Ending Gay and Transgender Health Disparities
This interview took place on November 8, 2012, and is a project of the Center for American Progress’s LGBT Research and Communications Project.
Dr. Claire Pomeroy is an expert in infectious diseases and a professor of internal medicine, microbiology, and immunology. She oversees the University of California at Davis Health System and all of its academic, research, and clinical programs. Dr. Pomeroy has a special interest in health policy and has led efforts to advance the use of electronic health records as part of improving health care.
Dr. Edward Callahan contributes to behavioral medicine training for the UC Davis Health System’s residents, medical students, and psychology interns. His professional interests are in recruitment and management of academic personnel, with an emphasis on creating and supporting diverse and effective teams.
Kellan Baker: This is Kellan Baker; I’m a Health Policy Analyst with the Center for American Progress. With me today is Dr. Claire Pomeroy, the chief executive officer of the UC Davis Health System, the vice chancellor for human health services, and the dean of the School of Medicine. Dr. Pomeroy, thanks so much for joining us.
Dr. Claire Pomeroy: Delighted to be here.
KB: And we also have Dr. Edward Callahan, a professor of family and community medicine at UC Davis and the associate dean for academic personnel. Dr. Callahan, thank you so much for joining us as well.
Dr. Edward Callahan: It’s such a pleasure to be here. Thank you.
KB: So we were all very excited to see, Dr. Pomeroy, an article that you published in The Huffington Post in October of this year, “A Call to Action to Bring LGBT Health Disparities out of the Closet.” Can you tell us a little bit about what brought you to write this incredible piece?
CP: As an HIV doctor I’ve really spent my career fighting for social justice, fighting for my patients. And as an HIV doctor, that meant fighting for my patients in the LGBT community. I think that my attitudes and approaches to medicine were shaped very strongly by what I observed early in the HIV/AIDS epidemic, and in every patient that I saw suffer discrimination, suffer stigma, and suffer injustice, I knew that we had to work harder to ensure that their health was made a priority in our country today.
KB: Can you describe a moment in your early career when you felt like the impact of HIV and AIDS in the gay community really hit home for you with some of your patients?
CP: I think the impact of HIV/AIDS hit home in every patient encounter that I had, in every patient’s life that they trusted to share with me, their experiences. But I do remember one man. He was one of our first patients at our fledgling HIV clinic in those very early days. And remember, those were the days when there were no medications, and this was a disease of death and dying. And my patient was dying in the hospital—he was dying alone. And finally his family was coming to see him really for the first time in a long time, and it was probably going to be for the last time.
And he looked up at me that morning and he said, “I just want to take a bath and be cleaned up when they come.” And he hadn’t received that bath because the nurses were afraid that he would contaminate the bathtub, and he was too weak to shower. And I was in the position to make sure he got that bath. After his family left he said to me, “Thank you; now I can die with grace.” And that’s when I realized that even when we don’t have medications, we always have caring, we can always advocate for our patients, and we can find the way to make sure that everybody gets the benefit of our caring and our compassion.
And that’s when I knew I needed to be an HIV doctor who battled for social justice, who battled for my patients, and it’s really been a great honor because now we have so much more to offer. But in those early days when it was about fear and stigma and discrimination, it was so important to make sure that we remembered the patient experience and at least gave them the opportunity to do what he said, which was to die with grace.
KB: That is such a powerful story, and certainly over the last 25 years, we have seen a lot of those changes in our health care system. Can you tell us what are some of the milestones that you’ve seen as we move from that time of so much overt stigma and discrimination against LGBT people, against people living with HIV and AIDS, to the kind of health care system that you are working to continue to create now, that focuses on caring and compassion with an understanding of the kind of social determinants that structure the circumstances in which we live our lives?
CP: In the course of my career, I’ve gotten to watch the HIV epidemic move from a disease of death and dying to one of managing a chronic illness, where you could start worrying about ensuring quality of life, taking care of the whole patient—this holistic approach to the patient. And I think the field of HIV/AIDS in many ways led this transition to an orientation toward looking at quality of life, looking at a wellness perspective, rather than a disease perspective.
Funding through the Ryan White Comprehensive AIDS Resources Emergency, or CARE, Act, for example, supports a wide variety of services for people living with HIV or AIDS. The way that Ryan White funding was set up was to focus on case management, so that we could look at all of the social determinants of health and apply more than just a clinical focus to ensuring that holistic approach to the patient. So I think that in some ways the advances that we made in HIV/AIDS have impacted the whole field of medicine.
