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Addiction is a Disease - by Barbara
Organ Transplants and Discrimination -
Notice to Victims of Discrimination from Organ Transplant Programs - Chris Kelly
Website Provides Information and Support -
Imagine waking up at the age of 38 and finding yourself in the grips of a narcotic addiction after many years of being a “normal” contributing member of society. How many of us believe addiction really is a disease? How many truly believe it can happen to them? I no more believed that I could have become a heroin addict than a serial killer, yet, it happened to me. And so, few of us truly believe a simple discovered fact, “addiction is a disease.”
I was given pain killers to treat a painful gall bladder disorder, in carte blanche quantity from doctor and pharmacy, multiplied by many years. Following my surgery, these suppliers cut off my prescription, and I was sent out into the world in a state of agonizing withdrawal. I had a monkey on my back the size of King Kong. Needless to say, my disease found its “source” as disease certainly knows no stigma rules. That source? Heroin. A Bethesda community member on heroin?
Methadone treatment is good for society. Whether you accept this fact or not, it still remains a fact. The statistics tell this story. Had methadone treatment not been available to me, I may be dead, imprisoned, or institutionalized today, leaving behind an orphan for society to raise. The ramifications aren’t only financial, but permanent, as the damage done to the emotional state of one single child leaves its marks all over society. Addiction within the family is serious business.
Prior to this “state” of addiction I found myself in, I too believed that methadone was merely “another band-aid fix to a problem that won’t go away.” I was under the misconception that the use of methadone was trading one drug for another. What I didn't know back then was that methadone has no high, no euphoria, no mood-altering effects. It's purpose is to feed the actual physical symptoms of withdrawal. I need to state this again: NO EUPHORIA. NO HIGH. NO MOOD-ALTERING EFFECTS. Perhaps if people understood this one simple fact, the stigma assigned to methadone might be viewed differently and the addicts in treatment could get on with being treated. Rather we spend years squabbling over its use, squabbling over whether to open a facility in this neighborhood or that, as the children of these addicts suffer, and society foots the bill for this worn out, beaten dead horse, debate.
I look forward to the day that this argument dies a death of finality. Meanwhile thousands of addicts with a DISEASE go untreated, and the effects to society trickle out and adversely affect the lives of hundreds of thousands.
Ask yourself this one question--do you believe you could wake up one day an addict? And if you did, would you seek treatment? How would you feel if it weren't available to you because your neighbors down the street had decided it wasn't a worthwhile treatment alternative for you? If you don't think this can happen to you, you'd better rethink. None of us are exempt from this insidious disease, as I found out it can happen at any age.
Editor’s Note: It is shocking that there are waiting lists for methadone maintenance treatment in some areas of the U.S. for patients willing (and able) to pay “out-of-pocket”, even though the treatment has been proven safe and effective in treating opiate addiction. This is apparently a combination of the NIMBY (not in my backyard) sentiment and overly-restrictive state regulations that make opening a clinic difficult or impossible. Clearly, at least some of the lack of access to treatment stems from the ignorance and misconceptions surrounding drug addiction and methadone maintenance treatment, as Barbara implies in her article above.
In a related issue, many states do not provide Medicaid coverage of methadone treatment. If we can change the public’s attitude regarding this treatment, perhaps more states will provide Medicaid coverage of it. As Barbara indicates, people need to understand that methadone treatment benefits society as a whole--not just opiate addicts.
It also appears that Medicaid coverage of methadone treatment benefits opiate addicts and methadone patients who are not on Medicaid. Medicaid coverage of methadone treatment increases the number of individuals willing and able to obtain treatment; in response, more methadone clinics are opened to accommodate this increased demand. The resulting competition between clinics sometimes improves the quality of treatment, reduces treatment cost, and potentially improves access to treatment as well.
As discussed in past issues of Methadone Today, many areas only have one or two clinics--this monopoly, or near monopoly, is a major problem, as such clinics often charge what they please and treat patients poorly since patients have little recourse. They either have to accept poor treatment, drop out of treatment, or drive huge distances to go to another clinic out of the area. If providing Medicaid coverage of methadone treatment results in the opening of even one or two additional clinics, the plight of all methadone patients may be improved by breaking the monopoly that exists in many areas.
