Six fully-packed boxes of files sat conspicuously in the corner of my office. For months I’ve been looking forward to having these shredded. As I ran a finger through the pages a last time, I remembered the days spent processing the data in these boxes. Because of the hours spent typing up hundreds of rows of data, I admit that for a while I forgot what they stood for.
Each of these represented a person not just suffering from, but living fully as a person with HIV/AIDS.
A Review of the Outpatient HIV/AIDS Treatment (OHAT) Package of the Philippine Health Insurance was the first project I ever handled as a Research Associate at EpiMetrics, Inc. It’s a study aiming to assess the current insurance package for people living with HIV/AIDS (PLHIV) so that PhilHealth can further improve their benefits and process of insurance. Under PhilHealth’s OHAT, members who are living with HIV/AIDS are entitled to at most Php30,000 worth of HIV-related medicines, tests, and services at HIV treatment centers every year.
At the time, I knew little about HIV aside from high school biology and the musical Rent, but as a public health researcher, this was a perfect opportunity to learn.
We spent weeks reading, discussing, and writing the research plan to suit the circumstances of HIV/AIDS. After the desk work, we were ready to begin the actual study on the field - the real education was just about to begin.
My first encounter with PLHIV, sometimes called “positives”, was during our pre-test. I arrived at the clinic with all the carefully prepared documents, but expected little since I was preoccupied with doing every part of the protocol right. Aside from a few awkward questions like pinning down how to classify work (yes, actors are “professionals”), or the trial of asking questions like “what kind of toilet does your household use” or “do you own a motorized or non-motorized banca”, it seemed like any other interview for a randomly-selected group for a survey. While we don’t downplay the struggles of these patients too, I would soon find that this private clinic was unique, and that I hadn’t yet seen the more difficult challenges that PLHIV faced.
The differences were stark as we began actual data collection in a large public hospital in an urban area. In the private clinic, people came and went quickly, barely using the waiting room. At the public hospital, men and women lined up along the hall; some were seated on plastic chairs and many more standing in line. There were no empty cubicles for interviews; we improvised at an outside area where dusty old and extra furniture were kept. Finally, we kept the interviews moving quickly to accommodate the sheer number of people who came to the facility.
In movies, PLHIV seem to always be gaunt, with dark eyebags, not very well off, and are suggested to be living on the sidelines of society and inexplicably coughing into a handkerchief. The image was a stereotype of “mukhang adik”, now that I think about it. I remembered how older people would talk about it, where uncles would associate sexuality with HIV, in a negative and scandalous tone.
The people I met during the interviews were not at all like that.
The respondents were as energetic as anyone else in the hospital, and incredibly diverse. Some were young, probably teenagers; and others were perhaps old enough to be my father. Some wore smart long-sleeved button-downs and leather shoes; others were in basketball jerseys and khaki shorts. I remember seeing one person in a striking shiny purple shirt with the collar turned up, accessorized by a gold chain necklace and bracelet and topped off by a smart fedora and a bright smile.
We were very fortunate that they were willing to share their experiences with us; though in a way even that was varied. Some were happy to say everything, sharing freely even information we weren’t allowed to ask for. There were some who only said “yes” or “no”, refusing to divulge even their birth date, and hesitated sharing in what city they lived, for fear that they could later be tracked down. Despite the challenge, we were grateful to every single one for their time.
When we analyzed the results and began discussions with stakeholders, a few issues became clear that gave meaning to our experience.
First was the persistence of stigma. About one in three respondents were not satisfied with the privacy of waiting rooms in HIV treatment centers. Waiting times and clinic operating hours were a concern not just of convenience, but also of minimizing the chance that they were recognized as PLHIV. On average, PLHIV also spent two hours in transit going to and from a treatment center. These trips are necessary for several reasons. To continue antiretroviral therapy, a combination of drugs that suppress HIV (the virus, and thus also the disease), making people healthier and also less likely to transmit the disease. This needs to be taken regularly and likely for life. At the same time, there is a set of medical tests they need to take at least twice a year at these centers, to make sure their therapy is in check and to test for illnesses. These illnesses, while simple, could easily escalate into life-threatening conditions if not caught and treated early.
