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Experts say large health disparities exist between Chicago LGBTQs
by Jesse Arnholz
2018-05-16

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During his presidential campaign, Donald Trump made overt attempts to reach out to LGBTQ residents. In June 2016, for example, he tweeted, "I will fight for [LGBTQ people] while Hillary brings in more people that will threaten your freedoms and beliefs."

White House Principal Deputy Press Secretary Raj Shah even promised in a statement: "The policies of the Trump administration are intended to improve the lives of all Americans, including the LGBTQ community, through actions aimed at making health care more affordable, rolling back burdensome regulations, and combating the opioid crisis, the administration is working to ensure a healthier America."

In 2018, has that promise to protect and defend the health of LGBTQ individuals been delivered? Speaking with Chicago LGBTQ healthcare activists and experts, the answer is a resounding "no."

In Cook County alone, 59 percent of healthcare providers felt that LGBTQ people are either "not very equal" or "far from equal" in their treatment in the healthcare system, according to a large internal survey conducted by Equality Illinois, the statewide LGBTQ civil-rights organization.

But what accounts for such a disparity, especially in a county largely acknowledged to be among the nation's most progressive?

Ed Stellon, executive director of Heartland Alliance Health, said that in his 26 years as a healthcare provider, "drivers of disparities" can be boiled down to "a tale of two cities."

The United States already has a notoriously complicated healthcare system, and if an individual is able to pay, usually it means they will receive better healthcare. Being a member of the LGBTQ population adds an extra layer of complexity.

Erik Glenn, the executive director of Chicago Black Gay Men's Caucus, said he feels there is a very striking fluctuation of interest, knowledge and expertise within Chicago's LGBTQ community—especially within low-income, LGBTQ communities of color.

U.S. healthcare providers have a long history of discriminating and exploiting people of color, especially African-Americans. In many ways, the memory of bigotry remains seared into their collective memory.

At Howard Brown Health—Chicago's largest LGBTQ-focused community health center, which has 17 locations located across the city—the vast majority of transgender patients come into the clinic after having negative experiences in emergency rooms or in other primary care settings. Most transgender patients talk about staff entering their room unnecessarily to catch a glimpse of them, getting misgendered, and having to educate their doctors about their healthcare needs.

David Ernesto Munar, president and CEO of Howard Brown, said that the key reason Howard Brown exists is to give affirming and affordable care to LGBTQ people.

While the HIV/AIDS epidemic has become more manageable in the last decade, more than 4,000 of Howard Brown's 30,000 patients are living with HIV and Munar estimates that as many or more are at risk for HIV and are receiving testing services, PrEP, PEP, and other preventative services.

LaSaia Wade—executive director of Brave Space Alliance, a Black and trans-led LGBTQ Center located on the South Side that creates and provides affirming and culturally competent services for the LGBTQ community of Chicago—praised the work Howard Brown has done. But, she said, she greatly fears for the wellbeing of LGBTQ people in other parts of Illinois.

Wade said she feels that in the past five years Chicago healthcare institutions have begun to focus more on "trans 101" care, or the fundamentals of trans care, like gender-affirming surgery and hormone replacement therapy.

"But, then we talk about the rest of the state, and the rest of the state has no clue what that looks like," Wade said.

In her travels through Illinois, Wade has been dismayed to learn that many care centers outside of Cook County have little to no protocol when confronted with transgender and gender-nonconforming patients. The idea that Chicago is often perceived as an LGBTQ bastion rings very true to Wade, and it is very disturbing to her.

"We need to train and talk to everyone, not just a sector of people," Wade said.

It is a common misconception that transgender people only reside in urban centers. This is a dangerous misconception because not only do transgender Americans live in all parts of the country, but this notion makes it easier for the general public to turn their backs on the struggles of rural transgender individuals, who face the same issues and dangers as trans city dwellers.

Planned Parenthood facilities are often the only trans-affirming care providers in non-urban areas of the state.

But, just because things are better in Chicago, that does not mean that there isn't room for improvement. Wade said her clients tell her that they still face problems of misgendering and a general lack of knowledge about transgender and gender-nonconforming bodies.

Many members of the city's lesbian and bisexual population also tell a similar story of having to educate providers about their needs.

Imani Rupert-Gordon—executive director of Affinity Community Services, a social justice organization that focuses on health, leadership development, and community building among Black lesbian, bisexual and transgender women and LGBTQ youth—pointed out that women typically have greater health needs than men, particularly in regards to reproductive health.

"There is a common misconception that LGBTQ women aren't impacted by the need for reproductive rights," she said, "and the voice of LGBTQ women has been largely, and historically left out of the reproductive rights movement."

