Flake Confessions - 4 - The Truth and the Sentence

Chapter Four
The Truth and the Sentence

It took some time, but I finally found a derm who told me “like it was.” He said, “Ed, I can't cure this. We can treat these lesions as they flare, but you're going to be spending a lot of money on regimens and medications.”

He's been right on. Until I got some sense and secured health insurance with a prescription plan, I was spending over $200 (before 1995) a month on potions and unguents (as I affectionately call my corticosteroid creams, gels and ointments). Because of my insurance, our “group” as a whole is underwriting my psoriasis therapies, but I read some insurance companies are balking about continued support for psoriasis treatments, since it's “a disease without a cure” or “a cosmetic condition.” Doesn't that just make you feel real warm and friendly towards the insurance industry?

For psoriatics, medicines are like groceries — can't live (decently) without them. I've spent periods of my life on allergy medications, blood pressure medications, and now psoriasis medications, and the cost of keeping my psoriasis under control has been far greater than keeping my sinuses clear or my plumbing from bursting.

Why this is, I'm not sure. I can only guess it has something to do with statistics. More people take beta blockers (for high blood pressure) than use corticosteroid creams (for psoriasis)? Hence the cost‑per‑pill for high blood pressure sufferers is mitigated by volume more so than the cost‑per‑tube of psoriasis unguents for flakers?

Until there is a cure, we must live with the fact that as a disease, psoriasis is low on the pecking order of concern. Flakes, after all, can be vacuumed up. AIDS, on the other hand, is a killer. So are all sorts of cancers. Is it wrong that psoriasis takes a back seat to medical research in these other areas? I might have thought so until I held the hand of a friend of mine who died of cancer; or until I met the San Francisco‑based nun who told me about her “flock” dying of AIDS. It's rather difficult to stand at the bedside of a friend who's dying and feel indignant because you scratch your head and a flake floats free.

If I am any example, once you “grow” a psoriatic lesion it’s part of you for life. It waxes and wanes, storms with redness and flakes at some times, almost disappears at others, but it's always there. You know it's always there. The only change in the lesions — other than their expected waxing and waning — is a bad one: They can get bigger. I've had lesions that are attracted to one another. Every time they wax I can see them drawing closer together, growing to connect, and eventually they do seem to connect and suddenly I have one big lesion where before I had two smaller ones. And so it goes.

The big mystery is not the growth, but what controls the waxing and waning? Is it the steroid potions and unguents my derm prescribes? I tend to think of these medicines as pesticides; they work on my psoriasis rather like the ant‑killing stuff I have to use every year when the little red sweet ants rediscover my kitchen (and the cat food). Using the potions and unguents is reactive. The psoriasis itself is proactive. It comes when it wants, and then I react and battle it away as best I can.

What causes the lesions to flare is appropriately referred to in the community as a “trigger.” Big mystery: triggers.

The only trigger that seems really apparent is physical trauma. It's so apparent, in fact, that they've given it another name: The Koebner Phenomenon. Damage your skin and the damaged area is apt to become a psoriatic lesion. It's so predictable it has become unexciting.

I blew my appendix three years ago [1992] and, stupidly, carried around the wastage for eight days before I decided it wasn't food poisoning or the flu. By the time they finally cut me open, they had to cut me open in a major way — from the navel to the groin — and stitch me back up with multiple holes for drainage and four “buttons” to hold my abdominal wall together while it healed. All these holes and buttons have since become psoriatic lesions. It's so damned fascinating my derm has taken snapshots (for which I get absolutely no royalties).

So, we know that skin trauma can lead to psoriasis lesions. Get cut; earn a lesion. Pretty straightforward stuff.

But what about all those lesions not aggravated by skin trauma? Something triggers those areas to wax and wane, flake and acquiesce.

The next most common excuse I've heard is stress. Oh yeah, the diagnosis de jour of the eighties and the nineties. You and I both know that's bull‑pucky. Stress is a six‑letter word for life. You think you and I have stress? How'd you like to be all curled up in your cave, sweetie under one arm, beloved offspring piled up under the other, and suddenly a saber‑toothed tiger decides to claim your habitat? How does that vision of stress compare to your yesterday's problems with the boss or the subordinate?

Everybody deals with stress. The only community I know of that's not stressful is the one that resides at the cemetery.

One derm asked me, “Do you have a stressful occupation?” I replied, “Who doesn't?” I'll reply the same way when the next derm asks me the same stupid question. Everybody faces stress, and yet only a small percentage of us have psoriasis. What do you do when you've had a stressful day? Some of us go home and flake; others go line dancing. Give me a break.

Now, having said what I have to say about stress as a trigger, I must back up and admit that my psoriasis has run pretty much parallel to my being in business for myself. Psoriasis never manifested itself in my life before I started having to “invoice” rather than be quiet between pay checks.

I've admitted this to my derms and each of them have nodded their heads and grinned as if to say, “Yeah, yeah, I told you so.”

Yes, stress may be a trigger. But stress didn't load or cock the gun. Something else did.

●●●●●

Ed’s Postscript (January 31, 2008): It seems to me, though I have no statistics to back this up, that today psoriasis is generally getting better consideration from major insurance companies than it did in 1995. We still hear about fights between flakers and their insurance carriers (see the interview with Phil Aaronson for one harrowing story). I give partial credit to the National Psoriasis Foundation for their ongoing work to improve insurance coverage for flakers. This was an important part of their mission when I joined in the early 90s and remains so.

