Dave R 26th February 2020
Used
medicinally for thousands of years; opioids have been called both God’s and the
Devil’s own medicines. Their properties can lift you out of a painful hell but
you may end up paying a chilling price. What do we need to know?
“Pain is experienced by people and families
not by nerve endings” Dame
Cicely Saunders
A nightmare for some and a godsend for others; some people become addicted to opioids because opioids have become their recreational drug of choice and others become addicted because their pain symptoms are so severe that they have no choice. Either way, a problem has arisen which threatens social stability in whole communities, especially in North America and makes authorities unsure which way to turn.
The average person living with neuropathy may see this as a far from my bed phenomenon but as I will explain later, many people living with neuropathy find themselves involved with opioids before they know it and have to live with the consequences of this sort of treatment simply because there is no better way of treating their worsening pain.
First some statistics to highlight the scale of the problem:
·
According
to the US Institute of Addiction Medicine (http://www.ioam.org/statistics.html) in 2007, 23 million people over the
age of 12 needed treatment for substance abuse in the USA.
·
Between
1992 and 2003, abuse of prescription drugs increased by 140%.
·
Given
that Americans represent 5% of the world’s population; 80% of the world’s
supply of opioids and 99% of the global availability of hydrocodone is used
within the US borders.
·
Because
opioids are legally available as prescription drugs, this availability has been
matched by a 63% increase in opioid-related deaths between 1999 and 2004.
·
Many
studies have shown that abuse or misuse
of these drugs averages out at between 20% and 58% of people who have been
prescribed opioids for chronic pain.
·
In
2005 it was established that almost 2 million Americans were opioid dependent
but more alarmingly...
·
Approximately
4.7 million teenagers and adults used opioids for non-medical purposes and...
·
Over
32 million Americans reported having used them for non-medical purposes at
least once in their lives.
Shocked
yet? Actually these statistics were assembled before the current explosion in opioid addiction and abuse that has
recently begun to hit the headlines across the western world. The figures, years
later in the 2020’s will be far higher and the number of deaths and serious
health problems resulting from both opioid prescription and the black market,
will be alarmingly high. It’s a problem that is almost unrecognised in its
expanse and a social time bomb that we still seem unwilling to acknowledge.
Still,
why should this be relevant to people living with HIV and/or neuropathy? The
answer is that many people with HIV are also chronic pain patients; something
that is often overlooked when reading about the negative aspects of being
positive.
According to
the Well Project, (http://www.thewellproject.org/en_US/Living_Well/Health/HIV_Pain_Mgmt.jsp) many people with the virus have to
manage chronic pain symptoms for the following reasons:
·
Peripheral neuropathy (between 25% and 40% of people with
HIV) – nerve damage with over 100 causes, amongst which are the virus itself,
diabetes, cancer treatment, toxic medications and even high alcohol
consumption.
·
Abdominal Pain (26%...) – as a side effect of some
HIV drugs; parasitical infection or bacteria; problems and irritability in the
intestines, including irritable bowel syndrome; inflammation of the pancreas
caused by some HIV meds; too much fat in the blood; or drinking; bladder or
urinary tract infections and in women, uterus, cervix and ovary conditions.
·
Headaches and migraines (17%...) - from mild to severe brought
about by a variety of causes including certain HIV drugs
·
Joint, muscle and bone pain (5%...) – can also be from mild to
severe and be related to forms of arthritis, rheumatism; bone disease and bone density
problems. It can also occur when using drugs for high cholesterol and
especially hepatitis.
·
Herpes pain (5%...) – many people may see herpes
as par for the course when you’re sexually active but a cold sore, or sore on
your genitals represents its mildest form. If you’ve ever had shingles, you’ll
know that the pain can be excruciating and as the herpes virus can frequently
re-occur, it’s something that can plague your life if you have a weakened
immune system.
·
Skin problems and rashes – side effects of certain neuropathy
medications or other drugs.
·
Chest pain caused by lung infections such as TB,
bacterial pneumonia, or PCP pneumonia.
·
Mouth pain caused by ulcers or fungal
infections.
·
Pain
due to cancer in all its forms.
