit more difficult to introduce interventions that are open to men who have sex with men and the LGBTQ community.

Benedict Bernabe: But we've progressed a lot since that time. In the last 13 years the progress has been amazing. It's just unfortunate that the pandemic put a halt to some of that progress. But I think anywhere in the world, the pandemic caused quite a bit of a crisis in the public health sector anyway.

But for example, I have access to prep. I am on prep and it's available for me with the help of USAID. We're trying to find ways to help people get access to prep for free for a long time in the future as well. Treatment is already free for people living with HIV.

Testing is also free but of course we need to get more people tested to get to the UN goal of 95% people knowing their status. But I would say in the last 10 years it has improved quite a lot and significantly. 

Jeff Galvin: That's fascinating. That the initial epidemic began in sex workers and migrant labor and that the Philippine society or the government mounted a, it sounds like a fairly unbigoted and effective response.

And then that they had more difficulty circling back to the gay community and men having sex with men, to find a parallel solution. That is really fascinating to me because you're a study between doing it right and doing it wrong and doing it right for the right reasons and doing it wrong, for the wrong reasons.

That the need to put this into a religious perspective or whatever was delaying handling a public health crisis. And because you cannot keep that disease contained to certain populations, it is obviously going to threaten some virus and there's gonna be transmission between people that are doing things that are quite natural for them to do, and that's gonna move across all different sexual orientations and genders and economic classes and all those things. So this is really a global problem that is everyone's problem.

Even the way you talk about how what you're trying to achieve in the Philippines of 95% of people knowing their status, and the fact that UNAIDS is in there and trying to deliver cheap or free medication to people to reduce the spread. This is in recognition of the global impact of HIV and the fact that we are connected all as one community.

The United States, one of the problems that people face if they're living with HIV, is that they're automatically assumed to have certain sexual habits, which frequently would not be true.

But at the same time, that's part of the stigma. And then there's some stigma on top of that, about people's judgment of those things. It's really a complex situation that needs a lot of work. What about in the Philippines? Where are you in that arc?

Benedict Bernabe: You know how it is? I think in the U.S. you have urban areas that tend to be a bit more accepting and maybe some of the rural areas are not as up to date with their information. But it's very similar in the Philippines where we see a very big concentration of the HIV infection in the urban areas.

And there will be a bit more acceptance in urban areas, but there really is a lot of stigma. And I think it's really rooted in ignorance mostly because not a lot of people get access to information about HIV and we do have some statistics coming up among young people that their level of sexual education awareness and also HIV awareness has dropped in the last 10 years. 

Jeff Galvin: Yeah, you're expected to go the opposite, don't you? 

Benedict Bernabe: Exactly, that kinda dumbfounded me. Why? Nowadays you have more access to information, but less about HIV and less about sexually transmitted infections. So more access doesn't really mean quality access to information as it turns out.

And we see that a lot of the stigma that people living with HIV experience is rooted in ignorance of people who still think that they can get HIV by sharing a space with them or having a meal with them. You will still see, you will still hear of some of these cases, but in general I think the response of people is a bit more compassionate.

And we only hear those anecdotal cases of really really outright discrimination because they get reported more and more actively nowadays, not because of the activism of people living with HIV. We do get to address these, but it doesn't mean that they're not there silently.

I still think that there's still a lot of work to be done, especially in terms of information and education. 

Jeff Galvin: That's fascinating. From what you're saying, I almost get a sense that the Philippines could be ahead of the United States in terms of education, compassion, and empathy. And even starting to break the stigma, the misunderstandings about HIV.

Jeff Galvin: You have this publication, The Red Whistle. You're the executive director. It's a great looking online publication with a lot of really interesting articles in there.

Not a hundred percent focused on just addressing stigma directly, but more actually, normalizing it, normalizing the whole concept of sexual identity and orientation and things like that. But anyway, a great magazine that everybody should check out,

So tell me about that publication. How did it get started? Yeah. You've been there for a while. Were you a founder or did you come in later and, what's your, what's the emphasis of that work? 

Benedict Bernabe: So The Red Whistle is also an organization that I co-founded with my friend who is a photographer.