Barbara is right on the mark--the general public needs to understand that methadone maintenance treatment is good for society as a whole. At this point, we doubt that most people see it that way. They are afraid of having a methadone clinic in their neighborhood and certainly do not want their tax money to support maintenance treatment via Medicaid or other forms of publicly funded treatment.
The big question is how to change people’s opinions regarding methadone maintenance treatment and drug addiction in general. Methadone patient advocacy groups such as DONT (the organization the publishes Methadone Today) believe that we must educate the public to change attitudes. This is easier said than done, however, since radio, television, and newspaper advertisements are not cheap.
One idea is to adapt the strategies prevention groups have used in campaigns. For example, organizations combating drunk driving have been very successful in raising awareness of alcohol’s role in automobile accidents--and further, in getting people to avoid driving while intoxicated by taking a taxi, having a “designated driver”, etc.
Indeed, Advocates for Recovery through Medicine (ARM) has tossed around the idea of running radio or television spots, which send the message that methadone patients are regular people--construction workers, attorneys, secretaries, etc. and that methadone maintenance treatment saves lives and allows opiate addicts to live healthy, productive lives.
We would like to see this and other ideas put into practice.
At least up until now, such campaigns have taken a back seat to regulatory
reform and advocacy at the methadone clinic level, as many clinics continue
to underdose and mistreat patients, etc. We believe that educating
methadone patients, their family and friends, and the medical community
is the place to start. But perhaps it’s time to move forward and
attempt to educate the general public about this misunderstood treatment
as well.
Discrimination against methadone maintenance patients in determining
who receives organ transplants is an issue we have not covered for some
time, but a couple of newspaper articles reminded us of this important
issue--a vital issue if you are the one in need of an organ transplant.
In the United States, there is no one set of policies or rules that govern eligibility for liver transplants; each area has their own transplant program, and their policies vary. In general, drug and alcohol addicts are permitted to receive liver transplants if they have not used drugs or alcohol for a period of time. According to a February 27 Reuters News Release, “U.S. Studies Sees Barriers in Liver Transplants,” all of the liver transplant programs accepted patients with “an addiction history”, including individuals who had been addicted to heroin. Being currently in treatment is considered a positive--unless the treatment happens to be methadone maintenance treatment.
A little under ½ of U.S. transplant programs simply will not consider methadone maintenance patients for liver transplants. A little under 1/5 of these programs will accept methadone patients for liver transplants only after they have completely withdrawn from methadone. The remainder (roughly 40%) do not require methadone maintenance patients to withdraw--presumably, this means that being in maintenance treatment is not held against them or may even be considered a plus as with other drug treatments, but it is still possible that the administrators of some of these programs unconsciously discriminate against methadone patients. The above percentages were determined using figures from the Reuters News Release, which according to it were derived from a survey of transplant programs--the findings of which were reported in the Journal of the American Medical Association.
These policies, where methadone patients are only considered after withdrawing from methadone, are certainly not in the best interest of methadone patients in need of a transplant. Needless to say, they might not survive long enough to completely withdraw from methadone, or they may be too sick to benefit from a transplant by the time they do completely withdraw.
Certainly, there is no evidence that withdrawing from methadone improves
an opiate addict’s chances of a successful organ transplant; in fact, there
is plenty of evidence that withdrawing from methadone puts such individuals
in peril--of relapsing, possibly causing damage to the new organ and causing
other medical problems including death from overdose and contracting diseases,
such as HIV. In past issues of Methadone Today, we
have reported that there is a high relapse rate associated with withdrawing
from methadone, as is the case with detoxing from short-acting opiates.
The researchers who conducted the above survey came to similar conclusions
and regard these policies as counterproductive (Reuters News Release).
So, if such policies are not in the best interest of methadone patients,
then what is the justification for it? There is merit to some of
the policies concerning drug and alcohol addicts. An individual in
active addiction is likely to continue abusing drugs after an organ transplant--most
of which are harmful to bodily organs, particularly the liver. Addictive
use of many drugs also presents other risks (i.e., of contracting certain
diseases, of overdose, etc.); a new liver does little good if the recipient
dies of a drug overdose two months later. Unfortunately, the demand
for organs is greater than the supply; therefore, prospective recipients
are chosen who have a relatively good chance of a successful transplant.
