Once upon a decade ago, I joined some friends at a local old-school spa called Lake Steam. The expectation is that you go fully nude and I was particularly excited as a friend of a friend was going who I REALLY wanted to see naked. He was ginger and in his early fifties and just totally handsome.
As I suspected, I appreciated everything that he had to offer. Since this place is a legit spa and not a sex bathhouse, I couldn’t do anything with him. I figured I would at least flirt and see if he might be interested in doing anything afterward. Though, I am not a great flirter. If I even try to wink at someone, it’ll look like I have something in my eye.
I am, in fact, sooo good at flirting that, while several of us sat sans towel in the steam room, I managed to bring up the very sexy conversation of the cost of healthcare in America. Another guy commented about the insane amounts that drug companies can charge for medications.
My fifty-year-old-ginger commented, “And they should be able to.”
He continued. “They are the ones who paid for the research and therefore they deserve the profit. It’s their right to charge as much as they want.”
It turned out he was a log cabin republican and I immediately lost my metaphorical boner for him. I understand that they want lower taxes to get more money in their pockets. What I don’t understand is how they choose money over their (and other’s) human rights. Call me crazy, but that just doesn’t arouse me.
Though, the real reason this hit me hard was that I had only been a couple of years into my HIV diagnosis and one of my biggest fears was losing my health insurance. I would not be able to afford my medications. My virus would come back and I could die.
Side note: I’ve heard that the government also helps fund pharmaceutical research. If that’s the case, then the taxpayers also paid for the research and fifty-year-old-ginger-dude’s reasoning was bullshit. Okay, no more soapboxes. I think.
Many years later, when I quit my job in social work to live my far-fetched dream of making a living from my writing, I had the good fortune of getting forced to go on Medicaid. It was here that I learned about Ryan White programs. I think they vary from state-to-state, but here in Colorado, it helps supplement the costs of doctors visits and medications.
As I had been informed, HIV is the ONLY disease that has such programs. It makes sense as keeping people undetectable is a gigantic step in the way of prevention. But other costly chronic diseases, like diabetes, do not have such things (this might also be a little soapboxy).
Once it became clear that I would not be earning my income as a writer (even after the release of my book), the time came for me to return to the traditional workforce. Fortunately, I would not have to return social work and would actually begin exploring the world of IT work.
As much as I promise total transparency in my writing, I am not going to disclose the name of my employer. It’s one of the very few things I will choose to remain private about. So, let’s say I work for a company called “Bougie Bob’s Crab Cake Emporium.” They are the world’s leader in upscale crab cake technology.
They also seem somewhat evil and I suspect they might be run by a James Bond villain. Perhaps he has a master plan to create crab cake explosives to hold the government hostage in order to get them to lift those pesky crab cake regulations.
As much as I do not want to work for an evil company, it’s a means to an end. It even pays better than social work and I’m enjoying learning about IT. The good news was Bougie Bob’s Crab Cake Emporium offered somewhat decent health benefits (that was provided by an insurance company I suspect is also very evil). The bad news was I would be getting kicked off the Ryan White program.
As great as it was to have employer-based insurance again, this insurance was also just evil enough to make it tricky. I would have to pay 100% of all medical care and medications until I reach my $3,500 out-of-pocket maximum. Then they would cover everything 100%.
My HIV medications literally cost $3,000 per month. From years of stretching my money as a writer, I couldn’t really afford that kind of bill. I would have been really worried if it hadn’t been for the “insurance coordinator” who worked at my non-profit doctor’s office. Together, she and I concocted a master plan of our own.
Antiretroviral drug companies offer up co-pay assistance programs to encourage patients to use their meds. For my particular medication, they’d cover up to $7,000 of co-pays every year. And Cigna (dammit, I didn’t mean to use the insurance companies’ real name) doesn’t see it when we use the program.
With the ridiculous cost of my meds, I could wipe out that $3,500 out-of-pocket maximum in just two medication fills without having to pay a dime myself (so long as I don’t have to go to the doc’s office between). I once again felt oddly grateful that, if I had to have a disease, I had HIV.
The only problem was that Cigna was having trouble getting my insurance started and, after two weeks of waiting, my pills were more than half gone. My boss (who is the total opposite of evil) and I did some sleuthing and discovered that Bougie Bob’s HR department fucked up my social security number on the paperwork. This was what caused the major hold up.
