The Philadelphia chapter of NLGJA, in association with Mazzoni Center, the only LGBT-focused health and social services organization in the Philadelphia region, hosted a panel discussion on Feb. 27 to talk about the effects of the Affordable Care Act on LGBT communities and the related stories that may be missing from the national discussion.

Panelists included Dr. Robert Winn, medical director of Mazzoni Center; Trudy Lieberman, a contributing editor to the Columbia Journalism Review, who writes about health care and how it's covered in the media; and Katie Keith, a research analyst at Trimpa Group who is on the steering committee of Out2Enroll, a health insurance education and outreach program targeting LGBT populations. WHYY health and science reporter Maiken Scott, host of the weekly public radio show “The Pulse,” moderated the event.

Health is an LGBT issue

Topics of discussion included discriminatory policies affecting transgender people and people with HIV, the cultural competency of health care providers and how to combat LGBT distrust of the medical profession, insurance options for LGBT families, differences in the application of the ACA in N.J., Del. and Pa., and the difficulties in reaching homeless and transient LGBT youth.

Mazzoni Center reports that about 35 percent of their clients are uninsured. This figure aligns with the percentage of LGBT people across the country who were without insurance at the end of 2013. (For comparison, about 15 percent of the general population is estimated to be without insurance.)

“The hope has been that, with the ACA, more of those people will come across insurance that is stable for them,” Mazzoni's Winn said. 

But the success of groups like Out2Enroll is hard to measure, said Keith. “We're never going to know how many LGBT people are enrolled. The application doesn't ask that question,” she said. 

Instead, she said, we have to rely on the individual stories that are reported back to health care providers and nonprofits, and stories that are reported in the media. “Without that,” she said, “we'll never know how we're doing.”

The health reform law includes specific protections: Marketplaces, plans, insurance companies, health insurance navigators cannot discriminate based on sexual orientation or gender identity. The trouble is, said Keith: “We don't know exactly what that means, how it's being interpreted and how it's playing out.”

People with HIV

Already a number of disparities are surfacing for people with HIV. The ACA bans the exclusion of applicants on the basis of a pre-existing condition. “So HIV patients are no longer uninsurable,” said Keith.  

But insurance companies are still going to find a way to limit their claims risk, said Lieberman. “And people with HIV might have health problems that they don't want to insure.”

Take the situation with Blue Cross of Louisiana denying premium assistance payments from the Ryan White Fund, she said. Ryan White Fund assistance is the only way many people are able to afford HIV medications.

“But now they're using this as a way to limit their risk,” Lieberman said. “So if you don't accept these third-party payments from the Ryan White plan, then who do you exclude? You exclude people with HIV. And we are just beginning to learn other ways that the insurance companies are trying to limit who they will serve. Because legally they can't do it. Everybody's covered even if they have a pre-existing condition.”

Lieberman said this kind of back-door exclusion might manifest in other ways because of  narrow health care networks in some of the policies available through the ACA. “You can only go to certain doctors and use certain hospitals,” she said. “What I saw in New York was that one insurance company had no hospitals in a black neighborhood — which seemed to say to me that they were trying to exclude people of color because they were afraid of whatever kind of health conditions they might present. So I think that's one thing we have to watch for.”

LGB, and what about T?

The panel said that the ban on pre-existing condition exclusions may have murky results for transgender consumers, as well. While it's true that someone can't be denied insurance because he or she is transgender, Winn predicts that “transgender” will be “the one piece of our LGBT alphabet that we are not going to have the best results in.”

He explained that many plans prior to the ACA excluded hormones, surgeries, and mental health coverage of vital importance to the health of transgender people. “With the ACA, I'm not seeing that this is going to get better right away,” he said. “There are still going to be people not getting what they need covered. Even if something is deemed 'medically necessary' … I'm not confident that there is enough advocacy out there that insurance companies will pay for surgeries just because someone has gotten insurance now.”

Another problem for transgender consumers is the requirement to choose a gender on an insurance application. “What your gender marker is legally, what it is you prefer — you cannot make that distinction,” Winn said. 