The advent of the biologic drugs and their $1,200+ monthly price tags has been accompanied by some of the traditionally bad behavior from insurance carriers, but I’m hearing more about being uninsured than poorly insured. As even the briefest brush with any mass media these days will confirm, 47-million uninsured Americans are “big news.” I’ve heard the act of being without insurance referred to as an “epidemic” in the U.S. today.

I think the real culprit is across-the-board increases in costs and charges. Patients are at the bottom of the hill down which all crap rolls. Every foot the feces tumbles on its way to us introduces new foulness. It is greedy doctors, escalating costs of malpractice insurance and the cost of doing business. It is the high costs of pharmaceuticals, in part supported by the outrageous cost of meeting FDA requirements to bring a drug to market; it is the expensive technology of health care (some of which is questionably useful [see Scientific American, “Pay for What Works,” February 2008, page 32]).

Many people believe the business of health care suffers inordinate expense and inequitable availability because it is, in fact, a “business.” Being a business in a free market economy means prices can be set at “what the market will bear,” and a big factor in determining price is availability. To be a highly profitable “business,” health care is influenced — and needs to influence — these economic factors. No doubt conflicts of interest are at play, as they always are in a free market economy.

The state of health care in countries where it is nationalized (a.k.a. socialized, government-managed, etc.) is the most common source for comparison. Merely a decade ago, we were willing to tolerate high prices and inadequate accessibility because we had free choice and “finer care” than we were hearing about from countries with nationalized health care. We don’t hear that so much anymore. In fact, we sometimes hear the opposite (see the interview with Mike Bailin and my Briefing squib about the interview).

Since this chapter was composed in 1995, I’ve become aware of a significant number of generic medicines for psoriasis. Many topicals are now available in generic formulations (including clobetasol propionate, betamethasone valerate and good ol' hydrocortisone among others). This has helped us with the cost of drugs; however, gains in this area are offset for many by the high cost of biologic drugs ($1,200-$2,400 per month for the most popular psoriasis biologics).

I wrote that “psoriasis is low on the pecking order” of human ailments. I was unaware, when I wrote this, that flakers in the U.S. in the 1990s were missing out on the largest increase in federal funding for medical research. In 2005, Michael Paranzino launched Psoriasis Cure Now! — an organization designed to intensify the psoriasis research lobby in Washington, D.C. Additionally, the National Psoriasis Foundation organizes an annual Capitol Hill Day each year (this year it’s happening on March 3). These initiatives are making headway and should continue to do so. Research toward a cure for psoriasis is unlikely to emerge from the pharmaceutical industry, for reasons I wrote about in response to an email in Jan-Feb 2008’s Mail.

This chapter ends with my 1995 denial that stress is an important component of psoriasis. This was a rare opinion in 1995 and has become rarer. However, I’d rather “dodge” than “recant.”

When derms and others say “stress can cause or aggravate psoriasis” they are no doubt telling the truth or a part-truth. I’ve turned to WebMD.com for a current definition of stress and here is a cogent piece of what I found:

[Stress] can be linked to headaches, an upset stomach, back pain, or trouble sleeping. It can weaken your immune system, making it harder to fight off disease. If you already have a health problem, stress may make it worse. It can make you moody, tense, or depressed. Your relationships may suffer, and you may not do well at work or school.

Prior to this, on the same web page, stress was described as the biological traits of a “fight-or-flight” response — hormones gushing, heart racing and respiration speeding up, surges of energy.... The article states that stress becomes a health problem when there is too much of it.

My dodge is this. It may be true, given these descriptions and definitions, that we lead stressful lives that may aggravate our psoriasis. (I still don’t believe stress ‘causes’ psoriasis.) That’s interesting but not what I would call a very useful piece of information. What can we do about it? A group of so-called psychodermatologists believes that, at least for some, reducing stress can reduce psoriasis symptoms. Treatments stemming from the so-called "mind-body connection" are being applied including hypnosis, relaxation techniques, focus psychotherapy and biofeedback. I make peace with this notion, under this condition — that the people who claim to benefit from stress reduction are also quite observably triggered by stress, as well. It is believed by psychodermatologists (and they point to sound clinical studies as evidence) that somewhere between 30 and 80 percent of flakers flare as a result of known stress "conditions" (including death of a loved one or loss of a job).

Are we likely to be significantly de-flaked if we focus our attention on reducing our stress? I’ve not heard about a single flaker healing him- or herself through psychodermatology. Nor through drugs — OTC or prescription — aimed at reducing stress. Furthermore, it has occurred to me that those people who claim to control their stress level don’t appear to lead very stressful lives in the first place. (However, one of the slippery things about trying to concretize stress is the consideration that some people are "more sensitive" to it than others.)

Let me sum-up my attitude about stress in early 2008: Would I feel better if I could shed my stress? I don’t really know. I don't know what being stress-free might be like. As long as I am alive and responsible for myself (and others) I am stressed — sometimes a little, other times a lot. When I’m flaking I’m stressed more, no doubt. But it’s two sides of the same coin. Between active psoriasis and stress, which causes the other? I find even trying to consider the question too stressful.

●

Contents of Flake: Confessions...