But the fact is that a methadone maintenance patient is actually less likely--not more likely--to relapse to illicit drug use than a former opiate addict in “abstinence-based” treatment . In addition, it is usually easier to determine whether a methadone maintenance patient is using illicit drugs than a former drug addict or alcoholic in some other treatment, since federal regulations require that methadone patients be regularly screened for illicit drugs--and not just illicit opiates. It is true that some methadone patients continue to abuse alcohol, but this is also the case with some former drug addicts in “abstinence-based” treatment as well. This is certainly not a good reason to make blanket policies regarding methadone patients--MMT patients, like all individuals with a history of drug addiction or alcoholism, should be screened for current alcohol abuse. Dr. Marc Shinderman, a methadone clinic owner/director, who is on Methadone Today’s Medical Advisory Board, has observed that alcohol abuse is extremely rare when a methadone patient is properly dosed; it is most likely in that case that MMT patients are LESS likely to abuse alcohol than former opiate addicts not in maintenance treatment.
As quoted in the Reuters News Release, the researchers who conducted
the above survey chalked up these transplant policies to “clinical confusion”
regarding maintenance treatment. But perhaps this is the worst possible
reason for discriminatory policies. We are talking about supposed
medical professionals, yet they are making life and death decisions based
on their own personal biases and misconceptions rather than on the facts.
MMT and its safety and effectiveness has been well researched--in fact,
it has probably been more researched than any other medical treatment.
If the individuals running these transplant programs cannot open up a medical
journal and research a treatment before making blanket policies on a treatment
they know nothing about, they do not belong running these programs and
maybe should not be in medicine at all! The arguments these individuals
make in favor of policies excluding MMT patients from organ transplants,
sound more like moral judgement than reasoned medical conclusions.
In “Anti-methadone Policies Lack Clinical Basis Critics Say,” by Peggy
Peck (WebMD Medical News, February 27, 2001), a head of a liver transplant
program basically argued that methadone maintenance patients were trading
one addiction for another--these individuals are still in active addiction
and therefore should not be considered for a liver transplant unless they
withdraw from methadone.
The fact is that this is not true: methadone maintenance patients are not “addicted” to methadone; they are dependent upon it. a medical professional should know better than to make such a statement--the stigma against methadone maintenance patients is bad enough without medical professionals repeating such myths. But even if it were true, this is not a good reason to exclude methadone patients. Addicts who continue to use alcohol or drugs are excluded from receiving liver transplants for reasons mentioned previously (i.e., alcohol and most illicit drugs could damage the transplanted organ). However, methadone does not cause damage to the liver and other organs; it does not suppress one’s immune system nor cause any other complications that would reduce the chances of a successful liver transplant*. Thus, even if methadone maintenance patients were “addicted” to methadone, excluding them from liver transplants would be as inappropriate as excluding individuals addicted to gambling.
It is not the job of organ transplant programs to determine who is “worthy” to receive an organ. Their policies should be purely based on the prognosis: how likely is it that an organ transplant would be successful. Clearly, methadone maintenance patients should not be excluded from liver transplants or forced to withdraw from methadone before being permitted to get an organ transplant. This is a case of unjustified discrimination, pure and simple; legal action should be taken to end this injustice.
*We have not found any information regarding methadone maintenance patients receiving organ transplants besides liver transplants. Methadone does not cause damage to any bodily organs, so most likely being on methadone maintenance would not complicate other organ transplants, but we cannot say this with absolute certainty unless/until we find some research in this area or talk to a physician who has personal experience with methadone patients undergoing other organ transplants. Because many methadone patients contracted hepatitis C from intravenous drug use--which primarily attacks the liver--liver transplants are by far the most common organ transplant methadone patients require.
**Dr. Marc Shinderman, of our Medical Advisory Board, agrees that there is no justification for not allowing methadone maintenance patients to receive liver transplants: “Methadone does not adversely affect liver function, whatsoever. Those hepatic abnormalities which do occur in methadone treated patients are due to alcohol abuse and viral diseases for the most part. Most importantly, methadone should not be reduced or discontinued as part of treatment of HCV, as a requirement for anti-viral therapy of HCV or as a prerequisite for liver transplantation, in the stabilized MMT patient.”
