Hidradenitis Suppurativa – You Are Your Best Advocate (Part 3)

In case you missed it, check out Parts 1 and 2 of this series!

You’re being treated, but you need some support from others who are going through what you are experiencing, so you join online groups. You have found your people! Some are so excited about this that they immediately post their life stories, or they ask questions, and then say, “Is anyone else experiencing this, or is it just me?” Just to be clear, you’ve joined a group where there might be a couple of hundred people, or in the case of HS nationally (or even internationally), there might be 18,000 people, or 30,000 people, or whatever number exists. They may not be active all at the same time at that particular moment, but they are there.

You are not alone

Chances are, they are feeling what you are feeling from your HS symptoms. Before you post something, search for keywords in the search box. Do some reading. If you have read a bunch of comments and you still have the overwhelming feeling that you need reassurance, it's okay to say, “I need reassurance.” But keep in mind, you don't always have to start a new thread. You can respond to someone else's comment as well. I’m also going to point out that you have joined this support group to support others. This is where you can shine.

And oh boy, you are going to benefit from patient groups. You are going to hear about great doctors, new or more effective medications or treatments, clinical trials, and just about anything else you can think of. Listening and reading will get you a lot further than immediately doing a Godzilla and stomping up to the microphone.

Patient assistance programs

I found out this information from a fellow advocate about 4 years ago, and now I pass it out nearly every day to people who are struggling to pay for their medications. I know a lot of people use GoodRx, but that company isn’t going to last far into the foreseeable future; they rely on making money from advertising, and the pharmaceutical companies and pharmacies make no money every time a coupon is used.

The first thing you should do is find out if the medication you are being assigned has a patient assistance program (especially if you are using Medicare or Medical Assistance of any kind). Usually, that income is at or slightly above poverty, so it’s not difficult to get approved for these programs.

HS is expensive!

I am personally on three different patient assistance programs through their respective manufacturers and receive those medications free. The pharmaceutical companies send them to me at home. One of the medications is $10,000.00 a month. Another is $2,500.00 a month, and the third is $978 a month. Free to me means I don’t have to be homeless in order to use these medications, because without these programs I would be on the streets for sure. There are other organizations and programs that your doctor's office may know about to help reduce your prescription costs that aren't strictly linked to the drug manufacturers. NeedyMeds keeps track of all kinds of assistance programs, as does RxAssist. Through RxOutreach, my income qualified me for one of my medications which is normally $958/month, and now I pay $25 for three months.

If your doctors' offices don't know about these organizations, by all means, you should. HS is an expensive disease. We are always having to pay for supplies and medications, and it's a massive financial burden. It's also possible your doctor's office might appreciate knowing about these organizations so other patients can use their services too.

Make yourself an HS cheat sheet

Last but absolutely not least, make yourself a cheat sheet and keep it handy, while you are out and about as well at home. My cheat sheet has five categories: Prescriptions, Over-the-Counter Meds and Supplements, Allergies, Medical Conditions, and Surgeries. Every section is alphabetized except surgeries. The meds and supplements include the dose and how often they are taken. The surgeries are listed from oldest date to present date. Everything fits on one page. This document makes my life, and all of my medical professionals’ lives, so much easier. If there is a change, I shred the old paper and print a new one.

Medical records could have errors

Your doctors’ offices may have lists of medications they think you are on, but I have seen so many errors in them. It’s not their fault. They do the best they can. I have never seen an error-free medical record in my life. I always bring the cheat sheet wherever I go, and everyone loves it – including the fact that it’s alphabetized. When you are filling out paperwork for a doctor, you can also say “See Attached” and just allow them to copy your sheet.

I hope these tips will help keep you engaged in treating your hidradenitis suppurativa. I know it can be overwhelming at times, and it can be so easy to say that you are going to leave everything up to the professionals. But time and resources are limited. Be the best advocate you can be for your own health.