According to pain.com
(http://pain.com/library/2010/12/08-painful-conditions-hivaids-1) in 2005, 8% of HIV individuals were
on long-term opioids for severe pain, which was more than double the non-HIV
population. However, the good news is that the explosion in opioid use since then has not been paralleled in
the HIV population. This is possibly because opioids are prescribed for valid
reasons to HIV patients and there is much less incidence of recreational opioid use which has worsened
the problem in the general population.
Before
everybody writes in to say that they’re fine and have never had a problem with
the virus or the medication, please be reassured that you are some of the lucky
ones. Of course only a certain percentage of people living with HIV, or cancer,
or other serious conditions will suffer chronic pain in one form or another but
a significant proportion of those will eventually have no option but to start
taking opioids as the only painkillers that will help. It’s not a choice:- some
pain is so severe that it just doesn’t react to over the counter medications,
or medications meant for other diseases.
Opioids,
if used properly are a very effective solution. The problem is that they
are not always used properly as the statistics above clearly show.
Recreational
use of opioids could also be said to be the result of psychological ‘pain’;
fulfilling a need to escape from the harsh edges in life (it could also be simply
the well-known search for a kick that has got out of hand). However,
recreational drug use and the reasons for its popularity are really subjects
for other articles. What we need to know to arm both ourselves and people we
know with knowledge, is that it gets out of hand when people don’t realise how
quickly and easily they can become seriously addicted.
So, with the
facts out of the way, it’s perhaps useful to illustrate the problem by giving
some examples of what opioid abuse has been doing to people.
Canadian issues
A BBC article (http://www.bbc.co.uk/news/magazine-17516230) told how Oxycontin (Oxycodone) has
been responsible for devastating certain groups within the Canadian First
Nation communities.
Just three
hours flying time north of Toronto is the small town of Fort Hope, where it is
estimated that 80% of the working age population is problematically involved
with Oxycontin abuse. A local artist, Dave Waswa, carves eagles from moose
antlers and instead of selling them to art dealers and galleries, sells them to
feed his addiction. One carving will earn him 5 or 6 Oxycontin pills and in
Fort Hope itself, an 80mg tablet can cost up to $600.
If ever a town was
ironically named! Even more ironic is that in the cities like Toronto, you can
buy Oxycontin pills for roughly $40 each and the suspicion that the drug
dealers are targeting remote communities seems to be borne out. The result of
this is that people will do anything to get their drugs, including selling
themselves and their possessions. The spiral of social decay then becomes
speedy and almost inevitable and in the end becomes a criminal rather than a
social problem.
"It makes everything go away," Mr Waswa
says of the prescription-only painkiller. "You don't have no feeling. You
just want to stay high… but I'm tired of it. I lost a buddy last summer. He was
38 years old and took an overdose, went into a coma and never got up."
As an ex user of
Oxycontin myself (prescribed for neuropathic pain) I didn’t know what I was
being prescribed but now know exactly what it’s like. It’s said to be as potent
as heroin and more addictive and that’s an accurate description. For people who
use it as prescribed, it is taken orally and absorbed into the body over twelve
hours. The problem is that huge numbers of people are abusing it by crushing
and smoking or snorting it – the high is then pretty much instant and the
addictive effects kick in almost as fast.
You absolutely shouldn’t
be tempted into making racist assumptions here. The First Nation communities
for example, are just one example of many spread across society from the
leafy suburbs of the big cities, to isolated communities where life is already
under pressure.
The BBC article is worth reading but you can find equally
powerful case-studies across North America, in every type of social class and structure. Just like any other
addiction problem, local circumstances may make the problem more easily
profiled but it’s everywhere, irrespective of social background.
The Methadone
Strategy Working Group in Ontario states clearly... “Opioid dependence is a health and
social crisis in Ontario that crosses all social and economic strata.”
...and that applies to every country or state facing these problems.
The manufacturers of
Oxycontin (Purdue Pharma) have recently stopped distributing the current format
of the drug both in Canada and in many states in the US. It has been replaced
by a version that is far more difficult to tamper with (OxyNeo) and only works
on a time-release basis, thus bringing it back to its original purpose. This
may not help the current addicts who need instant highs but it is a step in the
right direction. It’s important to note however that even time released opioids
are potentially addictive. The very nature of the way they work means that
eventually you need more of the same drug to maintain the same level of pain
control! They’re working on various alternatives but many people end up taking levels
of Oxycontin for instance that virtually guarantee addiction. Many doctors
don’t appreciate how easy a process this is.
