Drug Dealers

March 6, 2007 at 3:20 pm (Uncategorized)

For the past several weeks, I have been shooting up. Here’s how it works. On Monday mornings, I pad down to the refrigerator, take out a vial of clear liquid, find a quiet spot away from the ever-observant eyes of my three-year-old, swab an area on my thigh with an alcohol pad, jam a syringe into my leg at a forty-five degree, slowly push the liquid into my leg – even though it burns and I have to fight my instinct to pull out the needle – and then drop the needle into the sharps container on my bathroom sink. It’s all so very hard core.

My new habit isn’t a cheap one. A month’s supply cost over $1,500 – or about $375 per dose. My hunch is that it would be more economical to inject heroin or crack cocaine or even liquid platinum for that matter. Unfortunately, even though injectables from the opiate family might make me feel better about my illness and the havoc it is wreaking on my joints, they likely won’t actually stop the inflammation that is causing all of my problems. So, for the time being, I’m sticking with (no pun intended) my Enbrel.

Unfortunately, PharmaCare, our prescription drug insurer, is less enamored with Enbrel than either my doctors or I. In fact, I found out today that PharmaCare will definitely not cover any of the medication’s prohibitive costs. Nor will the state agency responsible for overseeing PharmaCare and other insurance plans, force the company to review its ruling. This means that if I want to take the drug, I have to pay for it. Luckily, Amgen Pharmaceuticals, the company that manufactures Enbrel, offers a patient assistance program that will knock a couple of hundred bucks off the out of pocket expense. This means the drug will cost us only about $1,200 per month.

PharmaCare, in its infinite wisdom, has determined that since Enbrel is FDA-approved only for rheumatoid arthritis, juvenile rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and plaque psoriasis, and is just used “off-label” for sarcoidosis and other auto-immune diseases, then prescribing the drug for sarcoidosis is an “investigative” use – and hence one they don’t have to pay for. It doesn’t matter that three doctors, one of whom is an M.D./Ph.D. specializing in sarcoidosis, have written testimonials on my behalf declaring that Enbrel represents my best shot at living a normal life and halting sarcoidosis’ steady progression through my body. I could have every doctor in the American Medical Association deluge PharmaCare with letters. It wouldn’t matter – because some bureaucrat, sitting in a cubicle under flickering fluorescent lights and chewing on a pencil before tucking it behind her ear, has typed my disease and Enbrel into some database and the computer has responded with the message, “NOT APPROVED.” God could come down and bellow in the bureaucrat’s ear. But God doesn’t make decisions for PharmaCare; the bureaucrat and the computer are their own divinity. And they hath spoken. NOT APPROVED.

I know that I am not alone in this situation. Having an insurance company or a prescription drug plan deny needed medications or treatments is so common these days that it’s becoming cliche. This doesn’t leave me feeling any less angry or powerless. Instead, I feel like PharmaCare is rubbing dirt in my face, or perhaps salt in my wounds. It’s bad enough to have a chronic, debilitating, and sometimes fatal disease; but it’s even worse to have this disease bankrupt you. Isn’t this precisely why we pay such exorbitant costs to have health insurance in the first place, so that we don’t have to choose between getting the medication we need and living hand to mouth?

I also know that I am lucky. This is the first major insurance obstacle I’ve encountered in nearly three years of illness. New West, my health insurance company, has paid for me to see specialists across the country and to have myriad exorbitantly expensive diagnostic tests performed. And, even if we now choose to subsume the out-of-pocket costs of Enbrel, we still have a safety net to catch us – some savings, as well as a heck of a lot of space on the old credit cards (and a host of extremely generous family members) – which is more than many other people have.

