Making medicines safer for all of us

Adverse drug events are now the fourth leading cause of death in hospitals.

It’s a reasonable bet they are an even greater cause of death in non-hospital settings where there is no one to monitor things going wrong and no one to intervene to save a life. In mental health, for instance, drug-induced problems are the leading cause of death — and these deaths happen in community rather than hospital settings.

There is also another drug crisis — we are failing to discover new drugs. [Read more...]

Archive for Hiding the bodies

File under Phile: Anecdotes are not Science

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Editorial Note: The Post-Truth Rumorology post attracted a comment by Annie that deserves featuring.

She cites a really good Daily Mail article in which Melinda Messenger talks about intervening when her daughter is scheduled to have the HPV vaccine. The DM article drew this response from Dr. David Robert Grimes – a physicist at the University of Oxford – “Mothers should listen to the experts”.

Grimes: Mothers should listen to the experts not Dr Google

Cervical cancer is one of the few cancers we can prevent, which is why this vaccination program is so important and why all parents should ensure their daughters receive this potentially life-saving inoculation, writes Dr Robert Grimes, Science Writer and Cancer Researcher at the University of Oxford.

Gardasil, the form of the vaccine currently used in the UK, has been extensively tested for years and recipients constantly monitored for potential adverse effects.

More than 200 million doses have been administered over the past ten years, with research and trials dating back to 1991. The vaccine has proved to be a safe and effective intervention with an extremely low complication rate.

Only last year, a report based on data from more than a million recipients concluded the vaccine had a ‘favourable safety profile’. But still claims of ‘vaccine damage’ continue to circulate online, to be stumbled upon by the many who daily consult Dr Google, instead of turning to highly trained health professionals for advice.

Much of it comes from anti-vaccine campaigners, not content with the damage already done by the discredited, downright dangerous claims linking the MMR vaccine to autism. Among the groundless assertions are that the HPV vaccine causes thrombosis and chronic fatigue.

I cannot blame anyone whose child becomes ill or permanently exhausted for searching for an explanation and cause.

However, if you are giving a medical intervention to everyone at a certain age, as in this case, it is a medical certainty that some people get sick in the days, weeks or months afterwards. It would, of course, have happened whether or not they had received the treatment. It is merely coincidence.

Perhaps another issue with the vaccine, for some parents at least, is having to face up to the fact that their children will likely become sexually active in the not-too- distant future.

But, although pretty natural, such squeamishness doesn’t give you the right to deny your child, or the people they may become intimate with, the protection provided by this vaccine.

This most recent scaremongering, from the American College of Paediatricians concerning a risk of premature menopause, is equally without merit.

This is not some august medical body (in fact, that’s the American Academy of Paediatricians), but rather a group of conservative activists opposed to abortion rights, gay marriage and pre-marital sex.

Their claim is motivated more by ideology than by any evidence, and is simply not supported by the overwhelming weight of scientific evidence. There is no link between the HPV virus and premature ovarian failure, so it makes no sense to suggest that the vaccine may cause this condition.

Yet still, there have been a number of legal challenges mounted against the manufacturers of Gardasil, supported by the ‘Regret’ group in Ireland.

The case made it all the way to the Irish High Court, and although it was refused, the movement shows no signs of abating.

We need only cast our minds back to the damage done by scare stories about the MMR vaccine to be reminded how dangerous this can be.

Those who are not vaccinated against the HPV will have a much higher risk of contracting cancer than they would have of becoming ill as a result of having the jab, so, from a parenting perspective, it’s a no-brainer.

What we must avoid at all costs are these tales of personal misfortune, which are ultimately unrelated to the vaccine, getting in the way of an inoculation programme that could save many thousands of lives.

Editorial Note: Dr Grimes is not a doctor. He is closely linked to Sense about Science for whom vaccinations can do no harm.

Twittersphere

Annie also picked out some DRG Tweets. In response to Caron Ryalls

(a) No idea who you or your daughter are (b) Going to go out on a limb & say no medical records say HPV vaccine caused ill health

Caron Ryalls‏@caronryalls

U publicly claim my daughter’s ill health is unrelated 2 HPVvax but U hv no access 2 her medical records @drg1985!

Linked to the Daily Mail article: David Robert Grimes ‏@drg1985

The @DailyMailUK just ran page 3 model’s fears over HPV vaccine. Utter drivel. I was quoted in reply, w/ name mangled. Not linking.

..it’s utterly irresponsible of @DailyMailUK to run this crap, especially as I clearly stressed dangers of false balance to DM reporter.

And the sad thing is, the ramblings of a celebrity will garner far more press and panic than me or any scientist. Do better, @DailyMailUK

..it’s precisely this kind of thing that makes scientists weary about talking to the press; science is an afterthought. @DailyMailUK

Age of consent

The Messenger article was well done. Neither Motivation nor Expertise are always right, we ideally need both. But if forced to choose between them, and in particular when motivation is linked to a mother looking after her children, in our current post-truth world of which pharmaceutical companies are the masters – as Study 329 demonstrates, I personally would lean toward motivation.

What was a surprise for me in the article was that while Messenger was sent a consent form by her daughter’s school and made it clear she did not consent, on the day the vaccinators are there if a 12 or 13 girl consents the vaccinators can over-ride a parent’s objections.

The Victoria Derbyshire show last week also featured a pre-teen who figured they were in a mis-sexed body. They were looking forward to being 13 when they could essentially demand the alt-hormones.

But if a teenage girl walks into a beautician in Britain and wants her ears pierced, unless she is 16 nowhere will do it without parental consent, and in Scotland it would be illegal.

“Anecdotes are not science”

A common theme in comments like DRG’s is that anecdotes are not data or science.

The original phrase was the Plural of Anecdotes is Data. This was coined in 1969 by Raymond Wolfinger. It is at the heart of the Big Data industries. If this weren’t true Google and Facebook wouldn’t exist.

The idea that the Plural of Anecdotes is not Data appears to originate from the CEO of Nutrasweet after his company’s product became embroiled in a cancer scare. It has been the mantra of corporations defending products ever since. (Please let us know if you can find earlier uses).

The response “Anecdotes are not Science” to claims of harms came into existence earlier. It was being widely used by spokesmen for the Pedophile Information Exchange during the 1970s when they infiltrated the Gay Liberation Front and Britain’s National Council of Civil Liberties. The NCCL was then steered by figures like Patricia Hewitt and Harriet Harman, who feature in the photo above. Hewitt and Harman were later among the leadership of the Blair Government.

Statements that we haven’t proven harm to children offered the press a shooting-fish-in-a-barrel opportunity to go after the Loony Left.

The PIE also showed a mastery of the ability to split hairs and other tricks that are now part of the corporate armory – No pedophile ever harmed a child, they were busy telling us in the 1970s – it’s child-molesters that do things like that.

The upshot was caught in this constructed photo of Patricia Hewitt – a decent woman as far as I know – who probably never actually said this.  But she ended up years later being portrayed as taking the same position that all politicians on the Left or the Right take in response to drug induced injuries and occupational injuries or environmental toxicity – we can’t or haven’t proven harm.  In most of these cases, like environmental toxicities and drug induced injuries, it turns out the harms to children are even greater than to anyone else.

The Vaccine arguments portray children’s immune and other systems as still developing suggesting they are more able to overcome these challenges than older people.  This is Anecdotal.

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Post-Truth Rumorology?

The HPV Vaccination in Japan

Stopping the spread of Japan’s antivaccine panic

Following the post last week on MedWatcher Japan’s efforts to bring the issue of HPV vaccines to light, my attention was drawn to a recent Wall Street Journal article which stated:

“Japanese women’s health is increasingly at risk as public-health policy is driven by conspiracy theories, misguided political interference and bureaucratic caution. This is particularly evident in the government’s handling of the human papillomavirus (HPV) vaccine to protect against cervical cancer.

In June 2013, just two months after the HPV vaccine was included in the National Immunization Program, the Japanese government made the unusual and perplexing decision to keep the vaccine in the NIP but suspend “proactive” recommendations for it. This was evidently in response to highly publicized accounts of alleged adverse reactions.

The result was that girls in the target age group, from the 6th grade of primary school to the third grade of high school, stopped receiving the vaccine. Vaccination rates dropped to below 1% from about 70%….

