Breaking Down Barriers to Transgender Health and HIV Care
Part One of a Two-Part Series Exploring Perspectives on Transgender Health Access and Advocacy
Transgender and gender non-conforming people face discrimination and harassment in virtually all realms of society. The stories of hate crimes against trans-identified individuals that make it into mainstream media only scratch the surface of heinous rates of violence directed toward this community. That level of trauma creates a barrier to getting through the door of a health care facility and accessing care.
Even when trans people manage to reach out for health care, they often find more harassment waiting for them. The National Transgender Discrimination Survey found that nearly a quarter of those surveyed had been discriminated against in a doctor's office or hospital, and half of respondents had to teach their providers about transgender care.
What factors keep health institutions from being the safe spaces they should be for trans people to receive care? And what can providers do right now to bring awareness of trans issues into their own practices? In this two-part roundtable, I spoke with three powerful transgender community health advocates to get to the bottom of these questions -- and get their recommendations on resources for health care workers.
Participating in this discussion are: Devarah "Dee" Borrego, Boston-based activist, writer, speaker, and founding member of the U.S. Positive Women's Network; Danielle Castro, community mobilization specialist at the Center of Excellence for Transgender Health in San Francisco, Calif.; and Tei Okamoto, Trans* Health Clinic program manager at APICHA Community Health Center in New York City.
This is part one of a two-part discussion. Read part two of the discussion, in which we discuss what lesbian, gay, bisexual and transgender (LGBT) and women's organizations can do to truly be more inclusive of trans community members.
Olivia Ford: From what you've observed in your work and your advocacy, and in your lives in general, what are some factors that render transgender people particularly vulnerable to becoming HIV positive?
Danielle Castro: Looking at the level of discrimination and stigma that exists within the community outside the HIV prevention field, and looking at the level of hate crime that's happening toward mostly trans women, it's just really sobering; it's devastating. All of that violence and internalized discrimination and transphobia really set us up for a challenging road. That's one of the social determinants that can lead to risky behaviors around contracting HIV: If my self-esteem is not high, I'm less likely to take care of my body. Or, if it's not high but somewhat OK, I'm more likely to take care of my body.
A lot of trans people don't have access to health care services. We don't have access to employment. We don't have access to so many different services that other populations do. So that leads us to making risky decisions in our lives. Trans people sometimes have an innate battle with affirming our gender. This isn't about all trans people; looking outside just the trans women spectrum, some people don't have issues with gender affirmation. Some people are fine and identify as gender queer.
But I think that in trying to affirm our genders, and also in trying to survive and have an income, we may turn to the sex work industry. The johns or the tricks will usually reinforce that we're beautiful women. We are worth their time. That leads to a false sense of self-esteem. But that's something that we normally don't get.
The other piece is that employers discriminate. Although there are great strides that have been made in protecting trans people against discrimination, employers still discriminate. And if someone doesn't necessarily pass as their gender identity, or they look to be outside of the employer's heteronormative standards, they usually aren't provided with a job, even if the person is overly qualified. So survival sex work is another way to make that money and be able to survive. So that definitely leads to an increased HIV prevalence in the community.
Tei Okamoto: I just want to note that I'm going to use the term trans, and that that is referring to people of trans experience: gender queer; gender variant; gender nonconforming. I want to piggyback on what Danielle just said about barriers to care, and receiving messages of being seen as worthy or not worthy of being cared for: The systems, our so-called safety nets, like the Human Resources Administration, that are set in place to actually protect those that are most vulnerable -- that are in periods of poverty or poor health conditions, the places you need to go to access help for housing, medical care, legal intervention for things like domestic violence or hate crimes -- are the very systems that create violence against those that are accessing care. Author and activist Dean Spade, in his recent book Normal Life, calls this "administrative violence." Those are huge barriers that leave trans people very open to all kinds of vulnerabilities, one of which being HIV.
Danielle Castro: Looking at health care: Health insurance is difficult to come by if you're not employed. Also, it's really expensive. Oftentimes we're denied health care services outright, or we've had negative experiences that have impacted us to the point where we don't want to go for preventative care, even if there are community clinics offering free services.
