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When Things Seem to go from Bad to Worse…
By Linda Lang
This past winter I had to go into the office everyday. No
longer did I have the luxury of working at home, which afforded
me the opportunity to work around my pain, lie down when necessary,
and work without constant interruptions. The office is very
large and I found myself walking a great deal. I came home
exhausted and my pain level skyrocketed. Although I enjoyed
working outside the house and interacting with others, I had
to do something to make it work better
My doctor suggested an intrathecal pump because I was on
very high doses of opiates. My digestion was a mess and although
my endocrinologist felt the CRPS/RSD was causing the peristaltic
movement to have slowed tremendously, I believed that the
opiates had something to do with it. With the pump, I could
theoretically take far lower doses of pain medications and
receive better results.
After a great deal of thought, I decided to go ahead with
the trial and I even became guardedly optimistic that this
procedure could make a big difference in my life. Three days
after the surgery I did feel better. I wasn't entirely sure
if it was the medication or the fact that I had been lying
in bed and had no responsibilities. The doctor sent me home
a day earlier than planned; I felt well enough, so I wasn't
concerned that my home health aide would not start until the
next day.
That evening I started feeling nauseous and dizzy. I began
projectile vomiting and the world was spinning around me.
I literally felt like I was going to die. I could no longer
think- it never occurred to me to call for help or an ambulance.
The next morning, my health aide got me to the doctor, where
I was put on IV and sent by ambulette the two blocks to the
hospital. It was very frightening. No one knew I was in the
hospital and I did not have the wherewithal to have the phone
turned on or even to ask the nurse to call my family. My heart
rate was dangerously low and I was hooked up to machines.
My body began to clench violently and the pain was unbearable.
It took several days to calm down. In the meantime, the doctor
had decreased the flow of medication from the pump. She insisted
that a bug that I probably had picked up during my first hospital
stay triggered the severe illness; however, I associated the
event with the pump itself. Maybe if I hadn't been so worn
out physically I would have made a different decision, but
as it was I had to rely on my instinct and my instinct said
to stop the trial. So the pump was removed and I went home.
Although it has been almost six months since the incident,
I still feel much weaker than I did before. I also find that
I have a kind of Post Traumatic Stress Syndrome; I relive
the events of that awful 24-hour period as if they were happening
all over again.
I had allowed myself to hope that the pump would make my
life better. I was becoming depressed and I was feeling very
sorry for myself. Although I know research is ongoing, I did
not see anything on the immediate horizon that could change
my situation. Most people have their own way of extricating
themselves from the blues; for me, it is tackling a large
project that might make a difference in the lives of others.
In the next calamity, I found my cause.
New HMO, New Battles
Since Healthnet bought Guardian, my health insurance company,
I have been involved in a weeks-long battle to get OxyContin®,
which I use to manage my pain. Healthnet's drug provider has,
to date, told me the following regarding my prescription:
1. They never received my prescription.
2. Once they found the prescription, the pharmacist could
not read the doctor's handwriting and I should have her call
immediately.
3. The doctor called, and after bouncing her around for an
hour said they had no idea why the prescription hadn't been
filled.
4. When I called again, they told me it would take another
week and I would have the meds. I explained at that point
I would be out of medication. Healthnet suggested that I get
the doctor to give me some. Well, OxyContin is not something
that doctors give away.
I looked at the Healthnet site and discovered that OxyContin
was on a pre-approval list. I tried to log on to see how to
get "pre-approval," but I didn't have a password;
Healthnet, would have to send it through the mail. Another
week went by before that happened. I sent e-mails explaining
the problem and asked for a pre-authorization form. A week
later the form arrived without any explanation as to why I
was having so much trouble getting my prescriptions filled,
even the ones that did not require pre-authorization. Of course,
by this time I had been without OxyContin for weeks and I
was in bad shape. It had been over a month since I had ordered
the drugs.
Does Pre-Authorization Mean No Authorization?
Meanwhile, I had gone on the Internet to find out more about
this pre-authorization process. It seemed that just about
any non-generic drug on Healthnet's list required pre-authorization.
So I decided that it was mainly about money; in actuality,
pre-authorization clauses in medical insurance provider contracts
allow a health insurance company to over-ride the medical
decision of the physician.
For example, Pacific Care's (a medical insurance provider)
contract section on Pre-authorization for Selected Drugs states:
"Selected medications require a member to go through
a pre-authorization process using criteria based upon FDA
indications or medical findings and the current availability
of the medication. Pacific Care reviews requests for these
selected medications to ensure that they are Medically Necessary,
being prescribed according to treatment guidelines consistent
with standard professional practice, and are not otherwise
excluded from coverage." The problem is that there is
no definition of what is medically necessary.
The American Medical Association (AMA) and the Florida Medical
Association composed a letter to Aetna/US Healthcare in 2002,
stating, "The definition of "covered services"
and "medically necessary" give Aetna the final authority
to determine whether a service is "medically necessary"
and consequently, on whether it is "covered," regardless
of whether the service would be considered "medically
necessary" under accepted standards of medical care.
By inextricably intertwining "coverage" decisions
and "medical necessity" decisions, Aetna is giving
itself the ultimate power to supersede a physician's determination
regarding the necessity of medical service and to deny even
clearly needed medical care." The passage of the new
Employee Retirement Income Security Act (ERISA) bill gives
them the same degree of power over drug prescriptions.
Some states require pre-authorization when an individual needs
to fill more than a certain number of prescriptions per month.
This hits hard those of us with severe chronic health problems.
The state of North Dakota requires pre-authorization for all
brand name drugs. In Maryland, even if a patient is allergic
to all generic drug alternatives, the brand name drug will
still not be dispensed. The situation must be life-threatening,
result in hospitalization or severe disability, or require
intervention to prevent further damage or impairment. Of course,
by the time the appeals process is followed, the patient could
die.
As the cost of prescription drugs continues to grow, we can
expect the government to pass more ERISA bills that limit
their availability in order to stem the rapid increase in
Medicare spending. It is working. Drug expenditures actually
decreased 14.9% this year. Consumer groups feel this may be
as much from patients just giving up in their losing battles
to gain the drugs they need as much as from the fact that
generic drugs save money.
Those of us with CRPS/RSD can not remain silent over this
issue. When I went to the New York State site for consumer
complaints against insurance providers, there were only 67
complaints relating to medication. Are we so beaten down that
we cannot speak out for ourselves?
I know that I can't be the only one having difficulty getting
prescriptions filled. To this date I still do not have my
OxyContin and I have yet to receive pre-authorization for
Actiq®. Despite the fact that pain has been declared the
fifth vital sign, insurers have the final power to deny pain
medications or procedures that may help limit pain. If I can
gather enough credible evidence that others are having the
same kinds of experiences that I am having, we might be able
to make a difference. If you are having problems obtaining
your medications, please send a brief email to me with the
medication name, manufacturer, insurance company and the problem.
I promise to follow through and notify everyone who can make
a difference. This pertains directly to your quality of life,
so please take the few necessary moments to respond. At the
same time you will help me to feel more optimistic. |