The Vaccine Adverse Reactions Review Committee, a task force established by the Japanese Ministry of Health, Labor, and Welfare’s Health Science Council, has repeatedly concluded that no causal link exists between HPV vaccines and professed symptoms, and that most reported cases were likely psychosomatic. A study of 70,960 vaccinated and nonvaccinated adolescent girls from Nagoya also found no significant association between 24 alleged vaccine-induced symptoms and the HPV vaccines….

In Denmark, Kusuki Nishioka, the Japanese doctor who first suggested the HPV vaccine caused brain injuries, appeared on television. The vaccination rate there has since dropped to about 20% from 80%.

The antivaccination movement is gaining traction in Japan. On July 27, 63 young women filed lawsuits against the Japanese government and vaccine manufacturers in the district courts of Tokyo, Nagoya, Osaka and Fukuoka, demanding compensation for alleged side effects from HPV vaccines….

These events are reminiscent of the biggest vaccine scandal in history. In 1998, Andrew Wakefield published “scientific data” in the Lancet as evidence that the MMR vaccine for measles, mumps and rubella caused autism.

Mr. Wakefield’s data was later found to be manipulated, but it was not until 2010 that his paper was retracted and his medical license revoked. Earlier this year, Mr. Wakefield released a movie called “Vaxxed: From Cover-Up to Catastrophe.” Robert De Niro, whose son is autistic, tried to premiere this movie at the Tribeca Film Festival. This once again fueled antivaccine sentiment in the U.S.

We can’t afford to sit back and allow a similar situation to develop in which unscientific claims jeopardize lives around the world. The Japanese government should reinstate its proactive recommendation for the HPV vaccine and set a positive example before irrational fear of the vaccine gains further momentum in other countries”.

The vaccine business

Once upon a time it was public health doctors who decided what vaccines became part of national vaccination schedules. In Japan and elsewhere the introduction of HPV vaccines to the vaccination program was engineered by the makers of vaccines. Vaccination is a business as much as or even rather than a matter of public health. See HERE.

When concerns appeared in Japan and the government suspended the heavy promotion of the vaccine it triggered an international response with the Center for Strategic International Studies, a body set up in the Cold War “dedicated to finding ways to sustain American prominence and prosperity as a force for good in the world”, publishing a report on HPV Vaccination in Japan authored by Heidi Larson and others. HL and colleagues are based in the London School of Hygiene and Tropical Medicine, one of the institutions that spawned AllTrials – somewhere with close links to Sense about Science.

You’d never guess from this document that the HPV vaccine was adopted in most countries after intense corporate lobbying. Instead, we are told:

According to experts in rumor psychology, rumors help people make sense of the world and offer an initial explanation for anxiety-provoking information and events. The longer situations of uncertainty and anxiety persist, the easier it becomes for rumors to spread and the more difficult they become to counteract.

Governments need to get in there, we are told, and be the first to provide information; they need to tell people we feel your pain; when people raise concerns they need to be encouraged to “talk to your doctor”, (who of course has been briefed by our side only). Governments are told they need to avoid a vacuum that might be filled by “people who don’t have the public’s best interest at heart”. They need to be on board with Project Fear.

HPV or not HPV that is the question

In Europe, especially in Denmark, there has been work in parallel to the MedWatcher Japan efforts, undertaken by Peter Gotzsche and Tom Jefferson who have filed a complaint with the European Ombudsman centered on maladministration by the European Medicines Agency of the safety data for HPV aimed at getting access to the data. See HERE. Preliminary work on this material had shown real cause for concern – see Jefferson.

In response to the Wall Street Journal’s article above, Peter Gotzsche said:

Tom and a PHD student I employed two months ago are working with CRFs from the EMA on the HPV vaccines. To say that “most reported cases were likely psychosomatic” is an insult to these girls and their families. There are good data that make is pretty likely that most suffer from an autoimmune disease with antibodies against nerve tissue, but whether caused by the vaccine, a virus or something else needs to be found out.

We had a meeting about HPV vaccines on 24 Nov in Copenhagen. One of the presenters showed a slide that in Denmark, provided 100% of 12 year old girls get vaccinated, and that the vaccine is 70% effective, and protects against dying from cancer (which we don’t know but just think), then in the next 30 years, 10 will die if not vaccinated and 7 if vaccinated. Thus, even in the best of scenarios, the effect of the vaccine is likely to be very very small”.

What Gotzsche hasn’t said here is that company marketing of these vaccines has been full of rumors and scaremongering, portraying the vaccine as the last defense against a nasty and aggressive cancer, a defense that is close to completely successful and comes without problems.

In fact Pap Smears manage the problems very successfully, just as hand washing is our best defense against many other infections and both defenses come without a risk of neuropsychiatric adverse events. But we hear nothing about these approaches.

It’s not impossible that some of the Japanese cases are hysterical. The bigger problem we all have is that in the wake of the revelations about Tamiflu and Study 329 it is impossible to accept the bona fides of companies whose health depends on ensuring we get their treatments rather than rely on something else that is safer and costs almost nothing.

There is a certain sense in which the forces that fueled Brexit are fueling a Vaccinexit. If this happens the powers that be will have no one to blame but themselves. Peter Gotzsche and Tom Jefferson knew nothing about MedWatcher Japan before the post last week. The more people like this find each other, the more difficult it will be for the Heidi Larson’s of this world to manage the debate.

When the going gets tough, get a woman

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64 women to sue in 3 Japanese courts over health woes from cervical cancer vaccines

A group of lawyers for 64 women who are suffering health problems from cervical cancer vaccines said Tuesday the victims will file damages lawsuits against the government and two drug makers that produced the vaccines through four district courts on July 27.

Of the 64 women, 28 will lodge their suit with the Tokyo District Court, six with the Nagoya District Court, 16 with the Osaka District Court and 14 with the Fukuoka District Court, according to the lawyers.

Initially, the victims, mainly teenagers, will demand ¥15 million in damages each, for a total of ¥960 million, and increase the amount later depending on their symptoms. The victims’ health problems include pain all over the body.

The average age of the 28 planning to file their suit with the Tokyo court is 18. They received the vaccination when they were between 11 and 16 years old.

Noting that the cervical cancer vaccines have caused nerve disorders and other problems due to the excessive immune reactions they caused, the lawyers claimed that the government’s approval of the ineffective vaccines was illegal. The drug makers bear product liability, they added.

Masumi Minaguchi, one of the lawyers, said, “We aim to clarify the responsibilities of the government and the drug makers through the lawsuits so that the victims can live without anxiety:’

Cervical cancer vaccines were included in routine vaccination programs in April 2013. But the government stopped its recommendations for the use of the vaccines in June the same year after receiving reports on complaints of health damage.

Meanwhile, the Japan Pediatric Society and 16 other institutions in April recommended active use of the vaccines, saying it is clear they are effective in preventing cervical cancer.

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The organization behind this action is MedWatcher Japan, who have been one of the most effective organizations in the world at holding Pharma to account. Two of their key players Masumi Minaguchi and Hiro Bepu are seen here. Masumi Minaguchi is the lawyer taking this case.

In this case MedWatcher have capitalized on the fact the HPV Vaccine is given primarily to girls and women who are old enough to be able to complain when things go wrong afterwards.

The science behind the MedWatcher case is presented in their refutation of the Global Advisory Committee on Vaccine Safety position which can be accessed HERE.

The HPV vaccines look like being a problem for vaccine advocates in that they puncture the claim that vaccines are safe and the only risks stem from not giving them.

Earlier this year Merck admitted their Shingles vaccine could cause eye damage. Again the difference is that the people suffering the harm are old enough to make their voices heard.

The response from vaccine advocates in the case of HPV vaccines has been to push for giving these vaccines in infancy.

Vaccines are a conundrum. They can clearly be effective and most of us would want to avail of most of them. But where elsewhere in medicine, it is legitimate to be against over-medicalization, being against over-vaccination puts anyone who advocates it beyond the pale.

Why?

Go Figure: Where Does All the Pain Come From?

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Editorial Note: This anonymous comment featured toward the end of the Murder or Accident post. It seemed worth transforming into a post in its own right. In the week of the US vote, a key question facing voters is where does all the pain come from.

