So I’m going to do something a little unusual for this blog and talk about something that has...

So I’m going to do something a little unusual for this blog and talk about something that has nothing to do with writing. I don’t do this a lot, but I think this is something I should share.

As you all know, last week I started taking medication to treat newly diagnosed ADD. This medication - Vyvanse - has already profoundly changed my life for the better. A lot of prescribers prefer Vyvanse for ADD because it has an extended release over the course of the day, which helps maintain focus without the unpleasantness of dumping a bunch of amphetamines into your brain all at once. It works incredibly well for me, with no side effects.

The problem? Vyvanse has no generic equivalent, and won’t until at least 2023 (which is when the patent expires). So the manufacturer charges over $300 for a 30-day supply - which is why my insurance company was so resistant to authorizing it.

Now, I have pretty good health insurance (through the Marketplace) for living in the US. My monthly premiums aren’t crushing, I have no deductible, a $2500 out-of-pocket max, and relatively low copays if I stay in-network. For a medication like Vyvanse, I have to pay 40% of the cost. That’s $118 a month. With good-quality health insurance.

I got this first month as a free trial with a card from the manufacturer. Since Vyvanse ended up working so well for me, I do want to keep taking it. But I’m not paying $1400 a year - more than half my out-of-pocket max - for one medication.

Because I was a hospital social worker, I know that most manufacturers have monthly savings cards. The one for Vyvanse would bring my copay down to $58, which is still too much, and it’s only good for 12 months. So I did a little more digging and learned that my income is low enough to qualify for their patient assistance program, and spent a good chunk of my morning gathering all the necessary materials for the application. If I’m approved, my cost will be drastically reduced - possibly free - and I can apply for renewal after a year if I still meet the eligibility criteria.

As I was doing this, it occurred to me how much my own privilege is giving me a leg up in this situation. From start to finish, I needed:

The knowledge that programs like these exist, and where and how to find them
A computer with internet access
The level of English literacy and reading comprehension necessary to read the application, figure out if I met the requirements, and fill it out
To be a US citizen (or legal resident), because these programs aren’t available to undocumented immigrantsThe knowledge, skill, and means to seek out and obtain all of the required supporting documentation, such as proof of income, proof of copay amount, proof of insurance, etc.
Access to a printer
A state of mental health where I feel comfortable bringing this up with my practitioner at my next appointment, asking her to complete her part, assertively following up when she inevitably dawdles, and persisting until I’ve ensured that my complete application is sent in
The level of mental, emotional, and physical ability necessary to initiate and complete all of these steps on my own

Look at that list. Look at how many places a patient could be confronted by an obstacle they don’t have the means to overcome, and therefore not be able to afford the medication they need even when they qualify for available assistance.

And I know that happens all the time, because I saw it when I was a social worker. A big part of my job was helping patients obtain prescription assistance, but there was only so much I could do. I could find the programs for them, explain the applications and requirements, help them fill out the forms, and hound the doctors until the physician’s sections were completed.

But I couldn’t go home with those patients and help them track down things like their proof of income or unemployment. I couldn’t be there to make sure that their depression, or lack of internet access, or the fallout from their hospital stay didn’t obstruct the process and prevent it from being completed. So quite often, those applications weren’t ever completed, the patient couldn’t pay for their medication, and they were back in the hospital a month later for something that was completely preventable.

My point in sharing this is to try to spread awareness that there are prescription assistance programs out there. Because it wasn’t until I needed one myself, and already knew what to do and how to do it, that it occurred to me how many people might have no idea. My practitioner certainly never mentioned any of this to me.

If you find an assistance program through the manufacturer of your medication but are having difficulty understanding it, completing it, obtaining supporting documentation, etc., there’s usually a number on the form you can call for help. And if there are other barriers for you - for example, if you’re so depressed that even thinking about the process is too overwhelming - please consider asking a trusted friend or family member to help you. Similarly, if you know someone who might benefit from programs like this but would have trouble getting through the application process themselves, see if they’d be okay with you giving them a hand.

We shouldn’t make it so difficult for people to get the medication they need. But until that changes, we need to look out for each other.