When I realised what it was doing
to me, my specialist told me to come down from 80mg a day for instance, to
nothing within a week! Six difficult months later, I was down to 5mg a day and
a couple of months later finally came off it altogether but it was an almighty
struggle and telling people that weaning off the drug is a short term process
is nonsense and guaranteed to add to people’s insecurities.
Oxycontin (http://www.cbc.ca/news/canada/story/2012/03/08/oxycontin-marketing.html) was introduced as a wonder drug in the
late 90s and was pitched as a less addictive option than other opioids. Cancer
patients especially saw this as a huge breakthrough in dealing with their pain
but in fact Oxycodone turned out to be twice as strong as morphine. Doctors
were at first unaware of its addictive strength and many still are but
fortunately, local and state medical authorities across North America are waking up to the problem and removing it in
its current form from the market; with the FDA in the
States (http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm310641.htm) leading the way.
The problem is that
the more controllable alternatives are not yet available everywhere, leading to
addicts heading onto the black market and underground dealers.
These
alternatives are basically exactly the same as Oxycontin or other opioids but
can’t be crushed or liquefied. Unfortunately, this is a typical governmental
approach to all sorts of addiction: pass a law, remove the drug but don’t have
realistic alternatives in place so that addicts can wean themselves off slowly
and with guidance. This often leads to further misery for the addict and a
rapid growth of an underground market.
It’s
important to remember that Oxycontin is by no means the only opioid that has
these troubling side effects. Morphine family members, including amongst
others, Tramadol, Dilaudid and Percodan all have their own stories of
widespread addiction after delivering relief from chronic pain.
A paper produced
by the Ontario Addiction Treatment Centres (http://www.oatc.ca/research/CounteringTheCrisis.pdf) makes for very interesting and
alarming reading, the chief points of which are as follows:
• The
main causes of drug-attributable deaths are suicide, overdose and AIDS
contracted
from sharing needles—all of which are strongly associated with
injection
drug use.
• Each year, about 1% of opioid users
will die from an overdose.
• In 1995, opiate poisoning was the cause
of about 160 out of 804 drug-related
deaths
in Canada, and opioids accounted for 11% of the 6,947 hospitalizations
attributed
to illicit drug use. (This does not include the hospitalizations for
inappropriate
use of prescription opioids.)
• People who are opioid dependent are
also extremely vulnerable to life-threatening blood-borne diseases, such as HIV
and hepatitis C. Between 1985 and 1999, the proportion of people in Ontario
diagnosed with HIV through injection drug use rose from 0.45% to almost 15%. In
1999 alone, injection drug users accounted for 24% of new HIV infections in
Northern Ontario and 15% of new HIV infections in Ottawa. As of 2000, 63% of
newly diagnosed cases of hepatitis C are related to injection drug use.
• In 1999/2000, drug possession or drug
trafficking accounted for 7% of new
admissions
to correctional institutions (2110 people), 5% of new admissions to
probation
(1,809 people) and 16% of new admissions to conditional sentences
(694
people). These figures do not include the number of people convicted of
theft
or other crimes to support a drug habit.
• The Ministry of Community and Social
Services estimates that about 3% of users of the social assistance or welfare
system have a history of drug dependency, which affects both their
employability and their ability to maintain employment.
It’s again
important to remember that this paper was drafted some years ago and since then
the opioid problem is said to have ‘exploded’, which if true, is a frightening
thought. Whether the problem has really
become so much greater since 2000 is open to discussion. The truth may be closer
to the fact that the media in western countries has finally cottoned on to the
extent of the problem and has devoted column inches to lurid and sensationalist
headlines which make it look as though the opioid addiction problem is explosive
and threatening to the social fabric.
So what is the ‘real and present danger’ to us as people living with HIV, its co-morbidities and any resulting extra health problems? If your pain does not respond well enough to analgesics and other drugs (anti-depressants, anti-convulsants and other drugs meant to interact with nerve signals to the brain), you may be advised to move onto opioids of one sort or another. This shouldn’t alarm you too much, despite the content of this article. Opioids work really well, if they are kept under control and you are consistently monitored by your doctor or specialist. He or she should make every effort to ensure that you don’t become addicted whilst still getting the most relief out of the pain killing effects. The problems often begin if the doctor writes you a prescription and then leaves you to get on with it.
