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July-August, 2010

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Insurance Difficulties

Hopefully you’ve already read the National Psoriasis Foundation news release headlined “Insurance issues hinder treatment for 33 percent of psoriasis patients” (June 17, 2010). If not, read it here .

I don’t take the numbers too seriously. Of approximately 7.5 million people with psoriasis in the U.S., this survey involved 422, that’s 0.0056%. Statistically significant?  On the other hand, their breakout is believable:

  • 11 percent of people with psoriasis could not access a needed treatment because their insurance did not cover it. 

  • 11 percent could not get a prescribed treatment because of high copay costs.

  • 12 percent with psoriasis went without treatment because they had no health insurance.

A lot of us have either heard from other flakers who fall into one of these categories, or we actually fit into one of these categories ourselves. Lots of emails in the FlakeHQ archives are from folks stuck in these categories.

The potential cost of treating psoriasis in accordance with doctor recommendations has risen tremendously since the advent of biologic medicines for P. Not only are the biologics the most expensive medicines on a dose-by-dose basis, they are intended to be a “perpetual use” solution – meaning you continue to use them to ensure your flaking STAYS GONE, once you’ve gotten rid of it. Everything else I’ve used has time limits: you’re not supposed to use the powerful topical corticosteroids on clear skin, so once the lesions wane, you’re done with those, at least for awhile ...  you can’t use methotrexate or cyclosporine pills forever because of the cumulative toxicity and the dangers they pose (liver failure, elevated blood pressure, kidney disease) ... I’m not sure about oral soriatane, but I imagine there are reasons to stop using it, too (I couldn’t tolerate the side effects) ... light therapies of all sorts are curtailed entirely or nearly so, if/when the patient clears....

Weighing all this means biologics should be top dollar earners in the fight to suppress psoriasis. Ironically, last I heard, virtually every manufacturer of biologic meds for P had been disappointed in earnings. Lucky for all of them their formula exclusivities don’t expire. Perhaps post-trial indications suggested nearly everyone that started on a biologic would be tremendously helped by it (no matter which one) so customer “churn” wouldn’t be an income hurdle. Whether or not anyone thought this, fact is “churn” has been pretty significant. In six years I’ve tried to use four different biologics and managed to use three. Why this turn over? In my case, some of them didn’t work as expected or stopped working. After a lovely five year run on Humira (Abbott), I may now be pressured into stopping it, too. And I’m sure there are plenty of others who had to curtail their use of biologics when an insurance plan change (new job, etc.) threw up roadblocks.

In other words, vested employees on established health plans who are ALSO doing well on continuous-use biologic therapies may be grim news for their insurance companies. I double-dose my Humira and it’s costing my insurance company somewhere between 30 and 50 thousand dollars a year. (My copays, at $30 per month, add up to $360 per year.) Needless to say, I’d not be enjoying my Humira-clear skin if I didn’t have the insurance.

When it comes to universal accessibility to low-cost healthcare, nobody likes to think of limited resources and the possibility of “triage” determinations when it comes to subsidies (no matter whether the subsidy is paid-for insurance or government programs). Flakers don’t like to think about “triage” determinations because we know it will be outrageously difficult to pit flaking against, say, cancer. I don’t know the facts, but I’d be surprised if the percent of flakers who are considered “major health risks” because of their psoriasis is any larger than the percent who participated in the National Psoriasis Foundation’s survey. All of those with erythrodermic psoriasis not counted for a moment, the rest of us are not among the sickest folks looking for help to pay their medical bills.

Fortunately, the biologic manufacturers know the measure of their cost burden on customers. I have not asked for a rationale for the high cost of these drugs and, even if I did, I’d probably receive one I could not argue about. I do know that the cost of bringing all our current biologics to market was in the 10-figures bracket, and the pharmaceutical companies were not given subsidies to pay for all those trials. Yet, each of the pharms manufacturing biologics to treat psoriasis has some kind of assistance program to help us overcome the high cost hurdle. None of them can adequately support the completely uninsured, which is why I imagine the biologic reps are looking forward to health care reform. They will be able to help many more who find the co-pays prohibitive.

 

FlakeHQ Interview & Book Review

I’m very excited about the FlakeHQ interview with Keith White being posted as part of this update. White steps forward from a very large crowd of folks interested in alternative approaches to psoriasis treatment. He has an engaging and compelling story to tell. He pursued his alternative first through in-depth “book-learning.” Then his body became his laboratory. Then he documented, assessed, reconsidered, studied more and finally started to heal and now, two decades after his long study began and nearly free of lesions, he is willing to share.

His ebook, Healing Psoriasis Naturally, Pulling It All Together, is a synthesis of science, common sense and experience. It is supported by four other books that are respected in their related-but-separate areas of emphasis. His ebook’s debut this year couldn’t be timelier.

In the past decade the biologics have achieved supremacy-of-reputation as the most effective “medicinal” treatment for psoriasis and psoriatic arthritis. The long established topicals — corticosteroids, retinoids, and the non-prescription concoctions of either salicylic acid, tar derivatives or zinc — keep a spending-but-frustrated patient base in a perpetual anxiety of fluctuating effectiveness. The pill-form systemics, methotrexate and cyclosporine, help many more reliably than topicals, but the liver, kidney and blood pressure consequences make continuous administration unlikely for most. Soriatane, another pill form systemic, works for some, has devastating side effects for others and simply doesn’t work for many. So left standing on the smiling side are the biologics; regrettably out of reach for hundreds of thousands (if not millions) of flakers in the U.S. All this makes it easier to understand why there has been a surge in interest in alternative therapies for psoriasis. What could possibly bring about results like the biologics but also be affordable?

Enter Keith White with a quartet of books by other theorists and a decade of experimenting on himself. It’s not that he’s the only psoriatic who’s written a book about what works for him. Another FlakeHQ interviewee, Deirdre Earls, author if Your Healing Diet also studied and cured herself through a custom diet. Deirdre — a registered dietitian  also made a lot of sense to me, but I found her diet too hard, and the prospect of making myself follow it brought tears to my eyes. White, on the other hand, sounds like me:

“(W)hen I read about the diet outlined by Dr. Pagano, I was stopped dead in my tracks. Most of what I ate, on a regular basis, was on Dr. Pagano’s ‘Foods to Avoid List.’” [Healing Psoriasis Naturally, Pulling It All Together, page 4.] 

Here’s a man after my own stomach.

In addition to the Interview with Keith White, be sure and catch the Book Review: Healing Psoriasis Naturally, Pulling It All Together .


New In Flaker Creativity

Sherry Sheehan's poetic contribution to this FlakeHQ update is a learning experience for readers who have not experienced psoriasis in the ear canal. For those of us who have experienced it, I'm betting you will laugh with glee, like I did, to read someone else's description of something we experience frequently. And she does so in such vivid language — dead-on aural images. An Inside Job is the name of this gem. Don't miss it and the complete list of Sheehan's psoriasis poetry on the Sheehan page.

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