President Obama’s uncomfortably hilarious appearance on “Between Two Ferns” with Zach Galifianakis last month was a refreshingly clever policy-marketing move coming from the White House, at once entertaining and ingenious.
Even more ridiculous than the skit itself? The possibility that Funny Or Die has become our most prevalent source of clear, accurate information about the Affordable Care Act in 2014. (It at least beats out cable news.)
In an ideal world, of course, the news media elucidates issues for the American people. But months of sensationalized, incomplete or partisan coverage of the issues surrounding the ACA have only obfuscated reality and further polarized the debate. All talk, no clarity.
“There have been zillions of words written about the ACA,” explains veteran healthcare journalist Trudy Lieberman, “but people don’t understand the law.”
The law is here—the long anticipated signup deadline finally came to pass last Monday—and despite relentless attempts at repeal in The House, it’s not going anywhere anytime soon. Although the media racket is not likely to hush, maybe we can put at least some of these economic projections and ideological pontifications aside—and carve out some space in the mainstream media to begin a progressive conversation.
Starting a New Conversation
Philadelphia’s public radio station WHYY recently gave us an idea of what this new conversation might look like, successfully breaking through the raucous noise to begin a critical discussion about the ACA’s real-life effects on a large and vulnerable population that stands to gain—or lose—a lot from its implementation.
At the end of February, WHYY hosted a public panel discussion, “The Affordable Care Act: Telling the Story,” featuring experts in medicine and media shedding light on the vast healthcare inequities within the LGBTQ (Lesbian, Gay, Bisexual, Transgender/Transsexual and Questioning/Queer) community—as well as if and how the ACA changes any of that, and most importantly, how we can improve the law.
The nine to ten million Americans that make up LGBTQ community—roughly the population of New Jersey, Paris or Beijing—face a level of social marginalization and legal discrimination that would seem to belong in the past. U.S. Attorney General Eric Holder has called the fight for LGBTQ equality “one of the defining civil rights challenges of our time.”
And possibly the most blatant and widely sanctioned—not to mention life-threatening—kind of systemic discrimination against the LGBTQ community is that in our healthcare system.
Healthcare as an LGBTQ Issue and the ACA
“There are so many health disparities in the LGBT community… There’s a lot to be said for making [it] an LGBT issue,” explains Dr. Robert J. Winn, one of the three panelists featured at the WHYY event, and medical director at the cosponsoring Mazzoni Center, Philly’s only LGBTQ health clinic. (The event was also cohosted by The Philadelphia Chapter of the National Lesbian and Gay Journalists Association).
Moderating the event was WHYY radio host Maiken Scott, and rounding out the panel were healthcare journalist Trudy Lieberman at the Columbia Journalism Review, and prominent academic and activist Katie Keith, who works with Out2Enroll to educate the LGBTQ community about the ACA.
While the event didn’t quite stack up to “Between Two Ferns” in terms of sheer hilarity and entertainment value, the panelists’ combined years and depth of experience with the issues at hand made for an uncommonly nuanced and well-informed discussion. They talked about the inequities they’ve witnessed within the healthcare system, how some of these problems are being addressed by the ACA—while others aren’t—and how we can do better.
Why is Healthcare so Crucial to the LGBTQ Community?
The issue of healthcare is especially important to the LGBTQ community because though they can often face health challenges that the general public doesn’t, they receive less healthcare than most Americans.
The LGBTQ community is statistically more prone to a number of serious medical concerns, including HIV/AIDS; hepatitis; cervical cancer; substance abuse; depression; and physical or sexual abuse at the hand of families and strangers. It should be noted that this list is highly generalized and far from exhaustive.
But the most complex and life-altering set of medical issues is specific to the trans-population: gender dysphoria and the process of gender transitioning, including hormone therapy, sex-reassignment surgery and psychotherapy. For trans individuals, healthcare has the power to radically transform their lives in ways most of us can’t even begin to grasp.
And we’re not just talking physical transformation, here. The incredible mental and emotional distress inherent to trans experiences, often coupled with rejection by loved ones and self-medication, is a difficult battle to fight alone. The essential value of mental healthcare in the trans-community cannot be overstated.
“Trans people, more than any other population, understand the value of health insurance,” explained Keith. “It can be life-saving.” This also means, though, that the consequences of being denied healthcare are that much more devastating.
Social and Legal Hurdles
You don’t need to be an M.D. to know that medical problems both mental and physical only become increasingly serious—and harder to treat—the longer they are neglected. In addition to a lack of health insurance, social stigma and prejudice prevent LGBTQ individuals from getting the care they need; Many avoid seeking treatment because of the homophobia and transphobia present in the medical community, both real and perceived.