His name is Nico La Cosme, and we have a lot in common. We started it because our common friends were the ones who were getting infected by HIV and it really started out with a photo campaign. I think it's before we were found, before we started the organization. We have this project called the Headshot Clinic, which uses Facebook profile pictures as a way to advocate for us for HIV.

So since Facebook started at around the same time, around 2010, we tried to use this space, this online space to make people more aware about HIV and make them feel that HIV is something that should be talked about. Because when we started, no one wanted to talk about HIV at all.

Like people feel that we can only talk about HIV in hushed tones. So we really wanted to open the conversation by using art. And we also used a lot of celebrities in the Philippines because there's a very big celebrity culture and fans follow whatever their idols do online or on TV or in movies.

So we thought that this is a good way to start the conversation, have someone basically unassailable because they're a movie star or a TV star and then put them on social media talking about HIV in plain language and we'll start the conversation rolling. And we've been doing that for a long time now, for 13 years.

Jeff Galvin: And are you, I guess you're probably seeing quite a bit of progress from that, right? 13 years of having celebrities willing to talk openly and educate people on HIV I think would have a tremendous impact. I don't know that we get that much attention in the United States anymore. But that's still going on in the Philippines, huh?

Benedict Bernabe: It's really amazing how much the tone of the conversation has changed around HIV. When we started, we really couldn't get people to say sex on video, on Facebook, let alone HIV. But now the stigma around talking about it has shifted a lot and people are openly talking about it.

A lot of people living with HIV are coming out publicly about being a person living with HIV and I think that's a good measure of the kind of change that we want to see. And honestly, it doesn't feel like 10 years or 13 years because I meet a lot of young people who all say that the work that we did had an impact on them.

So everything, the work always feels fresh every time. Whenever a young person asks me about HIV I know that the work isn't over yet, and the work feels like it's something that needs to be carried on, and there's something, there's a new element that you can always add to it. 

Jeff Galvin: Yeah. Having that other purpose of breaking the stigma of LGBTQ as well.

Are you seeing a corresponding progress in LBGTQ sort of openness and acceptance and normalization?

Benedict Bernabe: The way that we got into LGBTQ advocacy is through HIV advocacy as well. It's surprising because you'd think that it's the other way around.

Like you start off advocating for LGBTQ rights and then HIV people, with HIV but, the way that we experience it is that we're having a lot more pushback when we talk about LGBTQ rights. Even up to now it's a lot more challenging than HIV work. And I'm trying to understand why it's a lot, it's a lot more challenging.

It was very easy to pass the revision of the old age HIV laws. So we had an HIV law in 1997 as I was talking about, we have a newer law in 2018 that went through our Houses of Congress, the Senate fairly easily. But right now we are trying to pass something like the Equality Act in the US.

The Equality Act is pending in the Senate and in Congress right now. And we have legislators who are also religious leaders in the house trying to push back against the bill. They've actually successfully pushed back in the Senate and it's frustrating because we've been trying to get that bill through for the last 23 years.

But we still haven't gotten any progress. But with HIV it was a lot easier and we're still trying to understand the stigma behind discrimination against LGBTQ individuals. I wouldn't say there's the same amount of progress. 

Jeff Galvin: Really. That's interesting. And quite frankly, there's been some very unfortunate sliding back in LBGTQ equality in the United States. It tends to be a moving target and sometimes it goes back and forth, but it sounds like what you're saying is that you're finding that making the steps forward have been more difficult than you anticipated.

And I also think what you're saying is ironic. They fear that LBGTQ might be contagious when it's not right. And the disease that is contagious, they're handling more maturely and more open-mindedly and more scientifically.

You think about that people that are well-treated with HIV are completely harmless to those around them. They have a personal burden of having to suppress the virus. And I think a lot of people do that without a huge impact on their lives.

They're productive citizens and can enjoy life and go on and achieve all sorts of things. So they're no danger to anybody around them. It's even more true about people that just have different sexual orientation, isn't it? How somebody identifies, it's really interesting why people have a knee jerk reaction to that when nobody's forcing them to change their opinion.

They're just asking for freedom to be themselves. You used an expression SOGIE which I don't know if that is that a globally accepted acronym? Can you explain that?

