New starter pack! Why do prescription drugs cost so freaking much?

Hey there —

Summer intern Lynn here. I can hardly believe that today’s my last day with An Arm and a Leg and soon I’ll be back in school. But I’m so excited to bring you a new Arm and a Leg Starter Pack before I go, about why prescription drugs cost so freaking much — especially because for me, this one’s personal.

That’s because there’s a med I could really use right now — it’s one I knew I might have a hard time getting, but I didn’t expect price to be my main obstacle.

Keep reading for my story. But first, the summer is winding down, so a quick heads up: The Arm and a Leg team will be taking a few weeks off from this newsletter. They’ll be back in September with new First Aid Kits and new podcast episodes. Stay tuned!

Wait, why does hormone replacement therapy cost so much?

I’ve been on hormone replacement therapy (HRT) for about three years. When I first got the prescription from my new doctor at Callen-Lorde, an LGBTQ+ health clinic in New York, I was psyched. I thought about how rare it is to have a provider with so much specialized knowledge about gender-affirming care. I texted my friends, “I’m the only trans person in the world getting accessible healthcare!”

But I would soon realize: Having the prescription did not equal having the access to the drug I needed.

The doctor had given me two options for testosterone: a weekly self-injection or a daily topical gel. Among people I know, the self-injection is more popular because it’s typically cheaper than the gel.

But I really couldn’t face poking myself with a needle. I picked the T gel, which comes with its own issues. I learned you have to apply it every day in a very specific, and extremely inconvenient way: prepping the area, applying the gel, and waiting until it’s completely dry so you absorb the full dose and it doesn’t harden on your clothes. And even after it dries, you need to be sure no other people or pets touch the area.

Even after three years, I struggle with it. If I don’t apply the gel perfectly, my hormones can fluctuate. I get mood swings, acne, and nausea out the wazoo. A few weeks ago, I actually decided to stop using it. It wasn’t a fun decision.

I was grateful to easily get a prescription for HRT, but it didn’t feel easy to actually be on HRT.

I’ve considered trying self-injection countless times, but even the thought of it makes me woozy. I know that transfeminine people can get HRT orally — taking daily estrogen and anti-androgen pills — and that made me think, Wait… why isn’t that an option for me?

And it turns out it could be. But paying for it is going to be a challenge.

Oral testosterone is a newer drug, sold under the name-brands Jatenzo and Tlando. Using it for gender-affirming care is considered “off-label,” so it would likely mean a big fight with insurance to get it covered.

And paying for it out-of-pocket is not an option. A month’s supply of Jatenzo can cost over $1,000. Tlando’s not much cheaper.

There’s no generic of either, and there may not be one until 2039, even though the original patents on Jatenzo expire nine or ten years before then. That’s because Jatenzo’s manufacturer, Tolmar Inc., went back and filed additional patents years later, which will extend their monopoly if no generic competitor successfully challenges it in court. It’s a strategy called “patent thicketing” that comes up in today’s Starter Pack. The company that makes Tlando has tons of patents too, lasting all the way until 2041.

I’m frustrated for sure, but I know I’m not the only trans person who can’t access the form of HRT that would work best for me.

And working on today’s Starter Pack, I’m reminded that it’s a problem that extends beyond the trans community — so many people struggle to get the medications they need. Drug prices often force people to settle for whatever their insurance will cover, or even go without a necessary medication.

It’s been helpful for me to understand how exactly pharmaceutical companies can charge such exorbitant prices for the drugs that people need — to know what exactly I’m up against, and to know that I’m not facing it alone. I found hope in the stories of people fighting for their loved ones — or sometimes, fighting for strangers — against Big Pharma and unregulated middlemen like PBMs, and insisting that it doesn’t have to be this way!

As for me and my old friend T, I’m not giving up. I deserve full access to gender-affirming care, and that includes oral testosterone. I’m going to talk to my doctor about what it might take to get insurance to cover it. And then I’m going to call my insurance — equipped with this new Starter Pack and an old one, our Prescription Drug Playbook.

— Lynn