(February, 1999)

Expense of Treating P
from Angela A. (translated, roughly, from Portugese)

Surfing the net for information on psoriasis, I found FLAKE HQ. Much amused. I liked your definition of P. I read almost all the messages in the archives. I found a mix of glad people and sad people and no cure.

I, at the moment am diagnosed with P and no little bit irritated. I have had this P since I was18. (I'm now 44.) During all this time it was under control. A few lesions, and signs of the symmetry you discuss on my knees and elbows. "Nehuma lesao" in the remaining portions of my body. Now, over the last 6 months, lesions have appeared all over my body. I am like made of leather. The lesions start small and grow with the time. I am sufficiently depressed with this fact.

So, I decided to search for answers and solutions. I have found a derm who specializes in P and am under his care.

At the moment, I am taking "NeoTigason" and using Dovonex. I say to my friends that it is more expensive to take care of this disease than to care for a newborn. Sometimes, because of the expense, I must choose between the "NeoTigason" and the Dovonex, though I am supposed to be using both. When I can afford it, the lesions improve, but when I can't I must bear the comments from people who are unaware of how expensive treatment is. "Ufa!"

Results? My lesions are somewhat better.

I would like to know how other people handle the expense of trying to treat P.

As you see, I have written this in my native language. I suppose that is indelicate towards my P. colleagues, but I felt most comfortable expressing myself this way. "Saudacoes" -Angela A.


Ed's Response: Angela, I hope my translation of your letter isn't too botched. I used the SYStran engine at Altavista.com, which got me about 50% of the way there. For the rest I improvised. Regardless of my accuracy, what has emerged is poignant and raises an issue near and dear to all of us; i.e., how we accommodate the costs of treating our P.

I really hope others will write in about this. It hasn't received that much attention here at FLAKE HQ. (Which, I suppose, is why you raised the issue after reading the archives!)

I'll contribute this much. Were it not for my insurance, I do not know what I would do. When I started FLAKE HQ 28 months ago, I was using about four prescription products a month to treat my P and the average cost per product was around US$50. So, the cost of my prescripts was about US$200 a month, or US$2,400 per year. (That's just prescriptions—before derm visits and in-patient stuff.) Also, there are two other prescripts that I have to fill about three times a year. One is around US$20, the other US$70. Adding everything up—prescripts and derm visits—my P treatments were costing about US$3,000 per year. BUT—my insurance covered 80% of the derm visits and in-patient treatments, and all but $3 of each prescription. So my out-of-pocket expenses were about US$400-$600 (not counting my insurance premiums, which are made through payroll deduction and quite moderate by current standards).

Over the past year my insurance company has raised the patient co-payment on non-generic prescription products from $3 to $10, so my out-of-pocket costs will creep up towards US$1,000.

I am one of the lucky ones. For two reasons. One, I HAVE an insurance policy that's part of a group, so my premiums are manageable. And two, that policy covers P-related expenses. But it is also a trap. What happens if I change jobs and lose that insurance? Obviously, I'm not going to be quitting without a REALLY GOOD reason.

When I first joined the National Psoriasis Foundation many moons ago, they were embroiled in an insurance industry sensitization campaign. I haven't heard them say much about it lately, which may indicate they were successful. But I know there are many P sufferers out there who do not enjoy coverage like mine. And, Angela, I know nothing about health care financing where you come from (Brazil?). Could be that, in your case, all that I have said is inapplicable.

Again, I would be very interested in reading other reflections on the costs of treating P. What do other flaker's spend? How do other insurance companies compare to mine? -Ed

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