A colleague and I gave a talk to family docs this year and we discussed the opioid epidemic, including the 1% risk of addiction myth in Letters to the Editor at NEJM. One Key Opinion Leader (KOL) is now acknowledging that he may have overstated the safety of opioids but maintains that they still have a role in chronic pain, see Dr Russell Portenoy here: http://www.wsj.com/articles/SB10001424127887324478304578173342657044604

He strikes a controversial chord with others involved in treating the outcomes of chronic pain killer addictions, like Dr A. Kolodny, see here: http://www.medpagetoday.com/painmanagement/painmanagement/47855

Other KOLs like Dr Jane Ballantyne, have made 180 degree turns regarding opioid use in chronic pain, this article is well worth the read: http://www.nytimes.com/2012/04/09/health/opioid-painkiller-prescriptions-pose-danger-without-oversight.html?_r=0

Challenging myths that have so much resources poured into them to maintain is very difficult. We were all taught that pain was the “fifth vital sign” by the American Pain Society (around the same time OxyContin approval occurred). You can see the sordid history, including how patient satisfaction scores may have a role in this epidemic, here: http://www.kevinmd.com/blog/2016/04/the-opioid-epidemic-its-time-to-place-blame-where-it-belongs.html

The US Docs probably had some scare put into them by the successful legal case brought against a doctor (Dr Chin) in 1998 who was charged for not treating pain adequately. Incidentally, this was the same time as the heavy marketing machine was revving up for Purdue. http://articles.latimes.com/2001/jun/15/news/mn-10726

The appalling story about Purdue/Abbott’s role in this public health disaster is outlined nicely here:

https://www.statnews.com/2016/09/22/abbott-oxycontin-crusade/

There has been very vocal opposition from pain advocacy groups and physicians when British Columbia adopted the March 2016 CDC pain guidelines that discuss opioids and state they are not effective and should not be used for chronic pain and that doses should not exceed 50 mg equivalents of morphine.

Pain BC is encouraging patients who have been affected by these new regulations to complain to the College! https://www.painbc.ca/news/howdothesenewopioidguidelinesaffectyou. Nothing strikes fear into physicians quite like a good old College complaint!

Although the evidence of harm is abundantly clearly (lack of efficacy in chronic pain, massive overdose deaths, lives in ruin, 80% of heroin users report starting drug use with physician prescriptions), both people and doctors choose to ignore this and some doctors fear College investigators. Sounds a lot like Dr Chin all over again…

Big Pharma’s influence in Canada continues. See here for Purdue’s lobbying of the Federal Government: http://canadians.org/blog/who-behind-canadas-opioid-epidemic. A coalition of chronic pain and addiction specialists signed a letter earlier this year, requesting that Federal Health Minister Philpott consider making oxycodone only available as a tamper resistant formulation (of which Purdue holds the patent). Sixty percent of the signatories have ties to industry. http://www.theglobeandmail.com/news/national/ottawa-urged-to-reconsider-tamper-resistant-oxycodone/article29813367/?utm_source=twitter.com&utm_medium=Referrer:+Social+Network+/+Media&utm_campaign=Shared+Web+Article+Links

Dr David Juurlink may have said it best in the Globe and Mail piece referenced above:

“It’s time we stopped listening to pain specialists. Their messages, which were wrong, got us into this mess in the first place,” “Many of these physicians are deeply in the pockets of the companies that make opioids and that stand to profit immensely from the sale of these new products.”

Ontario released a new “Strategy to Prevent Opioid Addiction and Overdose” on October 12, 2016. This milquetoast framework to our public health crisis makes several vague recommendations, one of which is to make more substitution therapy available, specifically access to buprenorphine/naloxone (Suboxone). The document fails to provide suggestions for how to carry this out nor does it make mention of the potential public health risks. Studies have shown that Suboxone is ten times more likely to be diverted than methadone (i.e. not taken by the intended person and diverted to illicit market). We may want to ask Finland for some advice (buprenorphine, has been at the top of drugs misused in that country): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3154701/

The provision of methadone (the other substitution treatment available) in the province received well-deserved criticism from the “Methadone Treatment and Services Advisory Committee”. http://health.gov.on.ca/en/public/programs/drugs/ons/docs/methadone_advisory_committee_report.pdf. Page 11 details some of the most egregious concerns:

 Lack of access to comprehensive care in stand-alone fee for service clinics: Many of these clinics provide little more than urine drug screening and methadone prescribing and dispensing, leaving patients without access to primary care, mental health and addiction screening, brief intervention or counselling, and management of acute and chronic illnesses. Variation in the quality of clinical services: Some clinics require frequent attendance for urine drug screening and a brief office visit regardless of the state of recovery demonstrated by the patient. This is wasteful and can be harmful to patients’ recovery as attendance can be inconvenient and at times very challenging, particularly for those in rural and geographically isolated areas.”

Profit driven care has clearly moved the patient far way from being in the centre.
Some are sounding the clarion call of “another epidemic” happening where over 50,000 patients in Ontario are now on methadone https://substanceabusepolicy.biomedcentral.com/articles/10.1186/s13011-016-0055-4

Perhaps the most astonishing elephant in the room is “why are so many people in pain?” As a society we must look at the root drivers of this epidemic and that must also focus on prevention. We need to do some serious soul searching as a nation, as a community of peoples. We will need to address poverty, hopelessness, dislocation, safe housing, disintegration of community, lack of meaningful employment, adverse childhood experiences, resiliency, etc. if we have any hope of bringing this epidemic under control.

Comment

The links above are chilling. The video clip of Russell Pourtenoy is beyond belief.

It raises the question as to whether there is a growing amount of pain in the world as this US election suggests. The alternative is that doctors been adding to whatever pain and anxiety there is and to other dis-ease. While opioids and other pain-killers can give wonderful relief when given short term, as can benzodiazepines for anxiety, there is good evidence that given chronically opioids and benzos increase the amount of pain and anxiety we have – by altering physiological thresholds in the wrong direction.

Old style doctors, professionals, knew this. New style technocrats – we have the technology to fix your pain and anxiety – don’t know it.

It was and is an important part of caring for you to know the limits to what we can offer. But we now live in a world where choices like opioids are put on plate in front of you and your doctor and you are invited to choose. The right choice will supposedly deliver the jackpot – this is what marketing promises.

But somehow wisdom is never on the list of options – it can’t be – it’s not evidence based. It would be irrational to let you choose something that is not evidence based – like less medication or vaccines. That’s not a free choice.

Study 329: Republic to Empire

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Editorial Note: This post is from Sally MacGregor. In depositions and lectures I commonly state that I have had more support and information from colleagues working for industry than from clinical colleagues.

I loved the analysis of the derailment of medicine and research through the comparison between a Republican and Empire structure, and the take-over of the former by the latter (See Data WarsMinions No Longer). It highlighted a moral/ethical dilemma that I thought about throughout the riveting unrolling of Study 329 and its re-write. How do good people become corrupted?

Unless you buy into the idea that every one of the million or more people who have ever worked for a drug company is inherently lacking any moral compass, then it is imperative to wonder what happens such that one giant corporation can ruthlessly and without any expression of regret kill people in the interests of profit. Corporations aren’t some weird, otherworldly entity, a life form that has developed somewhere in the outer reaches of the galaxy, like the Daleks that terrified me at the age of 8. Corporations are people. From the chief executive down to the people who make the products on a factory line – they are all human.

One might attribute hubris, overweening greed and psychopathy to those at the very top but not, I think, to all the tens of thousands of employees. Thoughts of Nazi Germany spring to mind – the millions of ‘ordinary’ Germans who kept quiet, or turned a blind eye to the persecution of the Jewish people and the Holocaust. Maybe there is something similar at work, but it doesn’t quite fit the whole picture for me.

I can describe the last throes of Republic and the transition to Empire from a personal perspective: when my husband was offered his first job after university in the early 1980s, with a now defunct American pharmaceutical company, we thought he was going to be putting his biochemical training to good, practical purpose – albeit in animal medicines. Dealing with problems like enteritis in pigs or finding better ways of managing flea infestations in cats and dogs. It wasn’t exactly noble – but it seemed a useful way of earning a crust.

At that time, in the early 1980s, the animal health division was headed by a veterinary surgeon and many of the older scientists at American HQ were exiles from Nazi Europe. One, Irv, long since dead, had escaped from Germany in 1939, and met and married a fellow escapee who had got out on the Kindertransport scheme, here in the UK. They’d settled on the East Coast of the US, near the company’s research HQ in Philadelphia when Irv began work for the company as a chemist. They stayed there for 50 years. He was a scrupulously honest person who sometimes drove his colleagues mad with his meticulous attention to small detail. He was a Democrat through and through, and utterly horrified by the corporate dishonesty revealed during the Enron scandal. Music was his first love but he was always ready to talk politics, books and the theatre. He and his wife were humane, cultured people. They were also deeply grateful and loyal American citizens. The only time we ever differed was when they were both shocked to the core by a spate of flag burning in the early 1990: some protest or other in the US, which seemed perfectly low key, and quite amusing to us but really shocked them both. I wish I could discuss what has now emerged about the embedded corruption of Big Pharma with Irv.