Legal barriers are an equally serious threat, one that’s actually codified into our law. The most common issue is states’ and insurers’ refusal to recognize gender identity and gay marriages or families. 72% of LGBTQ people experience discrimination trying to get insurance coverage for a same-sex partner through their employer. When denied coverage, the physical, mental, and financial health of LGBTQ individuals and their loved ones suffers gravely.
Enter the ACA: Positive Changes
“Will the ACA benefit me?” is the question Dr. Winn hears nearly everyday at the Mazzoni clinic. He always gives the only honest answer he can: “It depends.”
“The law explicitly guarantees nondiscrimination rights for LGBT people,” Keith explains, “but we still don’t know how that will play out or what that means.”
The ACA does have the power, for example, to provide healthcare to the one-third of low income LGBTQ people who are currently uninsured—the population that Dr. Winn and the Mazzoni Clinic serve. And there is at least one concrete victory for the LGBTQ community within the law: Insurers can no longer deny coverage to people with pre-existing conditions, including HIV and AIDS. The law also dispels the falsity that being a transgendered or transsexual person is a preexisting condition.
Dr. Winn is also hopeful about the increased availability of preventive care for LGBTQ people who before may have been unable or reluctant to seek out care. This includes life-saving exams like mammograms, and screenings for the cancers that gay and lesbian people experience at considerably higher rates.
But to make further progress it’s important to examine where the ACA falls short in providing healthcare to the LGBTQ community. The unanimous sentiment at the WHYY panel seemed to be, “Things are getting better, but we’ve got a ways to go.
Failure to Represent the Sex/Gender Continuum
Maybe the biggest intrinsic fault of the ACA in itself—external factors aside— in regards to LGBTQ healthcare is the fact that it still operates on a binary gender system. “Male” and “female” are no longer sufficient to represent the breadth of the gender and sexual orientation spectrum that exists in modern day America.
The inability of LGBTQ people to define—and redefine—their own identities has severe practical consequences. “You are still forced to make a choice about your gender-marker,” explains Dr. Winn, “that could have serious ramifications down the road.”
For example, Dr. Winn has a female-to-male trans patient who was recently diagnosed with cervical cancer. His insurance company won’t pay for the surgery he needs, though, because he checked “male” in his initial insurance application. (So in the view of the insurer, he doesn’t have a cervix). Note: Dr. Winn and the Mazzoni center advise trans or questioning patients enrolling for healthcare to use the same sex on record with the Social Security Administration, in order to avoid future conflicts.
Noncompliance by States and Insurers
Although in theory the new healthcare law mandates equal treatment of same-sex couples, in practice the federal government directly controls very few applications of this decisive clause. (The feds are able, for instance, to ensure that gay and lesbian couples will receive the same federal tax credits and subsidies as hetero couples, no matter what state they live in.)
The myriad problems arise at the state level, where the lines between state and federal sovereignty are blurred and fraught with loopholes. States wield a good amount of discretion in applying the ACA. For example, each state still determines its own definition of what constitutes a marriage and a family—and if there isn’t a definitive law on the books, it’s the insurer’s call.
There are a number of similarly discriminatory laws on the books across the U.S. that cripple LGBTQ health. In New York for example, there are specific regulations in the state Medicaid program that in effect ban transgender individuals from getting the healthcare they need.
States staunchly opposed to the ACA are also undermining its full enactment in ways that affect its low-income citizens of all gender identities and sexual orientations. Pennsylvania is one of the twenty-four red states refusing to accept the federally funded Medicaid expansion offered by the ACA. There are an estimated five million nonelderly adults living under the poverty line who will remain uninsured due to this coverage gap.
The insurance companies, meanwhile, are also finding subversive ways “to limit the people they serve—because it’s not legal,” explains Keith. In Louisiana, for example, 2,000 impoverished HIV/AIDS victims were denied coverage because three of the four insurers in their state refuse to accept third party payments from programs like the Ryan White HIV/AIDS Program.
Mixed Reception of the ACA and What History Tells Us
Keith makes a helpful comparison of the mixed reception of the ACA in LGBTQ communities today to the skepticism of African American communities during the Medicare/Medicaid rollout in 1965.
Desegregation was part of the law, but medical providers and red states—many of the same states resisting the ACA today—did not cooperate. And the African American population in the ‘60s had grown up experiencing brutal racism and institutionalized discrimination—giving them little reason to trust the government with their health.