The medical authorities and pharmaceutical companies are finally reacting to the problem and working on ways to reduce the potential for pill abuse by developing safer alternatives with longer delayed release effects, to try to cut out the possibilities for instant highs. They are also busy studying the best ways of directing and re-directing pain signals to the brain by creating more refined opiate derivatives but this will take time, especially as each new product has to go through hoops before it is officially approved.
In the meantime, millions of people suffer from substance use and abuse and many more are affected by someone else’s problems. The best we can all individually do is keep our eyes open in our own circles. If you know someone who has been prescribed opioids for chronic pain, tactfully try to let them know that you will be there for them during any difficulties and watch out for signs of a personal struggle with the drugs. Of course this is true for all substance abuse; from over-eating via alcohol and smoking, to heavier medication abuse. If for whatever reason you personally take opioids for recreational purposes, I can’t judge but please make yourself aware of the facts and the dangers and if you feel that control is slipping away and the drugs are taking over, at least tell someone you trust. You really don’t want to become another drug abuse statistic, especially if you are also living with HIV; life is surely difficult enough!
I don’t want
to come over as alarmist; the statistics surely speak for themselves and
opioids are powerful analgesics that
when properly and sensibly prescribed and administered, can bring much needed
relief from physical pain and emotional suffering. However, they aren’t
aspirins and need to be treated with the greatest of respect.
If you take them
because your pain is unbearable, you have to see them as a positive treatment;
you may not have any choice but knowledge is power and being aware of what they
can do if not wisely used, is half the battle against potential problems. If
you’re honest with yourself, you may become more aware by looking at other
things in your life. Do you find it difficult to resist smoking, drinking,
eating, for instance?
I know I have a history of being open to temptation and
may have a ‘suggestible’ personality. Perversely, that knowledge helped me stop
smoking, drinking and certainly helped when coming off Oxycontin. Knowing that
you are susceptible to mild addictive behaviour may keep that thought in the
back of your mind when dealing with opioids. Never be afraid to pester your
doctors for help – they can’t read your mind.
Finally, the
following by Jane Ballantyne and Steven LaForge from the official journal of
the American Pain Society sums up how difficult the whole subject is.
“When patients are maintained on opioids for
the treatment of pain, there is currently no satisfactory means of
distinguishing true addiction from problematic behaviors caused by a variety of
factors other than addiction. Unfortunately, advances in understanding the
neurobiological foundation of addiction have not been matched by any
improvement in physicians’ ability to recognize and diagnose the condition.
There is no single diagnostic marker of addiction, no definitive change on
brain imaging and as yet no genetic markers to provide a reliable prognosis of
risk. When it comes to iatrogenic opioid addiction, the clinician is faced with
even greater difficulty: the behaviors encountered do not resemble those
outlined in the criteria for addiction to illicit drugs...
...One of the great difficulties of
quantifying, recognizing, and treating iatrogenic opioid addiction is the
subjective nature of the judgment on whether behaviors have crossed an
ill-defined boundary between problematic opioid use and addiction. This
judgment then becomes dependent on the reporting person’s experience,
prejudices, and knowledge.”
Ballantyne JC, LaForge KS. Opioid
dependence and addiction during opioid treatment of chronic pain. Pain.
2007;129(3):235-255
Opioid
dependency is clearly a huge problem, partly because of the dichotomy of its
causes. How can you balance the medical need for perfectly legal and effective
drugs, with the potential for side effects and addiction? Addicts may become
addicted because the opioids have overcome the original medical need and
prescription parameters, or because they’re seeking a buzz or a high? The end
result for both can be addiction, even if the original motives were polls
apart. The lines are blurred and nothing is just black and white but there is
no doubt that it’s another underestimated problem of the modern age, which is
having wide ranging effects of certain groups in society.
The authorities are,
as is often the case, reacting instinctively by using sledge hammers to crack
nuts by locally banning this and that and criminalising doctors and chemists,
who have to turn legitimate patients away.
It is complex and we have to hope
that the pharmaceutical companies will ignore their cash cows and quickly come
up with safer but equally effective alternatives. Let us hope that people
living with HIV are amongst the most knowledgeable and level headed in society and
that the problem within our community will be constrained, even if it can’t be
removed.
“Only
the patient knows how intense and frequent a pain is – a pain is what the
patient says it is.” Palliative caregiver
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