One patient’s perspective: Stuck in the middle

August 19, 2016

Diagnosed at age 22 with psoriasis and psoriatic arthritis, this patient is a widower with three children. She’s on Medicaid. This is her story.

Melissa Withem Voss, from Waukegan, Ill., is 42 years old. A widower with three children, Voss was diagnosed at age 22 and has psoriasis and psoriatic arthritis. She’s on Medicaid. This is her story:

Several years ago I was trying to obtain any biologic and was told that I would have to use step therapy.

I have been given several creams and ointments, but I have moderate to severe coverage, so one tube usually doesn't help. I have found that with some medications, the pharmacy can only dispense a small amount because there would be additional payments needed in order to cover the full medication that I need.

READ: Soaring drug costs leave derms, patients scrambling

At my physical worst, 97% of my body [was affected]. It took having that severe of coverage for the state to agree. I was placed on Cyclosporine in the hospital. I later had to go into a drug trial offered by my amazing doctor, Stephanie Mehlis, M.D., of NorthShore University Health System, Skokie, Ill. She tries to help as many psoriasis patients as she can by pairing them to trials.

It is amazingly stressful when your doctor and you agree on a medication choice but you are not be able to take it. Getting help from the government is a huge hassle in triplicate! There are so many forms and authorizations for the doctors to file and sometimes for the patient. It is a long waiting game to approve something that you and your physician feel is necessary.

The horrible part is having the patience to wait. You are frustrated, in pain and itchy. The doctor wants to help you but her hands are literally tied by the government. Your physician will often prescribe other medications in the meantime. Sometimes they come with copays that you can't afford. Then your physician gets upset because you are not following his or her suggestions. It's not that you don't want to-it's that sometimes it's a choice between groceries, school supplies or your medicine.

Another thing that is very worrisome is if you can't take the medication due to costs [other than money]. What harm is this going to cause your body in the long run? What I mean is, are you going to become easily dehydrated or sick from the overactive immune system? What about co-morbidities?

This article is part of a series that is looking at the complex factors behind the rising drug costs in dermatology. Over the course of the next few months we’ll explore a systemic problem, the challenges that each member of the system faces and whether there is a solution that will balance affordability, access and innovation. Look for Voss’s advice, solutions and thoughts about her experience in future articles in the series.