According to Affinity's research, 48 percent of LGBT women are raising children. This means that reproductive rights are actually a huge issue for lesbian, bisexual and transgender women.

Most of the funding and attention to HIV is focused on men who have sex with men, but Black women are 16 times more likely to be diagnosed with HIV than white women, and five times more likely than Hispanic women. And while most LGBT women believe they have no risk of exposure to HIV, 20-40 percent of HIV diagnoses in women identify as lesbian or bisexual.

"Many of our healthcare providers aren't sharing the information about PEP and PrEP in our communities, and it is literally killing us," Rupert-Gordon said.

Many disparities within the healthcare system can also be tied back to other social determinants of health, as well.

"People who are under-educated, under-employed, under-housed are the ones that are likely to be engaging in activities that provide them with a greater likelihood of contracting HIV," said Scott Ammarell, the chief executive officer of Chicago House and Social Service Agency, an organization that provides housing and social services for people who are impacted by HIV and AIDS.

In March of 2016, the National LGBTQ Health Education Center reported that LGBTQ people face higher rates of substance abuse, depression, anxiety, smoking and unhealthy weight control, among other issues.

In a similar study, conducted in 2015, the National Center for Transgender Equality found that one-third of transgender Illinoisans will not seek out medical care that they need for fear of being mistreated.

Brian Johnson, the CEO of Equality Illinois, said that these studies show two critical needs that must be addressed: the need for better access to care and for more affirming care, wherein medical providers acknowledge and understand the patient's identity and experiences.

Howard Brown has an educational department to combat these kinds of disparities and it has devoted thousands of hours of education to nurses, providers and medical assistants regarding basic understanding of the LGBT community. For example, the education department has designed curriculum around the proper language and gender pronouns, what specific health needs of LGBT Americans are, and what kinds of interventions are important.

The curriculum is six hours long and Howard Brown has run classes all over the Midwest.

Unfortunately, in six hours Howard Brown educators are not able to adequately prepare providers to do more complex assessments such as prescribing hormone replacement therapy or handling the sensitivities of prolonged HIV care.

"It is a start," Munar said, "and I think that's been a help."

In addition to lack of education, health delivery in the United States is very fragmented for providers that are oriented toward particular kinds of services or particular kinds of populations. Often, providers are not prepared for the diversity they might encounter.

More specifically, healthcare disparities among LGBTQ individuals can be further boiled down to implicit bias toward white, heterosexual, cisgender and middle-to-upper class men.

This kind of bias often occurs at the sub-conscious level, and when a healthcare provider has an unchecked bias, it can make it difficult for them to ask the right questions and fully meet the needs of patients with different life experiences. In addition, when a patient detects this implicit bias, they can become distrustful of the healthcare provider or institution.

If a person is LGBTQ and also a member of a racial or ethnic minority group of color, they are going to experience many different and often intersecting forms of discrimination.

Johnson explained that if an individual is transgender, a woman, a person of color, and low-income, "when those identities layer on top of each other it increases the challenges of finding and securing adequate and affirming healthcare."

According to patient surveys, the top reason people come into Howard Brown for their care is that they have heard of the clinic from someone they know and trust in their communities.

Cynthia Tucker, the vice president of prevention and community partnerships at the AIDS Foundation of Chicago, runs hundreds of focus groups, conferences and trainings per year and is alarmed by just how rampant distrust of the healthcare system is among LGBTQ individuals, especially among transgender women of color.

"I've heard stories where [a transgender woman of color] has gone to the doctor, and [they tell me], 'Staff talk about me, I can hear them laughing, I can hear them joking,'" she said.

Heartland Health Alliance estimates that about 40 percent of people between 18-25 who are experiencing homelessness are LGBTQ, even though LGBTQ people only makes up about 6 percent of the general population. Of those who experience homelessness, a disproportionate number of them are a racial and ethnic minority.

A recent study conducted by the National Health Care for the Homeless Council suggests that upwards of 50 percent of transgender individuals have experienced housing instability or homelessness at some point in their lives.

In terms of healthcare, Stellon said that these studies reveal that when a person is unstably housed or homeless, they will prioritize basic needs such as food and shelter over day-to-day healthcare decisions. LGBTQ youth, especially, face homelessness and often turn to sex work to meet their basic needs.

Stellon speaks of many experiences where he's counseled LGBTQ youth, who are trading their personal safety and, often their sexual health safety, for the security of a warm place to stay.

Recently, the Human Rights Campaign ( HRC ) Foundation released its 11th edition of its annual Healthcare Equality Index ( HEI ). The index scores healthcare facilities on policies and practices toward LGBTQ patients, visitors and employees. Across the country, 626 healthcare facilities all participated.