We got them to correct it ASAP, however, they said it could take another 1-2 weeks for the correction to take effect and for Cigna to start my benefits. And I didn’t have enough medication to last me a full two weeks. The chances of running out before the insurance kicked in were high.
I didn’t start panicking just yet. As awful as this was, I at least had that copayment card from the pharmaceutical company to cover that first month without the insurance. My master plan would still work. It would just be delayed a month. It’s not ideal, but everything would be okay.
That was until I talked to my pharmacy when I was actually about to run out of pills. They are also non-profit and specialize in HIV patients. When I told them what was happening, the guy informed me this pharmaceutical companies’ copayment program does not work unless the medication has been billed to the insurance first. This meant the assistance wouldn’t apply to my now very terrifying medication situation.
The moment I got off the phone, I burst into tears. Sometimes I worry that I should rename this blog “Reasons Why Scott Cries.” I don’t think I am a big crier per se, but I do wear my emotions on my sleeve. I also worry a lot (duh). So, when this stuff hits, it hits hard and I just walk around with wet sleeves.
The big fear I had ten years ago with that 50-year-old-ginger-jerk had now come true. For the first time, I couldn’t afford my medication. I would have no other choice but to stop treatment until my insurance finally went into effect.
This put me at a huge risk of not only losing my undetectable status, but also of the virus mutating - adapting to these medications (as there are multiple meds in one pill). This means it would wipe out these classes of meds, which would limit the other kinds of pills I could take as some of them use different combinations of the same meds (I know, it’s confusing).
I called my boss as he has a major knack for coming up with solutions. His first response was that he would pay the $3,000 for me. That’s truly how the opposite of evil this man really is. But I couldn’t accept it. The thought of having him give me the money put a wrench in my stomach.
The next day he and I spent hours on the phone with whoever we could think of to help. We called the HR department and Cigna to see if they could rush the process. They couldn’t. We called various HIV specialists all over town to see if they had any “free samples” of my particular medication. They didn’t. This was an absolute mess.
As a last resort, I messaged a guy who worked at the health department. His name is Aaron and he is the person who I initially tested positive with when I got diagnosed twelve years prior. Although we’ve only ever grabbed a couple of meals socially since that day, I still feel very bonded with him.
Aaron got me the number of another health department worker - a man I will call Charlie. I called him and explained the situation. Charlie asked about my financials to see if he could get me back on the Ryan White program. When I told him how my gross income wouldn’t qualify, he agreed… I was fucked.
Just when I thought I had officially lost this battle, Charlie had a change of tune. He understood that this was out of my control and said, for this one time, he could bend the rules. Despite my income disqualifications, he would authorize a one-time medication fill through the Ryan White program.
As he explained the next steps, I cried yet again - this time out of joy. I felt slightly dumb for being a cry-baby. But I was also glad that I cried with Charlie on the phone as he would authentically hear how relieved and thankful I felt.
When I went back and told my boss the good news, he decided to let me take off work early so that I could get to the pharmacy and pick up my medication before rush hour traffic turned the highways into parking lots. The whole thing reminded me of how terrifying and wonderful life can be at the same time. I felt unfortunately fortunate. Or fortunately unfortunate. I can’t really figure it out.
The moment my insurance became active, I called the pharmacy and did another medication fill, stashing the remainder of the Ryan White bottle as a “backup” in case something like this were to happen again.
By the second medication fill, my plan had worked. I reached my out-of-pocket maximum even though it had been the pharmaceutical’s co-payment program that paid for them. At this point, I learned not only did they cover everything 100%, but they had kick-ass benefits - all of which I would abuse.
Unlimited chiropractic? Sure. I enjoy hearing the sound of my neck cracking. Unlimited physical therapy? Why not? My back kinda hurt from that terrible combo of weight lifting while getting older. Unlimited therapy? Duh.
I won’t pretend that I am all that wiser to this madness we call “insurance” in the United States. What I do know is that I want to value what I have when I’ve got it, and be better prepared for the possibility of when I don’t.
Since this medication situation, I have been refilling my medications a week before they run out (as the insurance company allows). I take the remaining pills and stash them away with the others - slowly building an arsenal of backup bottles for a rainy day. Because even the best of forecasters can only predict the storm 70% of the time.
Edited by Glen Trupp
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