Benedict Bernabe: In our advocacy work we use se SOGIE, or Sexual Orientation, Gender Identity, Gender Expression, and Sex Characteristics. I think the principle behind using this terminology when it comes to advocacy, we want it to be a bit more inclusive because everyone has a sexual orientation as opposed to just saying that this or this law is for anti-discrimination against the LGBTQ community.

What we're trying to pass is a law that prevents discrimination based on your sexual orientation, whether that's your heterosexual or homosexual or whether you identify as male or female, because we all identify as a gender and also in terms of their gender expression and sex characteristics, because we don't have a law that covers all of these.

That protects against discrimination based on these categories. So we have protection against discrimination if you are a person with a disability, for example, or if you're an elderly citizen. But we don't have anything that prevents discrimination based on sexual orientation, which happens a lot in schools and in workplaces.

So if it's something that prevents people from accessing education or earning a living, I think it's worth protecting people from that kind of discrimination. But a very small number of legislators think otherwise. Unfortunately, some of these legislators are the ones who control the proceedings in the house and in the Senate. And it's quite hard to pass rules if people are trying to get you down with a technicality. 

Jeff Galvin: I think that that's a great idea, to generalize it more like that because, why come back and wage the same fight every time you discover that there's some exception that you forgot to include, right? So that's a great idea.

Benedict Bernabe: When I started in the HIV advocacy as I mentioned, there were really no organizations or no services available.

So another group of people who later on became my friends, they started Yoga for Life, which is a complimentary yoga therapy program for people living with HIV. So this is why we always say that it's complimentary because we emphasize that you have to go through your treatment, you have to get tested and to have the other aspects like the non-biomedical aspects, like mental health, psychological well being, emotional well being, and community care.

We have this community of people, regardless of status. You just come in. If you believe in supporting people living with HIV, you can come in practice yoga basically for free, but people donate to the organization so that it continues. And up to this day, actually it continues all up to this day.

So we started with two teachers. I'm a yoga teacher myself because I trained so that I could teach in Yoga for Life. So we started with two teachers, and as I mentioned, by 2010 we were starting to get more and more people diagnosed with HIV. So we started having more classes, we needed more teachers.

The community grew. I was part of the organization. I still am actually a part of the organization, although I'm not actively teaching or managing it. And it continues to be an important reminder of people living with that. People living with HIV are people first, and it's not just about getting them through treatment and testing, and then you're done. You have a whole person behind the diagnosis and you have to take care of the other parts of that as well. It's actually very close to my heart because when I go there, it's really about camaraderie.

It's about taking care of each other, empowering people, reminding them to take care of themselves, of their own body. And they are in control. They can embody themselves and be in control of their own body. 

Jeff Galvin: Yeah, I think that's a great idea, the holistic approach to dealing with really any challenges in life.

But I think that in HIV, the psychological burden is quite high. And there's self-stigma as well, and the reminder every day of taking that pill, and somebody that's living with HIV can start to lose track of the fact that no, they're still a normal person with just this one challenge in their life.

What are the other things that you're wrapping around, all these big things that you're doing in terms of your work and your personal fulfillment and your personal goals surrounding the LBGTQ community and the HIV community.

Benedict Bernabe: I've also done some work in helping policy change happen in terms of making sure that the HIV legislation that we had passed in 2018 gets implemented. And part of this was very apparent during the pandemic. So our law got passed in 2018 and it was a very short runway for programs to start getting rolled out. 

We saw a lot of gaps in the program during the pandemic, and one of them is to get access to treatment when in a lockdown. And I'm pretty sure the rest of the world didn't know how to do it anyway, so one of the projects that we did during the pandemic was called Upland ARVayanihan.

So that's a portmanteau between ARV and a Filipino word bayanihan, which means "to be a hero for someone else," or working together. So basically it's a volunteer run program from in the early days of the pandemic. And not sure if you still remember how in early 2020 when we are all locked down pretty much.

But we didn't realize that it would be a big problem if you're living with HIV and your treatment facilities are in the next town or in the next city. I'm not sure how it happened in the US, but when we were in lockdown we had like checkpoints in every city. So I cannot leave my local municipality without a permit to travel.

