May 17, 2012
How did you get involved in the HIV/AIDS field?
Robert Murayama, M.D.
I grew up in New York City and I came out as a gay man in the 70s. Even growing up in a city like New York, you still feel like you are the only one [who is gay]. I came across so many people who had similar values and outlooks on life, who happened to be gay, bi or trans and it was a very different experience. I had this new group of friends -- you can even call it a "chosen family" -- and the expectation was that we would all be there for each other in the long run.
And then it became very gloomy. People were becoming infected. It started attacking my friends and people I expected to grow up with more. All of a sudden, they just weren't around anymore. I kind of just woke up and came to the realization that people who were very similar to me were dropping dead and that I needed to do something. And when I was little, I always wanted to be a doctor and I figured at some point I would do that.
So I went back to school and then went to medical school and I was still very much interested in HIV work. I ended up training in medicine at Montefiore Medical Center in the Bronx and my mentors there were folks who believed in the importance of taking care of communities. They very much believed that HIV care was destined by the providers and back then, in the late 80s, there really weren't any medications that were available; so, for us, we were there to be there for them, and comfort them and help with the family. Most important, it was about helping people die with dignity. And that's how I learned to take care of people with HIV infection.
How did you become involved with APICHA?
I actually was peripherally involved with APICHA when it was founded in the '80s. It was founded by folks who saw that Asians living with HIV were often isolated, alone and didn't have anybody to care for or advocate for them. I was of the group that talked about the needs of this very invisible population.
I have been involved in APICHA as a physician educator, educating the staff over the years and also serving as a resource for the HIV-positive support group that they had in the '90s. But I only officially started working for APICHA in 2008.
Why is it important to serve the API community, especially here in New York City?
Like I mentioned before, the API community living with HIV is a fairly invisible community. Although Asians in New York City constitute 13 percent of the population, historically many Asians have been linguistically isolated. If you look at the statistics overall for New York City, 15 percent of the population is linguistically isolated, but for Asians it's closer to 50 percent.
Also, there is this whole model minority [stereotype] that we live under: That we are all doctors, rich, highly educated and have access to power, which may be true to some extent if you lump us all together. But when you look at the 13 percent population in New York City, a good majority of them are recent immigrants, linguistically isolated and often have their children interpreting for them. If you break it down by ethnic groups, there are 40-something Asian ethnic groups in New York alone. A majority of them are actually living below the poverty line.
Now throw in gay, lesbian, bi and transgender folks on top of that and the barriers become even higher and more unique, especially when it comes to health care.
I've also found that there is so much denial about HIV in the Asian community, especially among the Asian medical community.
That's incredibly interesting.
I remember years ago when I had an STD [sexually transmitted disease]. I went to see my physician who was a Korean-American doctor. He couldn't understand how I got an STD. He was like, "Well, you're not married?" And I said, "Nooooo."
We unfortunately have our own stereotypes and our own issues -- we are not above our own internalized homophobia and, unfortunately, I think that we can eat our own.
Also, Asians have the lowest rate of HIV testing in New York City ethnically. There was a study that was done by the health department a few years ago that showed that, if you are Asian, the likelihood that you would even be offered an HIV test by a primary care provider was slim to none. And if you have people who are linguistically isolated, most likely they are going to see a medical provider who speaks their language. So their chance of getting tested for HIV becomes even smaller.
What are some other barriers that the community faces in terms of HIV prevention, testing and treatment?
As I said before, a lot of folks are recent immigrants who may have come here for many different reasons, including being refugees. A lot of gay folks coming here from Asian countries have been persecuted and prosecuted so much that coming here there is so much instant freedom, but there is also a lack of understanding about the U.S. health care system, which is very different than that of other places around the world. Here it's very structured in terms of how you access it and I think that prevents folks from getting access to prevention and education, testing and even treatment.
I've also seen a number of gay Asian men who have been infected because they don't quite have the language skills to be able to negotiate safer sex and also I think that many Asian gay men have been battered in a sense that they don't have the right to insist that someone use a condom.
What are some of the specific ways that APICHA bridges those gaps? What types of services and programs do you offer to clients?
We do a lot of things.
First, I'll start with our medical services. Our medical services are actually the last and most recent piece of APICHA. Our medical services started as HIV primary care in 2003. We got a grant from the federal government to specifically do outreach and take care of the HIV-infected Asian population in addition to folks of color. From that we came to the realization that a lot of people not only wanted to receive care for their own HIV infection, but they wanted care for their family and their partners and their friends, who may or may not be HIV infected. We also received a small grant from New York state to begin to do primary care for people who have a high risk for getting HIV infection, but were negative.
Given that most of the HIV infections in the Asian community happen to gay men, or men who have sex with men, we are talking about sexual transmission, and so we started our primary care for HIV-negative LGBT [lesbian, gay, bisexual and transgender] folks in 2010.
Most recently, we opened up our transgender clinic. It is not HIV focused. It is really a wellness and prevention focused program. The clinic targets Asians, but other trans folks of color -- really, anyone who is transgender or gender-questioning/gender variant -- are welcome. Our goal is to engage people into primary care, because we believe that if more people have contact with the medical community, are up-to-date with their vaccinations, and are getting regular check-ups and STD testing, then they are less likely to engage in risky behaviors.
Another program that we are about to launch is an anal cancer prevention program -- and we are looking for anyone to give us money. We are looking to start a cervical cancer prevention program as well.
Another prevention program we have is an LGBT program, which is focusing mainly on getting young gay men in their teens mentored by older gay men, mostly men in their 30s.
