Monday, May 3, 2010
Wow. So much has happened since I last posted, I scarcely know where to begin.
Lets see... The lymphoma is back, and after only six weeks out of chemo. That means a self donor transplant is out of the question. A donor transplant is still viable, but it’s not an option because once disability kicks in (and I am now told its assured) I will lose all my insurance because I will basically “earn” too much. A donor transplant will mean anti-rejection drugs for the rest of my life (and no real guarantee it’d be any longer at that) which I wont be able to afford because I wont be “earning” enough to cover them without insurance.
I now fully grasp the meaning of a “Catch 22.” :)
So... One alternative left; a drug called Vorinostat, which has yet to be proved against my type of lymphoma. If it works at all, then the best I can hope for is to slow things down (add a few more quarters to the meter) and if it doesn’t work, no harm no foul. It’s a milder form of chemotherapy, taken as a pill, and has side effects of its own, but with the exception of one concern, they should be generally easier to handle.
I had a painful opportunity to contrast and compare doctors yet again last week. As a consequence of my insurance, I am compelled to retain a primary care physician, (PCP) and if I didn’t have one, I would be assigned to a general practitioner. Mine turned out to be a fellow with whom, on the two times I met him, I bumped heads. The first time was our initial meeting, and he pretty much gave up on the full physical because either the chemo, or the cancer, affected his observations.
Fine, I understand that easy enough. What I didnt get was telling him how hard it was to find meaningful, relevant information with Google because of all the personal pages being indexed on a given subject; that I had to discard the first fifty hits or so as useless until I wound my way down to the professional papers. He then told me to take anything I find with a grain of salt because “anyone can get on a computer and post something.”
Um, didnt I just say that to him?
I took it as an indication that he wasnt really listening to me. Whatever. It’s not the first time that’s ever happened.
I discovered that all the pre-authorizations Doc has to submit for drugs and tests and such all have to first be approved by my PCP- the guy who doesnt listen- so I got it in my head that I’d make an appointment so he can see and document what all has declined since our first visit. The rashes on my skin, the weight loss, etc. I figured he’d have a better understanding of why so much was coming to him for approval all of a sudden.
Apparently I couldnt have been any more stupid.
During the recent scramble to find a medication that would last longer than the dilaudid, and be pre-approved, (The 3 day patches were denied, presumably due to cost) the PCP prescribed methadone. Fine by me, as long as it worked.
I’d been taking it for a couple of days when it came time for my appointment, and his first comments were about dosages, and how he would let me adjust accordingly, and so on. Again, reasonable discourse. But then he hits me up with something called a pain contract, telling me no doctor would prescribe narcotics without the patient signing one.
As he’s telling me about it, I found myself getting annoyed, and I told him I resented the concept. I certainly have no intention of selling the stuff, and by the way the contract was worded, I was very much concerned that it would preclude Doc from administering his treatments for the cancer. When I asked him what would happen if I didnt sign the contract, I was told “Well, I dont have to prescribe the medication.”
I admit my tact failed me at that point. Something in his tone bothered me.
“Wait. Wait a minute. Was that a threat? Because that’s how it came across,” I said. “I want to be sure I heard you correctly.”
He folded his hands, took a few deep breaths, then gathered up his notes and excused himself to leave. “I’ll be right back,” he said. “Stay here and I’ll be back in a few minutes.”
I’m thinking I pissed him off or something and he’s gonna go collect himself. Figures. I have that effect on people sometimes. Too blunt, me.
He comes back an hour later with a clinic administrator in tow. That man leaned against the wall and stared at me the whole time.
“I brought him to answer any questions you have,” the PCP said. While he was gone, I had read the contract and it literally said that while under the PCP’s care, I wouldnt seek out prescriptions from any other doctor, nor make appointments with any other doctor, etc. and to do so would terminate my association with his clinic.
Pretty much exactly what I was afraid of, in other words.
So I told the PCP I only had one question. “If I decline the contract, you dont write any prescriptions at all, right?”
“Well, yes.”
“Okay. Then I decline the contract.”
“Oh, um, okay.” he said.
“Do you know why I made this appointment in the first place?” I asked.
“For the dizziness?”
“No,” I said, slowly. “It was so you could document how much I’ve declined so you’d have a better understanding why so many pre-authorizations were suddenly being submitted.”
“Yeah. Alright. That’s fine,” he said, and gathered up his notes.
I watched him do that and I asked, “So, are we done then?”
He said yes, and I picked up my shit and left. So much for documentation.
Worse yet, I found out after the fact that he never checked with Doc to see if methadone would interfere with anything Doc had given me, or with the chemo, etc. WFT?!
I get that the PCP sees a lot of people, and that a significant majority of those people are low income and thus possibly more likely to abuse the drugs, (sorry for the profiling, but it’s statistically true) either by selling them or by taking them, so yeah, a contract like that would be important, but what I dont get is why the rest of my “care” isn’t important, apparently.
According to my conversation with the insurance company directly, I’ll likely be “termed” meaning they will dump my ass entirely. I cant say as I care too much, but I feel sorry for whomever takes my place. Hopefully they only have a boil that needs to be lanced, or something equally easy.
The bright note is that when all is said and done, when the insurance is gone and I’m left to my own devices, I won’t mind so much. It’ll be worth it to not have to deal with corporations, industries, and governments all who promise aid and turn out instead to offer it at such a high cost that even basic dignity is squashed.
I don’t think I’ll mind closing that last door forever. Let ‘em knock elsewhere. I aint buying anymore.
Patric
Addendum: I just got a call from Doc’s office and the experimental drug Vorinostat, has been approved. Now I wait for the specialty pharmacy in Pittsburgh to call me and set up delivery. Whoo Hoo!
Also, based on the comments I’ve received, let me clarify: The insurance company has been helping me find another PCP who will work more closely with myself, and Doc, regarding the cancer treatment. It’s probably standard for them, but they make me *feel* like they are going out of their way to expedite this, and that is a GOOD thing. :)
Thank you all for your concern and support!