I was diagnosed with HIV in 2015 on the day before my birthday. After discovering that I’d seroconverted, I adopted a new mantra: “Don’t feel sorry for yourself, bitch.” I rejected my doctor’s offer to commiserate by rationalizing that I wasn’t living in the ’80s and therefore could stiff-upper-lip it and carry on.
In an attempt to distract myself from my actual grief, I put all of my energy into navigating the health care system alone. At the time, I considered it an easily accomplishable feat. A few months earlier, I’d produced a highly profitable three-week-long concert with two different dance companies performing each night, essentially by myself, all while dealing with a concussion.
In my mind, surfing the health care system would be a piece of cake. That arrogance almost ruined me.
Following my diagnosis, it was suggested that I visit the Jack Martin Fund Clinic on the Upper East Side of Manhattan for assistance in securing health insurance.
I waited for three hours before speaking with a doctor, who told me that I had to speak with a social worker first because I did not have insurance. After being bounced around between a few departments for an hour, I decided to call Blue Cross health insurance so that I could cut through the nonsense.
I wasted another 97 minutes being ping-ponged among 12 different phone operators, all of whom lost interest the moment they learned about my diagnosis. I ended the tossing-off by demanding to speak with a manager, who informed me that I’d have a difficult time finding a plan to cover my preferred medication, Triumeq (abacavir/dolutegravir/lamivudine), especially because I did not have a job but made too much money to apply for an Affordable Care Act subsidy. He advised me to cooperate with a social worker instead.
Having only seen a doctor four times during my adult life, I was unaccustomed to dealing with the absurdities of health care logic. If I’d had an advocate, much of this could have been avoided, but I was still intent on handling things by myself. So I blundered ahead. Jack Martin staff told me to come back in two weeks for an appointment; when I came, no social worker was available. I had to wait another two weeks.
Down the Rabbit Hole
More than a full month after being diagnosed, I had my first appointment with an HIV doctor. During our 30-minute meeting, she gave me a test to confirm that I did indeed have HIV and eventually rewarded me with a script for Triumeq. In 2015, Triumeq was considered the gold standard of HIV medication; a single-pill-a-day regimen with minimal side effects.
I left that clinic and ran to the nearest pharmacy. When I presented my script, I was asked, “How are you going to pay for this?” I didn’t have insurance, so I responded, “Card, I guess.” The pharmacy tech scoffed. “It’s $3,000! I’m not taking your money! Go get yourself insurance.”
Unable to argue any further without having spastic twitches, I rushed home and began researching programs for people living with HIV. After a few minutes, I came across the AIDS Drug Assistance Program (ADAP), which covers the cost of medication and care for people living with HIV.
Two weeks later, I received the first of many manila envelopes from Empire Station in Albany, New York, requesting that I submit additional documentation regarding my finances. I called to speak with someone about the confusion and was passed back and forth by four different people over the course of two hours, until a woman finally took mercy and instructed me to resend all of the information that I’d already submitted with an additional note stating that all requested information was included.
Two weeks later, another manila envelope demanding the same already shared financial information appeared. This absurd nightmare washed, rinsed, and repeated for the next two months until the sight of a manila envelope sent me in a full day of sobbing hysterics. Even now, receiving one gives me a panic attack.
A New Low
By that point, my weight had dropped to 133 pounds. I am 5 feet 11 inches, and even as a professional dancer, my weight never dipped below 148 pounds. This was a new and deadly low. Defeated, I looked up the AIDS service organization Gay Men’s Health Crisis (GMHC), to schedule an appointment. I finally realized that I could not make the system work for me on my own. Trying to do so had left me racked with pain in all of my joints, exhausted, unable to sleep, and looking like a desiccated zombie.
Though I had set up an appointment, a bout of pneumonia stopped me from going in to GMHC. I tried one other option, the New York City community-health clinic Callen-Lorde, but staff there told me they had no insurance navigators and to come back another day.
That sent me into tears. I left and walked to GMHC, where I explained what had just happened to me at Callen-Lorde.
Salvation in an Angel
His “It’s Friday, and I just want to go home” eyes lit up as he exclaimed, “They told you what? That pisses me off when I hear anything like that! We’re here to help you! Go sit down over there. I’m calling Angel. He’s one of our best. You don’t have to worry about anything else anymore.” And I didn’t.
Ten minutes later, Angel Soto came striding toward me, decked out in a Super Mario costume, cap and all, but with a paper mustache. Reaching me with his hand extended, he said, “Hi, I’m Angel Soto. I hear you’ve been having some trouble. Why don’t we stop into an office so I can get you everything you need?”
For the next 30 minutes, Soto listened to me, encouraged me to drink water and eat a few snacks, bonded with me over the fact that his daughter and I were both dancers, and shared parts of his story with me. Instead of treating me like a case to be closed or brushed off, he established a relationship with me, so that when he finally said, “I promise, I’m going to help you take care of this,” he was no longer a random guy in a Halloween costume; he was an advocate who had invested in me and taken the time to earn my trust.
Soto, who is now GMHC’s senior community organizer and consumer advisory board liaison, recently spoke with me about the day that he saved my life. He recalled how concerned he was for my well-being and his automatic impulse to engage with me so that I could relax.
“I was really worried about you,” he said. “But I got it. I know there are a lot of people that are going to try to make you feel a certain way about needing help versus listening and being supportive. I loved that I was able to help you feel better. We should all want to do that for each other, because at some point, we’re all going to need to talk to somebody who will really be patient and listen.”
Listening = Advocating
Soto wasn’t just patient with me, he was precise in listening to me and then showing me that he’d understood my needs by calling on the correct people to address my concerns. At one point, he put someone on speaker phone and explained to her that ADAP had been screwing me around.
Soto was saying everything that I’d already cried about to at least 25 different people, only this time, someone was actually listening. The person on the phone told us to fax my information over—then and there—and it would be handled properly. It took him less than one hour to accomplish something that I’d spent three and a half months failing at.
Things Have Gotten Better, but You Still Need an Advocate
Insurance access in New York has changed dramatically since 2015. There is now a “same-day diagnosis, same-day treatment” protocol that allows newly diagnosed people to receive a one-month supply of medication, instead of being made to wait until they have insurance. These newly aware people are also put in contact with advocates who assist them with ADAP enrollment to help prevent lapses in drug adherence.
But most importantly, it sets up a support system so that people living with HIV do not have to face confusion or hostility from administrators who lack the patience to assist in resolving problems.
Soto said, “I’ve seen many people come in sick because they weren’t getting medicine or they were being mistreated by a doctor who didn’t want to give them answers. As an advocate, that pisses me off. I hate bullies, especially in our systems. And I won’t tolerate that, because there’s always an answer; there’s always somebody to call to get you the answers you need.
“I’m an advocate, and I will always stand up for what’s right,” he continued. “I’m not gonna sit there and tell you, ‘Oh, that’s too hard. That’s too much paperwork.’ If I’ve got to write an encyclopedia to get you results, guess what—we’re writing an encyclopedia.”
That’s what an advocate does: helps patients write and update the encyclopedia that will transform their lives for the better, instead of pushing them into a predetermined, one-size-fits-all peg.
Even if you are the most capable and self-sufficient person in the world, there is no reason to deal with an HIV diagnosis by yourself the way that I tried to. With 2021 upon us, and after four years of low regard for medical science and compassion, let’s all embrace that people living with HIV need a team of advocates dedicated to demanding that they receive the greatest care possible, as soon as it becomes available.