HIV Project: Lambda Legal


Know Your Rights
Scott Schoettes, Lambda Legal’s HIV Project Director, helps us navigate today’s HIV legal issues
by Alina Oswald

[dropcap]W[/dropcap]hat I love the most about the law?” says Tom Hanks playing Andrew Beckett in Philadelphia. “It’s that every now and again—not often, but occasionally—you get to be a part of justice being done. That really is quite a thrill when that happens.”

In real life, nonprofits like Lambda Legal help make that happen every single day. And that is vital for individuals living with HIV and AIDS. Once, before treatments revolutionized our options, we described an HIV-positive diagnosis as the equivalent of receiving a “death sentence.” The analogy to the justice system was apt and perhaps prescient. Today, individuals with HIV/AIDS are often living longer, but the current AIDSphobic climate of our society still casts living with HIV as a criminal act. Individuals living with HIV/AIDS are frequently facing not “death sentences” but possibly prison sentences for possessing a “deadly weapon,” or at least unjust treatment in the form of healthcare and employment discrimination.

Founded by Bill Thom in 1973, Lambda Legal is the first legal organization in the U.S. to fight for full equality for the LGBT community. Starting out with a group of lawyers volunteering their services, over the years the nonprofit has grown to include, today, a staff of more than eighty experts working in five offices—New York, Chicago, Atlanta, Dallas, and Los Angeles—that cover the country. Each state falls in one of these five regions.

Lambda Legal provides help to individuals through its network of attorneys that are willing to work, sometimes on a pro-bono or reduced-fee basis, for people in the community that it serves. The nonprofit tries “to bring the cases that are forging new paths by creating new laws that protect the community we serve,” Scott A. Schoettes, HIV Project Director at Lambda Legal, explains. “We’re looking for cases that will not only serve the individual, but also the broader community.”

Schoettes started working at Lambda Legal in 2007, when he applied to be a generalist, doing general LGBT work. It so happened that at the time there was a position available as an HIV-specific staff attorney. Living with HIV himself, and open about his status, Schoettes accepted the position, since it fit him perfectly. “My HIV status provides a kinship with people that I serve,” he says over the phone. “It was just ideal for me to step up into that role.” About two years later, he stepped into the position of HIV Project Director.

Schoettes has successfully litigated many cases. He was also the “point person for Lambda Legal’s work on the repeal of the HIV travel ban,” and, among many others, he has presented various HIV discrimination topics at forums at the White House, the 2013 Lavender Law Conference of the National LGBT Bar Association, and also across the country.

He explains that when it comes to HIV and AIDS, much of the Lambda Legal work has to do with prevention. “Because,” Schoettes says, “when we’re enhancing the rights of LGBT people, when we are improving [their] self-esteem and access to justice, we’re actually empowering [them] to make better choices, and hopefully avoid becoming HIV-positive. So, I think that part of the work that we do is HIV-related, even though it’s not directly HIV-related.”

He points out that there are a couple of legal issues that those living with the virus should be aware of. One is access to care. The other deals with discrimination.

Access to healthcare (or lack thereof) comes in different forms, in terms of how people are denied care. One is that they cannot afford healthcare. The ongoing problem of HIV medications being priced based on the tiers of the insurance plans makes it more difficult for people to obtain their HIV-related care. “These are all things that we see as potential discrimination,” Schoettes explains, “and one of the ways to address these problems is through legal suit.”

Directly connected to access to healthcare is preventive care. “I think an emerging issue is access to PrEP,” Schoettes says. “We know now that [PrEP] is a very effective prevention methodology, when it is used correctly. And what we’re concerned about is that there would be an uneven distribution of access to it for people who have lower income. We want to work to ensure that that doesn’t happen.”

The reality is that PrEP is expensive. Very few people can afford to pay for it out of pocket. Therefore, it requires access to health insurance. Under the Affordable Care Act (almost) everybody is supposed to have health insurance. What Lambda Legal does is try to make sure that that insurance is available and affordable, and that it covers the co-pays for people who want to use PrEP, so that they can afford to be on this medication.