During the 1990s the pharmaceutical industry sank into turmoil: Rob’s company was, I think, the first to be the subject of a hostile take-over by another US giant. It wasn’t a pleasant way to lose your job: there were over 3,000 people working at the UK base alone. The managing director and division heads in the US knew about the bid from AHP and had been fighting secretly for the company’s survival. They lost.

Rob and everyone else turned up for work one Monday to be met by personnel (as Human Resources used to be known) and representatives from the invading forces. All the managers were asked for their car keys, escorted to their desks and watched while they collected the photos of the kids and any other personal items. Then they were escorted rapidly off the site and sent home. Rob was back by 10 am. They were watched as they cleared their desks, in case angry and upset (now ex) employees scooped up papers with data and information that could be used in revenge against the invading Empire, or those with IT know-how might bugger the computer system with a rapidly inserted virus.

Redundancy the American way was a humiliating experience. And nothing was ever the same again. No one ever felt secure from that point onwards.

The UK site was raped and pillaged by the invading hordes, its commercial assets split and sold off to other companies in a frenzy of ‘reorganisation’. The UK base had been the second biggest employer in a large area, which has never recovered, economically. The site was gradually torn down; the land sold piecemeal for housing and where Rob’s office building stood there is now a Drive-Thru Kentucky Fried Chicken outlet, which employs 30 people on zero-hours contracts.

Some like Rob found another job, some never did. Rob went to work for a Swiss company that, within 6 months had merged with another to make, at that time, in 1996, the biggest pharmaceutical company in the world. We’d faced redundancy twice within a year. At the time we had two children about to go to university, our house like many others in the UK was in negative equity due to soaring interest rates and a collapsing housing market. We were financially vulnerable – like everyone else. When he was offered a job at HQ we had little real choice, despite the fact that it was in Switzerland.

Scientists and department heads were replaced by people with backgrounds in ‘business management’, and PhDs gave way to MBAs as the gold standard qualification for employment. Pressures grew to maximize profits: it would be foolish to pretend that loyalty to the company hadn’t always been a requirement, and that the profit margin had always came first – but from the mid 90s onwards the moderating influence of people like Irv just evaporated. The atmosphere at work became highly focused on meeting targets, deadlines, and budgets. There was simply no room for skepticism or questions: once you were perceived as awkward you knew you were likely to be kicked out.

The people who had to go out and sell the products on the frontline – the sales force – were probably subject to the most intense pressure of all. And were most vulnerable to being sacked. I read the Eli Lilly internal documents posted on Mad in America, detailing operation Viva Zyprexa! The Empire was out to conquer new lands – primary care physicians. The crib sheets detailing how the sales force were to lie about the fact that Zyprexa caused diabetes make grim reading (particularly grim for me maybe, as I developed diabetes and lipid dysregulation after years of Zyprexa/olanzapine). But as sickening is the appalling cheerleading at the ‘product launch’ meetings, the crude offsetting of one team against another and the psyching up of the reps to ‘Go out there and kick ass!’ OK, maybe reps aren’t the brightest people in the world but they were being groomed for aggressive selling, just as 16-year-old lads are groomed to kill when they enter the army. A macho, bullying environment where you either sink or swim. No room for people who might have qualms about the morality of what they are being asked to do and who have families to care for and mortgages to pay every month.

I asked Rob whether his company would have launched an internal damage limitation exercise like GSK/SKB did around the Panorama programs about paroxetine: Of course he said – and that it would have probably been successful. Employees would have been reassured that the company – their company- would never have deliberately harmed children. Success of the exercise would have been sustained partly through loyalty to the company but mainly because no one could afford to think too closely about whether it was true. Ask too many questions and you would be out on your ear with no chance of getting a reference for a future job.

If this sounds like an apologia for those working in the pharmaceutical industry – it isn’t. Some people do very bad things in any arena which are simply unforgiveable on any level: it’s hard to forgive the doctors and nurses who propped up a failing, abusive hospital in Mid Staffs by ignoring the pain and distress of patients. It’s very hard for me, remembering some of the casual brutality to which I was subjected as an inpatient in several mental hospitals. Even harder to think that the industry which bought our food and paid the bills wreaked such appalling damage on our family.

But unless you dig under the surface and wonder how such things happen, think about the context: the atmosphere of fear engendered by bullies who are probably being bullied themselves, then it’s too easy just to be angry. Anger is good – but not enough on its own. I think it’s important to put Study 329 in its cultural and economic context; try and peel away the layers of the onion and get at some understanding of why what happened, happened. Saying ‘oh that’s just capitalism in action’ is true, but in the end offers no chance of doing things differently at some point.

Empires fall, eventually, however powerful. I hang on to Abraham Lincoln’s words (although I prefer Bob Dylan’s version)

“You can fool all the people some of the time, and some of the people all the time, but you cannot fool all the people all the time”

Pharmaceutical Rape: Ending our Tolerance

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Editorial Note: This is the final part of Laurie Oakley’s series on Pharmaceutical Rape. All six parts with better imagery (no-one is enthusiastic about the Martin Shkreli images) and extra text are available here as a PDF Download.

Pharmaceutical violence

Pharmaceutical violence is a social issue as well as medical problem that demands a social response and medical intervention. To address what is now an ongoing human rights catastrophe and to help survivors recover from what has happened to them, it is important that we shift all of our focus to the systems that perpetrate pharmaceutical rape. We need to ensure that full responsibility is taken for the practices that lead to these iatrogenic harms. The essential way of assuring systemic change is to have an organized community response. This can occur through petitioning for a governmental task force, the enactment of new legislation, remedial actions through the courts, the initiation of comprehensive educational programs, new training protocols for health care providers, and various community-based efforts. Government officials, the courts, educational systems, medical professionals, and the public need to work together in order to bring about systems accountability. As we begin to fully recognize how pharmaceutical violence affects all parts of society, we can develop comprehensive responses as well as individual approaches to end all forms of pharmaceutical violation. Patients along with supportive doctors can come together to make this happen.

Medical allies

A medical ally is someone who commits to working toward ending the systemic practices that perpetuate pharmaceutical violence. An ally becomes willing to:

  • Educate oneself on the full scope of corporate pharmaceutical influence in government, academia, healthcare (including front groups), and the media;
  • Listen to and learn from the stories of people who have experienced harms;
  • Examine one’s own beliefs, prejudices, and assumptions about medical and mental healthcare systems, and the role of pharmaceuticals and pharmaceutical companies in healthcare;
  • Recognize potential feelings of guilt, shame, and defensiveness and work toward understanding what might lay beneath them, taking time to grieve/heal as part of the process;
  • Learn strategies for challenging the speech, behaviors, policies, and institutional structures that perpetuate iatrogenic outcomes via pharmaceutical influence;
  • Act collaboratively with survivors to change the systems that support pharmaceutical rape and pharmaceutical rape culture.

Hubs for support and activism

The RxISK Community

RxISK is an organization committed to breaking the silence around the social injustice of pharmaceutical violation. It is a go-to website for reporting and researching the adverse effects of medicines for patients, healthcare providers, and pharmacists. It is also a place where people can tell their stories, find support, and learn from the stories of others. The Data Based Medicine organization that sponsors RxISK was formed by an international team of medical experts who recognize the dangers inherent in medicine when public access to clinical trial data has not been granted by the multinational pharmaceutical companies. RxISK is a free, independent drug safety website where prescription drugs can be researched to see what side-effects have been reported in the 5.9 million reports submitted to the FDA, Health Canada, and RxISK. Users are able to download a RxISK Report to take to their doctors to discuss whether the effects they are experiencing might be linked to the prescriptions they are taking.

