Doctors are privy to the most intimate knowledge about you, from family medical history to mental health issues. Sharing those details is often not easy for any patient, especially when there is a risk of discrimination, the denial of services or even something as simple as having no place on the forms to write your partner's name.
This is the reality for thousands of LGBTQ Hoosiers, and it was the case for Dustin and Jordan Nowaskie. The two moved back to Indiana after living for a few years in Los Angeles.
"Most of the Californian cities [have resources] if you are gay — or not gay — and looking for a provider who is competent in LGBTQ healthcare. There are these things called OutLists," says Dustin.
If you Google "gay friendly doctor" in many cities a complete list will show up with providers, coverage plans and specialties. When the Nowaskies were searching for new physicians in Indy — in the middle of getting Dustin prepped for his first year as a student at IU School of Medicine — there was no such list. They were only met with forums of people looking for the same thing.
After a year of medical school, Dustin sat down with a friend trying to think back to when LGBTQ healthcare was discussed in any of their classes.
"Out of all the vignettes that we had, we talked about it maybe two times," says Dustin. "The first time that we had, it was very stereotypical. It was HIV-related only. The guy was married and contracted HIV in the military. It was very stereotypical, and while you might see this as a doctor that's not how it's usually represented ... It was perpetuating a lot of stereotypes that I hadn't heard in a really long time."
According to Dustin, the only other class that they encountered where it was discussed was one where the budding physicians were asked two questions:
"What are your thoughts on the origin of homosexuality?" And, "Do you think homosexuality is sinful?"
Dustin was bewildered by the questions. He decided to take his concerns to the IU Medical Curriculum Board. Since the board was already under the timeline to develop a new curriculum for the fall of 2016, the notes were welcomed. But when several HIV-positive patients came into another of his classes and more than one of the students wouldn't sit by them, Dustin knew there was more to be done.
Enter OutCare — a blog that Dustin started to simply list LGBTQ friendly healthcare providers. He and Jordan began adding features so doctors could go online and sign themselves up after being walked through several guiding questions about their care practices. It snowball.
"It has grown to more than [a blog]," says Dustin. "It is more of an initiative to healthcare quality."
The growth of OutCare
Since then OutCare has made pocket references for doctors to carry with basic tips and things to look for with LGBTQ patients, brochures to put in their clinics and a growing list of culturally compitent providers They have met with president of Eskenazi, IU School of Medicine Office of Diversity Affaris and have contacted dozens of doctors. The site now offers CEU (continuing education units) and seminars for doctors to learn what they should be asking. The OutCare list currently boasts over 56 providers, and the team consists of around a dozen medical students (three from Marian University), law students, community members and marketing specialists.
Now they are looking into community outreach. Soon they hope to have something like the "This Business Serves Everyone" stickers that bubbled up in storefront windows post-RFRA last legislative session.
The timing of what they are doing couldn't be better.
"I think when it comes to legislation, things like this are very important," says Jordan. "With this new law that they are trying to pass [SB100], things like this and getting the general public to see that these are issues that we are facing they will start to care more about it. They are going to look deeper at that law and say, 'Oh, this isn't good.'"
"Whether you are gay or not, you have somewhere to go where you can find someone who is culturally competent in these issues," says Dustin. "A lot of doctors in Indiana, if you were to ask them where you send a LGBTQ patient if they wanted to get testing or psychological services, a lot of doctors wouldn't know."
By no means does the OutCare list mean to imply that LGBTQ patients are limited to these physicians — but a level of comfort and having a doctor who is trained to look for health issues that are common can only lead to better care.
Issues like a higher risk of cancer, HIV, depression, eating disorders and abuse are just a few that are common on the spectrum of gender and sexual orientation. For example, it's estimated that one in five gay and bisexual men are HIV positive and almost half don't know it. Stereotypes — like lesbian women never experiencing partner violence because they are not with a man, who are reported for more accounts of domestic violence; or that gay men are not prone to eating disorders simply because they are men — can be detrimental to healthcare unless the doctor is acutely aware of the societal stigmas that put LGBTQ people at risk.
