Taking a Breath: First Night at the Conference on LGBTI Health Research

Herukhuti, Ph.D., M.Ed.

Professor, Goddard College

Founder and CEO, Center for Culture, Sexuality and Spirituality

I awoke this morning feeling a familiar restriction in my chest. Asthma held at bay a part of the air I depend upon to breathe. My rescue inhaler, acquired from someone else, read fourteen more puffs of relief medicine. I haven’t had health insurance in nearly ten years.

Prior to Obamacare, also known as the Affordable Care Act (ACA), I received health care on a sliding scale at the municipal hospital–a place where waiting for service takes up the vast majority of the appointment. Since November, I have been on a long, arduous journey to obtain the promised affordable care of the ACA through my state’s health exchange. I live in a blue state so our exchange is fully realizing the vision of Obamacare.

But it’s a vision obscured by bureaucracy and tattered with holes that I struggle to not slip through in the process. Early in my attempts on the state exchange website, the system did not recognize me. Being Black, bisexual and male, I found the experience of being unrecognizable quite familiar. But I persisted. A couple of call center conversations led me to create several accounts–each an attempt to try a different suggested strategy. Finally, a call center operator told me I needed a state ID number through our Department of Motor Vehicles.

I don’t have a drivers’ license nor non-drivers’ ID but I used to have a learners’ permit. DMV told me the ID number attached to the permit was still associated with me but in order to obtain it I would have to file a form and pay a fee. At that moment, the no-fee sign-up promise of ACA disintegrated for me. I began a hunt for the old, expired permit among my papers. I didn’t find it but I did find the one and only receipt of my failed drivers’ test with my state ID number on it.

A final account registration with my no-cost, retrieved ID number granted me recognition and access to complete an application. I hurriedly did so, eventually finding out that the exchange determined me ineligible to obtain ACA-supported health insurance until they conducted an income verification. As a member of the contingent faculty class, my income does not fit into the neat little box of standardized, continuous employment.

I submitted the required documentation. A form letter response arrived requesting the exact same information. I resubmitted the required documentation. Another form letter arrived requesting the exact same information. I had my employer send a version of the documentation with the requested information. I waited for a response. Waited more for a decision on my appeal. Continued to wait. Without health insurance and with a depleting supply of asthma medication. I didn’t believe I could return to the hospital to receive a prescription on the same pre-ACA sliding scale.

On another call to the exchange call center to inquire about the status of the review, I asked if I would benefit from having a navigator assist me. The call center operator responded in the affirmative. Because I have worked with online systems and websites successfully for decades, I originally thought I didn’t need the help of a navigator. But my challenges weren’t located in the functionality of the website, they emanated from the system of policies, practices and procedures of the exchange.

I located a navigator–the only one to answer the phone when I called–who happened to work at our local LGBTQI health center. She immediately appeared competent, knowledgeable and experienced in navigating the system.

Now, I have someone who can work on the bureaucracy of obtaining my access to affordable health care while I attend events like the Conference on Current Issues in Lesbian, Gay, Bisexual, Transgender, and Intersex (LGBTI) Health Research hosted by Baldwin Wallace University (Berea, OH) with fourteen more puffs of relief medicine. I am here on special assignment for the Network for LGBT Health Equity writing about the conference.

The work of the ACA navigator on my behalf allowed me to sit a little more comfortably at Thursday evening’s reception hosted at the Rammelkamp Atrium of the MetroHealth Center here in Cleveland, OH. After opening remarks from conference co-organizer, Dr. Emilia Lombardi, assistant professor of public health at Baldwin Wallace University, Dr. Akram Boutros, CEO of MetroHealth, welcomed everyone and spoke about the progress MetroHealth has been making in becoming a workplace that is welcoming of sexual and gender diversity and a health care organization that effectively serves people of all sexualities and gender expressions with cultural competence.

Afterwards, I spoke with Dr. Henry Ng, who leads MetroHealth’s Pride Clinic serving LGBTQI people in the local community. He shared with me a significant challenge to the work of the clinic; there is no industry standard for creating space for people to self-identify as LGBTI on medical forms. In addition to the ways this present absence hinders efficient data collection on who clinics serve–data collection that can lead to tailoring and improvement of services–but it has a direct impact upon clinical service providing in that gender designations on third-party billing forms can limit the kind of care provided to someone. For example, a transgender man who has a cervix will require care regimes that not permitted by the billing procedures unless a doctor designates him as female or some other cumbersome workaround the service provider creates. Dr. Ng expressed significant interest in ongoing efforts to address, what I consider to be, the embedded and manifest heterosexism and cisgenderism within health policy and systems that make it possible for people to remain unrecognized and unrecognizable within the bureaucracy.

Friday’s schedule includes discussions about translating research into policy and health interventions; LGBTI health and population-level and clinical data; histories of LGBTI health research; and LGBTI health research education at the college/university level. Twelve puffs remain.

Dr. Herukhuti is founder and Chief Erotics Officer (CEO) of the Center for Culture, Sexuality and Spirituality and editor-in-chief of sacredsexualities.org. He is also a member of the faculty at Goddard College. Follow him on Twitter and Tumblr and like his Facebook Fan page.