August 21, 2001
Senator Susan Collins
Senator Olympia J. Snowe
Senator Mary L. Landrieu
Senator Maria Cantwell
Senator Jean Carnahan
Senator Debbie Stabenow
Senator Hillary Rodham Clinton
Senator Patty Murray
Senator Barbara A. Mikulski
Senator Kay Bailey Hutchison
Senator Blanche Lincoln
Senator Diane Feinstein
Senator Barbara Boxer
112 Hart Senate Office Building
Washington, D.C. 20510
Dear Honorable Senator Barbara Boxer,
I saw you and eleven of the other female senators on the Larry
King Show a few weeks back and thought that the power of all of you
female senators together may be able to help us. So I am writing this
same letter to all of you on behalf of the 30 to 40 million
chronic pain patients in our country today.
It doesn't even matter what our diagnoses are as pain is what we
live with everyday, high levels of continuous chronic intractable
pain. According to many credible sources, the term chronic pain
refers to a person having continuous intractable pain for a minimum
of five months. Medline, a website devoted to medical issues of all
kinds, defines chronic pain as: "a condition that is continuous or
persistent over an extended period of time. a chronic condition is
one that is long-standing and not easily or quickly resolved."
In an effort to help you understand what chronic pain is like, I
want you to think about having a toothache that continues day after
day as the dentist tells you there is nothing that can be done to fix
it and that you'll just have to live with it.
What would you do?
I want you to think about being in child bearing labor pains day
after day and your doctor keeps telling you it's all in your mind or
you're just going through a crisis and once you've figure out how to
resolve it the pain will go away.
What would you do?
I want you to think about after having had back surgery to relieve
your pain, the pain persists, but the doctor keeps telling you that
you shouldn't be having any pain at all as the surgery fixed it.
What would you do?
This is what we, chronic pain patients, go though every day of our
lives and more; this is what chronic pain feels like.
The reason I am contacting you and the rest of the female senators
is that chronic pain patients in this country have become
increasingly disturbed and frightened by the government's position
and continued restriction of a classification of lifesaving
medications called opioids that we must take in order to have any
quality of life. In particular, is the recent focus regarding the
prescribing of the drug Oxycontin, manufactured by Purdue Pharma.
This drug is taken by many of us, without consequence, to control our
pain.
Yes, there are a few people who take our lifesaving medications
and abuse them, but according to all of the reports, that were only a
few hundred, while we chronic pain patients are in the millions.
Also, according to the coroner's reports, the people who died from
inappropriately ingesting this drug were also taking other drugs with
it, including alcohol. To punish the chronic pain patient by
continuing to restrict our access to this drug and other opiates
creates in the chronic pain patient and in our doctors, fear that is
not only unnecessary, but also cruel.
Yes we take high levels of opiates including other drugs
consistent with our diagnoses. We can take these high levels of
opiates as our doctors increase our dosages slowly over long periods
of time, which is medically termed "titration." We do build a
tolerance to the opiate, which requires increasing our dosages slowly
until we reach the point where our pain is controlled. With the
chronic pain patient, our levels of pain often go up and down
depending on our lifestyles and diagnoses.
Research such as that reported in the April 5th issue of the
Journal of the American Medical Association (JAMA) validates that, high levels of opiates titrated
appropriately, do not hurt us in anyway physically. In fact opiates
are among the safest drugs on the market today in regard to the
affects on our body systems. Opiates do no tissue damage to the body
at all unlike many other prescriptions and over the counter drugs.
According to another article also published in the journal of the
American Medical Association, more than 100,000 Americans die every
year from bad reactions to FDA-approved drugs. Researchers from a
Toronto study stated: "serious adverse drug reactions are frequent
... more so than generally recognized. Fatal adverse drug reactions
to prescribed and over the counter drugs appear to be between the
fourth and sixth leading cause of death."
If someone looked at a chronic pain patient's pharmacy records, it
does look like we take huge amounts of opiates, but because of the
slow increases in our dosages, we don't overdose, nor do we get
"high" or feel "euphoric." Only our pain levels drop to the point
where we can have a decent quality of life and in some cases, we can
even return to work.
Some of us have been told by our government that since we are
taking such high levels of opiates we would overdose and die, and
therefore we must be selling them. This attitude is just wrong, as
any true chronic pain patient wouldn't think of giving up their
medications and it is a misunderstanding of the concept of titration.
