Smart Money Podcast: HIV Prevention and Gender-Affirming Care: Costs, Solutions and Legalities of LGBTQ+ Health Care

Welcome to NerdWallet’s Smart Money podcast, where we answer your real-world money questions. In this episode: Understand the financial and legal challenges in LGBTQ+ health care, including HIV treatment and gender-affirming surgery.

NerdWallet’s Sean Pyles and Sam Taube delve into the intricate financial and legal issues faced by the LGBTQ+ community regarding their health care. They start by exploring the struggle to prevent and treat HIV, focusing on the effectiveness and financial burden related to pre-exposure prophylaxis (PrEP) and highly effective antiretroviral treatment (HEART). Sam speaks with Tim Horn, a director of the public health systems team at the National Alliance of State and Territorial AIDS Directors, or NASTAD, about these drugs and highlights available resources for those dealing with these expenses. The discussion isn't just about costs, but also shines a light on the barriers and shares resources.

Sam then discusses the high cost of gender-affirming care for transgender individuals. He speaks with Andrea Romero, a licensed financial advisor based in New Orleans, about how costs can start accumulating even before hormone therapy or surgery, including expenses related to therapy sessions, hair removal, binders or gaffs, and wardrobe changes. She also addresses the high costs of gender-affirming surgery, health insurance coverage, and resources and financial strategies that can help individuals manage these costs.

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NerdWallet stories related to this episode:

How to Find an LGBTQ-Supportive Financial Advisor

How Trans and Nonbinary People Can Change Names on Credit Reports

6 LGBTQ+ Financial Influencers to Follow in 2023

Have a money question? Text or call us at 901-730-6373. Or you can email us at [email protected]. To hear previous episodes, go to the podcast homepage.

Episode transcript

Sean Pyles: Health care across the board is expensive in the U.S. Compared with other developed nations, we pay close to twice as much as Germany, the second most expensive, and over three times as much as South Korea between government spending and out-of-pocket costs. And today, especially in light of numerous state laws, our out-of-pocket costs can be even higher if you're a person needing, say, gender-affirming surgery.

Andrea Romero: You can easily expect to be out for two, three, maybe as long as six months depending on your surgical regimen and what's going on in other existing conditions. The ability to not earn income in three to six months, that will add up quickly to $10-, to $20- to $30,000 depending on what your income is and where you live.

Sean Pyles: Welcome to NerdWallet's Smart Money Podcast. I'm Sean Pyles.

Sam Taube: And I'm Sam Taube.

Sean Pyles: Today we feature our third and final episode of our Nerdy deep dive into the cost of bodily autonomy.

Sam Taube: We're going to talk about some of the challenges faced by members of the LGBTQ+ community when it comes to paying for health care, from HIV prevention to what it now takes in some states to afford the high medical costs of gender transition.

Sean Pyles: Sam, I know this subject matter is close to you personally.

Sam Taube: Yeah. I, as a bisexual man, have personally struggled with the cost of HIV prevention. HIV may not be in the headlines anymore, but it's still out there. More than 1.2 million Americans are living with HIV, and more than 700,000 in total have died of HIV-related illnesses, and gay and bisexual men have accounted for about half of those deaths.

But the number of AIDS deaths per year has fallen by more than 90% since 1990, and the number of new infections per year has also fallen by more than 73% since 1984. Some of that decrease in infections is thanks to a group of medications called pre-exposure prophylaxis, or PrEP.

Sean Pyles: Right. HIV-negative people who are at risk of infection, such as gay and bisexual men, can take PrEP to protect themselves from the virus. It's a small dose of the same types of drugs that are used to treat HIV in the form of a daily pill or bi-monthly injection.

Sam Taube: Yeah, that's correct. According to the Centers for Disease Control and Prevention, PrEP can reduce the risk of getting HIV from sex by about 99%. Yet, as of 2020, the CDC said that only about a quarter of at-risk Americans were taking it.

Tim Horn is a director of the public health systems team at the National Alliance of State and Territorial AIDS Directors, or NASTAD. I started by asking him for a brief overview of what PrEP is and what it does.

