Where Do I Go From Here?

I have been living a nightmare when it comes to getting proper treatment for my psoriatic conditions. When the Governor of Louisiana, John Bel Edwards, signed the Medicaid expansion in 2016, I was thrilled to learn I was being moved from the Affordable Care Act Insurance to Medicaid. It didn’t take long for that thrill to turn to dread.

I would soon come to learn that not a single private rheumatologist or dermatologist clinic would accept the Medicaid as a form of insurance. I’m sure you’re thinking that cannot possibly be. Let me assure you it is. I even got the National Psoriasis Foundation involved because they did not believe it was possible either. Imagine their surprise when call after call to the clinics statewide all came back with a resounding no, we do not accept Medicaid. Then my nightmare began.

Having ACA insurance

Just a little back history so you will understand the current nightmare of care I am limited too. When prior conditions were removed from the things that insurance companies could give to deny you the insurance, I was able to get health insurance coverage. Before that I was not able to get insurance because of having psoriasis. This limited me to going to a teaching, low-income hospital that did not even have a dermatologist on staff.

With the ACA insurance, I was able to see a dermatologist for the first time since being diagnosed with psoriasis. That dermatologist took me from being 80% covered in psoriasis to 20%. It was also during this time that the psoriatic arthritis started.

Now to having Medicaid

What a nightmare. I am basically right back to where I started from. To my dismay I am back going to that teaching, low-income hospital again for treatment. I say teaching because it is a medical school that offers interns the chance to put in clinical hours. Don’t get me wrong the interns need to learn but why does it have to be at my expense. Oh, by the way I should state that these interns are being trained for Rheumatology but also must treat my psoriasis because there is not a dermatology clinic there.

So here is how a typical visit goes: intern comes in, looks at psoriasis, ask about joint issue, goes gets physician on staff, he/she comes in looks me over, confers with intern and then leaves. Intern talks about my medication and if we are switching then leaves. Nurse comes in with paperwork for a 4 month return appointment. Does that sound like proper care to you?

Every six months, these interns progress on so when I go back in, I usually must start all over again with a new intern. Here I go explaining my history and what I am dealing with. Let me give you an example of how much fun that is. A new intern comes in and I start explaining about the psoriasis and the psoriatic arthritis. He wants to see the places I have/had psoriasis, so I show him. His response to me concerning the areas that are now clear of psoriasis was that “I don’t believe you have psoriasis. You have vitiligo. Mind you now that I have been living with psoriasis for 20 years. To say I was angry is an understatement. I told him that if he never heard the term hyperpigmentation, he needed to go to the nearest computer and look it up.

Where do I go from here?

As long as I am on Medicaid, I have no choice in the matter but to get treatment at this hospital. I have often thought of calling Medicaid and telling them to take me off it so I can get private insurance. However, that would put me paying for pricey insurance just so I can see a rheumatologist and dermatologist. Yes, the medical care would be better (or at least I hope it would be) but the money I would have to pay is a burden that I just can’t afford now. The only thing I can do is to be my own advocate for proper treatment until something changes. It’s all I can do.