As the first transgender person to hold an office that required a U.S. Senate confirmation, Rachel Levine, M.D., already carried a legacy as a powerful advocate for social justice and public health.
She only further cemented that reputation during Senate hearings in February 2021, prior to her confirmation as Assistant Secretary for Health for the U.S. Department of Health and Human Services (HHS). Levine refused to play Sen. Rand Paul’s stigmatizing word game, in which he constantly (and inaccurately) framed gender-affirming surgery and hormone therapy as “genital mutilation” and “amputation surgery.” Her response: an offer to meet with him to discuss the particulars of the standards of care for transgender medicine.
In her short time in office, Levine has already sent a message to both the HIV and LGBTQ communities that she has our backs. As a part of the U.S. government’s efforts to acknowledge the 40th anniversary of the first published reports of what became known as AIDS, Levine spoke with our correspondent Terri Wilder about her experience providing HIV care as a pediatrician during the early years of the HIV/AIDS epidemic, her vision for her new role, and the long history of how HIV and LGBTQ advocates have brought about change both within and outside the political system.
HIV in the Early Days—and in Pediatric Medicine
Terri Wilder: Thanks for speaking with me today, Dr. Levine. First, I want to congratulate you on your appointment. Can you start off by talking about your medical career—particularly, where you went to school and why you decided to become a doctor?
Rachel Levine: Sure. I grew up in the Greater Boston area. I went to a private school called the Belmont Hill School, which was not that far from my home. It’s primarily a day school, but there were some boarders. It was an all-male school, so that was interesting. I loved Belmont Hill. I received a great education there. I think that they did a great job.
I had the opportunity to go back to Belmont Hill a number of years ago as an openly transgender woman and speak to the students there, which was just great. We talked about my experiences at Belmont Hill. We talked about LGBTQ issues. And I was very, very warmly received.
I went to Harvard College and then the Tulane University School of Medicine. I just actually was asked to speak at Tulane’s commencement. We had to do that remotely, and I had taped remarks, but that was really gratifying—to be able to speak, at least remotely, to the graduates at Tulane.
I really enjoyed biology in high school and then studied that at Harvard. Then I went to work at a research lab at Boston University School of Medicine and decided to fulfill all the pre-med requirements and go to medical school.
At medical school, I rapidly became really, really interested in pediatrics, in taking care of children and teenagers. I felt that that was where my vision lay, to be able to take care of children and teens. They had a professor there that was very interested in this new field of adolescent medicine, and so I became interested in [providing care to] teenagers, which I found really stimulating and challenging.
After medical school, I did my training at Mount Sinai in New York City, and trained in pediatrics. Then, I was chief resident in pediatrics, and then I did my fellowship in adolescent medicine. That was from 1983 to 1988.
“I got ... a text from the Biden administration, asking if I would be interested in a position, and called back the next day. I got that text at 10 o’clock at night. I couldn’t sleep so well.”
I highlight the years I was there because I was in New York City during the beginning of the HIV/AIDS crisis. I started my pediatric residency program in 1983. Now, I have a pediatric perspective on it—not internal medicine or something like that. We started to see, in the early ’80s, babies who were very, very sick and had immune deficiency. Their mothers became very sick and had immune deficiency. Tragically, they all passed away. Sometimes their fathers would pass away, as well.
But we also saw teens with immune deficiency in the adolescent program. Then we saw teens with hemophilia that developed HIV and AIDS. All of that was just being explored and delineated at that time. So, it was a really challenging and, in many ways, tragic time to be training with those children and their parents, and the teens.
You compare that to now, with the advances that have been made in HIV disease and AIDS. I would have thought it was a miracle that you had something like the HIV prevention regimens [PrEP] or PEP—that you could take a medicine if you were vulnerable and not get HIV disease. Or that you could get treatments, one pill a day, to be treated for HIV—not cured, of course, but treated—so that you could be undetectable. And U=U [undetectable equals untransmittable]—all of that, we’d have long thought, would have been a miracle. So we’ve come a long way. But it has taken a long, long time.