Tim Horn: While we've been researching and implementing antiviral drugs that target HIV as treatment for people living with HIV really since the 1980s, using these exact same drugs to prevent HIV-negative individuals from becoming infected is something of a newer strategy. The first antiviral product for PrEP, known as Truvada, was approved in 2012 for daily oral use. Since then, two other brand name drugs have been approved for PrEP, including Apretude, which is a product that can be administered every two months, and low-cost generic versions of Truvada have become available.

How these drug products work with a very high degree of effectiveness, if they are used as recommended, is by preventing HIV from establishing infection in the body if someone is exposed to the virus as a result of sexual activity and injection drug use. It's a pretty remarkable scientific advancement that, unfortunately, hasn't come close to achieving its potential in terms of preventing HIV infections on a population level, both in the U.S. and globally. Just by way of an example, as of 2020, really only 25% of people eligible for PrEP were prescribed it.

Sam Taube: What is the pre-insurance cost of those different kinds of PrEP? What is the sticker price?

Tim Horn: Make no mistake, these drugs, at least the brand name versions of these drugs, are expensive. Oral Truvada and another brand name product, Descovy, are around $25,000 a year. Apretude, the injectable version of PrEP, is around $23,000 a year. While there are generic versions that are costing pharmacies around $20 a bottle or $20 a month, the retail prices can vary considerably.

Even if we're talking about a retail price of around $20 to $30 a month, this can be a very heavy lift for a lot of people without insurance. It's also important to remember that PrEP isn't just medication. It requires clinic visits and labs to ensure that the medications aren't causing side effects and that the individual is in fact remaining HIV negative. So, the pre-insurance costs for these can also be quite considerable.

Sam Taube: Does insurance, whether we're talking about private health insurance or Medicare and Medicaid, help pay for PrEP? And does that insurability include both the medications and the lab tests?

Tim Horn: Insurance is super important when it comes to PrEP affordability, and by extension access. This is particularly true following a grade A recommendation from the U.S. Preventive Services Task Force, or USPSTF, for PrEP in 2019. In short, the USPSTF is an independent volunteer panel of experts in disease prevention and evidence-based medicine. And it is effectively charged with making health care recommendations, which are typically given a grade between A and D, with recommendations graded as A having a legal effect under the Affordable Care Act of requiring health insurance plans to not only cover the drug but to do so without requiring deductible payments or co-payments toward insurance coverage of the drug, and this also should apply to the clinic on lab costs associated with PrEP.

The implications of the USPSTF grade A recommendation are pretty far-reaching, as they apply to Medicaid programs that have been expanded under the Affordable Care Act, as well as most individual and group commercial insurance plans. The USPSTF grade A recommendation for PrEP has effectively made PrEP coverage, both, again, through commercial insurance as well as public insurance, like Medicaid expansion programs, a priority for a huge swath of these payers covering people at risk for HIV infection.

Sam Taube: I also wanted to go through a similar set of questions but this time about treatment for HIV-positive people, which I believe is referred to as HEART. Can you give us a brief overview of what that is?

Tim Horn: Highly effective antiretroviral treatment, or HEART, involves a combination of drugs to effectively halt replication of HIV in the body. This has two benefits. First, it greatly helps to protect the immune system, which helps to prevent many of the diseases associated with AIDS, or acquired immune deficiency syndrome. It also is tremendously important from an HIV prevention standpoint whereby people living with HIV who have undetectable viral loads after a while taking these medications cannot transmit the virus to their sexual partners.

We've come a long way in terms of HIV treatment with options being highly effective, medications associated with fewer side effects, and medications that are much easier to take. For example, there are several one-pill, once-daily options, as well as injectable products for once monthly or every-other-month dosing.

Sam Taube: What is the pre-insurance cost of different kinds of HEART, and does insurance typically pay?

Tim Horn: The cost of HEART, or these antiretroviral drug combinations that are used to treat HIV, these can sort of weigh in at an excess of around $40,000 annually, which really makes it one of the most expensive therapeutic classes, especially when you consider that this is a treatment that effectively needs to be continued for a lifetime.

We do have fairly robust insurance coverage of HIV treatment, including by commercial insurance plans, by Medicaid and by Medicare. In fact, we also have a national program for low-income people living with HIV, including those who are uninsured, known as the AIDS Drug Assistance Program and the larger Ryan White HIV/AIDS Program. It's pretty important in terms of getting people living with HIV in care and keeping them in care. I think that really cannot be overstated. It's important to note that we don't have a similar program for low-income and uninsured people at risk for HIV in the United States.

