It's time for truth, not "truthiness."

Heard the Word of Blog?

Friday, August 25, 2006

Beep is in medical trouble...SINGLE PAYER NOW, DAMMIT!

This is something I got emailed to me by my friend Beep, who sometimes posts here. She's hit the "doughnut hole" on her Lupus meds and she can't afford them. She might have to get involved in a study and take the chance of *not* getting the meds she needs if she's put in the control group (placebo group).

Californians need to pressure their Senators and Assembly people to pass SB840, although there is a very strong chance that Herr Gropenfuhrer will veto the bill if it gets to his desk. That's why we need to also make sure Phil Angelides gets elected this November too. There IS a difference between him and Ah-nuld "Pretend to care" Schwarzenegger. This is one of them.

Anyway, here's Beep's message.

Dear friends,

If an anvil falls on my head tomorrow, I want to go to the great
beyond knowing that before I kicked the bucket I told someone that I
think Medicare Part D is the drug plan from hell.

I'm on the plan because people who have both Medicare and Medicaid
were switched to it this year involuntarily, and I am one of those

And in one way I benefit from Medicare Part D, at least for the
moment. Medicaid slapped me with an over $400 per month monthly
deductible this year on a technicality (doesn't sound like much I
know, except when you know that it's about half my monthly income,
if I try to increase that income, I run into even more bad
technicalities that make me worse off). Medicare Part D at least is
allowing me to get my medicines without paying that deductible every
single month, as Medicaid would have made me do.

Although my "free" coverage on Medicare Part D could die next year
with another automatic Social Security cost of living increase, and
medication copays could end up being more than my total income, so
not going to go around singing psalms to the gods of Medicare Part D
just yet. Still, I'm very grateful for the coverage of the moment.
take 11 medications, some of which are very expensive.

I have asked my represetatives why people like me, on the SSDI
disability program for people who worked and paid into Social
Security, are not protected from harmful Medicaid-related effects of
these automatic cost-of living increases, while people on SSI, the
disability program for people who did NOT pay into the Social
system, are protected from these effects by a special law. I have
received no good answer, nor found anyone interested in sponsoring
legislation to change this. But that is another story.

Today I learned that my lupus treatment isn't going so great and my
doctor wants me on a biological agent called rituxan. His reasons
this change of treatment in my case are good ones and I agree with

Yes, I'm a little scared of the side effects:

But I'm hopeful that this medicine will help me and may end up being
lot better than the stuff I am taking right now:

However, it seems I have no way to get this medication. It is very
expensive. I won't go into the ethics of drug prices in the US...but
I know there are patient assistance programs offered by drug
now for many drugs. I'm not sure if there is one for rituxan. But
that may not matter, as it seems many drug companies have pulled the
access to their patient assistance programs for Medicare Part D
patients. The drug companies were told it may be ILLEGAL to offer
this assistance to Medicare Part D patients!

It seems this has something to do with the "doughnut hole", the part
of Medicare Part D that someone who must be on crack put into the
plan, the gist of which gives participants a huge gap in coverage.
Once they hit a fairly low "maximum", they have to pay all of their
own drug costs till they hit a ceiling beyond which the plan will
in again. I will have to deal with this evil "doughnut from the
nether region kitchens" myself if I get too much more involuntary
income from Social Security cost of living increases. For me, and
people like me, it is life-threatening, since there is no way at all
can pay for my meds on my income. I try to make light of this
situation, but it's not really very funny. Anyway, it seems there
a potential legal problem if a drug company helped patients who were
in the process of paying for their costly doughnut. I'm guessing
I could be wrong) it was just simpler for some drug companies to
exclude Part D folks from their assistance programs rather than risk
any legal hassle.

I think this is crazy. I think the plan is crazy. I think punishing
seniors with a penalty if they didn't sign up right away for the plan
is crazy. I think the doughnut hole is crazy. I think the huge jump
from "special help" to "huge copays" if you end up with one extra
dollar of income is crazy. I think Social Security forcing cost of
living increases on me that are allowed to potentially kill me by
taking my coverage eligibility away is crazy. I think my being
totally unable to get a medication my doctor says I need is crazy.

So my doctor is advising me to take the only option I have: to enroll
in a research study. The disadvantages are that I will have to go to
Los Angeles in my old car all the time, and when that car is worn to
the ground I have no way to replace it. Also gas ain't cheap. It's
also exhausting for me to drive there, as it is far away. And, I
might be one of the patients who gets the placebo instead of the

The advantages are that I at least have a shot at getting the
("do you feel lucky, punk?"), and also in helping people of the
by participating in the research. Also, they may give all
participants some of the medicine at the end of the trial.

So if they decide I qualify, I'll be doing this next year, because
just not doing well on my current treatment and I have to try what is
available for me to try.

But I want someone to know this is all crazy, and I also believe
stress like this is bad for anyone, let alone sick people.

Please feel free to share my story with anyone if you think it might
do some good anywhere.