I Can’t Afford Prescription Medications for My Hidradenitis Suppurativa – What Do I Do? (Part 1)

Last updated: August 2023

I’m nearly 50 (okay, about a year and a few months away from the big 5-0), and I was a sick kid who grew up to be a sick adult. I’ve been entrenched in the U.S. healthcare system my entire life from the day I was born, thanks to complicated and rare diseases, including hidradenitis suppurativa. I’ve seen so many changes in how medicines and fees are handled. We have to stay diligent about making sure we get the best care possible and being consistent with taking or using the medication that treats hidradenitis suppurativa. But what happens if we can’t afford it?

What happens if I can't afford my medication?

Not having access to medications can happen for so many reasons. Maybe we had access but lost it because of a job change, a marital status change, a death in the family, or a major move, all of which can lead to loss of insurance coverage. Or maybe we never had insurance in the first place. Maybe we do have insurance, but it doesn’t cover the medications we need to keep our HS at bay. If you find yourself nodding, please trust and believe, you are not alone.

Rather than getting sidetracked on the reasons why we run into this issue, I’m going to address some workarounds. This comes from my own personal experience and my current daily life of chasing down less expensive alternatives. I’m not employed by any of the companies or organizations listed below and do not gain anything by talking or writing about them.

Ask for samples

If your doctor would like to start you on a new medication, ask for samples. Especially new medications that have only been on the market for a year or less, it’s possible that your doctor might have a stash to get you started. Internal medicine doctors sometimes have inhalers as well, though they try to keep those for the most at-risk patients.

GoodRx

I see this suggested often in patient groups and chats. GoodRx is sometimes a good option. Often people don’t understand exactly how it operates (or other companies that are set up on the same model – I’ve been solicited for a few). GoodRx sells ad space, and pharmacies pay for access to GoodRx. I can’t tell you how many times I’ve walked up to a counter and the tech has said, “I can see a GoodRx coupon.” We as consumers can also get “coupons” through their site. Are they always the lowest? No. Does every pharmacy have to participate? No. So check prices for GoodRx, but be aware that you should still shop around.

State Discount Card

This is something that is not very well known, but should be. If you bring up your dire straits to your pharmacist, that person may provide this to you to keep with you when you fill your prescriptions and it’s free. Though I am aware of it, I haven’t personally used the one issued for my state, but I have a relative who recently used hers in her state, and she was absolutely thrilled with the co-pay for her medications. You don’t have to wait for your pharmacist or anyone else to print you a card; you can use this link.

RxOutreach

This is a non-profit pharmacy that has about 400 medications available at reduced co-pays. For instance, I take a particular medication that is available as a generic. If I used a GoodRx coupon, it would be $983.00 per month. But going through RxOutreach, the cost will be $50.00 for 3 months. There is one important note about RxOutreach, though: you have to qualify for medications according to your monthly income. At the time of this writing, their website states, “RxOutreach is available to individuals and families whose income is at or below 400% of the Federal Poverty Level. This changes every year, but for a single person, annual income cannot exceed $54,360; a family of four may have an annual household income up to $111,000.” Patients do have to provide proof of income every year in order to qualify. I strongly suggest searching for medications to see if they have some of the medications you take in case you might need to use them now or in the future.

Walmart

Walmart has certain generic medications they have determined to be high-demand/low-cost, and therefore they offer them at a base low cost, with or without insurance. For instance, I take a medication that would be $331 with GoodRx, $518 with my insurance, but only $10 at Walmart, and that’s for 90 days. You can search their database before you decide to have them fill your prescription; I found many common medications that are available at these lowered co-pays.

CostPlusDrugs.com (Marc Cuban)

When this first began, the offerings were pretty meager at about 150 medications, and I did not have high hopes. I’m more of a show-me patient. At this point in time, the list is at 1,000+ medications and the prices continue to be reasonable despite the model being for-profit. I did some quick price checking, and looked up spironolactone, which came up very reasonable for 30 and 90 days. It’s not available for a large variety of doses and so I’d probably end up paying more than what shows automatically, but at least I can calculate a ballpark according to my dose. I also looked at birth control pills, as some patients with HS use that type of medication to control outbreaks. The site does have some offerings, so it would be a matter of figuring out if they would be compatible with our needs. Be warned that if Mr. Cuban feels it isn’t making enough money, he can increase the costs to make more of a profit, or he can shut down the company. It’s a for-profit company and it’s up to him how much of a profit he wants to make, even though he protests that he wants to keep it minimal when he gives interviews. The medications offered are generics that have had their patents run out, just like the RxOutreach and Walmart offerings that are bargain-priced. This site only accepts one plan for insurance – Capital Blue Cross - so plan on paying credit/debit.

Check out Part 2 of this series!

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