Patient Assistance Programs - How You Might Still Be Able to Afford Biologics for HS (Part 2)
Last updated: June 2023
In case you missed it, check out Part 1 of this series!
There is a trend that has started recently, and that is they run credit reports to see my credit worthiness. At first when this started, the pharmaceutical companies claimed that they “wanted to make sure I was receiving all of the benefits that I should be.” That is no longer the reasoning being offered, and of course you can do your own research regarding the reasons why. Just be aware that your credit will likely be checked, and if you have any blocks or freezes on your reports, they will have to be temporarily lifted while you apply.
The doctor portion of the application
Another very important part of the PAP is the doctor portion. I take a very active role in my own care, so when I do my enrollment, I fill out this portion of the application with my name, address and birthdate, and that just leaves the doctor with the dosage, refills, and signature to fill out. Trust me, this works! I can’t tell you how many times doctors’ staff have somehow found addresses from 10 years back and written those instead of my current address, and then everything is messed up. Then it takes forever to get anything fixed. I believe in getting it right the first time, so I just do it. Hey, what doctor wouldn’t like something easy to fill in? In any case, the doctor should give you enough refills to last through a full year, or at least until the PAP does their annual renewal (see below).
It’s up to you how you want to do the next step. Either fax in all of your portion and ask the doctor’s office to send in that one page, or have your doctor sign the one page on your next visit and you send it all in together all at once. I do it both ways and then will give the PAP about 5 business days until I call and check to see if they received it.
How does the PAP handle the medication?
The way the PAP handles the medication can be different, depending on how it actually enters your body. Remicade, for instance, when it’s administered as an IV, is usually sent to the doctor’s office (with some exceptions). My first dose of Dupixent was sent to my doctor’s office because they wanted to see if I could handle a traditional syringe, but then after that it has been delivered to my home. All of my other medications have been sent to my home.
I live in a hot desert state, so when they are sent to me, I make sure I am home so they don’t sit outside and degrade in the heat. All of my biologics are like liquid gold to me, so I make sure I take good care of them.
The renewal process
Every year from October to December, the PAPs renew. They will snail mail, email, and text you to remind you that you have to go through this process – again! Fill out another application, send another page to your doctor to fill out, update your insurance and income, don’t skip anything.
One of my PAPs actually sent me multiple reminders as if I never sent in any of my information, which was incredibly frustrating. They would send me messages saying they weren’t missing anything, and then a few days later would send me new messages telling me to renew. The only thing I can say about this is if it happens to you, just take a deep breath and try to keep calm; October through December are pretty trying on everyone. Just be prepared.
What comes next?
After you go through this process, what does this mean for you? It means that this medication is either completely free, or you pay a very small co-pay. For all nine of the programs I have been in, all of my medications have been free to me. They have all been incredibly helpful when they have worked.
Hidradenitis suppurativa is an incredibly painful disease. It can also be an incredibly expensive disease. I have talked to so many patients who have said, “I had to stop taking Humira because I couldn’t afford it.” That just breaks my heart, because I’m not sure they knew anything about the PAPs. The downside of Humira and stopping for greater than 14 days is that it loses 20% of its efficacy if you start again, so telling them about PAPs after the fact isn’t exactly helpful. I hope after reading this, you take a look at PAPs and remember that they are out there, and it might be worth looking into, especially when you're starting your medication.
When you need to vent about HS, who do you turn to first?