A second thing that I think is really important is we’ve learned the power of patient engagement and patient advocacy. And the gay community really led that with ACT UP—an AIDS advocacy organization founded in New York in 1987 during the height of the epidemic—and saying the system must respond and meet the needs of people with HIV/AIDS. And so that patient involvement, that patient engagement, that patient advocacy is, I think, the legacy of the LGBT community to the field of medicine.
And finally I would say that we’ve also seen over the course of the HIV/AIDS epidemic the power of science to find better answers, and we’ve seen the development of new drugs to treat HIV/AIDS, so that it did become a disease that could be managed. And we’ve seen the science of epidemiology allow us to understand this epidemic in ways that we could address it through behavioral changes, or the use of circumcisions, or the hope for a vaccine.
So I think if you take all of that, you see that we’ve learned so much through the HIV/AIDS epidemic. But my concern is that we need to ensure that we maintain our focus on patients and on diseases like HIV/AIDS and that we never become complacent, that we always understand that we must take care of the patient, have a holistic approach, apply science, and address all of the social determinants of health if we’re going to really take care of our patients and if we’re really going to create a healthier society that’s characterized by equitable health care and equitable health status.
KB: You oversee the UC Davis Health System and all of its academic research and clinical programs, which include the School of Medicine, the School of Nursing, a physician practice group, as well as an acute care hospital, the UC Davis Medical Center. Both of you work with the hospital and with the medical center, correct?
CP: That is true.
EC: That’s true.
KB: So what are some of the ways that the UC Davis Health System is working to maintain that focus on patients and equitable care, and to make sure that health disparities and associated social determinants of health are really brought into the practice of the UC Davis Health System on a day-to-day basis?
CP: I think we have strongly emphasized that to deliver culturally competent care, we need to be listeners. We need to listen to all of our communities—we need to listen to the LGBT community. One of the ways that we recently did this was in our cancer center. They did an online survey to anonymously ask the LGBT community about their health needs, and we learned a lot by listening. We learned, for example, that only a third of women who were eligible for mammograms were receiving them. So we understand that we need to focus on cultural competence and that we need to listen.
One way that we do this is, under Dr. Callahan’s leadership, we have focused on asking providers to voluntarily indicate that they are LGBT-friendly providers, and we share that information with our patients. We’ve developed training modules for all of our providers to help them understand communication techniques and approaches to culturally competent care.
We’ve integrated these kinds of issues, LGBT issues, into the curriculum that our students undertake, and we’ve looked at all of our policies here at the health system, in the hospital, in the faculty practice, and in our schools to make sure that they are LGBT friendly. We hold events such as National Coming Out Day, where we highlight the need for the whole community to come together and address health disparities in the LGBT community, including things like bullying. We also have a new employee and faculty group called GLEE—gay, lesbian, and everyone else who supports the LGBT community.
But one of the most important things, I think, that we’ve done is we have worked to include information on sexual orientation and gender identity in our electronic health record. And I would ask Dr. Callahan to summarize the work that he’s done in making this possible. If we don’t have the information about sexual orientation and gender identity in the electronic health record, then we can’t have the data that we need to make sure that we’re meeting LGBT patients’ medical needs. Ed?
EC: Sounds great. So let me back up just a little bit as I say that, because I think that part of this also stems out of the work that was done with HIV/AIDS. Some of the work that I was involved in earlier was part of the Special Projects of National Significance, or SPNS, that the federal government put on to try to improve the quality of care for HIV prevention and HIV-positive people. One of the things that we discovered there was that people who were HIV infected were very much committed to the idea of trying to prevent the transmission of the disease to their partners, to people they cared about, whether that’s in any way that they could make the change.
When we went out to work with people, we discovered that many of the providers who worked with HIV-positive people were not comfortable with having the discussions about the behaviors that led to the HIV infection, whether that be drug use with a contaminated needle or some form of sexual activity that resulted in the virus being transmitted from one person to the other. What we found was that providers very much wanted to be able to have these conversations but did not feel competent to have these conversations initially.
When we set up systematic training and gave people more information about the ways that the HIV virus is transmitted, in the language of the patient as opposed to the language of the provider, we were able to help providers expand their conversations and have more effective conversations helping people prevent the transmission of HIV. So the lesson that came here was that people would like to have these conversations but are not necessarily comfortable having these conversations.