That's such a critical piece that I wish more LGBT organizations would do. There are so many younger gay men who don't have any role models and don't have any one gay in their lives to help them navigate the early stages of being out.
We are very excited about that program. We believe that mentorship is really helpful, because so often the only source of information might be from our families and, if you are gay, then most likely you are not getting the information that you need. And in terms of their peers, they may not be the best source of information.
It's also nice to have somebody not only helping you with making connections, but helping you with sort of organizing your life. So we have men from different backgrounds give presentations on various aspects like how to balance your checkbook, how to prepare a resume, and how to dress for success.
That's awesome. What are some of the programs that you have for women?
We have a testing and prevention program for women and youth where we teach women about STDs and HIV, and we go out and do testing in this population. We have also been able to link HIV testing with STD testing. Over the years, what we found was that people may be on the fence about getting tested for HIV, but they are certainly interested in getting tested for STDs. So if we can test them for gonorrhea, chlamydia and syphilis, we will say, "While we're at it, why don't we test you for HIV?" People are much more receptive if we are offering an array of those services.
Let's talk more about the transgender clinic. How did that come about?
The trans community has been a very invisible community. Yes, there are some members who are highly visible, but I think that, for the most part, trans and gender-variant people tend to fly under the radar. And recently, there has been some data showing the incredible injustices that have been done to this community.
A few years ago, the largest data on transgender Americans [emerged]. I believe that they surveyed more than 6,500 trans folks and they found some really eye-opening information. A majority of the respondents lived in extreme poverty. They also pointed out that so many trans people faced so many hardships in their lives from childhood, being in school, entering the workforce, being out in public, and even the contact that they have with the medical community and the police. And that's why the suicide rates were amazingly high. One report found that over 41 percent of those who had responded to the survey said that they attempted suicide and 78 percent reported harassment in schools, including sexual harassment. People reported loss of their job, harassment at work and housing discrimination as well. And what really got me upset -- not that everything else didn't get me upset -- was that 19 percent of respondents had reported that they were refused medical treatment.
So APICHA had been taking care of the transgender and gender non-conforming folks since we started providing medical care, but there was this decision that, if we really wanted to make sure that we were addressing marginalized communities, then we really needed to create a clinic that was addressing the unique and specific needs for this community.
This is the first time, to my knowledge, that private or public funds were given to a clinic that was not specifically doing HIV prevention work for the trans community and not solely focused on trans women, but allowing us to address the needs of the very diverse trans community.
The clinic opened last October. How many clients are you all serving?
We have about 50 transgender/non-conforming folks that are in care right now and we haven't even begun to do our big launch. [Laughs.] Right now we are in our start-up phase and we are excited that we have been able to get the word out. But we've noticed that since we've been doing this work that we need to do more advocacy, because there are numerous barriers that keep coming up more and more.
One of the biggest barriers is this lack of insurance coverage for trans folks. There was this big hope that when New York state Medicaid was undergoing its redesign, that trans-related services, which include hormone testing, providing hormones, surgical interventions and mental care, might be covered. Well, that didn't fly, especially because the goal of the Medicaid redesign was to save money, not spend more money.
But unfortunately, for those who do have insurance, it doesn't cover anything trans-related. And that's because they lump everything into this one kind of garbage can silo called "Gender Identity Disorder." Once someone is labeled as having that, even something as cheap as an oral estrogen hormone isn't covered by private insurance because you have a gender marker on your insurance card. Now, if your gender marker says "female" and you need that hormone, it's covered; you're fine. But if that marker says "male," your insurance won't even cover the medical visit. We are not even talking about surgery; we are talking about the basics -- meeting with a medical provider to get basic information and mental health. None of that ends up being covered by private insurance.
What has been the community response to APICHA?
The Asian LGBT community knows about us. And I'd love to say that the [general Asian] community has wholeheartedly embraced us, but we are still kind of a dirty little secret. People don't necessarily like to talk about the work that we do, even though we like to talk about the work that we do.
It is hard getting the word out about us in a hundred different languages and ethnic groups, but many do know about us and we get a bunch of referrals, especially when people have been identified as HIV positive in the Asian community.
But what does happen is that there can be a lot of competitive infighting. For example, we are involved in health care, not just prevention, so we see one of our missions as providing for the care needs of our community. And right now, we have a situation where there is a large Asian-Chinese focused community health center next door. They really don't want for us to exist, but they don't want to serve the population that we serve, which is unfortunate, and they are doing everything they can to make sure that we don't receive designation from the federal government as a federally qualified community health center.
That's actually quite ridiculous.
It really is. And to me, it's like saying there aren't enough poor, sick Asians to go around or that they feel that they can do it all, but yet they are really not serving the needs of a very important population.
How worried are you that this tension will affect your funding?
I think everybody is worried about funding in general. We do receive a lot of funding from federal and state and city grants, and when you are receiving grant funding, you are always worried about which way the wind will blow in terms of politics. So yes, we're concerned about it and we've certainly been trying to diversify our private foundation funding, but that's also been difficult, especially in this economic environment.
Sometimes this work can be such a mix of emotions -- it can be amazing, fulfilling, but at times it can be frustrating, and even depressing. How do you personally cope with your job? How do you decompress?
No, I have a good support network of like-minded folks. I have a gay, Asian doctor network and once a month we get together and eat really unhealthy food and get bombed and have a good time. I also have other folks in my network and we are able to text each other and commiserate, but I also work with an amazing group of people here at APICHA. People here are really committed and it really makes me energized that there are these young people that are coming up through the ranks that are just energized and excited and are ready to fight the fight.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.
Follow Kellee on Twitter: @kelleent.
Copyright © 2012 Remedy Health Media, LLC. All rights reserved.