Yes, anyone taking the levels of opiates we take, without slowly
increasing the dosage, would die.
Also, there are many other categories of non-opiate drugs such as
antidepressants, tranquillizers, blood pressure medications, insulin,
Ritalin and antipsychotics to name just a few, that all require
slowly increasing or decreasing the dosage. Depending on how long you
have been on, for example, an antidepressant you can't just stop
taking it; you have to have your dosage decreased slowly or
withdrawal symptoms will appear. In fact there is a recent lawsuit
filed by Nguyen & Farber against the SmithKline Beecham
Corporation states that "antidepressant drugs, including selective
serotonin reuptake inhibitors 'SSRI' such as Paxil, are similarly
hazardous, even more so in many instances. Medical risk taking of
this nature would be acceptable if the habit-forming nature of Paxil
were fully divulged to physician and patient prior to selection of
Paxil.
But it is not. Serious habit forming characteristics are formed,
and the Paxil patient is unable to wean himself/herself off the drug
after therapeutic use is no longer needed. Physical and psychological
dependency on Paxil is the result. Withdrawal problems of many
varieties occur. When withdrawal problems arise, the patient often
feels entrapped, in despair, and desolate. Hope fades. Addiction
worsens. Even "suicide occurs." Several years ago opiate prescribing
was very different in our country. The following is what has happened
since, due to our government's actions:
1. Opiates cannot be refilled. This means we must see our doctors
at least once a month to get our prescriptions.
For many of us this means we cannot work, as employers won't let
us off either a morning or afternoon once a month to see our doctors
and often we have to search for a pharmacy that stocks our drugs.
Many pharmacies have stopped stocking these medications out of the
same fears the doctors have or fear they will be robbed.
2. If the pharmacy doesn't have the number of pills prescribed by
our doctors, we are just shorted. This means if our doctors
prescribed 60 and the pharmacy only has 40, we can't get the
remainder when the pharmacy reorders. We are just stuck with the
amount. This doesn't happen with any other drug category as in those
cases, pharmacies will either contact you when the remainders are in,
or they mail them to you.
With the controversy over Oxycontin, our government is proposing
the following even more restrictive approaches:
1. Fingerprinting chronic pain patients. This takes away our
dignity and respect and that if it happened to any other patient
taking any other kind of drug, you would hear screaming from all
quarters of the country.
2. Restricting the prescribing of Oxycontin to only the 4,000 pain
specialists in the country. See the attached USA Today article dated June 20th 2001,
titled "DEA Goal:
Protect the People," and the rebuttal commentary article also from
that issue. Since there are 30 to 40 million chronic pain
patients in this country today, where does that leave the poor pain
patient or the rural pain patient? Pain specialists are expensive and
neither Medicare nor Medicaid will pay for these doctors. Because of
this, we, chronic pain patients, usually end up in financial disaster
due to our inability to work and some of us do not have someone who
could support us financially. It is also difficult to prove to social
security disability that pain in and of itself is debilitating so we
are denied the benefits we so badly need.
3. Our government is sending in undercover agents to doctors who
are trying to help us in an effort to catch them prescribing to non
pain patients. This has so frightened our physicians so much, that in
many cases they have stopped prescribing our lifesaving medications.
Physicians all over this great land of ours are losing their licenses
or worse being prosecuted. As pain is subjective, how can a physician
truly know if someone is faking it or not? Our doctors take many
precautions to weed out these types of people, but sometimes they
slip through. Should our physicians be punished for this? Just one
example of many is Dr. Joan Lewis of Albuquerque New Mexico who has
now lost her license and is pending prosecution solely for helping
pain patients. Her story can be found in the Albuquerque Tribune
issue of July 5th 2001, titled "Pain Relief On Trial." There are
several supportive letters in the article from her patients who feel
she brought them back to the living. I have included a copy of the
article for your review. There are many other similar situations that
make every other doctor fear treating us. Pharmacists often face the
same scrutiny.
Our physicians often tell us that pain doesn't kill. Tell that to
Barry Levin, the famous attorney or the wife of former Germany's
Chancellor, Helmut Kohl who suffered from chronic intractable pain
and who both recently committed suicide. There are many stories about
ordinary people, not famous, who have decided they can't take the
daily high levels of chronic pain and have ended their own suffering.