Unfortunately,
physicians that provide therapy for HCV (AKA: hepatitis C) will sometimes
refuse to treat methadone patients at all until they completely withdraw
or taper to a very low dosage. Ironically, delaying therapy for HCV
often results in liver damage that might have been prevented--at the least,
the damage may have occurred at a slower rate had therapy been promptly
initiated; the end result being that the HCV patient needs a liver transplant
that otherwise may not have been necessary. These practices are inhumane
and serve no one.
Upon receiving the instructions from the man’s medical doctor, the methadone clinic doctor denies the man the right* to have daily delivery of his methadone and won’t even compromise by giving him take-homes for a short time. The clinic doctor says the man doesn’t have a job to attend so he can come in to get his methadone every day, considering he walked in to the office to bring in his medical orders. The man felt trapped--he struggled into the methadone clinic daily to be medicated, to stay drug-free.
The man wasn't supposed to even be on his terribly diseased feet and legs. As a consequence of going out every day, the pain, the strain, the struggle, and his lowered resistance and ability to fight off germs, the man caught pneumonia. This year, after nearly a month in the hospital, he passed away. If only that clinic doctor would have given him his home deliveries, he probably would be here with us today. This doctor thinks he is greater than God, but he is sadistic. We need to get a rational person in charge of our precious clinic.
-a Concerned Patient
*Unfortunately, take-home allowances are currently defined and regarded as a “privilege”, not a “right”--even in a case such as this where there is a vital medical reason to provide take-home doses.
To protect the writer’s anonymity, the name of doctor and clinic has
been omitted.
Clearly though, your clinic doctor’s actions [or lack thereof] had nothing to do with government regulations (we hate to think what his precise motivation was). There is no excuse for this type of treatment, and we dare say that this doctor does not belong working in a methadone clinic or in the medical profession period.
(*Note: the federal regulations have changed since then; now a patient who has been in treatment as long as this individual could receive as much as a 30-day take-home supply, without getting any kind of exception. Back then, however, a two week take-home supply was the maximum permitted by the federal regulations--and for more than a 6-day take-home supply, an exception would be required. As discussed, state regulations vary in regard to take-home rules.
The US. Department of Health and Human Services (DHHS), Department of Civil Rights, is looking for methadone patients who have been victims of discrimination from transplant programs and HCV treatment. These are patients who have either been told to taper from methadone before they can start combo treatment for HCV or told they must taper before they will be eligible to get a liver transplant.
IT IS VERY IMPORTANT THAT WE GET THESE PATIENTS NAMES TO THE DHHS. Copy this notice and take it to your clinics. Ask your clinic doctors and directors if they know any such patients. Talk to patients. The Federal Government NEEDS to know how widespread this discrimination is.
If you have been discriminated against, if you have patients who
have been discriminated against, or if you have any questions about this
initiative, contact Ron Copeland or Shelley Jackson at 202-619-0403/ fax
202-619-3437 or mail to
DHHS Office of Civil Rights, ADA Analyst, Mail Stop Room 506F
200 Independence Avenue SW, Washington, DC 20201.
The Federal Government is SERIOUS about stopping these abuses,
but they need our help.
Name: World Methadone
Site Address: http://www.messagefriends.com/talk/neets.html
Description:
Ever want to talk with others, or share concerns you may have
regarding methadone? Don’t know that much about methadone and/or
drug addiction and you want information regarding it? At World Methadone
you will find information regarding methadone, methadone clinics, methadone
treatment, clinic problems, health issues, employment problems, family/friends
difficulties, what to expect once entering a methadone program, stories
from patients who began, or have been in a program for a while, detox information,
and a lot of kind, sincere, informative support.
Editorials and/or ads are the aurhors’ opinions and are not necessarily
those of Methadone Today
On the Internet, Methadone Today’s website and e-mail address have changed. The new website address [homepage] is http://www.methadonetoday.org. The new e-mail address is beth@methadonetoday.org. On the website, the old address is still highlighted, but if you click on the link, the new E-mail address will pop up if you wish to send an E-mail. Please bear with us, we will update them ASAP. (Note: the website and e-mail address appear in every issue of Methadone Today at the bottom of page 4, along with the postal address, subscription information, and information about DONT.)
NOTE: There will be no May issue of Methadone Today. As noted in a previous issue, we can no longer afford to print 12 issues per year; instead we are printing 10 issues per year. As stated below, we are supported entirely by subscriptions and donations. We apologize for any inconvenience or confusion this may cause.