And so people living with HIV who worked in one city and lived in another, for example, they usually get their treatment near where they work because they don't want their neighbors to find out that they're getting treatment for HIV. So getting the treatment across that municipal border is one of the biggest challenges that we've had in the pandemic. Some of them are very short distances, like four kilometers away from each other, but without public transport, without free access to travel, it can mean someone's life or death or life or deterioration of health. 

We worked with the government, we worked with local government units. We worked with a lot of our friends in the NGO community. We worked with our National Department of Health first to come up with guidelines to allow people to get treatment from the nearest treatment hub to them.

And if that's not available, we found people to basically ferry the drugs, ferry the ARV from one city to another, or sometimes from one province to one another. 

Jeff Galvin: For people that could get a travel permit basically, and go through those checkpoints, would then agree to transport HIV medication. What a terrific idea. That's a great solution to that problem, isn't it? 

Benedict Bernabe: And some of these people just really, they just really wanted to help. Like they're not healthcare workers. They don't work in the public health system. They just had a car and they wanted to help.

And so we got their permits to travel. We were able to get the grant so that we can give some people some gas money and reimburse them if they'll take it, but some people won't take the money. And it was amazing at one point in a very far island province, so we had to. The drugs from Manila, the capital city, and then had to ferry the medicines over a hundred kilometers just to get it to the patient.

But I think that is really what the community brings out in you. I think when you really are connected to the community, you would do anything to help. So we were very lucky to have that kind of community in different means. 

Jeff Galvin: Yeah, it sounds remarkable. I gotta say that this discussion hasn't been quite like what I expected, because all of my contacts with the Philippines in the past have been people that, like I said, were in rural areas. I did not realize how organized and how advanced all the advocacy was in the major cities in the Philippines, and what a terrific job.

I almost feel like this is a model for areas within the United States that could raise their game and be more supportive, more empathetic, and to do some of the things that your organizations have been doing to improve the life of everyone, whether they're LBGTQ or whether they're living with HIV. That whole theme of love and empathy, service and the feel good where people don't even want the gas money for doing this, being a hero, right?

And bringing meds to people that need it really is remarkable to hear the great stuff that you're doing. And I think the magazine gives you a sense of that sophistication. When I look at The Red Whistle, you get a sense that you're really talking with very established, developed, sophisticated audience that has a sense for art and then the stories within that magazine deal with issues in open ways that sometimes are, like you said, are only whispered in other places or even were in the Philippines before.

I really appreciate that perspective. I think that now I'm more curious than ever to come visit. Is there anything else you'd like to talk about, in closing? I really appreciate all the information and perspective that you've given today.

Benedict Bernabe: In this interview, I realized that I've been doing this for sometime, like 13 years, but it really doesn't feel that long because it's always a learning journey for me and for everyone in the community.

And we really appreciate how much you appreciated the work that we've done. But we are really inspired by a lot of the global movement around HIV. People in Africa who started all of the advocacy around HIV, being hardest hit area initially. And people in the US and in Australia where I studied and I learned a lot from their HIV response as well.

And in Europe and the rest of our colleagues in Asia, we're very blessed to be connected globally and learn a lot from everyone. And I also learn a lot from young people. 10 years ago I considered myself a young person, but nowadays I'm the one talking about the young people from a third person's perspective.

But all of these ideas that we've had, we constantly improve because of the input of young people. And in the Philippines, it's very important because it really is the young people who bear the burden of the HIV epidemic. So we learn continuously and we're always inspired by this great community.

And we appreciate this appreciation that we have for the work that we have done. So thank you so much. 

Jeff Galvin: Thank you for sharing your journey with us. And I completely recognize and empathize with what you're saying in terms of 13 years going really fast.

American Gene Technologies has been a project that I've been working on for 15 years, and it went by like that. Time passes quickly when you're doing something that you care about. And it's clear that you really care about what you're doing, but also that you've been highly effective at it. I'm sure for a lot of people around the Philippines and hopefully for some of the folks that are watching this, they may have picked up some good ideas about how to advocate and where to put their attention to get the biggest impact and maybe implement some of the things that have worked well in the Philippines.

I'm sure of all of them - and certainly I - want to say thank you very much for being with us here today. 

Benedict Bernabe: Thank you so much, Jeff, and we look forward to seeing you here in the Philippines.

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