Mad In America

The Mad In America (MIA) Online Forum was launched in 2012 and is a growing international community of people interested in a plethora of topics surrounding the rethinking of psychiatry, including psychiatry’s embrace of medication prescribing. Central to MIA’s mission is to provide a platform for the voices of those with lived experience within psychiatry, voices that have historically been stifled. MIA offers professional continuing education (CEUs) and continuing medical education (CME) courses that are based on research that is free from commercial interests. Topic areas include psychiatric medications, long-term effects, and alternatives that promote long-term recovery and better overall outcomes. The project operates under the non-profit umbrella of The Foundation for Excellence in Mental Health Care.

Grief Recovery Institute Educational Foundation

The Grief Recovery Institute Educational Foundation (GRIEF) is a 501(c)(3) organization specializing in helping people who are dealing with grief. The organization is headquartered in Sherman Oaks, California, with locations in Canada, England and Sweden. Its mission focuses on disseminating accurate and helpful information about grief and the possibility of recovery from the impact of death, divorce, and other significant emotional losses. Grief Recovery outreach programs are facilitated by individuals who become certified specialists in this particular method and groups can be made available in all parts of the world.

Because the Institute’s founders, John James and Russell Friedman, recognize that sadness and grief are predictable and natural human responses to loss, they have spoken out against the medicalization of grief that often leads to the use of pharmacological treatments soon after a loss.

I include Grief Recovery here because of the significant losses many of us have experienced as a result of taking prescribed medications: the loss of health, loved ones, careers, dreams, trust, sense of safety, and more. Whether through the Grief Recovery Institute or some other method, it’s important that we take time to grieve. By joining with others who are also grieving we break our isolation and, not insignificantly, our sharing may inform others of risks in medicine everyone deserves to know about. 

Pharmaceutical Rape: Discrimination

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Ed Note: This is the fifth and penultimate post in Laurie Oakley’s Pharmaceutical Rape series.

Pharmaceutical violence is a social injustice that can intersect with every other type of oppression and form of discrimination. Dehumanizing in its own right, pharmaceutical rape (and the cultural/medical denial of it) compounds the distress already experienced by persons in socially marginalized groups as well as in individuals who are dependent, frail, or otherwise in their most vulnerable states. Many (but not all) who experience other forms of institutionalized oppression turn to healthcare systems where they are too often subject to retraumatization and further stigmatization.

This includes:

  • Women – Pharmaceutical harms could be considered a structural form of violence against women alongside domestic violence and sexual assault. Women are specifically targeted with advertising for SSRI anti-depressants marketed as several different medications (that are not outwardly identified as SSRI’s) for common issues such as premenstrual discomfort and hot flashes. Certain birth control products, hormone replacement therapy drugs, medications to prevent osteoporosis, and other medications are encouraged for widespread, routine use while the FDA’s post-marketing surveillance system (MedWatch) is failing. Risks of harm are therefore downplayed and patient reports of harms are often met with skepticism. The life-injuries resulting from cavalier prescribing practices, and especially the systemic denial and trivialization of harms, have a deleterious effect on women, and reinforce the overall oppression of women in society.
  • Pregnant Women (and the unborn) – Anti-depressant use in pregnancy is known to double the risk for miscarriage and to cause birth abnormalities. These risks are downplayed and anti-depressants are routinely prescribed to pregnant women. Narcotics are also commonly prescribed to women for pregnancy-related back pain leading to neonatal complications for newborns. Where adverse-effects of medications are haphazardly overlooked while prescribing is encouraged, gross physical violation is occurring. Industry failure to disclose known drug dangers affecting the unborn child can be considered a covert attack against the bodies of women and children for the purposes of monetary gratification.
  • Children – The widespread and routine, off-label prescribing of psychiatric medications to children when no tests have been performed in this population results in pharmaceutical injury that is difficult to quantify. While some harms are obvious, the full effects of these drugs on large numbers of children in their crucial stages of development are unknown. In 2009, approximately 1% of children in the general population in the U.S. were prescribed psychotrophic medicines for conditions like attention deficit disorder and depression; 2% of children in families receiving Medicaid were prescribed these drugs, compared to an estimated 12 to 13% of children in the foster care system who are medicated with powerful antipsychotics and other mind-altering medicines. Since 2009, these numbers have only continued to rise. This structured pattern of chemically treating the emotions of children in lieu of alternatives (such as seeking to understand the root of behavior and supporting children non-pharmaceutically), constitutes a form of child abuse that is a moral injury to individuals, their families, as well as to whole societies. A critical mind will also note that all children are being targeted with an ever growing list of vaccination requirements that are developed by and financially lucrative for the industry-government-medical trade alliance that is routinely failing to warn the public and patients about known, significant risks.
  • Individuals with Disability – Pharmaceutical violation against the disability population is common as the medicalization of disability has led to increased prescribing in this subset. Societal structures and attitudes toward disability impose daunting barriers that these individuals struggle against daily. Pharmaceutical harms add to the struggle and impair one’s ability to address these and other institutionalized oppressions. Those with developmental disability in particular are subject to the systemic, gross overprescribing of psychiatric and other drugs that can tragically end one’s quality of life and in many cases lead to an early death.
  • Persons of Minority Race or Ethnicity – Racial and ethnic minorities within the dominant society are subject to institutionalized oppression that can result in profound, insidious trauma. Both obvious and not-so-obvious aggressions have significant health effects for individuals who end up in medical and mental healthcare systems where many receive additional blows. Unacknowledged pharmaceutical violation is a compounding factor in the physical and psychic trauma affecting minorities. It lends to the further destruction of family and community bonds that are essential for addressing and healing from massive social injustices.
  • Persons Identifying under the LGBTQIA Umbrella – Inequity and discrimination affecting transgender and gender non-conforming people make them particularly vulnerable for multiple types of structural violence, including pharmaceutical violation. Familial and/or societal rejections culminate in both physical and mental health consequences for which individuals are often prescribed medications. Many are further disempowered by adverse out-comes while receiving medical treatments. This often unrecognized harm has an overall dampening effect on the collective health and political will necessary for group members’ ongoing struggle for social justice and equality.
  • The Elderly – Persons become increasingly vulnerable with age: many older people face neglect, risks of elder abuse, and exploitation. The systemic prescribing of multiple medications (polypharmacy) in this population amounts to an additional serious form of abuse that is rampant and ongoing. Many lives are severely altered and/or prematurely ended by such prescribing. Though medications like anti-psychotics and benzodiazepines are known to put the elderly at risk, these and other questionable drug treatments are still being used at alarming rates. Serious abuses in their own right, these practices make the elderly (if they survive) more vulnerable to all other risks.
  • The Incarcerated (including nursing facilities and psychiatric hospitals) — Pharmaceutical rape in institutional settings is especially insidious as power imbalances are intensified and harms are often delivered through systemic coercion and forced medicating. Medication compliance is often a requirement for one to be considered to have “good behavior.” Many elderly in nursing facilities have been routinely prescribed dangerous, antipsychotic medications to control behaviors for the convenience of agency staff. Psychiatric survivors tell harrowing stories of having to endure the adverse effects of psychiatric drugs (including discontinuation syndromes after cessation) when medications have been forced upon them in institutionalized settings.
  • Persons labeled Mentally Ill (including victims/survivors of other abuses or violence) – Those who are prescribed psychiatric drugs are generally the hardest hit by pharmaceutical violence. Psychiatric drugs often have effects on cognition that make it difficult for the person to recognize the full scope of what is happening to them. Many are lost in mental healthcare systems for years while suffering the effects of multiple drugs. The stigma attached to being labeled with mental illness often causes one to lose esteem in the eyes of society, medical professionals, and even family members who may deem one less credible. This dehumanizing reality locks an individual into a cycle of further distress and additional treatments with psycho-tropic medications. Tragically, many feel helpless to address this injustice as these medications can wreak havoc on the mind and body, therefore leaving one with little agency with which to advocate for change.
  • Disabled Veterans – Prescribing rates are high for active military members and veterans alike as doctors attempt to treat service related conditions like chronic pain and post-traumatic stress. There have been serious concerns about sky-rocketing suicide rates in returning veterans in connection with high levels of psychotropic drug prescribing as well as concerns about the over-prescription of powerful narcotics in the absence of offering alternatives. Many veterans who had looked forward to returning to the safety of home have ended up spending their post-active duty years overwhelmed with effects of medications.
  • Men with “Middle Age” Issues – While not a minority group, it is worth mentioning that drugs developed and targeted to men dealing with things such as hair loss and erectile dysfunction can carry significant risks that cause damage far exceeding the original problem. For instance, Propecia (finasteride) has led to permanent sexual dysfunction in some individuals. A recent study strongly suggests that men who take drugs like Viagra for sexual performance have a doubled risk of developing malignant melanoma, an aggressive skin cancer. Too often, the dangers of these medications become clear years after they have been approved for use, which is too late for many individuals.
  • Participants in Clinical Trials – Again, not a minority group per se, however those who participate in pharmaceutical research studies pay for the advancement of science with their health and sometimes with their very lives. The violation occurs when the clinical trial data gained from those harms is altered or hidden in favor of more positive data. This positively spun science is then used to get medicines approved and widely prescribed to the general public. The flagrant mishandling of scientific data, from tampering in clinical trials to its central role in the ongoing education of doctors, is the very back-bone of pharmaceutical rape.

