Treatments

[asterroc]

I'm working on writing a letter to my health insurance company, appealing their decision to not cover the drug Remicade for my hidradenitis suppurativa (HS). It's going to be an uphill battle, as the FDA has approved Remicade for rheumatoid arthritis, psoriasis, and a couple other inflammatory/auto-immune diseases, but HS isn't one of them. I would have 4-5 visits to a clinic where I'd have a 2-hour infusion of the drug, each visit separated by a month or so. Without any insurance coverage it'd be some ten thousand bucks a pop, so it's not an option. There have been less than 20 case studies of Remicade treating HS, but all have seen marked improvement in not only the flare-ups, but also in the quiescent state. My appeal letter is supposed to be a bit of the personal side, and I was going to write a few paragraphs describing all the different drugs I've tried and how they didn't work, or why drugs I haven't tried aren't any good for me, but I got all fancy and decided to make a table instead.





Why don't I try pumping some more ineffective and harmful drugs into my system while I'm at it? Give me more antibiotics, and accutane too so I can have dry skin for the rest of my life and be required a monthly pregnancy test because if the required two forms of birth control fail there's a 75% chance any pregnancy would end in a miscarriage or still birth, and those're the lucky ones that aren't born severely deformed and unlikley to survive past infancy.

Comments

[sammka.livejournal.com]

Effective!
*hugs*

[zandperl.livejournal.com]

And I've added a couple more unpleasant side-effects of levaquin since! :-P

[blue102.livejournal.com]

The table is a great idea... it conveys a lot of information. And it documents well the widely varying things you've tried, with little success! Best of luck... I'd kick those insurance bastards in the cojones for you if I thought it'd do any good...

hugs,
j

[zandperl.livejournal.com]

At first I wasn't sure if I liked the idea of a table since I didn't get to tell as much of a personal story with it, and it takes up a whole page. But I think I'll end up with my story as only one page, not "just" describing my life with HS (ingnoring the drugs), and the table as an attachment for the second page.

My doc says that the drug company that makes Remicade has assigned someone to my case, so they'll be working on my insurance company as well. Man, I really hope after all the fuss that it ends up working. Now I just gotta find time to finalize the letter!

the meaning of N/A

[poludamas.livejournal.com]

I usually interpret N/A to mean not applicable, which seems to be correct in the case of amoxicillin, which is taken at the onset of flareups and therefore the question of whether it prevents them is not applicable. However, in some other cases, N/A is apparently being used in a different sense, such as with accutane. Obviously if the ability of accutane to do any of the three things in the rightmost columns fell into the not applicable category, it wouldn't even be listed here. So, it must be that the other meaning of N/A--not available, since the data have not been gathered--is now in play. If I were critiquing this as part of a scientific paper, I would say that these two cases should be disambiguated. You could, for example, replace the N/A's for accutane and sulfacetamide with -- or ? or "unknown". I would also say "unlikely" would be OK since (for the sulfa drug) antibacterials seem to have done very little for you in general and (for accutane) this is not nodular acne.

Re: the meaning of N/A

[zandperl.livejournal.com]

I guess how I meant it was "not applicable to my situation." For example, amoxicillin I took only at the beginning of flare-ups, but I could see another doctor and another patient trying it chronically. Accutane specifically has had mixed results in other patients, but since I have not and will not take it for me it's not applicable.

Do you think the potential two uses of the term N/A weakens what's supposed to be an emotional appeal? The purpose of this chart in particular is not to scientifically demonstrate what drugs I've tried - my dermatologist already wrote that side - but to show the frustration at a series of ineffective or and options of inappropriate treatments. Narrative form *might* convey emotion better, however my letter's too long and a table is less likely to be skipped, and is easier to digest, than an essay.

Re: the meaning of N/A

[poludamas.livejournal.com]

I think a narrative probably would convey emotion better--tables are better at conveying data. I'm assuming there is a letter to go along with the table, which would probably handle the emotional goal just fine, and may even explain the differences between the N/As well enough. But, it's not hard to make the table more clear, so why not do it?

Letter length

[zandperl.livejournal.com]

The problem was that the letter could easily have been 4 pages of narrative, and they're not going to make it past the first page. It ended up as 1.5 pages and a table w/ N/A explained at the bottom, and it was put in the mail yesterday.