"Little facts like that —whether they are competent or not — just knowing some details so they can give a little bit more care," says Dustin. "That is all I am hoping for and hope it becomes something bigger."
Currently the only routine discussion of sexuality with most doctors boils down to two questions: Are you having sex? With men, women or both?
"Once I find out that a man is having sex with another male then what do I ask," says Dustin, referring to the kind of training they are being given in medical school. "We aren't talking about that information."
Dr. Alvaro Tori, the faculty mentor for OutCare, pointed out the vitality of the list can be reduced to one number: 56. It's the percent of LGBTQ patients who have experienced discrimination in their personal healthcare.
"I am a gay person myself, and a physician," says Tori. "I started to become more interested in LGBTQ equality several years ago because I think there is urgent need, on the part of lesbian, gay, bisexual and transgender people in this country, for equitable and knowledgeable healthcare ... No one should receive substandard care just because of their LGBTQ status."
It would make sense to question why this information has to be presented at all; after all shouldn't doctors be aware of health risks with every population?
"It always remains important to discuss sexuality and gender identity," says Tori. "Unfortunetly when patients go to the doctor to visit there is only a small amount of time that the doctor can spend with a patient. We have to target the area of that patient that has to be addressed. Disclosing sexual orientation or sexual identity of the patient might [help]... spend a few minutes discussing that the patient is okay with being out, that their mental health is in good shape, discuss sexual behavior and make sure that they don't need any more support.
"There are more than just medical issues coming from the LGBTQ community," says Tori. "I think that one of the first goals that we have as an institution is to avoid stereotypes of the LGBTQ community. Having said that we know there are many many studies that prove that LGBTQ patients are at higher risk for depression and anxiety."
Asking the right questions
Stereotypes can often lead physicians to skip over crucial information, too. Tori gives the example of a doctor not discussing birth control with a lesbian patient because it might be assumed unnecessary. Making sure to ask what might seem to be awkward questions to some is key in his eyes.
"I think this generation of physicians is learning how to ask those questions," says Tori. "I think IU School of Medicine is doing a fantastic job restructuring the curriculum to avoid stereotypes, and we are addressing all the issues that we want physicians to be able to address with their patents." The OutCare team has been brought in as a critical component of these questions. Later this week they will sit in on a meeting that is focused on LGBTQ representation in the curriculum.
Matthew Holley, a professor at IU School of Medicine, is currently leading the charge as part of the team developing the IUSM curriculum reform. He adds that there is a course implementation team, with members from each campus to help address the new tools.
"One of the things that was kind of identified in IU's curriculum was some of these components related to healthcare disparities," says Holley. "Meaning some of the students were seeing it most likely in their clinical work as third and fourth year students, but they weren't necessarily getting the context about what are the approaches that healthcare systems are taking, and, at the same time, what is the physician's role."
Holley cited a study done in the Journal of Academic Medicine in 2011 that found the average time spent discussing LGBTQ healthcare throughout medical school was only five hours total, something that many in the field practice of medicine see as far too low.
"We are seeing a lot of associations — American Academy of Pediatrics, American Academy of Family Physicians — a lot of practice groups having conversations about what does it mean to take care of LGBTQ individuals," says Holley. "What does it mean to take care of potential trans individuals in terms of pediatric care patients? There is a bigger discussion in the clinical world and we are trying to merge those two together."
The first step will be a class called Foundation of Clinical Practice, starting in year one and flowing into the following. The class will start by covering the head-to-toe physical exam, professionalism, system-based practice issues, health disparities and ethical issues. All of which, Holley adds, will ensure a level of care and attention to LGBTQ patients. Year two of the course will look at more detailed examinations like specific organ groups. He also plans to use a tool called project implicit. It is an online test that examines unknown prejudices against things like gender, weight, sexual orientation and race.
"At the end it's your own report [on] some of those hidden biases that you might not be aware of," says Holley.
The current system was a bit of disconnect.
