The opioid solution: from the frying pan into the fire
Dave R writes . 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, others 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.
You may see this as a far from my bed phenomenon but as I will explain later, many people living with HIV 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 pain.
First some statistics to highlight the scale of the problem:
- According to the US Institute of Addiction Medicine 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, five years later in 2012 will be far higher and the number of deaths and serious health problems resulting from both opioid prescription and the black market, will now 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? 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, 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 HIV-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 HIV.
- Skin problems and rashes – side effects of certain HIV 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.
"the good news is that the explosion in opioid use since then has not been paralleled in the HIV population"
According to pain.com 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 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 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.
A BBC article told how Oxycontin (Oxycodone) has been responsible for devastating certain groups within the Canadian First Nation communities.
"The spiral of social decay then becomes speedy and almost inevitable and in the end becomes a criminal rather than a social problem."
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 cities like Toronto, you can buy Oxycontin pills for roughly $40 each and the suspicion that drug dealers are targeting remote communities seems to be borne out. The result 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 know what it’s like. It’s said to be as potent as heroin and more addictive. 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 shouldn’t be tempted into making racist assumptions here. The First Nation communities 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 easier to find 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.
"They’re working on various alternatives but many people end up taking levels of Oxycontin for instance that virtually guarantee addiction."
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. 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 months later, I was down to 5mg a day and a couple of months later finally came off it altogether but it was a 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 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 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 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. You should always discuss any potential side effects and problems before beginning with opioids. You should get his or her reassurance that you will be carefully monitored and that the right level of opioid medication will be found with as little risk of addiction as possible. Anything less is really unacceptable but the reality is often harder than this advice suggests. If you’re given a ten minute appointment, it may be difficult to discuss things in any detail because the doctors are under so much time pressure. However, in this case, you can be sure that a little time spent establishing ground rules now will save much more of the doctor’s time later if it goes wrong. If you want to get off the drugs at a later date, make sure that the close monitoring continues: weaning yourself off opiates is no casual matter and isn’t easy; you’re going to need support. In your own interests, make sure you get it.
"Addiction also involves a physical, psychological and behavioural need for an opioid and can dominate a person’s life."
The American Institute of Addiction Medicine points out that the World Health Organisation recognises opioid addiction as a brain disease. Addiction also involves a physical, psychological and behavioural need for an opioid and can dominate a person’s life. They also say that opioids prescribed as pain killers are similar to heroin and can be equally addictive. Addicts will go to any lengths to satisfy their need, including shopping around the various doctor’s surgeries and clinics; stealing from friends, family and work and using the internet to order them from whatever suspect source. The withdrawal symptoms of coming off opioids should never be underestimated – it’s always possible but it’s going to be hard – you’ll probably need help, guidance and understanding. Never try to go cold turkey with opioids; you don’t need to; just get the right advice. Some people however, will continue their addiction rather than face the social stigma of admitting their problem and seeking help.
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 know I have a history of being open to temptation and may have a ‘suggestible’ personality."
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
- Tags: addictions, AIDS, HIV, HIV and Pain, HIV medication, LGBT health, opioids, Oxycontin, pain relief, PositiveLite_com
About the Author
English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.