The lack of cultural competency, with providers just knowing how to work with trans people, really puts up additional barriers for us as far as seeking preventative care, and getting tested for HIV and other STDs, that don't exist for other populations.
Access to gender affirmation through medical interventions like hormones or gender-confirmation surgery: Those don't exist a lot in community clinics. And so we're left with having to find other ways to affirm our genders, which can lead to survival sex work, and also influences the decisions we make about taking care of ourselves.
Devarah "Dee" Borrego: Some other social determinants that affect transgender people and our relationship with HIV have to do with ableism around disability, particularly with mental health issues. There are many people in our community who are not only dealing with HIV, but also dealing with homelessness and mental health challenges. I think that that plays a role in vulnerability to HIV, as well.
Also, given the general poor economic climate, the difficulties for anyone right now in finding a job make transgender people especially vulnerable, because of additional discrimination in employment.
There's also, in my opinion, a general lack of education within the trans community. I think there are a lot of members of our community who are not afforded, for many reasons, including all of what we're talking about now, opportunities for education. I think under-education really prevents many of us from being able to go out for jobs, or to be qualified for working in higher fields than we might otherwise be able to.
Regarding drug use, and drug abuse, within the community: Whether it's around having been a sex worker, or just dealing with being transgender, I think these factors can lead to higher instances of drug use, and higher consequences of use.
Also, when there's so much ignorance and stigma around being transgender among the general population, I feel that there's complicity to allow us to be second-class citizens. It doesn't seem to the general population that there's anything wrong with treating us differently.
Danielle Castro: I wanted to point out something that's relevant to the conversation around HIV: When we're talking about HIV, I just want to make it clear that we're looking primarily a population of trans women of color.
All of the data that have been looked at around HIV prevalence in the trans community are finding the highest HIV infection rates among trans women of color. The data collection systems are still based in the gender binary, and that does have some limitations to it. But a 2008 analysis of studies of HIV prevalence in trans populations found that over 50 percent of trans African-American women are infected with HIV. That leaves a lot of the rest of the community feeling somewhat left out of the funding opportunities and programs that do exist to address these issues for trans women, and even still, these programs are limited.
Olivia Ford: Danielle, you mentioned that people of trans experience are often denied health services at the point of care. Can you talk more about that?
Danielle Castro: There have been several studies done. The National Center for Transgender Equality, in collaboration with the National Gay and Lesbian Task Force, released the report Injustice at Every Turn: A Report of the National Transgender Discrimination Survey, which includes some phenomenal work looking at access to health care. They found that people were outright denied care when trying to access preventative care if they disclosed their trans status.
Most doctors are not trained on how to work with trans people, trans bodies. They get very little information in their medical schools. There's fear and lack of awareness -- and discrimination and ignorance, of course -- when it comes to providing services for trans people. Oftentimes health care providers will ask irrelevant questions that have to do with something other than what the presenting issue is, out of curiosity.
For example, I was hospitalized last year for pneumonia. You know, I could not breathe. I was getting breathing treatments and steroids. This was in West Palm Beach, Florida; I was not home in San Francisco, so there was that layer of feeling uneasy, besides not being able to breathe.
The attending ER doctor started to ask me about my transition, and about when I had my gender confirmation surgery, and was just talking to me about trans issues. I told him, "I can't breathe, Doctor. I need help with that. These other questions are irrelevant to my care."
I was admitted to the hospital, and the nurse that was attending to me asked me when I got my breast implants. Everyone's assuming that I've had these procedures; they haven't asked me if I had them or not. I told the nurse, "It's none of your business. I don't need to disclose what's going on with my body. I'm here because I have pneumonia, and this is irrelevant." I expressed how angry I was. Then I needed help changing my robe, and as she was helping me, she made it a point to look under the robe, to see if my breasts were real or not.
These are the kinds of things that happen, that really create that barrier to finding competent health care. For me, it just creates another level of fear when I go to access services.