But that’s not always easy, especially in the South. Sometimes barriers put in place in particular by Southern states could lead, ultimately, to taking the medications out of many people’s reach altogether, and have a direct and profound impact on many people’s everyday lives. “The failure to expand Medicaid has an effect on people living with HIV that we serve,” Schoettes says, speaking about the region. “And there are lots of people who are not eligible for Medicaid in those states, [nor] for subsidies under the ACA. And that’s a real problem. That’s something that now can be addressed under the ACA,” he says. “The [healthcare law] has now discrimination provisions.”

When it comes to HIV and access to care, another issue is discrimination from providers. “The LGBT community faces discrimination from providers, and so that’s an issue that we work on,” Schoettes says. “And it’s true for people living with HIV as well. There’s still fear surrounding HIV transmission. In addition, when it comes to prevention, some providers do not prescribe PrEP not based on medical reasons, but based on their moral code and beliefs.”

A second issue surrounding HIV is employment discrimination. Many employers still have misunderstandings and misconceptions about HIV—how it is (or it’s not) transmitted. “It’s so frustrating,” Schoettes says. “It shows the depth of the fear and stigma that surround HIV.”

That brings us to disclosure outside of personal relationships.

“I think that in these sorts of situations, people need to think about to whom they disclose this information,” Schoettes says. “I’d love to be in a world where I could tell everyone that they should come out about their HIV status and live openly with HIV as I get to do, but I’m in a privileged place that I get to do that. And at this point [disclosing] is not something that we’re telling people to do.” When it comes to disclosing one’s HIV status, he advises to “Be selective! There’re very few reasons for the employer to know this information. Become informed about what your rights are, and also about how HIV is or is not transmitted.”

Maybe the biggest problem is one that has made headlines, and that is HIV criminalization, a set of harsh laws that allow individuals to be charged with a criminal act for even merely perceived exposure to HIV, for example, not disclosing a positive status in an intimate relationship even if transmission did not occur or being charged with assault for spitting on another person. I can’t help but wonder what would happen if (or hopefully when) these laws were to be reverted. And how about all those imprisoned because of this law?

“First of all, we have to change the law in all states,” Schoettes says. “After the law is changed, unfortunately people would still remain imprisoned until someone, a governor, [signed] an executive action to pardon or release them. I think that’s the relief that people would have to go for after the law is changed. This is different from the case we’ve worked on in Iowa, [where] we took it to [Iowa] high court and we got the high court to reverse the conviction.”

Nick Rhoades, who is living with HIV, was charged with intentionally exposing Adam Plendl, a one-time sexual partner, to HIV. A condom had been used. Plendl did not contract HIV from the encounter. Yet Rhoades was charged, brought to trial (being counseled, unwisely, to plead guilty), convicted, and sentenced to twenty-five years in prison (later suspended and replaced with supervised probation for five years) and registered as a sex offender for the rest of his life. Lambda Legal successfully appealed and a court set aside the conviction based on the fact that a viral load suppressed by effective treatment presents little risk for transmitting the virus.

“[Hence] Nick Rhoades is no longer a felon and no longer has that on his record.”

While some argue that present laws should be repealed, Schoettes would like to keep them in place, only until new and better laws are created. After all, it might take years to revert the HIV criminalization laws. “My concern is that if right now we just repeal [the laws] we’ll end up in a situation that we have in a state like New York, where there is no HIV specific criminal law, but people are still prosecuted under other types of provisions.” He emphasizes that what’s needed is to create a just environment, new laws that would make much harder these kinds of prosecutions.

Schoettes points out that preventing transmission of HIV is everybody’s responsibility. He emphasizes the importance of using PrEP for example, and reminds that having a depressed viral load considerably reduces the possibility of transmission.

“We’ve come a long way in terms of how people view HIV. In the same time, there are [still] a lot of misconceptions out there. People don’t have a lot of information about the latest science. Our laws are a little bit stuck right now in the old paradigm. And so, I think we need to update not just the laws, but [also] people’s understanding,” Schoettes says. “I do think that PrEP is already having an effect on how we talk about prevention in the gay community, because there is some recognition that prevention is a shared responsibility.”


For more about Lambda Legal, visit For in-depth information about legal issues related to HIV, AIDS and others, go to Know Your Rights,


Alina Oswald is Arts Editor of A&U.