This is a close reflection of the modern LGBTQ community’s distrust of the medical establishment. A lifetime of homophobic and transphobic discrimination has fostered distrust in this community. According to a recent study, 73% of transgender people expect discriminatory treatment from medical professionals; over half think they may be refused service entirely.
So, what happened with Medicare and Medicaid? In a nutshell: Noncompliant states were eventually forced to implement the law fairly. Public outreach circulated accurate information, and the public grew to understand the law. The African American community began to experience the benefits of Medicare and Medicaid. Positive interactions built trust and dispelled skepticism bit by bit.
“I think we might see something similar with the Affordable Care Act,” says Keith.
Educating the Public
We need more public outreach and education on the system overhaul, according to Lieberman and Keith, because the message is not being heard: Research shows that most people lack a basic understanding of the law. Dr. Winn says that 40% of uninsured people don’t expect to get coverage in 2014, many because they don’t know about the financial help available to them. This knowledge gap disproportionately affects LGBTQ individuals, because they are more likely to be uninsured and low-income.
While many of these people missed out on the most recent deadline due to this lack of understanding, open enrollment for 2015 begins in November, so there is still time to get the word out. How? For starters, every state could utilize the federal funds they’ve already been given for this very purpose. New Jersey, for example, has been sitting on 7.6 million dollars in federal funding meant to help the uninsured learn how they can benefit from the ACA.
Keith, meanwhile, says we need more enrollment support targeted to the LGBTQ community, in the same vein as Out2Enroll. “I’m not confident that there’s enough advocacy out there to actually get people covered,” she says.
And, again, the mainstream media needs to do better. “Just basic explanation of the law would go a long way,” notes Lieberman. The WHYY event is an example of the kind of in-depth and multifaceted media conversation we need to see more of. And the Kaiser Family Foundation News has consistently proven itself to be the the most reliable and comprehensive source of clear and accurate healthcare reporting.
Educating the Doctors
The medical community needs an education on LGBTQ culture in order to dissolve the ignorance that has long pushed this population away. To bridge this gap between the two communities, Dr. Winn is working to educate practitioners of all specializations on how to be “culturally competent in LGBT issues”—aka, sensitivity training.
The Mazzoni Center has been recognized as a “Leader in LGBT Healthcare Equality” by the Human Rights Campaign’s Health Equality Index, an initiative to repair disparities in LGBTQ healthcare that trained over 4,000 professionals last year.
Telling the Stories
On the other end, healthcare consumers have to speak up about what isn’t working. “The only way we can change things is by hearing the problems and the stories,” insists Dr. Winn.
While the media are often lousy at accurately explaining the law, they are talented at bringing the stories of individuals who’ve been wronged to the forefront. Disparaging coverage exposes the insurance company, starts critical conversations and generates enough leverage to affect change.
One example is the high-profile coverage that pressured insurers in Virginia and Pennsylvania to reverse their decisions after denying same-sex couples joint coverage. Lieberman says that for the insurance companies, the price of insuring the family is always less than the cost of bad press. And these cases can set a precedent for similar but unheard stories.
Documenting the Problem
Ms. Keith, Ms. Lieberman and Dr. Winn encourage anyone who’s encountered a hurdle getting coverage to file a complaint or appeal with the insurer, the state, or the federal government. “We need to document the problem,” Keith says.
Governments, insurers and medical providers need to improve data collection and documentation too, or it’s going to be virtually impossible to accurately measure large-scale progress in healthcare quality and access for LGBTQ people. That’s because currently there is no standardized data collection of gender identity and sexual orientation. This in itself is indicative of how much progress we still have to make.
Like with any issue, a data-driven understanding of the problem lays the groundwork for informed and intelligent policy debate and decisions. The Department of Health and Human Services has admitted that, without this data, “it will not be possible to document, understand, or address health disparities in this population.”
There are, of course, still a lot of unanswered questions. Is the ACA going to drastically improve healthcare for the LGBTQ community? It’s hard to know. Will there ever be an American healthcare system entirely free of discrimination? Maybe. What will the U.S. healthcare system look like in twenty or thirty years? We have no idea.
There is a question, though, that everyone who fights for LGBTQ rights knows the answer to: How will we look back on the time when we failed to provide equitable healthcare to the millions of Americans who don’t ascribe to an outdated set of exclusive sex and gender norms? No doubt, in the same way we today look back on the societal injustices of the generations before us—with a disquieting mix of disbelief and indignation that it took us so damn long to do the right thing.
By Carolyn Todd