In the Chicago area, HRC gave 100-percent scores to Advocate Illinois Masonic Medical Center, Ann & Robert H. Lurie Children's Hospital of Chicago, Howard Brown Health, Northwestern Memorial Hospital, Rush University Medical Center, University of Chicago Medical Center, University of Illinois Hospital & Health Sciences System, VA Edward Hines Jr. Hospital Hines, and Rush Oak Park Hospital.

Tari Hanneman, the director of the HRC Foundation's Health Equality Project and author of the HEI, said that the study shows "a growing commitment across the nation to equitable and inclusive healthcare," but that there is still a lot of work to be done.

But even though Chicago has excellent LGBTQ healthcare, many queer people of color do not utilize it. There are still enormous gaps in linking them to at-risk populations to the broader healthcare industry.

Many providers agree that is not just the discrimination that people face in front of their healthcare provider, but the bigger issue at play here is that the American healthcare system wasn't built to adequately support the nation's most vulnerable populations especially queer and lesbian women, transgender women, women with low income, undocumented women, women with disabilities, and a host of other women, and people with marginalized genders.

Rupert-Gordon said she sees this at play in many different ways.

"Income is still a barrier to receiving quality, timely, and adequate healthcare," she said.

LGBTQ women are less likely to have insurance, even with the Affordable Care Act in place. Because women make less money than men, they are more likely to have incomes under the poverty line, making access to healthcare, or perception of access to healthcare more difficult.

Rupert-Gordon said that these barriers make the most marginalized women more likely to put off getting care, complicating health issues until they become much more difficult to manage, or become terminal.

"As always, these elements are compounded for women of color, transgender women, and undocumented women," she said.

Black women are 42 percent more likely to die from breast cancer even though they are less likely to be diagnosed with breast cancer. This is because by the time black women were seeing providers, the diagnoses had become terminal.

Rupert-Gordon said that these statistics mean that lawmakers need to consider issues like experiencing housing instability, and access to safe, affordable childcare as impediments to health, both of which disproportionately impacts women, LGBTQ people, folks for color and other marginalized identities.

Glenn said he also feels that youth plays a huge role in healthcare disenfranchisement as well. For example, how a 17-year-old, queer, low-income youth of color is going to have less experience when it comes to navigating the healthcare system than someone who is twice their age.

He said that even though that 17-year-old might be receiving messages from the public health arena that they should be getting checkups because they're "more vulnerable" to HIV and other STIs, they might not know where to turn or might live in a part of the city that doesn't have LGBTQ-friendly clinics.

Chicago House runs a program called the Trans Safe Drop-In through their Trans Life Center. Every Monday afternoon, the program offers a space for trans people to come in and speak with service providers to find out how get their needs met.

Through this program, many clients come in with the same story: they are just trying to survive.

Then there are the huge actors the affect healthcare all across the country: the Centers for Medicare & Medicaid Services.

"[They] hold the purse strings that hold trillions for dollars for the whole system," Munar said.

Munar noted that the policies that emanate from Medicare and Medicaid affect systems across the country because every healthcare system is structured around them.

HRC President Chad Griffin noted after the HEI was released that with a Trump-Pence administration, "the rights of LGBTQ people are under attack," and that the survey shows that hundreds of top healthcare facilities across the U.S. are moving towards healthcare equity.

Undoubtedly, these accounts point to the simple answer that President Trump's promise to defend LGBTQ healthcare is not being adequately addressed, and if anything the Trump administration appears to be doing what it can to actively complicate the lives of LGBTQ people.

The Trump administration has made several attacks that affect the overall health of the LGBT community.

In December 2017, the White House fired the remaining members of the Presidential Advisory Council on HIV/AIDS. Six members of the council had resigned in June after expressing anger with President Trump's approach to the epidemic.

Then on March 23, Trump signed a memorandum that will ban some transgender people from U.S. military service but rolls back the larger ban he ordered last year that was blocked.

The next day Howard Brown sent out a statement regarding the new decision, calling it a blatant form of discrimination that is setting the cultural tone that it is permissive to stigmatize transgender people.

Even though the memorandum is not as harsh as Trump's previous ban, it is still particularly antagonistic toward transgender health because it targets those who have been diagnosed with gender dysphoria and those who are beginning to transition through medical intervention, hormones or surgery.

Munar said that this mandate is "sending trans care underground," and is telling people not to be open, and to not pursue medical assistance for the transition that they need.

The administration has continued to roll back protections left over from the Obama administration around bathroom access has disproportionately hurt transgender students. When schools do not elect to protect LGBTQ youth, a very strong message is sent: the LGBTQ community is not a priority.

In addition, the administration has made several attempts to erase tracking LGBT people in the census.