Research indicates that at least one-third of under medicated or
non-medicated chronic pain patients commit suicide.
We are also told that these medications are "highly addictive" and
say they are bad for us. According to a National Institute of Health
(NIH) study, it was determined that only 7 out of 24,000 of chronic
pain patients studied, showed any signs of addictive behavior. Let me
state that again, only 7 out of 24,000.
Aside from this study, NIH also stated that 17,000 people die each
year from complications from all the nonsteroidal anti-inflammatory
medications. They literally bleed to death. Even the commercials on
television that talk about drugs like Celbrex and Vioxx state that.
Where is the balance here?
Research such as that reported in the April 5th issue of the
Journal of the American Medical Association (JAMA) validates that
high levels of opiates titrated appropriately, do not hurt us in
anyway physically. In fact opiates are among the safest drugs on the
market today in regard to the affects on our body systems. Opiates do
not cause tissue damage to the body, unlike many other prescriptions
and over the counter drugs.
It's important for you to know, that even though I take high
levels of opiates plus other drugs that assist in lowering my pain
level, I'm neither "high" nor "euphoric." It's important that you
know that chronic pain patients are normal looking people. We do not
look like addicts with eyes glazed over and our chins on our chests,
nodding out from overdosing on opiates that are intended to relieve
our suffering.
Even though these levels of opiates do not have the same effect on
us as they do on addicts, again because of the slow increasing of our
medication. We are dependent on our drugs and would suffer a physical
withdrawal if we were suddenly cut off from them and due to our
government's actions, many have been cut off and have gone through
withdrawal unnecessarily or they have chosen to end their lives to
prevent withdrawal and return to level of pain that are intolerable.
Chronic pain patients don't suffer both a physical and a
psychological withdrawal that an addict would if suddenly cut off
from their supply. We also don't have "drug-seeking" behavior. We
don't go to multiple doctors for the same prescription and we don't
"crave" increasing amounts of drugs like an addict would. Our pain
level just increases when we build a tolerance to our opiates. It is
true that often the chronic pain patient must see anywhere from 5
to 10 doctors trying to find one who will help us, but that is
not the same as an addict what an addict would do. We also take as
few opiates as possible and even then our pain is never fully
relieved, it just drops our level of pain to where can tolerate it.
An addict wouldn't do that.
Chronic pain patients also have what is known as "flare-ups" or
times that the opiate doesn't fully keep our pain level at this
tolerable level. For this we are given, by our physicians, what are
called "break-though medications" that may also be opiates, which
again, bring our pain levels back down to tolerable. When the
flare-up is over, we stop taking the break-through medications. An
addict wouldn't do that. They would take as much as they could to
achieve their high.
We also use other approaches to decrease our pain so that we are
not so dependent on just opiates or other drugs. Many of us, if
appropriate, use approaches such as biofeedback, massage therapy,
chiropractic, stretching exercises and non-weight bearing swimming to
name just a few. We do everything we can to reduce our need for
opiates. An addict wouldn't do that.
There are ways of separating the addict from the true chronic pain
patient and in many states, but not all, there are controls in place
that monitor what drugs and what doctors we see. In these states,
pharmacies are connected to computers at the state level so that if
we were seeing multiple doctors for the same prescription, we would
be caught and possibly prosecuted. This should be the standard
throughout the country.
Chronic pain patients also would not mind being registered so that
our treatment isn't interfered with and we can continue our lives
without living in constant fear that we will be labeled or mistaken
for addicts, which often, we are. We are just trying to relieve our
pain, that's all. We have no desire to get "high," just enjoy life as
everybody else does.
If the government continues with this approach in trying to
control how much medication we can take and who we can see to get
them, there will, come a time, not might, when many of us will come
to a crossroad. One path would lead to going through withdrawal and
returning to levels of pain that are unbearable, or the other path
that would lead to ending our suffering in the way that will take us
out of this life and to a world we hope will not be filled with the
pain we currently endure.
This approach by our government also affects our spirits and
leaves us feeling hopeless, helpless and exhausted.
Please help us in anyway you can so that we, the chronic pain
patients of this country, won't have to come to that crossroad. We
pray we will never have to make that decision.
Sincerely,
Judy Hall