Industry decision makers and those who collude with them deflect attention from the systemic practices that lead to pharmaceutical rape by pointing to the life-enhancing and lifesaving potential of treatments that have been developed to benefit millions. It is true that nearly all of us have benefited from the innovations of modern medicine. It is also true that a failure of adequate warning, as well as system-wide refusal to acknowledge common adverse outcomes, has led to destructive, life-altering consequences for millions. Those who are injured have become a hidden class, a forgotten and often persecuted minority. Given that so many had been seeking relief from the effects of other oppression and marginalization, this constitutes nothing less than a reprehensible humanitarian disaster. Meanwhile, the medically privileged do not have to think about the ways the systems that benefit them deliver life-altering outcomes to others, and this willful oblivion is the basis upon which all social injustice thrives. While this type of injury can happen to anyone, it is not always recognized when medication is making one sick.

Internalization of pharmaceutical oppression

Internalization occurs when people who experience adverse events believe in the misdiagnoses of their symptoms and end up embracing additional labels and further treatment for their medication side-effects. Those who have internalized pharmaceutical oppression alter their attitudes, behaviors, speech, and self-concept to reflect an acceptance of a pharmaceutically-induced and medically-maintained sick role. The internalization of this manufactured reality can create low self-esteem, self-doubt, and even self-loathing as the individual continues to experience perpetual and worsening illness despite one’s commitment and efforts to become well. (Especially true with diagnoses of a stigmatizing nature, e.g. psychiatric labels). Internalization of pharmaceutical oppression can also be projected outward as fear, criticism, and distrust of survivors and others who speak out and/or challenge the systems in which they receive care.

Statistics

Peter Gøtzsche, co-founder of the Nordic Cochrane Collaboration in Denmark, the world’s foremost body in assessing medical evidence, has estimated that adverse-effects of medications that are used as prescribed are the third leading cause of death in the United States and Canada after heart disease and cancer. Known cases are believed to account for hundreds of thousands of deaths each year.

Serious harm seems to be 10 to 20 fold more common than lethal harm. An estimated 700,000 events are reported per year, less than one third of the estimated actual occurrences. While drug side effects are said to be a leading cause of death, disability and illness, it is estimated that only 1 – 10 percent of adverse events are ever reported.

Reporting

The FDA’s post-marketing surveillance system is underused, underfunded and in serious disarray. While MedWatch is said to be an important tool for monitoring the effects of medications after limited studies and quick FDA approval, doctors are not trained to utilize this as an important aspect of their work. Only 1 to 10 percent of adverse-effects are ever reported. Reasons doctors cite for not reporting include uncertainty as to whether the drug caused the symptoms, not wanting to look foolish for reporting, and a feeling that they are already too busy. Because the missing information does not get shared and acted upon within the medical system, patients end up reporting to one another “underground” via internet message boards and other forums set up to support patients who cannot find help within medical and mental healthcare systems.

Investigating

When an individual reports a life-altering outcome, very rarely is there any kind of investigation. Pharmaceutical injuries that are not denied as such are simply regarded as flukes or mistakes. There has been no effort made for a serious and thorough investigation into the systems-wide problems that enable and encourage widespread pharmaceutical harms. No governmental task force or entity has taken responsibility for uncovering the full extent of the problem, advocated for the passing of legislation, or for any other changes to address these ongoing harms. Instead, pharmaceutical companies are occasionally found guilty of various errors, are made to pay fines, and then go on to rape again and again.

Prosecution and conviction

Justice is rare to non-existent for victims of pharmaceutical violence. Legal actions to date have done little to significantly alter the industry-government-medical behavior that is so devastating to individual patients and their families. The structured practices that systemically deliver harms remain in place while drug companies pay occasional fines and continue to earn billions.

Prevention

Currently there is nothing in place for the prevention of widespread pharmaceutical harms. Despite the appearance of drug industry cooperation, efforts for prevention via full transparency in the sharing of clinical trial data have been met with resistance by pharmaceutical companies. For this and other reasons, the process of informed consent in the medical setting fails. Alternatives to drugs, devices, and medical procedures are not lucrative options from a business standpoint and so doctors, by and large, have little incentive to focus on the safer alternatives they could be offering patients.

Treatment

There are no systems in place for treating those who report harms. Treatment begins with listening and recognition. Medical systems in denial currently offer victims very little in the way of validation, let alone knowledgeable and compassionate care. Many of these manufactured illness require immediate medical intervention which is sadly non-existent in most places. Person-centered protocols for discontinuing psychiatric medications are urgently needed for patients who want and/or need to stop taking them. Many mainstream doctors remain unaware of the dependency potential of several medications they routinely prescribe.

Pharmaceutical Rape: Doctors still know best

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Editorial Note: This is part 4 of Laurie Oakley’s series on Pharmaceutical Rape.

Many who experience life-altering, adverse outcomes after taking their medicines as prescribed do not receive acknowledgment of what they have experienced, let alone the medical care they need. Medical systems do not recognize many treatment related outcomes and patients are therefore denied knowledgeable, compassionate treatment for the iatrogenic illnesses they experience after following doctors orders. While health practitioners can generally make a good living within healthcare systems, thousands of patients end up on disability after adverse pharmaceutical outcomes. Without the support of a doctor to verify one’s condition, there are others who, tragically, end up on the streets.

Pharmaceutical privilege

The privilege of one who benefits within a system that uses pharmaceutical products to improve one’s own life and well-being while denying or remaining oblivious to harms suffered by others within same system.

Pharmaceutical oppression

Deriving benefit from and/or being complicit with healthcare systems while refusing to consider or acknowledge pharmaceutical harms suffered by others; routinely ignoring, denying, and/or explaining away harms reported by others.

Medical fragility

In regard to pharmaceutical rape, this is an emotionally reactive, often arrogant stance that is taken when an individual (medical professional or otherwise) is exposed to suggestions of widespread iatrogenic drug induced harms. It is defensiveness on the part of the individual who often exhibits behaviors that include automatic skepticism, extreme unease, an unwillingness to listen, impatience, condescension, anger and argumentativeness.

Persons who demonstrate this fragility are unable to consider or acknowledge a medical reality that challenges a status quo that benefits them. They automatically discount information or ideas that make them uncomfortable and often attack those who are making claims. This stance is rooted in deeply ingrained ideas about the power of science and the prestige of the medical profession, as well as in the “goodness” of modern medicine. For many, one’s very identity as a doctor or as a patient depends upon viewing the systems in which one gives or receives care as safe places of care. Reflecting on or seriously considering the many ways people are harmed by pharmaceutical products is intolerable, as one believes these kinds of things “just don’t happen” in modern medicine.

Medical professionals who think in this way dissociate themselves from the idea of systemic, iatrogenic harms, and instead think of the injuries they do recognize as solitary incidents resulting from the “bad” behavior of others (whether the patient, drug industry or other medical professional). Doctors tend to be high achievers with a perfectionist bent. While attaining the high degree of competency required to practice medicine, many also acquire a deep sense of earned superiority. Any challenge to this core identity, or to the systems in which one is enmeshed, is intolerable.

Story: doctors in denial

I never set out to become a medical heretic. That job was ascribed to me by certain pharmaceuticals that are said to work wonders for the majority of the human race, but not for me: miracle drugs like the SSRI anti-depressants and the ever safe benzodiazepines. So when I described to doctors all that had happened to me while on these medications, most stared at me as if I’d just grown a second head. My report, it seemed, was over-the-top.