When Dr. Pomeroy gave us the charge to put this into the electronic health record three years ago, we ran into some resistance. People weren’t ready or comfortable with that change yet, and I think that kind of reflects that fact that there has been a culture of “don’t ask, don’t tell” that has permeated medicine, where people have thought that it was impolite or unkind to assume that someone might be lesbian, gay, bisexual, or transgender—that everyone should be treated as heterosexual and comfortable in their own gender of origin as a matter of politeness.
As a result of that, most LGBT people were not out to their primary care providers, not out to other people. As a result you see the kind of devastating levels of health disparities that we’ve witnessed across the spectrum—starting really when LGBT children start to experience increased anxiety and increased depression due to being treated differently, to being bullied—to a variety of different causes along the way, maybe even to having parents that love them so much that they want to keep them safe by making sure that they don’t appear to be lesbian, gay, bisexual, or transgender, and inadvertently deliver the message to their child that they’re not loved and not wanted, and that they need to change in order to be acceptable for the family.
So we see what happens in the culture when kids are not comfortable with themselves as they go into adolescence—and they try alcohol, smoking, eating differently, changing their exercise, having sex early, and so on. There’s a whole variety of maladaptive ways of coping with the distress of anxiety and depression that LGBT teens run into, and those really lay the seeds and the foundation for a whole lifetime of health disparities that you start seeing in the Institute of Medicine report—“The Health of Lesbian, Gay, Bisexual, and Transgender People,” released in 2011—growing through adolescence and oftentimes getting worse through the lifetime instead of being supplanted by more healthy coping abilities.
What we’re trying to do with this brilliant idea of Dr. Pomeroy’s is to make the electronic health record an instrument to change the conversation between the provider and the patient, so if we make it easier for the LGBT person to come out in the electronic health record, that helps the provider know to whom they are speaking and allows a more comfortable conversation to occur.
There has been very little education about how to talk to LGBT people as part of traditional medical education training, so it was very understandable that our providers would have some reluctance about trying to have conversations that they really had not been well trained for up to that point. But just as in medical school, medical students learn to place central lines and do things that are physically challenging and very scary, they can also learn the easier and probably just as scary skills of having conversations with people who have a different sexual orientation or gender identity.
So we’re believing—we very much believe—that if we create the environment that helps prompt this kind of conversation and provide the education on how to do it, our providers have the opportunity to become more comfortable, and this becomes second nature and very easy to do. So we’re in the process of doing that—we’re using our electronic health record as a way to improve the quality of care that we provide for everybody, including those people who have significant health disparities because of who they are.
KB: Your reference to a culture of “don’t ask, don’t tell” in medicine is very interesting and certainly something that I think we hear a lot from LGBT community members themselves, thinking about sitting in a doctor’s office and not knowing whether it’s safe to disclose their sexual orientation or gender identity, not knowing whether the provider that they’re talking with is trained in providing culturally competent, appropriate care to LGBT people.
What would you say to LGBT community members who are really concerned that when you’re talking about the kind of disclosure of sexual orientation or gender identity that really helps providers understand who their patients are, that there’s always this tension of “is the provider that I’m talking to going to discriminate against me, or going to treat me badly because I’m LGBT?” What would you say to an LGBT person who was concerned about that situation?
EC: If the concern is so great that you’re not even willing to speak about this at all with the provider, you need to find a new provider. I think many times people have learned across their life how to hide their sexual orientation and gender identity, so that they can pass in public as being straight or cisgender—comfortable in their own gender of birth. As a result of that, they don’t get as much practice presenting themselves authentically.
When you don’t present yourself authentically, you’re hurting yourself. It’s a way that you’re giving up a piece of your soul, your whole existence, to another person, and one of the things that the past years since Stonewall—the 1969 riot in New York City that many credit with launching the LGBT civil rights movement—have done has made it very clear that holding your own identity and presenting yourself as self-accepting is a very important, key step in this.
CP: And if I could add, it’s also a key step in getting quality health care. If you do not have a physician that you can trust to share this information with, you may not get the quality of health care that you need. And it takes great courage in our society to share this information with your health care provider, but it is so important to do so. It is a tragedy when this information is not shared, and that adversely affects a person’s health—it results in disparities.
