ironic

i've tackled the quandary of my health insurance "issues" in previous postings, and for those of you that have kept up to date on the continuing saga, you will find this ironic. (that is, of course, if by "ironic" you realize that i mean "yet-another-example-of-the-lack-of-urgency-and-follow-through-in-government-programs.")

a quick recap. since i stopped working at Arnold due to disability, i am automatically given an extension of coverage from my existing health insurance through Cobra (at the bargain basement price of $536 a month.) since i have a chronic disease and no income, the state of PA provides me with health insurance free of charge (or at drastically reduced costs) through the Pennsylvania Access Card program (PAC.) PAC covers all of my medications except for one (Tysabri)- they require MS patients to use Copaxone. but they do give you the option of getting such exceptions "pre-authorized"- through the typical paperwork, doctor authorization, your right arm and signing away your unborn child. i enrolled in the PAC program in May, which is when we began the "pre-authorization" process on Tysabri. (key word- began.)

fast forward to present day. i am no longer taking Tysabri and therefore in the process of disbanding my ridiculously expensive Cobra insurance, opting for the PAC as my primary insurance. mom drops a letter in my lap this afternoon from the PA State Welfare Administration. puzzled, i ripped open the flap, and pulled out documentation that formally stated PAC would cover my Tysabri treatments from now on. isn't that nice of them? conveniently, one thousand, seven hundred and eighty dollars later, PA has decided they will now pick up the tab. for a treatment i am no longer having.

aaaauuuuuuuggggghhhhh. shaking my head, all i can do is laugh bitterly. do you have any idea how sick i get of dealing with this bullshit. hours, and hours, days and days of my blood, sweat, and tears. ok, dramatics are over. but this does create a segue into the Tysabri situation. right from the top, i'll admit it. i thought Tysabri was going to be my magic answer. in typical meg fashion, i never stopped to consider anything else- it was Tysabri all the way. in fact, i was making an ever-growing mental list of the all things i would be doing by the fall (um, now)- taking ballroom dance lessons, working out on the elliptical machine, searching out the local hiking trails, learning how to cook (not in a plastic pot), travel all over the country visiting friends, volunteering at the hospital, finish writing my book- maybe even drink red wine again (that might be pushing it). basically, i was planning on making up for the past 365 days of my life. unfortunately, as that list of "will do's" grew longer, so did my list of "can't do's."

it had been 7 months of Tysabri, and it was obvious that the treatments were not making much progress. there was no way in hell i was going to be the one to point that out. after all, maybe i was being too critical, too optimistic, or just too close to the situation. but it wasn't just me. after my recent flare and slow, but continuous, worsening of symptoms, my internist and neurologist strongly recommended stopping the treatments- they felt there were more appropriate, and aggressive, options available. they had been analyzing recent research on Tysabri's side effects, and believed the drug was aggravating my already sensitive GI system, and responsible for the daily migraines. in addition, the results showed significant percentages of symptoms that paralleled my increased degrees of discomfort- emerging joint pain, nausea, increased extremity pain, additional fatigue.

some of you might be wondering "didn't they have this information already? it's not like meg is the first person in the country to take this medication." you're partly right, we did have the basics. but Tysabri is still fairly new. it's only been on the market for two years, so more detailed and specific studies are just starting to surface. there is also a good possibility that my body developed positive antibodies to the drug (ironically, the exact same thing happened with Betaseron)- studies show that this is happens to approx. 6% of patients. but the formal test for antibodies can be expensive, and most insurances won't approve the charge- especially if an alternative is an available medication. (for once, i agree with them- i'm going off the drug regardless, so the confirmation isn't going to do me any good.)

i was given the option of four treatments to pursue:

1. rebif: 3x/week injection
2. copaxone: daily injection
3. clinical trial (oral medication): administered by the clinic's retired MS neurologist out of his hershey, pa office
4. monthly iv solu-medrol treatments (aka "steroid pulses"): 3-5 day iv treatment in the clinic to relieve inflammation

of course ultimately, the decision to cease Tysabri was up to me. emotionally, their recommendation was hard to swallow, but i have to have faith in my doctors. sharon (MS nurse practitioner- she has lots of other acronyms behind her name) and dr. weber (my new internist) have talked extensively about my case- sharing information they each have on my condition, are there better ways to handle treatment, etc. this is a rarity in health care. it seems obvious, right? of course doctors would consult one another about a shared patient. but trust me, it doesn't happen. i don't care how many papers you fill out, signing away permission for your GP to talk to your dermatologist, for your ophthalmologist to talk to your neurologist, and your podiatrist to talk to your gynecologist (i don't know why your foot doc and your gyno would need to talk, but you get the drift.)

so... where does this leave me? well, i have to wait 3 months for my body to purge any remnants of the Tysabri. in the meantime, i will have doses of IV solu-medrol from time to time, to get me through the coming weeks. at the moment, the winner is looking like.... .... copaxone! because it is not an interferon beta treatment, the "hangovers" won't be as debilitating. (technically, they are referred to as "flu-like symptoms". i call them "hangovers" because they literally feel like one- only without the scandalous, bar- hopping good time of the night before! totally not fair.) this is a key factor, since the injections are daily.

in addition, i will have monthly steroid pulses to supplement the copaxone. my thinking is this: the copaxone will be in charge of the future, and the steroid pulses can take care of the present. when you are faced with an illness, even your common cold, all you can think about is feeling better- now. you're not thinking about how many more colds you will have between now and when you're 94. the same is true with my MS. trust me, i get the gravity of the situation. but to be honest, the status of my future disability is soooooo far from my mind. by combining the two, i might be able to control the chronic symptoms and get on with my life- both now, and fifty years from now. (plug for MS Walk 08- if we get out there and raise more $$ next year, maybe i won't have to wait 20 years!)

but stay tuned. i've been known to be indecisive.