Tei Okamoto: Going back to the issue of health insurance: A lot of trans individuals apply for health insurance, and they're denied once they disclose their transition-related history. Even if somebody is accepted, most insurance policies exclude trans-related services. This means that procedures like hormone therapy won't be covered. And if trans-related services are not excluded in the policy, insurance companies still might deny the claim, based on the procedures being deemed cosmetic.
The Patient Protection and Affordable Care Act (ACA) makes coverage available for individuals who have a pre-existing condition, have not had insurance for six months, and are legal U.S. residents. In New York State, this is called the Bridge Plan. While this plan is a viable solution for some trans people, it poses a problem for those who do not have legal resident status. Also, it poses a problem for people living with HIV who can't wait six months without insurance before receiving proper care.
Devarah "Dee" Borrego: I'm a recipient of Medicaid; and as a transgender person, once I complete legal gender change under the eyes of law and under the eyes of my insurance, they will no longer cover whatever male-specific health needs I may have. That's certainly an endemic problem as far as the insurance issue, and it speaks to the fact that the insurance industry as a whole doesn't understand the fact that people of trans experience have varying medical needs and will need insurance that's able to cover all types of services, from mammograms, to anal Pap smears, to any number of specific health issues that could come up for transgender people.
Unfortunately, this also comes back to the fact that there's not a lot of data around some of the more specific health challenges that occur with HIV-positive transgender people. There's very little data on interactions between antiretroviral treatment, and hormone replacement therapy. There's not a lot of data on incidence of breast cancer in transgender women, and how that might affect HIV-positive women, especially. These are all medical issues that really directly affect HIV-positive women.
Olivia Ford: Errors and blatant affronts, really, made by health care providers with respect to transgender clients, have come up several times in this conversation. What are some common errors that providers make in their interactions with trans clients?
Tei Okamoto: One of the common areas is gender markers. Most medical facilities have a number of gender-specific spaces that might make trans folks feel uncomfortable, like gender-specific bathrooms or medical forms. These things can really deter patients from seeking medical care.
We talk a lot about this in providing care at APICHA: When are gender markers relevant? When do you ask questions like "What was the sex you were assigned at birth?" Who needs to know that? Does everybody need to know that? Does a primary care physician need to know that? Furthermore, does a receptionist or a bus driver need to know someone's gender? Shouldn't they address the individual standing in front of them as they are presenting, or feel like they can ask politely if appropriate?
We're really looking at what the relevant questions are and, through this, creating a much more comfortable and trans-positive space.
We also think it's really important to keep in constant communication with our patients, to ensure that their medical needs are being addressed, and ensure that they're staying healthy, and avoiding high-risk behaviors. In my experience as program manager, I find that trans people really appreciate when I call and follow up, or when I take some time with them -- because there may be another question, or something, that they forgot about when they were seeing their physician. And sometimes, that forgetting is because they're so traumatized being in a medical system. Being able to debrief after seeing a primary care physician has been a really good thing for our trans patients.
Devarah "Dee" Borrego: Some of the points that I've noted for myself as far as common errors were specifically around the provider or the support staff using the wrong pronoun, or using the wrong name, directly with the client. I think it's really important that the entire staff be on the same page about what a client's preferred name and pronoun are.
The use of legal name and gender is certainly a requirement on some legal and medical paperwork. I think there needs to be explicitly clear conversation and communication from the staff about when and why that would occur, and where it would be needed. And in these places where it is not required by law, the client's preferred pronoun and name should be the only thing used. That's a very large, endemic issue.
Going back to what Danielle touched upon earlier, regarding overly intimate and inappropriate questions, specifically around surgical or hormonal clients, from uninvested parties: I personally have had nurses or other support staff asking me very intimate personal questions about my own transition or plans for transition, when it really has no bearing on their ability to do their job, or provide the services they need to provide for me at that exact moment. It can be a traumatic enough experience as a trans person even getting to the medical provider -- getting trans people into the actual room and into care. Just interacting with the people in the world that you must interact with to get there creates a barrier already. When we feel that we're going to be bombarded with questions that are inappropriate, it can be very de-motivating to even want to go in the first place.