He related an anecdote about a patient of his, a transgender man who is insured, not through the ACA but through an employer-sponsored plan, who had to change his gender to female with his insurance company because his partner, who now has cervical cancer and who is also a transgender man, could not get his cervical cancer covered. “Because he's a guy, and he doesn't have a cervix, right?” he said. “Well, we all know that's not true, but insurance companies say you're a male and you have these parts, and they're covered. If you're a female you have these parts, and they're covered. That's still out there in the insurance world. And because commercial products are what's being offered in the [ACA] marketplace, I'm predicting this is still going to happen to people. They are forced to make a choice about their gender based on medical issues they can't predict.”

Family plans

LGBT families have some rough waters to navigate, too. Because of last year's Supreme Court ruling on the Defense of Marriage Act, people in same-sex marriages performed in states where same-sex marriage is recognized can get financial subsidies with their spouses no matter where they live. “So if you were married in Maryland and you live in Pennsylvania, you're married for the purposes of your health care application,” Keith said. 

“One of the issues we have run into, however, is that … insurance companies have a lot of discretion about how they define family,” she added.

In North Carolina, for example, where same-sex marriage is not legal, when Blue Cross realized same-sex couples were enrolling, they denied their applications. “There was an outcry. They got media attention. And Blue Cross eventually reversed their decision,” said Keith.

She said a same-sex couple in western Pennsylvania experienced the same situation with Highmark, and after some bad press they reversed their position as well. That is where the media is extraordinarily helpful, she said. “The momentum is on our side, and we've had companies across the country changing their minds. And it's something federal officials are looking into and something we hope to get corrected in 2015 and get some guidance.”

Back to basics

Even knowing what is happening for LGBT health care consumers, and reporting on those stories, Lieberman cautions journalists against getting too caught in the weeds. From her perspective, we can't get enough stories out about the most basic aspects of health care reform.

Studies from the Kaiser Family Foundation are showing that there is a very low understanding of the law. “And it doesn't have a lot of support among the people it's meant to help — the uninsured and people with low income,” said Lieberman, “because the media hasn't done a great job explaining how the law works.”

Keith agrees. She said that 60 percent of LGBT people surveyed knew about the health care mandate, but only 1/3 knew that it is possible to get financial assistance if you are at 400 percent of poverty level or lower. “There's a perception that you have to have insurance, but there's no one to help me do it,” she said. This is one of the best messages to get out to the LGBT community, she said. 

“Forty-five percent of people don't even understand the deadline is March 31,” Keith said. “That's how far back we are.” 

Lieberman said journalists need to start from the premise that it's hard to buy health insurance under any circumstances. “I've been covering it for years, and I still find it daunting,” she said. One thing to pay particular attention to that she doesn't see much of in the media is that health insurance premiums are only one small part of the story. There is also co-insurance (the percentage of the bill you have to pay), co-payments, deductibles. 

“You have to look at those elements and decide which risks you have to take,” she said, adding that the high co-insurance is put on the services people most often need. “You know, that's the way most insurance companies do things.”

Of course, insurance has always worked this way, said Winn, but people who have had no experience applying for health care coverage may be overwhelmed.

Don't be daunted

“The answer to the question of 'Will the ACA benefit me?' is always 'It depends,'” said Keith. “On who you are, where you live, what your needs are… There is a lot to be gained, but a lot to work out still.”

And if people are having difficulties, or coming up against discriminatory road blocks, there is an appeals process. “Not a lot of people know that they have these appeal rights,” Keith said. Consumers can work with insurance companies, state regulators in Philadelphia, and the office of civil rights at the federal level. 

“I hate to put the burden on the people who are being disadvantaged to rise up,” added Winn, “but the only way that this is going to change is — if people do experience these problems — is that you tell someone, like an organization that can fight for that.”

“If we don't get it documented, it's never going to change,” said Keith. “We want to hear about it so we can document and correct it. Those rights matter.”