After my training in pediatrics, I then was at Mount Sinai in academic medicine. I was also involved in a practice at Lenox Hill. In 1993, I moved from Manhattan—80th and First in Manhattan—to Central Pennsylvania to work at the Penn State College of Medicine. That was obviously an enormous change, an enormous transition.
I stayed at the Penn State College of Medicine for over 20 years, at the Medical Center for almost 20 years—and then I got this fateful phone call from the [Pennsylvania Governor Tom] Wolf Administration to be the co-chair of the transition’s Committee for Health. Then when we completed that, I was offered the position of Physician General, which was a tremendous opportunity. In July of 2017, just about four years ago, I became the [Pennsylvania] Secretary of Health and was doing that during COVID-19.
Then I got another fateful phone call from—actually, a text from—the Biden administration, asking if I would be interested in a position, and called back the next day. I got that text at 10 o’clock at night. I couldn’t sleep so well. But we discussed the position of the Assistant Secretary of Health. And here I am.
Wilder: Well, that’s amazing.
Levine: That’s a rapid run-through of my career.
Reflections on 40 (Official) Years of HIV/AIDS
Wilder: As you know, June 5th is around the corner. Folks are gearing up to recognize this as “the 40th anniversary of HIV.” But there’s an artificiality, regarding the June 5th MMWR report, as the 40th anniversary of HIV. This was a moment that the broader public became aware of an illness that had existed within the community for quite some time already, and that was already generating plenty of rumor.
Having said that, can you talk about any memories prior to your time at Mount Sinai—and, particularly, prior to June 5, 1981— that, on reflection, may have involved people living with HIV before we really had the language and the awareness that there was this emerging global pandemic?
Levine: Before 1981, no. In college, I was majoring in biology; I graduated college in 1979 and really did not. Then, in the first few years of medical school, traditionally it’s the preclinical years. So, we might see a few patients that we start to do an interview on, but I really didn’t see a lot of patients before 1981, because I graduated in 1983.
My first exposure [to HIV care] was in New York City in 1983, as an intern at Mount Sinai—taking care, at that time, of babies with an acquired immune deficiency, who would develop opportunistic infections like pneumocystis and others, and fungal infections, and die. Then, either beforehand or at the same time, others would develop infections, and they would pass away.
Most of the patients—it’s hard for me to remember exactly, but many, if not most of the patients—had had a blood transfusion. That’s how they contracted the virus.
As I progressed, we used to see teens that had gotten HIV through either needle sharing or sexual contact and would pass away. And then I saw the patients with hemophilia that had contracted HIV through factor. I remember in our rounds, in our daily conferences, talking about acquired immune deficiency and just starting to learn about the virus that can cause it. So for me, it was 1983 that I first really became exposed, during my residency program.
I did know someone who passed away in the ’80s of HIV, someone in the LGBTQ community: a gay man who was a resident with, at that time, my wife; now my ex-wife. He was a resident in her program—she’s also a physician. He contracted HIV and died. I don’t know exactly when that was, but it was in the ’80s.
Before ’83, I don’t remember a lot of discussion in medical school in New Orleans at that time. But we rapidly began to study it extensively in pediatrics at Mount Sinai in ’83.
“I want to serve as an advocate for the LGBTQ community. I guess you could say a role model. I understand how important this is.”
An Advocate for LGBTQ Visibility and Rights
Wilder: You have officially been the Assistant Secretary of Health since March 26th, around two months now. As the first transgender person to hold this position and one of only a few openly transgender government officials in the United States, what do you think this appointment means for transgender visibility, rights, and awareness?
Levine: First of all, for me it’s an absolute honor. It’s an honor to have been nominated by President Biden and the administration. It’s an honor to have been confirmed with a bipartisan vote. I will do everything I possibly can to fulfill the expectations that everyone has for me in this position.
