Reflections on Being Medicated in the USA.

In the USA, health insurance is a privilege. Many health care plans have literal tiers—like platinum vs. bronze—where you either get basic care despite paying thousands for insurance or end up with essentially worthless coverage and massive out-of-pocket costs. Approximately 60% of Americans under 65 rely on employer-sponsored insurance –whose cost has risen beyond inflation and wage growth. In 2019, a survey by the Kaiser Family Foundation and LA Times found that 2 in 5 adults with employer health insurance reported difficulty affording medical care, prescription drugs, or premiums.

Finding a job with 100% employer-covered premium health insurance can feel like finding a unicorn. And employers use this to their advantage. A recent survey said that 1 in 6 workers dislike their job but stay for the health insurance–I’d imagine in reality that number is much higher. So many folks stay in toxic and traumatic jobs out of fear of being uninsured. For many of us, especially those with disabilities and chronic illnesses, not having health insurance can be a death sentence.

My entire adult life I’ve lived in fear of being unemployed and then losing insurance and becoming unhoused, deeply unwell, and unalive. I don’t have a safety net or a family who can take me in if times are tough. I am disabled and have multiple chronic illnesses. I take a significant number of medications each day, none of which can be stopped cold turkey and all of which will fuck with me enormously if I go off of them.

Even when I had “premium insurance”, navigating the healthcare system was tough (and let’s not even get into the oppressive, racist, sexist, fatphobic, and otherwise harmful and dehumanizing care). Having different practitioners speak to each other and align felt like pulling teeth. Getting my medication each month was pure misery because something always got messy–an incorrect script, things being out of stock. Even with “great” insurance I was paying hundreds of dollars a month for medication. Staying alive was already feeling cost prohibitive in addition to the yearly additional passed-on costs due to insurance premiums constantly rising. Being disabled and relying on the American healthcare system has been always already abysmal for me, but it was about to get worse.

I was laid off eight months ago from a non-profit and was told it was for restructuring purposes, even though the decision was definitely discriminatory on many levels. The severance was pitiful and the only “positive” benefit was 3 months of employer-paid insurance, through COBRA. I didn’t want to sign the package and was looking to find a lawyer to take my case, but ultimately the shitty one-week deadline to sign or lose everything and the very real necessity for health insurance eclipsed everything else.

It has been an absolute nightmare since losing my job. My current healthcare team (from various organizations) does not take Medicaid. When I asked one of them they said “Nope, you’ll have to find another provider, good luck.” I have felt angry, anxious, and alone – none of which helped my health. Figuring out unemployment, Medicaid, and other government assistance has felt like trying to study for an exam with a textbook in a different language. I got denied SNAP because I missed an interview that I didn’t know about –the letter scheduling came after the appointment. Unemployment checks never came on a set schedule, sometimes coming two weeks late, causing issues with paying rent. There are so many unexpected hurdles even after you've gathered all of your documentation and been approved for a benefit. It feels like being forced to jump through all the hoops for benefits you still can't live on.

Because I had a gap between COBRA and when my Medicaid was approved, I started rationing my medication. This is in no way what was good for my body but I knew I couldn’t go from full medications to none. I have experienced severe side effects and managed the best I’ve been able to, but it’s been rough as hell. When I finally got my Medicaid card I went to update it with my pharmacy and pick up a few prescriptions–I thought I could finally get a little balance back. I was sent to a consultation window and the pharmacist had my medications in hand and she told me I couldn’t have them. She said that all of my medications now required prior authorization because I was on Medicaid. My anxiety and anger went through the roof. I asked her why this was necessary when I’d been on the same medications and the same dosages for an extended period. She shrugged and washed her hands alleging it was a Medicaid issue. I would need to get my current care team to get the prior authorization, but I didn’t have one anymore. I then watched as she threw away my medication in the trash and walked away.

What a slap in the face. As soon as I got my Medicaid card, I started searching for providers. Of the few who responded to my inquiries, all said they did not accept Medicaid—contrary to what was listed in the portal. Some were virtual but only within a specific radius of NYC; others required a 2-3 hour drive for care—if I could even get an appointment. After intake and other steps, it would take months to get a new team and new prescriptions. I felt like there were no good choices, nobody cared, and that I was utterly alone. Plus, the lack of providers matters little when the proportion of healthcare dollars going to prescription drugs is low, and falling. In recent years, an avalanche of highly effective and costly drugs has become central to modern medical care while becoming a major financial burden for many elderly and disabled folks. As an example, a 30-day prescription of just one of my medications would be $1401.74 without insurance. It shouldn’t be a choice of staying housed/fed or accessing the medications you need.

Ultimately, I was lucky to receive the $420 needed for an appointment with my original doctor through mutual aid. Yup, $420 for 20 minutes for us uninsured folks. After securing an appointment a few weeks ago for my many medications, I’ve only been able to get two of them. Most are waiting for prior authorization for which I received a laughable email that fully highlights how inefficient our systems are and how it’s just a game of, blame someone else and fuck the patient.

The prior authorization is simply an effort on the part of your insurance company to make it difficult to secure the medication using your pharmacy benefits. You have already met with your doctor, discussed the medication, its risks and benefits and your doctor has prescribed the medication.
Your prescription is available at your pharmacy and you can immediately pick up the medication. Without the prior authorization, your insurance company may ask you to pay directly for the medication but ultimately that is your choice.
Please understand that once the clinician creates/submits the prior authorization (in a site called www.covermymeds.com) it will usually take 24 hours to 5 days, and sometimes as long as 2 weeks, for the insurance company to render a decision depending on your benefits/coverage. If you prefer not to wait, you might want to discuss with your provider alternatives (if any) We simply have to wait for your insurance to process and review the request.*
(*Email highlighted by the author.)

Three weeks later, I am still waiting on prior authorization despite the given timeframe. My body is struggling to hang on while I anxiously await access to my meds, but I know this cycle will just repeat itself next month—and the next—as I search for a job with insurance (which has been its own exhausting and frustrating experience). Until then I live in uncertainty, not knowing if mutual aid will come that will help secure my next month of care and survival.

Living this way is like experiencing small deaths, like you're hanging off a cliff and the systems that should care for you are slowly pushing your fingers off one by one. I’m not privileged enough to have a safety net so it’s a question of holding on. Wondering what parts of my sanity, and mental and physical health I’ll have to sacrifice next.

Note: At the time of writing this, Trump and Republicans are preparing to cut Medicaid funding–meaning 600,000 people would lose access to healthcare. All of this is to fund his lower tax cuts for the rich and his “crackdown” on immigration.

Editor’s Note: If you’d like to offer mutual aid to help the author with their current needs, you can support them via Venmo, $itsalwaysaf.

A BITTER PILL TO SWALLOW… IF I HAD ACCESS TO IT

Reflections on Being Medicated in the USA.