I Can’t Afford Prescription Medications for My Hidradenitis Suppurativa – What Do I Do? (Part 2)
Last updated: August 2023
In case you missed it, check out Part 1 of this series!
How can we forget that Amazon has everything? I did some searching for a few of my medications, and some of the prices were, well, not stellar. But on the flip side, some were absolutely great. So this is another case of needing to do homework before ordering. Some of the prices seem to be right in line with CostPlusDrugs.com. They do have Humira available, but it’s indicated that patients should call with insurance and prescriber info so everything can be validated before actual pricing is provided. Cash pricing is basically the equivalent of a used car, per month, exactly what we always run into. So Amazon has both generics and name brands, and you are able to use your insurance, in most cases. Amazon currently has access to over 60,000 medications. But we always seem to get suckered into those deliveries of hub caps, brushes for our pets, bread stamps, and oh, now, prescriptions.
This website tells you to “find help with the cost of medicine.” If you just hover on the link that is titled “Healthcare Savings,” it drops down to other links that help you find prescription savings. But then other links list medical clinics, dental clinics, mental health clinics, and substance abuse clinics. Then there’s help with finding transportation. You can also search for retreats, camps, and recreational programs. I mean seriously, what a goldmine. But that “Save on Prescriptions” section is pretty essential. That prescription that I have that would be $983.00 with a GoodRx coupon? If I wanted to try to get into a program that had a very small co-pay, or no co-pay, NeedyMeds.org has five of them listed. RxOutreach is listed, which I knew about, but I didn’t know about the other four. How great is that? I don’t need them right now, but I might in the future.
Patient Assistance Programs
Sometimes our costs can be astronomical. I take 22 medications a day (thanks to HS and a multitude of comorbidities) and four of the most expensive medications add up to what I would pay in rent in a year, every single month. My insurance doesn’t cover enough of the medications for me to obtain them with any of the methods listed otherwise, so I have gone straight to the sources – patient assistance programs. They are offered by the pharmaceutical companies and are a way for patients to receive the medicines without paying a co-pay, or if we do, it’s very small. I have gone through 9 different programs in 7 years, and am currently enrolled in multiple programs that I have to renew yearly (I wrote about the process in a separate article). These programs do have income limits and other requirements. My suggestion is to just search for the name of your medication and then the words “patient assistance program.” That’s always a good starting point. And as mentioned above, Needymeds.org has multiple programs for some of the meds that typically cause sticker shock.
Buy Meds from Canada
I have to say that this was the trickiest and most expensive option that I used to obtain my meds, but it was necessary for a time because of where I was living and what I had for insurance. One of my doctors gave me a list of some 60-odd Canadian websites, and I checked each and every one for a specific medication that I needed. The medication is not available commercially here in the U.S., only as a compounded medication, and it gets so expensive. I mean, I ask myself every month if it makes enough of a difference for me to keep taking. I’m still on the fence. But now I live in a different state, have different insurance, and have different income, so right now I’m having it compounded. When I ordered from Canada, I had to order an astronomical amount of pills just to get me through 3 months. I had to pay a lot of money up front. I had to pay with a personal check. (What?? Who has personal checks??) And I had to understand that the meds were coming from Singapore or India. So I really needed to stop watching those airport shows where they follow the TSA agents busting people for packing weird or moldy or contraband stuff, or customs agents finding concealed goods in the most creative packaging. That wasn’t at all helpful when I was trying to hand over money and hoping that my pills for my odd prescription would make it back to me (it always did). But seriously, it was always a lot of money I would have to have up front, and it usually took about 3 weeks. So plan accordingly if this is the way you want to go.
It's always worth researching options!
This is by no means a complete list of how to find workarounds to the issue of being underinsured or uninsured, but hopefully it gets you pointed in the right direction. There have been many times in the past I have said to myself, “Well, I guess I have to stop taking that. I can’t afford it!” And I hear it from my fellow patients too. But because I now know of more resources and have used so many more than I did previously, I’m hoping that this will help fellow patients stay on the medications you so desperately need. I feel like it is always worth it to do the extra research to find yourself the best deal, rather than just look one place and give up. In this case, it could mean you save yourself hundreds and possibly thousands of dollars.
When you need to vent about HS, who do you turn to first?