Since Northwestern University launched its Institute for Sexual and Gender Minority Health and Wellbeingdescribed as "the first university-wide institute in the country focused on LGBTQ health"in February of this year, its vision ( "To be an international leader in research that fosters understanding of the development and experiences of sexual and gender minority ( SGM ) individuals and improves the health and wellbeing of the SGM community" ) is well underway.
A key component in the realization of that vision is combining the talents of researchers and scholars across a spectrum of disciplines to create the kind of collaboration and leadership which will "Promote innovative, multidisciplinary research to improve the health and well-being of SGM individuals and communities."
In the fall of 2015, the National Institutes of Health ( NIH ) opened a Sexual & Gender Minority Research Office.
The NIH's 2016-2020 strategic plan "To Advance Research on the Health and Wellbeing of Sexual and Gender Minorities" is designed to promote and support "The advancement of basic, clinical, and behavioral and social sciences research to improve the health of people whose sexual orientations, gender identities/expressions, and/or reproductive development vary from traditional, societal, cultural, or physiological norms."
It was only fitting that, as part of Northwestern's very first State of LGBT Health Symposium held at the university's downtown campus on Aug. 17-18, NIH Sexual & Gender Minority Research Office Director Karen L. Parker, Ph.D., M.S.W. was invited to deliver the keynote address.
Ahead of the symposium, Parker and Institute for Sexual and Gender Minority Health and Wellbeing Director Dr. Brian Mustanski, Ph,D. sat down with Windy City Times to discuss the present and future work of both the NIH office and the Institute.
"When the [NIH] office was established, we had been working for many years on some of these issues," Parker noted. "The NIH Sexual and Gender Minority Research Coordinating Committee has representation across 27 institutes and centers. The strategic plan was released around the same time as the office was established and serves as our blueprint moving forward."
Parker added that the office has already honed in on a variety of key areas.
"We released a funding opportunity through the Office of the Director for administrative supplements for Sexual and Gender Minority research," she said. "That call went out last August and we reviewed applications and made funding decisions. Another objective in the strategic plan was to establish a Sexual and Gender Minority working group of the NIH council which advises the Division of Program Coordination, Planning and Strategic Initiatives."
There are six people in that working group including Mustanski.
According to Parker, the current portfolio of NIH-funded research projects is comprised of about 73 percent of grants focused on HIV/AIDS.
"That does not mean that they aren't also focused on other issues," Parker asserted, "but what we're really interested in at the office is looking at that other 27 percent and asking what some of the critical issues are where we are not funding as many projects. Things like suicidal ideation, depression and anxiety, certainly there are some big questions about the health needs of members of the transgender community engaged in the long term use of hormones."
These issues represent just a small part of the unanswered questions which, when addressed, will grow a portfolio Parker admits is presently not particularly large.
Mustanski acknowledged that researching and addressing the epidemic of violence against the transgender community, particularly those individuals of color, has been something that has fallen through the cracks.
"But it is one of the reasons I am really optimistic about the formation of the [NIH] office," he said. "This is a population that has disproportionately experienced violence and is affected by HIV and there are a lot of the same social determinants that are driving many of those issues. This office allows for opportunities for dialogue about where those issues fit at the NIH. They could bring it to the National Institute of Minority Health Disparities which takes more of a population rather than a disease focus."
"We really want to be focusing on populations and their specific needs," he added. "Not just focusing on one specific disease and ignoring all of the other issues that populations are facing."
Another major issue that has a significant impact on the LGBTQ community is one of receiving healthcare.
Transgender people in particular face the barriers of insurance companies who will not cover their basic healthcare needs and providers who have no training or even a basic understanding of trans health.
"One of the things that NIH funds is the kind of work that helps bring these issues to light," Mustanski said. "It's really the first step to addressing them. We need to understand how pervasive they are and the specific issues that people are facing so that they can be used by advocacy organizations or government agencies."
Mustanski noted that a training grant from the NIH provided to one of the Institute's faculty members has helped address precisely that.
"A lot of great data was collected on healthcare discrimination," he said. "We are working on an article on gender affirming and general health care access for trans people."
"One of the great things about this research working group we have established is that we have folks who can come to us and say 'these are the things we are hearing about'," Parker said. "So when it comes to what's happening in the doctor's office, NIH can provide funding to do research in that area which can be used to make decisions."
Another pressing concern is the growing prevalence of HIV/AIDS in sexual and gender minority populations.
"There are challenges in translating research into a way that the general public can understand," Parker said. "There's a lot of work that needs to be done there and continuing to educate people in the community who are working on the ground."
"We just got a very large 9.3 million dollar grant from the National Institute of Minority Health Disparities to do a nationwide eHealth HIV prevention and education campaign with teenage gay and bisexual boys." Mustanski added. "One of the big focuses is to make sure the education we are providing is culturally competent with all different groups."
Despite such good news, the budget stalemate which continues in Springfield has decimated the numbers of people and programs working to combat HIV/AIDS. Without organizations on the ground to apply NIH-funded research programs into workable solutions, that work becomes purely academic.
"Our institute works with nearly 20 community organizations throughout Chicago who are focused on HIV services," Mustanski said. "For the ones who have had substantial state funding it is an extreme challenge for them. Even if we solve the budget this year, there are going to be some long-term effects.
For more information on Northwestern's Institute for Sexual and Gender Minority Health and Wellbeing, visit: isgmh.northwestern.edu .
For more information on the NIH Sexual & Gender Minority Research Office, visit: dpcpsi.nih.gov/sgmro .