I think for LGBTQ people, I stand on the shoulders of those that came before me. I realize that I am very fortunate. I transitioned about 10 or more years ago at an academic medical center at the Penn State College of Medicine, at the Penn State Hershey Medical Center. It was an academic medical center. They had nondiscrimination policies. I met a number of strong advocates for me. And I’m very grateful to Penn State because they didn’t just tolerate me, and they didn’t just accept me, they really welcomed me for the diversity that I brought to the campus and to the medical center and the College of Medicine. I know that that—I absolutely know—that I’m very fortunate, that that’s not actually the way that it transpires for most trans individuals.
There are people who have come before me—we know their history. There are people that we never knew that had to work in the shadows. I am grateful for their work and their sacrifice so that I could have the opportunity to be a physician at the Penn State College of Medicine, and to be Physician General, and then Secretary of Health in Pennsylvania, and now the Assistant Secretary for Health.
I want to serve as an advocate for the LGBTQ community. I guess you could say a role model. I understand how important this is. But I think it is my duty to make sure that I may be the first, but—you know, the Vice President [Kamala Harris] said, “I will not be the last”—so that others will come after. Then hopefully, to be honest with you, I won’t be the transgender Assistant Secretary of Health. There will be another Assistant Secretary of Health, or some other department, and it won’t really be that unusual that it would be a transgender individual. But I know right now that I’m the first, and so I’m grateful.
“I absolutely have their back. And I will do everything I possibly can to work for and advocate for the LGBTQ community at large, and particularly LGBTQ youth.”
On Improving LGBTQ Health in the U.S.
Wilder: I went through your Twitter feed last night, just trying to get a sense of: Who are you? What are your values? What are your priorities? On May 19, the Trevor Project tweeted, “42% of LGBTQ youth seriously considered attempting suicide in the past year, including more than half of trans and nonbinary youth.” This was data from their 2021 National Survey on LGBTQ Youth Mental Health.
In response to that, you tweeted on May 22: “These findings are heartbreaking. I want all LGBTQ+ youth to know that there is a place for you in America. You are brave and this administration has your back—we will continue to advocate for the most vulnerable in our communities.”
What are your plans to improve LGBTQ health and address the health disparities that the community in the U.S. experiences?
Levine: I think that that’s critically important. Everything that I said in that tweet—I absolutely have their back. And I will do everything I possibly can to work for and advocate for the LGBTQ community at large, and particularly LGBTQ youth.
I do strongly feel that we have not made progress as a community until we all have made progress. There are other vulnerable aspects of our community: LGBTQ seniors, LGBTQ immigrants— especially with the challenges of the previous administration, LGBTQ youth, and particularly LGBTQ individuals of color. Transgender women of color are not just at risk of discrimination or harassment, but they’re at risk of violence and murder. We have to take care of and advocate for the most vulnerable of our community.
My goal is to do that from an external point of view, which means external public advocacy—like this interview, like that tweet—and to be very public and very vocal of my advocacy in support for the community. That is absolutely necessary. But it’s not sufficient, because we have to work within policy.
I’m a member of the president’s Gender Disparities Council, which is an administration-wide council looking at gender disparities from many perspectives. Also, we want to work within, particularly, the Department of Health and Human Services in terms of LGBTQ policy issues.
The first, we’ve already started: That is the Office of Civil Rights declaring several weeks ago that HHS is reinterpreting Section 1557 of the Affordable Care Act—and that, when it says “sex,” that that includes sexual and gender minorities, that includes sexual orientation and gender identity, and it includes LGBTQ people. So all aspects of the Affordable Care Act will be interpreted under that change in interpretation. I think that that’s going to be really, really important.