Danielle Castro: Medical providers make mistakes all the time, in general. For trans communities in particular, medical providers often don't understand how simple it can be to provide primary health care and HIV care for trans people. One of the mistakes that providers make is having assumptions about all trans people -- thinking that everyone is on the road to transition to "another side" to become part of the heteronormative gender binary.
What I've seen is that health care providers are afraid to ask questions around gender identity, and aren't sure how to phrase a question. As care providers, we need to ensure that we understand how to ask the question about preferred gender pronouns, what body parts am I working with, what do you call them, how can I address your body parts to be respectful -- really having sensitivity around that.
Most health care facilities don't have policies in place that protect trans people. They need to incorporate policies that don't allow for discrimination against any population, especially trans people. But just having those policies is not enough. I think it's important to have training for entire staffs of a health care facility, from the reception area, to security personnel, to janitors, all the way to the providers themselves, ensuring that they know how to work with trans people.
Another common mistake is that there aren't very many trans-identified people working in health care settings. Hiring trans people really promotes an environment of acceptance. If someone knows that trans person, word is going to spread: "Wow, there are trans people here. This is an accepting space."
Regarding HIV care: From what I've seen in my work throughout the country, I think doctors tend to use withholding hormones as leverage for people to take their HIV meds. I really disagree with that. If someone is sick and they need help, they need the medication. Not providing them with other primary care options like hormones is ridiculous to me.
I could go on and on. I have a laundry list. But those are some of the main things that I've seen.
Olivia Ford: What I'm hearing from all three of you -- and particularly Danielle and Dee, speaking about negative personal experiences -- is that part of the issue as far as provider error seems to be that providers are afraid to ask questions, or to explore what questions they should ask; and then those who aren't afraid are asking the wrong questions. I would never expect anyone to speak knowledgeably about individual providers' thoughts or motives; but in your opinions, based on all three of your experiences watching and working with providers: Do you get the sense that, in some cases, they're trying, and failing, to make a person feel comfortable by trying to appear as if they know more about trans issues than they do? Where do you think the tendency toward excessive intimacy -- or just blatant, inappropriate curiosity -- comes from, essentially?
Devarah "Dee" Borrego: I think this question not only applies to providers within a medical context, but with people in society in general. I would like to think that people don't have negative motivations when they're trying to find these things out. I think it's really just curiosity, and trying to understand and put such personal trans experience within their own, generally heteronormative, context.
People of a general heteronormative experience, and even people within the queer community, will have their own predisposed ideas as to how a transgender person should fit within their own framing of the world. I think that really is what motivates people to ask these questions, because they feel that they are entitled to know every aspect of our lives as trans people, whereas that's not the standard that everyone else is held to.
Danielle Castro: I talked briefly earlier about the National Center for Transgender Equality's study. It found that 20 percent of 6,450 trans and gender-variant people were subjected to harassment in medical settings. And 2 percent were victims of violence. Fifty percent reported having to teach their medical providers about trans care. Those are really atrocious numbers to me -- especially that 2 percent were victims of violence in health care settings. That piece tells me that there are haters, straight up; there are people that are close-minded, discriminatory, and unwilling to open their minds.
On the other hand, I also think there's some innocence to this. People, and health care professionals in particular, tend to be curious. I think that's where the questions come from. Seeing a trans patient is like a learning opportunity, all of a sudden, for themselves -- which is selfish, unprofessional and misguided. I think that the antidote is to educate ourselves.
People that aren't aware and don't know anything about trans people: I wonder if they still exist. But that curiosity really comes up in any setting.
Tei Okamoto: It's an interesting phenomenon. I've been doing HIV work since the early '90s. I remember when people used to ask, "Oh, they have HIV? How did they get it?" It doesn't really matter how they got it when it comes to understanding, first, that the person in front of you is a human being that deserves the highest quality of care. I think today we hear people ask that question less and less. We use models of how people became infected for prevention purposes, but we don't have those kinds of questions running around our offices or organizations in that way of it being about curiosity. Like Danielle says, hopefully there isn't anybody out there who hasn't heard of transgender individuals and transgender communities. Hopefully everybody has been touched by the issues in this population.