So I strongly encourage everyone to once again look inside themselves and have the courage to share this information as a gift to themselves, as a gift to their health. And if that conversation does not go well, I agree strongly with Dr. Callahan that the person owes it to themselves to go find a different provider—one who is culturally competent and one with whom you can establish a trusting relationship. The physician-patient relationship must be based on trust, and if there is not enough trust to share information about your sexual orientation or your gender identity, then it won’t be possible for you to get the health care that you deserve.
KB: As part of the ongoing national effort to reform our health system, we’re seeing a greater focus on patient-centered care, or patient-centered medical homes, or other ways of developing that greater trust between patients and providers.
What do you think needs to happen on the national level as an initiative, for example, of the Department of Health and Human Services to make sure that LGBT people are increasingly likely to encounter providers who are trained to provide culturally appropriate care for them? And so that those who are going to community health centers, or who are in a circumstance where they are not as easily able to choose their own provider, have a greater likelihood of encountering properly trained providers? What can the Department of Health and Human Services do?
EC: I think perhaps the most critical first step is to require that every electronic health record presented, that’s provided commercially, has to have sexual orientation and gender identity built into it as demographics—as part of the way that the person presents themselves in the health system and a key part of the care that they are given. If the federal government does not require that, it will just be seen as something that’s too uncomfortable to deal with, and it will be swept to the side. And we’ll have to wait another generation to have the kind of quality care that’s possible if we are actually putting sexual orientation and gender identity into the electronic health record.
CP: I would agree with that. We have meaningful use criteria that are linked to reimbursement that require inputting race and ethnicity and primary language. We should raise our voices and say it is equally important to have information in every electronic health record, in every patient’s record, about the important demographics and information on sexual orientation and gender identity. This is something that is critical to ensuring high-quality health care.
Furthermore, I think we need to call on everyone to understand that discrimination in health care is unacceptable and go to the patient relations office, go to advocacy groups. If there is a negative experience, please have the courage to share it, so that we can work together to demand that the system change.
And finally I would urge that the government invest in training programs around LGBT health issues, reducing LGBT health disparities, and helping providers become culturally competent. We need to say that the necessary investment must be made by our society in ensuring fair, equitable, and just health care for everyone, and that the LGBT community should not be suffering from these health disparities and should not suffer from discrimination in health care. And we can do that—we can do that together.
KB: We’re certainly very fortunate to see institutions like the UC Davis Health System really leading the way on collecting data on preventing discrimination and providing cultural competency training to providers. If you are looking at the LGBT community, all of us who are encountering the health care system on a day-to-day basis, or making choices about our own health, our own lives and well-being every single day, what is the best single step—as we are wrapping up our conversation here—that anyone can take, whether they’re LGBT or not, to help keep themselves healthy and well?
EC: Perhaps the most important thing is to recognize that the most powerful prevention tool that we have, and the best treatment we have, is to control our own behavior—to make sure that our behavior is such that we are doing everything that we possibly can to prevent having bad health outcomes down the road—and that our behavior aligns with what we need to do. We’re the most powerful tool, the most powerful medicine, that we have access to in terms of dealing with preventing disease and dealing with treating disease, so working on what we’re doing relating to keeping our health intact is very much critical.
CP: I agree that it’s essential that we focus on prevention, and we focus on wellness, and we each look at our own lives and say, “How can I pursue healthy behaviors? How can I eat right? How can I exercise? How can I live my life in a way that advances my own health and my own well-being?” And so we must embrace that responsibility for prioritizing our health. And I think that needs to be accompanied by being an advocate to change the health care system so that it is designed in a way that reduces health disparities. We often say every one of us must make good choices, but we all need to live in a society that allows us good choices to make.
KB: And we hear that echoed so strongly from places and people like the surgeon general, who said that our work together is making sure that the healthy choice is the easy choice. And there’s certainly a long way to go, but with the leadership of people like yourselves, we are making progress toward, I think, a much brighter, healthier future for everybody in this country, including LGBT people.
Thank you both for spending this time talking with us today. It’s been a real privilege to hear from you some of the lessons you’ve learned, the experiences you’ve had, and the visions that you see for where we as a nation are going moving forward.
EC: Thank you.
CP: Thank you.
This interview was edited for length and clarity.
Kellan Baker is a Health Policy Analyst with the LGBT Research and Communications Project at the Center for American Progress. For more on this initiative, please see its project page.
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