But then all of our different offices, whether it’s the Office of the Assistant Secretary—and all of my different offices, whether it’s SAMHSA, whether it’s HRSA, whether it’s CMS—we all need to be looking at our policies and how we can change policy to be fair to LGBTQ individuals. So we’ll be doing that internal work at HHS and really across the administration, as well. External advocacy and internal policy: That’s what we’re going to do.
On Re-Engaging and Empowering the HIV Community
Wilder: I also came upon another tweet you sent out on May 19, in which you tweeted, “HIV stigma has consequences. It can discourage people from getting tested for HIV and prevent people with HIV from accessing or staying in HIV treatment/care. We all have a role to play in reducing HIV stigma. I encourage you to use your voice.”
What are your plans to address HIV nationally? Are there any specific projects, programs, funding, or campaigns that your office will be working on?
Levine: Absolutely. We have an Office of Infectious Disease and HIV/AIDS Policy. I know that the previous administration had [merged] a couple of offices together, but that will not limit in any way our advocacy and work for patients with HIV disease and AIDS.
We are going to work on ending the HIV epidemic. We’re going to build on that initiative. We need to work to diagnose new cases earlier. We need to treat people rapidly and effectively. We need to prevent new HIV transmissions. We have to get the word out—there’s a program where people can get free PrEP, but not as many people as we’d like have taken advantage of that. We need to respond to outbreaks. We need to push for syringe service programs throughout the United States.
This is going to be a collaborative effort. It’s not just our office; of course, the CDC, the NIH, and HRSA have a big role to play, and all the offices across the Department of Health and Human Services.
We also want to engage the HIV community in this. We need to do this not from the top down—we need to reengage with, energize, and empower those in the community. We’ve already had meetings for that where we include people with HIV disease in these policy initiatives and in this plan. So, we cannot do this alone from Washington. We need to involve the community in the United States.
We need to work internationally, because we need to work with our partners across the world. HIV, like other epidemics and pandemics, doesn’t know borders. So we need to do this globally.
We have a lot of work to do. We need to use community-based organizations, other networks, as well as our clinicians and researchers, federal government, state government, local government. And we need to involve the community in every aspect of this.
Wilder: I’m sure you know that the HIV community has a very long history of demanding to have a seat at the table, very much around the idea of “nothing about us without us.” I hope that continues, because we certainly are a loud group who wants to be involved in the services that impact the lives of the community members.
Levine: I just want to say I agree with that a hundred percent. The community deserves to be involved. You have to be involved for us to be successful. We need to ensure that the community—people with lived experience—are part of the planning, the development, the implementation, and all different aspects, in order to be successful in ending the HIV epidemic.
Lingering Concerns About the Impact of COVID-19 on HIV Care
Wilder: Do you have any concerns regarding COVID-19 and the impact that it’s had on HIV care and social services? I mention this because I have talked with many HIV service providers across the country who have concerns that people have not been able to access HIV testing, prevention services, care services during COVID-19. They are very concerned that we might see an increase in HIV—potentially people being diagnosed very late—because of COVID-19 shutdowns.
Levine: That’s entirely true. With other chronic illnesses, people have not had access to health care. That’s true in terms of HIV, as well—that people have not had access to PrEP and prevention. People have not had easy access to syringe service programs, in terms of prevention. People have not gotten tested. People haven’t been able to keep up with their treatments, and their viral loads might be higher. They might be more susceptible to transmitting the disease, but also to opportunistic infections. I think that that’s absolutely true.
As we continue to battle COVID-19—and we’re not done yet—we have to get further engaged about HIV. We have to engage about opioids. You know, we’ve seen an increase in terms of overdoses—we need to work with syringe service programs.
I had worked in Pennsylvania to expand syringe service programs beyond Philadelphia and Pittsburgh. That work continues. There is still a lot of work that HHS, CDC, and all of us in public health need to do to get re-engaged about HIV and with the community, and work on all aspects. To work on prevention. To work on testing. To work on treatment, and on every aspect of the HIV epidemic.