"We didn't necessarily know where else these conversations were happening," says Holley of the old courses. He added that they knew that HIV and LGBTQ issues were addressed in sections that covered sexually transmitted diseases, but not specifically elsewhere. He adds that second year students, as part of their intro to clinical medicine, did have the opportunity to speak with several guests about transgender health. That course is being replaced under the new system. Considering that curriculum reform only happens roughly every 10 years, the additions are desperately needed.
"We teach them to have the conversation of 'Do you have sex with men, women or both?'" says Holley. "What we haven't done a good job of doing is [asking] the additional questions you have to ask once information is given to you. Like do you use toys, is it a monogamous relationship, is there ever more than one partner in the bed? Just even having questions about 'Do you know how to clean toys,' 'Do you think you can just put everything in the dishwasher' — and not feeling like they can't have those conversations. I am also telling them too that's it's okay not knowing everything, too. Be comfortable telling that patient, 'Hey I don't know all of this information right now'. Or someone who's begun the process of transitioning, they don't know everything there is to know about hormone replacement therapy ... saying, 'Hey let me do a little leg work on this,' keeps it from having to feel like the individual is having to train their doctor."
He noted that overall there'll be a greater emphasis on addressing LGBTQ healthcare, and these topics will turn up earlier in training than they have in the existing curriculum.
"When you think about IU being the largest medical school in the country there are a lot of moving components," says Holley.
While the school is redeveloping how it addresses LGBTQ issues, OutCare is also growing.
"The thing we have not made ... gains on, because there aren't many resources, is trans care," says Dustin.
While medical and mental health issues in the LGBTQ community are numerous, perhaps the most volatile group are those who identify as transgender.
Dr. Janine Fogel, a family medicine practitioner with Eskenazi Health saw this first-hand when she was on a trip to California three years ago. She was reading an article in the paper detailing a trans health clinic that was opening in Sacramento.
"As I read through the article, I just more and more started to realize, 'Why don't we have this service in Indiana?' It was like a light bulb went off," says Fogel. "It made me really think about transgender populations in Indianapolis and how it must be even more difficult for them in our state to feel comfortable in the healthcare system — and if there was even any healthcare for them."
She read about how the patients were so grateful to have a multidisciplinary location to receive knowledgeable treatment, guidance and regulated hormonal treatments. When she came back to Indiana she proposed opening a similar clinic at Eskenazi Health. The leadership there threw its full support behind it. Three months ago, she was able to invest a huge portion of her time to the idea. Now a clinic is set to open this in spring in the outpatient building of Eskenazi's main campus, on the west end of IUPUI.
"Transgender people are such an underserved part of our population," says Fogel. "And it fits really well with the mission of Eskenazi Hospital which has always been to serve the underserved."
With the blessing of Dr. Lisa Harris, Eskenazi's CEO, Fogel has already serviced half a dozen trans patients out of her family care practice.
One issue she's encountered so far is a struggle to gain the trust of transgender patients.
"Almost all transgender patients have experienced discrimination," says Fogel. "Many don't seek healthcare because of past negative experiences. Trying to erase that and tell them that they are going to receive good healthcare in an appropriate setting has been challenging... All of the patients I have seen so far have been really appreciative and my staff has been really open and excited to treat this population of patients."
The clinic will focus on wellness, preventative healthcare, appropriate testing and screening like pap smears, mammograms along with support groups for patients, their friends and families. She will also be able to offer hormone replacement, surgical referrals and eventually things like speech pathology. Eventually she wants to be able to take the information into schools, giving talks on how to make sure the schools are trans friendly.
The clinic is opening at a pivotal time in LGBTQ rights and healthcare. Between legislative initiatives that seek to limit transgender rights and positive programs like OutCare, the timing is ideal.
"I am not really a political person but some of the politics that's happening right now is just, it's just unconscionable to me," says Fogel. "It makes me ashamed to be from Indiana, frankly. So I feel like I am doing as much as I can in a small way to overcome that."
Doctors like Fogel will be the driving force behind the spread of cultural competency in Indiana's healthcare. And by training the next generation of doctors to see and service diversity, it's another step toward equality in a state that has been laggard for years too long.