Sam Taube: I do know there are some resources from nonprofits and whatnot. Could you speak to some of the resources that are available to help people afford PrEP?

Tim Horn: First, it's important to recognize that there are a number of community programs all over the country that are providing comprehensive PrEP services, including free or low-cost PrEP care and labs for low-income, uninsured individuals, as well as assistance navigating insurance coverage opportunities and challenges in addition to safety net programs to help with the affordability of the medications themselves. These include patient assistance programs and copay assistance programs that have been set up by manufacturers of all of the brand name PrEP drugs, foundations such as the Patient Advocate Foundation, that can provide financial support, as well as state government programs known as PrEP drug assistance programs, or PrEP DAPs. Those two are programs that can really help to fill the gaps for individuals who are in need of these essential services.

In terms of trying to figure out where to get started or where to access these services, I would probably start by checking out hiv.gov, which does have some special databases to link up with some of these community programs that can provide and help navigate these applicable services for PrEP.

Sam Taube: Then, my last question is just a repeat of the previous question but about HEART. You had already touched on the fact that we do have a national plan for that. Are there other resources that you want to mention to help HIV-positive people afford HEART?

Tim Horn: Yes, absolutely. Much like HIV prevention, there are a number of manufacturer and not-for-profit programs that can help to defray the cost burdens associated with HIV treatment, including for fully insured individuals, so, again, like copay assistance programs. But it's important to recognize that making sure every single person who tests positive for HIV has access to high-quality and affordable care is one of the most important priorities under the federal and in the HIV epidemic initiative. That started under the Trump administration and it’s continuing full force under the Biden administration.

While it's important that wraparound and support service is available to insure people living with HIV, it is vital that we maintain comprehensive services, including treatment, for low-income and uninsured individuals. Again, the federally funded Ryan White HIV/AIDS program and AIDS Drug Assistance Programs play an absolutely vital role here. In fact, they are models for care and support service delivery for all the diseases that disproportionately affect the most vulnerable in the U.S.

Sean Pyles: So Sam, on top of all of that, the insurability of PrEP is in jeopardy because of a 2022 federal court case called Braidwood Management v. Becerra. Can you tell us about that?

Sam Taube: In that case, a federal judge in Texas ruled in favor of a group of employers who were suing to opt out of providing coverage for PrEP through their health care plans. The employers argued that PrEP usage was against their religion, and they won relief from having to cover it.

Now, if you listen to the last episode in this series and you remember the section on the Burwell v. Hobby Lobby Supreme Court case and birth control costs, this might sound awfully familiar. The judge actually cited Burwell v. Hobby Lobby in this decision on the PrEP lawsuit.

Much like Burwell, the Braidwood decision seems like it could be binding nationwide. On March 30, 2023, the judge behind that case issued a memorandum which struck down all preventive service coverage mandates as unconstitutional. Now the federal government is appealing that ruling, and it's currently stayed while those appeals play out.

Sean Pyles: While we're talking about the health care costs of HIV, we should also talk about the costs of living with the virus. Forty years ago, an HIV diagnosis was usually a death sentence.

Sam Taube: That's true. But today, that's no longer the case thanks to the therapy we mentioned earlier, which is called HEART. Medications like HEART have turned HIV into a pretty manageable chronic illness, and they've also helped to reduce the number of new infections to a fraction of the level seen in the ‘80s and ’90s. But HIV is still out there. And as we've discussed, treating it can be incredibly expensive. That's why PrEP is such an important part of the fight against the virus.

The reality is that HIV prevention puts a strain on many LGBT Americans' budgets, and I can say this from very recent experience. I thought this was all in the past. But at the time of recording, I'm actually in the middle of talking to my insurance carrier and my health care provider about why they've been charging me $300 to $500 for every PrEP-related lab test I've taken this year. As we've covered, the law as it stands now says that I shouldn't have a copay for those tests. But in practice, the insurance companies sometimes feel differently.

Sean Pyles: That is really unfortunate. I'm sorry to hear you're still dealing with this stuff, Sam. Well, let's take a quick break. And when we come back, we'll dive into the costs around transgender health care.