One doctor congratulated me for kicking my “benzo habit” even though I had told her I’d taken only a small dose as prescribed by my doctor. When I tried to explain how tolerance withdrawal symptoms had been repeatedly misdiagnosed as somatization, and for that I had been given more psychiatric drugs over a period of several years while my physical and mental health deteriorated, she may as well have plugged her ears and shouted, la la la la la! Instead, she said, “uh huh,” before opening my chart and recording my history with benzodiazepines in the illicit drug use category.

After she left the agency, I started seeing a different doctor who listened to my stories in utter amazement. My experience was unlike anything he had ever heard in his many years of prescribing psychotropic medications. When I suggested that my ongoing, chronic insomnia might be a residual effect from having been prescribed a benzodiazepine for eight full years, he responded by saying there was no way of knowing for sure, and at one point even asked, if the benzodiazepine had helped me to sleep, why didn’t I just keep taking it?

Time for a new doctor.

I jumped from the frying pan into the fire. This new psychiatrist had a penchant for sighing and rarely looked at me. He mostly just shuffled papers and wrote things down. He wasn’t interested in knowing what my experiences with medications had been, my complex history, or anything else about me. He was interested in prescribing a certain medication for my insomnia which he pushed even after I had educated myself about side-effects and informed him I didn’t want to risk it. I did finally end up trying the medicine, which I didn’t like and didn’t continue. Then his impatience with me turned into disgust as he no doubt thought my fear of taking medications was irrational. He went on to tell me that millions of dollars and years of study went into the research and development of the drugs he prescribed and he was confident that they were safe.

—Rxisk. January 13, 2015

Pharmaceutical rape apology

An umbrella term for arguments suggesting that serious pharmaceutical violation does not exist or that it is not a widespread cause for concern. “Apology” in this context means defense or justification, like in Christian apologetics, not as a statement expressing regret.

Pharmaceutical rape apologists frequently view patients and doctors who recognize serious adverse events as misguided persons who are anti-science, conspiracy theorists, anti-vaccinationists, or some other type of deviant. Pharmaceutical rape apologists disbelieve pharmaceutical harms because evidence of harm is not forthcoming in the scientific literature. They deny any adverse outcome that does not conform with harms already commonly noted within the medical establishment, and dismiss reports of adverse effects when they have witnessed the drug in question work well for others.

Pharmaceutical violations are dramatically under-recognized. There is an enormous amount of misunderstanding and stigma associated with people who claim to have been harmed. Physician skepticism and outright denial prevents victims from having their claims validated, let alone officially reported to regulatory agencies. Instead of gaining support from a doctor to make sense of what has occurred, adverse effects are often trivialized or misdiagnosed as separate conditions (usually needing additional treatments).

Allegations of false reporting of injury often occur (within the realm of childhood vaccine administration, for instance). The medical establishment maintains that most pharmaceuticals, with rare exception, are safe and effective when taken as prescribed. There is very little room left for discussion of even the known risks of harm. Serious adverse events are said to be “rare,” yet when they occur, victims and/or their families often find it difficult if not impossible to convince medical authorities that the event is related to medication.

Pharmaceutical rape myths

  • The FDA protects the public.
  • Drug safety is assured through hard science.
  • Doctors have access to clinical trial data and are aware of all known risks.
  • Serious adverse events are extremely rare.
  • Development of drug dependence or addiction is unrelated to accepted prescribing protocols.
  • Adverse events are always recognized by doctors and a connection to the drug is normally made.
  • Harmful drugs are always recalled.
  • “Safe” drugs are always safe.
  • Pharmaceutical injury occurs only as a result of medication error or malpractice.
  • All vaccines are completely safe and effective.
  • A good relationship with one’s doctor protects one from a pharmaceutical injury.
  • Individuals who make claims about pharmaceutical harms are against all medications and do not value the contribution of pharmaceuticals to society.
  • Those who warn about pharmaceutical products are anti-science, refusing to listen to reason or to think rationally.

Secondary victimization

Secondary victimization is the re-traumatization of the pharmaceutically injured through negative social responses from medical, mental health and/or legal professionals, as well as from others (sometimes including one’s own family). This is a nearly universal experience for those who have been harmed and may be especially insidious for those who are diagnosed with mental illness, chemical dependency, as well as the vaccine injured (and their families). Behaviors associated with secondary victimization include:

  • Societal as well as individual denial of pharmaceutical harms. The tendency to remain oblivious in the face of evidence of harm.
  • The trivialization of pharmaceutical violation. A response to harm denying that real damage was done.
  • Skepticism and distrust of those who report harms instead of recognizing the harm potential of the treatment.
  • The misdiagnosis and false labeling of individuals who have experienced adverse effects from their medicine.
  • Reducing the patient to an “unusual anecdote.” Accepting evidence from controlled clinical trials only, to the exclusion of what the patient says about effects of a drug treatment.
  • Failure to report a patient’s adverse events.
  • Victim blaming: when the victim of a crime or any wrongful act is held entirely or partially responsible for that harm. It is your fault you were hurt because you did x, y, z. If you hadn’t done x, y, z, you would not have been harmed. You went to the doctor, you asked for medication, you consented to the treatment, you kept going back to the doctor, you didn’t do your homework, you should have known better, you should have listened to your body, I knew better and I didn’t do those things.
  • or, what you experience is your own illness: caused your poor diet, your lifestyle, your lack of exercise, your use of alcohol or other drugs, your age, your family genetics, etc. Claims are easily neutralized or discredited because health is subjective and adverse effects are easily attributed to other causes.
  • or, you are at fault because you are a drug addict, (even though the addiction came about through or was aided by what is considered legitimate prescribing).

Pharmaceutical violence typically leaves the individual with an array of new problems that were not present when the treatment in question was first initiated. Many hurtfully deny or disbelieve the iatrogenic nature of the person’s condition, and additional physical and/or mental effects caused by treatments often bring about additional stigmatization. The alienation suffered as a result of these acts is deeply felt:

“I am a wreck after 8 years on Effexor, but of course once on the drugs your credibility is gone, so who listens to a person with a psychiatric “label” even though the label is false? Not only victims, we are totally ignored, while the psychiatrists somehow get put on a [false] pedestal. Challenge them at your own risk of getting a “label.” No other doctors on earth have this sort of irrational power; just because they judge someone as this or that, often in a 10 minute appointment. I would like to know of just one person who ever went to a psychiatrist and didn’t get [labeled].”

—Commenter, DavidHealy.org. May 14, 2015

Post traumatic stress reactions and pharmaceutical violation

Unlike sexual rape, pharmaceutical violations almost always occur over a more prolonged period of time. Where a sexual assault survivor may experience a post traumatic stress reaction in the months and/or years following the event, pharmaceutical victims oftentimes experience these physical and psychological symptoms as adverse-effects while taking psychotrophic medications. Prolonged discontinuation syndromes upon stopping some medications are common and may overlap with a post-traumatic stress reaction from taking psychotropics. The trauma experienced from pharmaceutical violation can include disruptions to normal physical, mental, emotional, cognitive, and interpersonal behavior. Whether from a discontinuation syndrome or from the medications themselves (which are often reinstated to avoid this withdrawal-like condition), pharmaceutical survivors end up suffering, often for many years, with symptoms identical to PTSD.

Effects associated with both sexual rape and pharmaceutical violation include but are not limited to:

  • Diminished alertness
  • Numbness
  • Dulled sensory, affective and memory functions
  • Disorganized thought content
  • Vomiting
  • Nausea
  • Paralyzing anxiety
  • Pronounced internal tremor
  • Hysteria, confusion and crying
  • Bewilderment
  • Acute sensitivity to the reaction of other people
  • Profound inner turmoil
  • Poor health in general
  • Sense of helplessness
  • Hypervigilance
  • Inability to maintain previously close relationships
  • Experiencing a general response of nervousness known as the “startle response”
  • Persistent fear and or depression at much higher rates than the general population
  • Mood swings from relatively happy to depression or anger
  • Extreme anger and hostility
  • Sleep disturbances such as vivid dreams and recurring nightmares
  • Insomnia, wakefulness, night terrors
  • Flashbacks
  • Dissociation
  • Panic attacks
  • Reliance on coping mechanisms, some of which may be beneficial (e.g., philosophy and family support), and others that may ultimately be counterproductive (e.g., self-harm, drug or alcohol abuse)
  • Sense of personal security or safety is damaged
  • Feel hesitant to enter new relationships
  • Unable to re-establish normal sexual function
  • Discontinue previously active involvements, social groups
  • Acute somatoform disorders (physical symptoms with no identifiable cause)
  • Physiological reactions such as tension headaches, fatigue, general feelings of soreness or localized pain in areas of the body
  • Dissociation and trying to get back to life before the assault
  • Fears and phobias
  • Nightmares, night terrors
  • Violent fantasies of revenge may arise
  • A fear of being in crowds
  • A fear of being left alone anywhere
  • A fear of going out at all, agoraphobia
  • Paranoia
  • Suicide

Oliver’s story

Prior to taking Seroxat (Paxil), I had symptoms of tiredness and nausea. My general practitioner (GP) diagnosed me with anxiety and prescribed an anti-psychotic drug. Within 3 days I couldn’t eat or sleep due to severe agitation. I was vomiting, pacing the floors, and crying uncontrollably. My GP diagnosed this as an anxious state and started me on Seroxat. (During this time it was discovered that I was badly anemic and needed a hysterectomy due to severe blood loss. This was more than likely the cause of the original tiredness and nausea). Even though I had informed my GP of heavy bleeding, etc., it seemed easier for him to give my symptoms a label of anxiety and start me on a roller coaster of dangerous psychiatric drugs .