Olivia Ford: I wanted to ask you, Tei, specifically, about the lead-up to the opening of the fairly new transgender clinic at APICHA. What were the needs in the community that the folks at APICHA saw, and evolved to fill?
Further Reading and Resources for Care Providers
Tei Okamoto: We've always had a number of trans patients. And we wanted to create a center that adequately addressed the specific health needs. There are a few other organizations in New York that provide comprehensive health care; but we are also an organization that targets underserved communities. And so it made sense for us to move forward with the trans health clinic. We've heard a number of stories from trans patients who sought care at other sort of LGBT-friendly facilities, but their experiences have been largely negative. More often than not, like Danielle and Dee said, they've spent more time educating their providers on their trans issues than receiving care.
Furthermore, we hear that a lot of medical providers are reluctant to provide hormones to their patients. So at APICHA we're fortunate to have someone like Dr. Robert Murayama as our acting chief medical officer. He's received his training on trans health from his formal medical training and residency, as well as from his long history of interacting with trans people, in and out of the professional setting.
Empowerment was important. We wanted to offer our trans patients a space they could take ownership over, a place they could claim as their own. We employ trans individuals in all capacities. Through our health clinic, a program that's bearing our communal name, we hope to empower trans, gender-variant, gender-nonconforming and genderqueer patients, and invite them to feel that their specific health needs are met, and that they matter.
Opening the trans clinic has allowed us also to fall in line with our belief that health is a human right. We saw that most health centers were willing to treat trans patients, but lacked the resources to treat trans patients. And we wanted to fill this gap in health care.
We offer comprehensive medical care; immunizations; chronic disease management; disease prevention; initiation and maintenance with hormone therapy. We provide mental health assessment and short-term psychotherapy, substance abuse and use treatment counseling, support groups, wellness-oriented psychoeducational workshops. We do targeted outreach to identify high-risk transgender individuals and their partners. We do sensitivity trainings for agencies and community partners that serve the Asian Pacific Islander community, and communities of color in general.
We have use of the agency's referral system for services that aren't provided here at APICHA, particularly for patients requiring long-term mental health and substance abuse services. So we have an internal referral system. Many of the practitioners and providers that we refer to have been vetted, so we know that they have a longstanding commitment to working in the community, and are not just curious about working with this population.
My experience has been, I'll call a mental health provider and ask if they provide mental health to the trans population and they'll say, "Oh, of course," But it's more like, "This is fun and exciting." And then when I get into a longer conversation I find out that they've not worked with very many trans people. So that wouldn't be a place that I would necessarily send somebody.
Right now we're not offering gender reassignment surgery, or long-term mental health or substance abuse services. But we're really looking forward to being able to provide some of these services in the near future.
Olivia Ford: I want to open the floor up to all three of you to talk about any other programs you know of that are addressing the barriers to care for trans folks that we've been discussing throughout this conversation.
Danielle Castro: I work at the Center of Excellence for Transgender Health, and we're looking at addressing the barriers that exist. One of our projects is the Primary Care Protocols Project. We convened a medical advisory board that were individuals that not only have knowledge of trans community and cultural competency, but have provided services for trans people for many years.
We brought them together and they developed what we call the Primary Care Protocol for Transgender Patient Care. It's a first-of-its-kind document. Primary care providers, any health care provider, can go onto our website, look at this guidance and read about how to properly care for trans people. It covers a variety of issues. That's a really groundbreaking, important resource.
We also have on our website for the Primary Care Protocol a one-pager that individuals can download -- trans people that are looking for health care can just give this piece of paper to a doctor and say, "Educate yourself." Again, 50 percent of the respondents to this NCTE study reported that they had to educate their health care providers. I think this is a really good way to help alleviate that.