To share your ideas, concerns, solutions for the financial issues around bodily autonomy, leave us a voicemail or text the Nerd Hotline at 901-730-6373. That's 901-730-N-E-R-D. Or email a voice memo to [email protected].

All right. So Sam, let's talk about the other major health care issue you mentioned at the top of this episode, trans health care. What's the status of some of the legal fights here?

Sam Taube: The American Civil Liberties Union is tracking more than 400 anti-LGBTQ+ bills in state legislatures across the country, and more than two dozen have been passed into law. Many of those bills specifically target trans people, and we'll talk later on about how they're increasing the effective cost of gender-affirming care. But even if we ignore the effects of these laws, gender-affirming care is still expensive.

Sean Pyles: But Sam, not every trans person medically transitions, so I assume the costs we're going to talk about in this episode are not universal.

Sam Taube: That's right, they're not. But many trans people do receive some kind of transition care at some point in life, and for most of them it has a hefty price tag. Andrea Romero is a licensed financial advisor based in New Orleans. She says that the health care costs of gender transitioning can start to add up long before hormones and surgery come into the equation.

Andrea Romero: You're not going to start this without a therapist, a very difficult thing to joust at. And most people are going to come at this with that baggage that got them to making the decision to change their life in such massively radical ways through the help of a therapist.

Sam Taube: The average cost of therapy in the U.S. varies by region but generally falls between $100 and $200 per session. Plus, many therapists don't accept insurance. Romero also points out that the aesthetic aspects of transitioning can be unexpectedly pricey.

Andrea Romero: Getting your brows done monthly is not something most cis men have to deal with. Hair removal is a full-time job for some of us who waited later in life. I spent enough on hair removal to buy a nice low-grade 300 series BMW. We get into binding for trans men. Binders are not cheap, and they wear out. Gaffs are not cheap for women, and they wear out.

Then you get into things like cosmetics, and you're changing a wardrobe. If you're doing it overnight, it's going to add up. You're still having possibly two wardrobes. All of these things cost substantially more than peers who may be groaning about having the same outfit in their closet for five or 10 years. It's like, well, imagine trying to have two wardrobes.

Sam Taube: When it comes to hormone therapy, Romero says that insurance typically covers some but not all of the costs. When it comes to surgery, on the other hand, the insurance situation is more bleak.

Andrea Romero: It's a risky surgery that has improved over time, but then you're talking about something that's definitely not traditionally covered in an insurance plan. Those are $10- to $50,000 out of pocket.

Sean Pyles: That is a lot of money, Sam, especially when you start adding up all of those elements to the overall cost of transitioning.

Sam Taube: Yeah. And these costs might sound disheartening, but that's not the intent of this episode. Later on, we'll share several resources that can help trans people afford these costs and also several financial strategies which make medically transitioning feel possible.

But before we get to those resources and strategies, there's one other cost of gender-affirming care that we should cover, and that's the cost imposed by state laws which restrict access to gender-affirming care. At the time we're recording this, 20 states have passed such a law. Romero says that trans health care restrictions are forcing some parents of trans children to travel out of certain states in order to get access to the care their child needs, and travel costs can really add up.

Andrea Romero: Airfare's 2-, 3-, 400 bucks. Once you fly somewhere, guess what? You're going to need ground transit. It's a hundred bucks each way. You're going to need food. Maybe you need a night's stay. You're quickly adding 25% to 40%. Even if you're insured, you're going to be eating a couple hundred bucks.

Sean Pyles: But Sam, you said earlier that the news about gender-affirming health care costs isn't all bad. Where's the better news?

Sam Taube: Well, Romero says there are a variety of resources trans people can use to help cover the cost of gender-affirming care. In the past, insurance coverage of gender-affirming care was somewhat unreliable, but Romero says that's changing. She also says there's a growing ecosystem of nonprofits which can provide trans people with financial support for transition-related costs. We've linked a few of the nonprofits she mentioned in the show notes of this episode, such as the Jim Collins Foundation, Point of Pride, the American Trans Resource Hub, and Trans United With Family and Friends, or TUFF.