In extreme cases, it can take up to 4 days of travel to and from the facility just to get this necessary routine treatment. For many, this is a necessary burden of the geographic distribution of treatment centers - the nearest one with the services they need is simply that far. For some, there may be other underlying reasons: some PLHIV travel beyond the nearest treatment centers so that they will not be recognized by those in their community as having HIV.
While discrimination in everyday life is already a burden, the stigma surrounding HIV is particularly harmful when it becomes a barrier to accessing life-saving care.
PLHIV are already more vulnerable to diseases that healthy people probably wouldn’t even take a sick day from work for. Although this OHAT package is available to help in covering costs for routine specialized healthcare, stigma still prevents people from accessing it. With information available online and rapidly evolving medicine, the HIV epidemic is one that should not be threatening as many people as it does today.
In fact, in 2010-2011, less than 1% of people eligible for OHAT claimed the complete package throughout the year, as they were entitled to, but this leaped from 8% to 22% in 2014-2015. This was such a puzzle for us, until with some sleuthing, we found out why.
In 2015, new guidelines were released declaring that the employer’s signature, a generic requirement for all PhilHealth claims, was no longer necessary for claiming OHAT. A simple change allowing for some privacy encouraged hundreds to claim the help that they were entitled to.
The solidarity of different stakeholders is also a strong weapon in the fight against the HIV epidemic.
It was a privilege to have witnessed and participated in the discussion with officials from PhilHealth, UNICEF, and support groups, each contributing their diverse insights. It was a wonder to see researchers, policymakers, and advocates (some of whom were PLHIV themselves) in the same room, working together to move forward in understanding and taking action on the state of HIV and PLHIV in the Philippines.
Once my eyes were opened to it, I couldn’t help seeing everywhere both the stigma against, and the spirit of solidarity surrounding HIV. One of the most unexpected instances came from being schooled on HIV by a PLHIV in, all of places, a pop-star’s fan group in Facebook.
As often happens there, a debate was going on in the comments of a post, this time promoting a free HIV testing event. I felt confident in chiming in the discussion, mentioning that a large percentage of PLHIV were men (as that was what I saw in our study). Another person commented to correct me. His photo showed the figure of an ordinary-looking man photoshopped to be standing next to the same man in heavy makeup, a huge wig, and bright dress, with a badge showing that he was an HIV advocate. He said a large percentage of those reported to have HIV/AIDS are men. It was quite possible that there are more “positive” women; there has been a stereotype associating sexuality with HIV, and so straight women may not be testing themselves as much as they should. I was stunned at my ignorance for not having considered this. Learning never does stop on such a complex topic as HIV. I had been preoccupied with numbers and figures - I had so much more to know about the people behind them.
People who are “positive” have chosen to live full meaningful lives. The condition of HIV, and all the stigma, discrimination and effort just to live through it exists; but so does ever-advancing medical care, universal financial help, and accessible information.
“Positive” people know there is no day but today to live. There is also no other day but today to fight HIV either. Positive or not, we can at the least be in solidarity with others and recognize the human in each of us, regardless of status; and at the most, work actively to overturn stigma and be sources of accurate information in our own communities.
HIV is a challenging illness, but it does not define the lives of those who have it.
In our office, all the presentations had been given, reports sent, and forms filled out and closed. A small rectangle of dust is left on the floor for all the documents we went through. The objects are gone, but the lessons remain.
Interested in the project? See the Project Article
List of Accredited HIV/AIDS Treatment Hubs - You can get free testing here!
While walking around the area with the data collectors, I would encounter old signs that referred to the HIV center as a “social hygiene clinic”, a name that sounded rather dated. Upon further reading, I found that “social hygiene” originated in the late 19th century as a movement for abolishing sexual activity that was considered “immoral” to traditional Christian beliefs, and was even linked to eugenics (a very controversial concept on improving the “genetic” quality of the population). As time went by however, “social hygiene” had adapted to mean something closer to sexual health, and is now most often aligned to public health, with regard to sexually-transmitted and other infectious diseases. Some centers for HIV care in Manila today are called Social Hygiene Clinics. I hope that perceptions surrounding HIV have also adapted to the times in the Philippines.