"In this country, policy is determined by data, and funding is determined by policy," Rupert-Gordon said.

Without tracking the LGBT population, it becomes very difficult to retrieve data on the LGBTQ community, which means the particular needs of the community will be ignored, and therefore left out of policy.

Many providers at Howard Brown have noted that since Trump's election patients have been coming in far more anxious, depressed and fearful. In addition, the clinic has seen an uptick in violence towards transgender women of color. Ultimately, this will drastically affect funding for the LGBTQ community.

Rupert-Gordon said that when there's decreased funding for the LGBTQ community, not only does it slow the progress LGBTQ Americans have made, but it has severe implications for the organizations doing work for the LGBTQ community in the United States.

Ammarell agreed with Rupert-Gordon and added that when the American people are presented policies like the transgender military ban, it inevitably feeds their implicit prejudices and biases against this community.

In other words, the people who aren't fully inclined to support the needs of the LGBTQ community, but aren't vigorously anti-LGBTQ are now being told that the well-being of the community isn't important.

Johnson said that when the threat of repeal of the Affordable Care Act was underway, there were many LGBTQ healthcare providers and LGBTQ Illinoisans who were calling his office to express fear about losing their health insurance.

But with a dangerous administration chipping away at LGBTQ rights, what can be done today to ensure proper and equitable care?

Many experts feel that when working with historically marginalized populations of any kind, institutions must hire people who are of that population.

Tucker is a big proponent of setting up community health organizations and creating more positions for healthcare navigators, who work for medical institutions or organizations, that are made up of people in the populations they serve.

Johnson agreed with Tucker.

"Anybody making decisions that impact the healthcare of LGBTQ people absolutely need to have LGBTQ people at that table, in that conversation," he said.

This means putting LGBTQ people on hospital boards, on state boards and on commissions that intersect with public health issues. It also means making sure that LGBTQ health task forces are set up where LGBTQ people are in charge of making important decisions.

There is also an LGBTQ healthcare drought on Chicago's South Side. There is a great need on the South Side for organizations that are embedded in the community to partner with larger organizations with more resources.

This is something that Chicago House, which is located on the North Side, struggles with. The organization has been brainstorming sensitive ways to enter the South Side without its residents feeling that they are being exploited by an organization located in a historically white neighborhood.

Ammarell said that they must find a way to "partner and collaborate with existing South Side community organizations."

Howard Brown's expansion in recent years to many more areas of the city has also been a huge leap forward for LGBTQ-friendly access.

Experts also recommend reaching out to activists throughout Chicago. Wade has fielded many questions from several doctors all around the city, and has sat on many panels along with doctors and nurses.

Wade said that a good tip for LGBTQ people to remember is that what is common sense to one person, might not be common sense to another. She said that as a Black trans woman, what is obvious to her might not be so obvious to the healthcare providers she educates.

"[My] common sense is not common sense for a lot of people," she said. "[Doctors] have to ask [patients] what their pronouns are, ask [patients] their name, ask [patients] what consent looks like to them, like do you want to be touched, do you want me to talk to you, do you want me to call you Mr., Ms. or Mx.?"

Rupert-Gordon agrees with Wade and suggests that doctors and nurses providing a service, after they've said their part, instead of asking, "Do you have any questions?," maybe try, "Now that I've finished my part, what questions do you have for me?"

"This switch can make a huge difference in how a person relates to the provider, and their agency in their own health," she said.

Most experts also agree that inclusivity trainings must include the "front line staff," or the employees that are the first to greet patients. This is important because these are the first interactions that clients have with the healthcare system, and very much have an impact on the overall experience of the visit.

Another popular best practice idea for healthcare providers is to get provider teams to be invested in doing their homework on LGBTQ populations.

One of the most common things activists hear from clients is that they have to be the ones to educate their providers.

"Institutions need to commit themselves to professional development and internal education," Glenn said.

But on the opposite side of the coin, it is just as important for LGBTQ patients to do their homework as well.

"Being an informed consumer is really essential," Munar said. "The more informed and the more active you are in your healthcare, the better outcome you'll receive."

Centers like Howard Brown, Chicago House and Heartland Health Alliance have worked hard to lower the financial burden for patients. Each agency is actively constructing new ways to make care more accessible. Howard Brown has opened more clinics in business centers and in highly residential neighborhoods. All clinics have evening and weekend hours as well.

Stellon said that healthcare providers must commit themselves to asking people what they want from their healthcare. He said providers must know, on a personal level, what is important to a patient.

"I'm here to listen and withhold judgment," he said, "and to try to see the world as close as possible to the way you see the world, understanding that there will always be some degree of implicit bias that I just need to own and recognize."


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