There are plenty of folks who will tell you that we in America have the best health care system in the world. I suppose we do if you are wealthy and can pay for whatever you want no matter the cost. Yes, if you are a Kuwaiti sheik with cancer, then you would likely jet off to the good ol’ US of A for treatment. But what about the rest of us? The Census Bureau estimates that there are 40 million uninsured Americans, including ten million children. These folks can’t even appeal to have their Enbrel paid for – or their chemotherapy, X-rays, strep tests, mammograms, or immunizations, for that matter. They simply have no insurance. It’s even more embarrassing as a citizen of this potentially great nation to realize that the problem doesn’t end there. According to Health Affairs, a policy journal, an additional sixteen million Americans between the ages of nineteen and sixty-four are underinsured, which means that they will forego needed medical care because of inadequate coverage.

I’m sure there numerous nits to pick with the figures I have cited above; I’m sure some of the uninsured are young, healthy people who choose to bank extra income rather than pay for health insurance. We can quibble down the numbers, but the truth remains that an astonishing number of people in this country lack access to basic health care. This realization makes me feel a whole lot less sorry for myself, but I’m still angry. And scared and worried about paying for Enbrel. There’s not much else we can do, though. “We’ll figure it out,” Jay has told me, as I rant and rave and curse the ground the loathsome PharmaCare employees tread. Beating my breast and complaining won’t change the reality of the health care system we inhabit. Yes, we will figure it out. But what about them? When will the bigwigs from Congress and the HMOs figure it out?


  1. rebecca said,

    Post-script: My lawyer husband tells me that there is technically one more round of appeals we’re going to go through with PharmaCare to try and get them to change their mind. His understanding, though, is that unless and until the FDA approves Embrel specifically for sarcoidosis, we’ll end up back in the same place.

  2. MsDale said,

    I hope you look into other options before believing the declaration of doctors that “Enbrel represents my best shot at living a normal life and halting sarcoidosis’ steady progression through my body.”

    Please read at marshallprotocol.com

    Having done this new and proven Sarcoidosis treatment myself with HUGE beneficial results – I send this in sincerity and friendship.
    Ms Dale

    (P.S. The FDA has approved two of the drugs used in the Marshall Protocol and others are pending approval – so no insurance problems there!)

  3. JRFoutin said,

    I have Sarcoidosis too. I understand exactly what you are going through with insurance challenges, having seen many with similar insurance battles (and fought a few myself). It might be helpful to know that even the old standard for Sarc — Prednisone — is off label! Off label is legal, and it is the only way for those with Sarc to be treated with pretty much anything right now. However, unless the treatment is Prednisone then it just isn’t covered by a lot of insurance companies.

    You might also want to know that the 2003 ACCESS study (the largest study on Sarcoidosis ever undertaken by the NIH/NHLBI) uncovered the fact that nobody on Prednisone got well, and that nobody had a spontaneous remission from this disease. Remember also, that other immunosuppressants (Embrel is one) can only hope to do a little more of the same as Prednisone. It is designed to shut down your immune system so it –seems– your problem is gone… for a while.

    When you are ready, you may want to look into enabling your immune system. It is the one fighting chance for survival, and the high price of palliation will tax your system more than the current monthly out of pocket expense. Enabling your immune system is also the least expensive way to win against the real enemy — Sarcoidosis. You can see me in the success thread on the MarshallProtocol-dotcom site, and you can read what others reported in 2006 about their recovery process at http://autoimmunityresearch.org/transcripts/recovery_lax2006.pdf

    I also spent much time over the last year with the FDA and with other “big wigs” to help pave a way for moms and others who want to live to see their children grow up. It may take many more of us and working with national legislation too, so it is good you are blogging about your situation. I encourage you to continue.

    Best to you–JRFoutin

  4. Paul said,


    i’m not trying to tell you what to do so don’t get me wrong.

    I’ve just started the treatment (like last week!!) which MsDale and JR have described. It’s not for everyone – there are some hard times on the road to a cure, but it is certainly worth a look.

    My decision was based on a couple of things:
    * There is no quick fix
    * The drugs on this protocol are a lot less harmful than the other drugs I’d been taking (pred, methotrexate…..)
    * I want to get well not just use band aids

    I also reached a time when my family was able to support me through this treatment.

    please have a read of the website – If you have any questions ask them there or feel free to send me an email.


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