Also, I work on a national level on a U.S. Centers for Disease Control-funded, first-of-its-kind trans community mobilization project called Coalitions in Action for Transgender Community Health (CATCH). The main focus of the project is to increase access to health care and HIV prevention services for trans people.
I work with communities that are interested in creating coalitions to meet that goal, and walk them through a process and support their efforts around doing federal needs assessments and coming up with strategies on how to address those needs.
There is some momentum.
Devarah "Dee" Borrego: Here in Boston, the clinic where I actually receive my primary care is a specialized clinic that cares for the needs of the LGBT youth community between ages 12 and 29. It's called the Sidney Borum Jr. Health Center. It's a program of Fenway Health, which is another major health organization -- a national leader on health issues affecting trans people, and people with HIV.
At the Borum, which is the clinic I go to right now, they've always provided me with a very high level of transgender competent care. They make access to hormones a really straightforward process. They're wonderful around keeping records in the ways that we've described here: Only documents where it's legally required to use legal name and pronouns contain them. The support staff is well trained. That's a program here in Boston that I'm a big fan of, personally.
Olivia Ford: Danielle, from your perspective, working as you do on a national level: Are there any efforts afoot to engage providers who don't themselves see the importance of being trained in awareness of the needs of their trans clients?
Danielle Castro: Well, you can take a horse to water, but you can't make it drink! But I find that with a lot of health care providers, their motivation behind not wanting to provide services to trans people is that they think it's so difficult and that they need a lot of different resources, like financial resources, to help work with trans people.
But once providers understand that it doesn't take rocket science to work with trans people -- it's just like working with any person, just really understanding what the presenting issues are, etc. -- though of course, there are some specific issues that primary care providers must be aware of.
As part of the community mobilization model that I'm working on, CATCH, we do go out and work with different health care providers. What's been happening in some cases is that state health departments are the ones that are interested in the community mobilization model -- along with community members, of course. But having the buy-in from the local health departments and state health departments provides leverage. Health care providers coming from throughout the state or throughout the city then becomes more like a necessary thing, if they're actually being funded by the health department. The health department can require them to be trained. That's been working out well; and like I said, it's happening all over the country.
We also deliver a training called Best Practices for Transgender HIV Prevention. We've been trying to create coalitions so health care providers do have an opportunity to understand how to work with trans populations around HIV prevention and care.
We are not only working on a national level; we're actually working on an international level now. The Primary Care Protocols are going to be adapted through our international work for international populations.
Our thinking behind the Primary Care Protocols was not just to develop a living body of work that could be referenced; we actually are interested in working with health care providers that want to integrate trans people into their practice and provide services. We've been trying to identify funding to be able to do that. But in the interim, we're just working with providers that are interested, you know, kind of offline.
But I'm hopeful. We're also interested in adapting the Primary Care Protocols to be an online training, a Webinar type of training, for health care professionals.
Tei Okamoto: To add to what Danielle said: While trainings are useful, and educating, we should also think beyond them and think about getting health care providers interested in trans health, specifically -- looking at something like the Mazzoni Center in Philadelphia. This past May, for example, they offered the first annual Transgender Education Certificate course, which is a three-day intensive continuing medical education activity for medical providers. It's hosted by the Trans Medicine Education Initiative. It's designed for new, as well as experienced, medical providers interested in providing primary care to adult and pediatric transgender patients. In this way, Mazzoni Center has really tried to formalize proper and excellent health care for trans people.
Danielle Castro: There are other organizations that are really working for this cause. And there are various conferences throughout the world, and in this country. The Transgender Law Center has the Transgender Health Care Access Project (HCAP). They've been working with health care agencies throughout the State of California to help them really open their doors to trans people. There is a lot of fantastic work going on around the country around this issue.
There's the World Professional Association for Transgender Health. And they have guidance for working with trans people, as well. They are more like guidelines; it's not really a protocol. There are definitely steps being taken in the right direction.
This transcript has been edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.
This article originally appeared in TheBody.com's Pride 2012 special section.