There are also certain financial strategies that are well suited to saving up for gender-affirming health care costs. For example, Romero says that many trans people are saving up for transition-related costs that have relatively short time horizons. She says that that calls for a more conservative investment strategy than, say, buying stocks to save for retirement.

Andrea Romero: Your timeframe for needing your money should always dictate the level of risk you're willing to put your money into. Risk is not a bad term. Risk does not mean speculation. But if I need that money in six months or 12 months, I'm not probably going to stick it in the stock market.

Sam Taube: Instead, and this will be familiar advice to our Smart Money audience, Romero says that short-term bond funds and high-yield savings accounts may come in handy for these kinds of transition-related costs.

Now, some trans people liquidate their retirement accounts or even sell their homes in order to come up with the money for major gender-affirming health care expenses. Romero says that there are some less drastic alternatives to consider, like 401(k) loans and home equity lines of credit. Now, on the insurance side of things, Romero says that trans people who are considering surgery may want to look into getting a short-term disability policy.

Andrea Romero: Now, I know from firsthand experience it is not uncommon to be out of work for three months for any type of surgical intervention for gender-confirming care. Whether that's a top reduction or if that's bottom surgery for any gender goal that an individual has, you can easily expect to be out for two, three, maybe as long as six months depending on your surgical regimen and what's going on in other existing conditions. The ability to not earn income in three to six months, that will add up quickly to $10-, to $20-, to $30,000 depending on what your income is and where you live. Having an ability to keep that home, keep your apartment, be able to eat, pay your utilities, to be truly independent is fundamental to your emotional, physical healing.

Sean Pyles: So the news really is mixed here, isn't it, Sam?

Sam Taube: It is. The trans community has made some progress over the last decade. Over the last few years, a growing number of trans youth feel comfortable coming out and living as their true selves. But progress is not a straight line, and today there are hundreds of bills in state legislatures across the US threatening trans civil rights. Typically, when we hear about the challenges trans people face, we hear about things like violence and discrimination. But it's also worth noting that gender-affirming care is a budgetary burden on many trans Americans.

According to the Human Rights Campaign Foundation, the total costs of trans-specific health care for one person can range from $25,000 to $75,000. Insurance, nonprofits and savvy financial strategies can ease that burden to a point. But in the end, many trans people pay a lot of bills just for the right to live as themselves.

Sean Pyles: Sam, one thing I want to highlight is that gender-affirming care can be lifesaving care, and receiving medication that helps protect someone from contracting HIV can be lifesaving, too. We have these two important forms of health care caught in the crosshairs of the culture wars, and the most marginalized among us are left to scrape together money to cover medical care that's needed for survival, and it's all really hard to grapple with.

Sam Taube: Absolutely. We've used this term “culture wars” a couple times in this series, and it's because that's the common term for the debates around things like women's rights and LGBTQ+ rights. But to be honest, that term kind of bothers me personally.

Sean Pyles: Oh yeah? What do you mean by that?

Sam Taube: Well, to me, culture war makes it sound like these are just arguments over abstract ideas or aesthetics or something, like this is all no more important than debating who should have won at the Oscars. But this obviously is more important. It has real, material impacts on people's budgets and choices. If you're a woman or LGBTQ+, if you have any personal stake in these issues, they're going to affect your decision about what kind of health insurance to have. They can affect your calculus about where you work. And as we've discussed, they can even affect your choice of where to live.

Sean Pyles: Well, hopefully this series has left our listeners feeling a little more prepared to face these kinds of obstacles. And that's all for this episode and this series of the Smart Money podcast.

If you have a money question of your own, turn to the Nerds and call or text us your questions at 901-730-6373. That's 901-730-N-E-R-D. You can also email us at [email protected]. Visit nerdwallet.com/podcast for more info on this episode. And remember to follow, rate and review us wherever you're getting this podcast.

This episode was produced by Tess Vigeland and Sam Taube. I helped with editing, as did Liz Weston. Arielle O'Shea and Chris Davis did our fact checking. Kevin Tidmarsh mixed our audio. And a big thank you to the folks on the NerdWallet copy desk for all their help.

Sam Taube: Once again, our brief disclaimer, we are not financial or investment advisors. This info is provided for general educational and entertainment purposes, and it may not apply to your specific circumstances.

Sean Pyles: And with that said, until next time, turn to the Nerds.