Patient Assistance Programs - How You Might Still Be Able to Afford Biologics for HS (Part 1)

Maybe it feels like you had to trudge through some swamps and fight off airplane-sized mosquitos to finally get what you have been waiting for to treat your hidradenitis suppurativa: a biologic.

You’ve been hanging onto those magic words: “I think we should start you on Humira.” The clouds part and the sun shines. Or, “How about Cosentyx? The newest studies are very promising.” All of the birds in the universe seem to sing at the same time. But oh, wait – all of the doors clank shut again and the world goes cold. I mean, has anyone seen the price tag on these biologics? How in the world can anyone afford these? Let me tell you about patient assistance programs.

Who can afford biologics?

All of the support groups are a-buzz with talk about the biologics like Humira, Cosentyx, and even Remicade. Sometimes you might even hear a little bit about Enbrel, Dupixent, Cimzia, Simponi, and Xeljanz. After a while, it all sounds like alphabet soup, right? Well, it might also sound like straight-up dollar signs.

Some of these medications retail for $2,500 per month (as of today’s date, U.S. prices), but some can get up to about $14,000 or more per month, depending on the dose and frequency. Who in the world can afford these? As soon as you hear that price, you know there is no way you can take that and pay for a mortgage or rent, as well as transportation, food, insurance, and utilities. If you’re like me, you may even take 2 or more biologics per month.

Ask for a coupon card

Ultimately, I hope your doctor has experience with hidradenitis suppurativa and patient assistance programs. If they are suggesting a biologic, they should know the medical side like the tests required to make sure you are a good candidate, but they should also know the challenges you face in acquiring the medication. I honestly haven’t met one single person who can afford $24k and up to $168k a year just for one medication. I also don’t know many people who have been able to afford simply the co-pays through their insurance without any type of reduction.

Start by asking if your doctor has a coupon card for your biologic. It seems silly, but it’s crazy how much that card can bring down your co-pay. This is for people who have strictly commercial insurance, but you are limited on how much you can use it for, or how many times. It is so important to get your hands on these if you can. These are very restricted, and not everyone qualifies.

The pharmaceutical patient assistance program

If you don’t qualify, don’t stress. There is the pharmaceutical patient assistance program. I’m here to say that I have been through NINE so far in seven years. I happen to currently be disabled and have Medicare Part D, and the patient assistance program (also known as a PAP) is especially for people like me. My combination of reduced income and reduced prescription coverage are exactly why these programs are in place. But also understand that some of these programs offered by the pharmaceutical companies allow household incomes up to $62k-$100k, depending on the medication and the condition. There are also quite a number of medications offered. I actually am on three programs presently, one of them being a non-biologic.

To be proactive, you can search the key terms, “patient assistance program Humira” or “patient assistance program Cosentyx,” as an example. When you do this, make sure you are looking at the most up-to-date info, as sometimes you will run into applications or phone and fax numbers for previous years. If you fill out an old application, trust me, you will have to do it all over again. (Check the date of the application in the bottom left or bottom right in small print, and if it’s more than 12 months old, call the patient assistance program phone number if you can’t find a newer application!)

What documents are needed?

If you are confident that you found the most up-to-date application in its entirety, print it out, including the instructions. If you're not quite sure, your doctor's office or the medication's manufacturer can assist you with finding the most up-to-date application. The instructions are very important! They will usually tell you what the income limits are, and if they accept regular commercial insurance, Medicare Part D, and/or Medical Assistance. If you have no insurance, there’s a checkbox for that too.

Then the instructions will tell you what kind of documentation to send with the application. Usually they would like to see identification, a front and back copy of your insurance card, the completed application with your information, and proof of your income. For me, my proof of income comes from Social Security. Other forms include tax returns or pay stubs for 3 months (usually) if you are currently employed. Some of my programs want to see letters from my insurance company stating that a medication was processed through insurance first showing what the cost to me would be.

Stay tuned for Part 2 of this series!