I remained on Seroxat for 6 years as every follow up I was just given more prescriptions. I decided to take myself off the drugs during my 6 years of use with disastrous consequences. I became obsessed with trying to hang myself and couldn’t function due to multiple horrendous symptoms, both mental and physical. Needless to say, I admitted myself to hospital as I had no idea what was happening to me. [I] felt better after Seroxat was reinstated.

I then decided to wean off again with instructions from my GP to taper for 9 months using alternate days[…]That was September 2004. I am now 8 years drug free and still living with damage incurred from taking Seroxat. The first 3 years of quitting were hell. Symptoms included anxiety, panic attacks, paranoia, agoraphobia, hives, itching, tingling, agitation, aggression, suicidal thoughts, homicidal thoughts, weak muscles, vision coordination issues, cognitive problems, dizziness, nausea, headaches, manic behaviour, racing thoughts, gastric upset, balance problems, burning sensations, heartbeat irregularities, palpitations, night sweats, insomnia, and total feelings of despair.

Eight years later to date I still have all these symptoms randomly. They come and they go, and although not as intense as the first years, it still gets pretty scary at times. Is this anything like prior to taking the drugs? No. I felt tired and nauseous. Was it worth taking this drug? No. The side effects of insomnia, muscle pain, blurred vision, weight gain, and feeling null and void of everything was worth nothing. Zero. Zilch. Will I ever recover? Who knows? GP’s offer no validation or support. Will anyone be accountable for the damage I have? No. Everything is denied.

—Rxisk.org. August 29, 2012

Pharmaceutical Rape: The Good Patient

Useless_Science

This is part 3 of Laurie Oakley’s series on Pharmaceutical Rape.

In our society

We learn a social script in which a “good patient” obeys the orders of doctors as authority figures. The ideal patient is a passive patient, subordinate to the physician. We are expected to relate to doctors as experts whose judgment we should trust when being prescribed medication. Because of drug industry influence, this everyday scenario invites pharmaceutical violation. Thus a pharmaceutical rape culture exists that fosters widespread harms to individuals. In those instances where a patient ends up recognizing that something has gone wrong, he or she will often place full blame on the doctor without recognizing that entire systems of individuals are ultimately responsible for the damage, with participants in those systems remaining far removed from the consequences of their actions. Only rarely does a victim of this kind of offense see the inside of a courtroom. Lawyers who represent the giant pharmaceutical companies will then scrutinize a victim’s traits and behaviors in an attempt to prove personal factors such as poor health habits or an individual’s own underlying illness are responsible for the condition.

Between 1999 and 2004, the heavily marketed pain reliever, Vioxx (rofecoxib), caused an estimated 88,000 heart attacks and strokes, with an estimated 38,000 deaths. After the drug was withdrawn from the market in 2004, lawsuits by patients and their families against the drug manufacturer, Merck, were beginning to pile up. One of the plaintiffs was the wife of Jamie Gregg:

“Jamie Gregg, a 32-year-old construction worker from Katy, Tex., and father of three boys, had just reported for a job at Houston’s Hobby Airport when he collapsed, apparently from a heart attack.

“He was rushed to the hospital, where a medical team saved his life. But his brain had been deprived of oxygen for so long that Mr. Gregg is now in a nursing home in Lufkin, Tex., fed through a tube, unable to move more than his head or to utter more than a few syllables[…]

“Mr. Gregg, who had undergone a series of back surgeries, had been taking a high dosage of Vioxx, 50 milligrams a day, for four years to treat back pain. So the day after Mrs. Gregg heard that Vioxx was being withdrawn from the market, she walked into the offices of Goforth Lewis Sanford, a law firm in Houston. That firm, along with W. Mark Lanier, a prominent Houston plain-tiffs’ lawyer, are now preparing a lawsuit against Merck.

“‘[Vioxx] has got to be the reason,’ she said[…]

 “But the plaintiffs’ lawyers face a big obstacle in convincing juries that a person’s heart attack or stroke was caused by Vioxx, because many people suffer such attacks for many reasons[…]

“Thomas B. Moore, a Los Angeles lawyer who represents pharmaceutical companies in such matters, although not Merck in this case, predicted that even the estimate by Dr. Graham of the F.D.A. that the drug caused more than 27,000 deaths and heart attacks would not help plaintiffs win cases. “‘The problem is that David Graham can’t name one of them,” Mr. Moore said. “He can’t name one of those 27,000.'”

—The New York Times. November 14, 2004

It is no remedy for pharmaceutical companies to pay out large settlements in instances where survivors are able to prove injuries were caused by medications that were prescribed with undisclosed risks. Since the problem lies in a culture that trusts in doctors who prescribe medicines to fix health problems while patients remain largely passive and dependent, one solution is to look at pharmaceutical injuries, in part, as a product of this authoritarian/passive relationship and to begin by addressing it at a personal as well as cultural level.

Social conditioning through direct to consumer advertising firmly establishes this pharmaceutical rape culture. When individuals are daily encouraged to “talk to your doctor,” the implicit message is that the starting point for good health is regular visits to a doctor who will prescribe medications to be taken regularly. Accustomed to turning to pharmaceuticals for what ails us, we have all but forgotten that all medicines are poisons which pose risks of harm, even when instances are rare.

The mother of three-year-old, Brianna Maya, was advised by a pediatrician to give her daughter the over-the-counter medicine, Children’s Motrin (Ibuprofen), for a fever and cough. The girl developed a rash but since her mother was not aware that this was a side-effect, she continued giving her daughter the medicine. As ABC News reported:

“Over the next few days, a fine rash on her body and mild redness around her eyes morphed into something insidious: a rare, painful and potentially fatal skin reaction that burned and blistered her body inside and out, blinded her in one eye and left her fighting for her life in a burn unit 1,000 miles from home.

“‘It was like something you see in a science fiction movie,’ said her mother, Alicia E. Maya Donaldson, 34, an assistant professor of social work at the University of Tennessee at Martin, as she recalled how her daughter looked at the time[…]”

“Brianna, now 13, has spent the last decade living the painful aftermath of SJS/Tens: She has undergone repeated eye surgeries and suffered recurrent eye and lung infections. Last summer, she developed seizures stemming from oxygen-deprivation during the worst of her illness. One of the ironies is that doctors have had difficulty controlling her seizures because anti-seizure drugs can trigger Stevens-Johnson syndrome. Because of vaginal scar-ring, “she will never be able to have normal sexual relations or bear children,” her mother said[…]”

Dr. Bernard Cohen, director of pediatric dermatology at Johns Hopkins Medical Institutions in Baltimore, reminds us:

“All drugs have risks, whether they’re topical, oral or intravenous, The patient takes some risk, the nurse-practitioner or physician prescribing it takes some risk. Sometimes pharmaceutical companies are at fault.” In the case of Stevens-Johnson syndrome, “this is one where everybody should take some responsibility for it.”

—ABC News, June 3, 2011

The drug manufacturer in Brianna Maya’s case was ordered to pay her family $10 million for her injuries because the label on over-the-counter Children’s Motrin had not warned of this rare but life-threatening condition. Stevens-Johnson syndrome had been a known risk, fully acknowledged by the drug company; the prescription version of Children’s Motrin had always carried a warning. Yet when the risks are this rare, safety information is brushed aside.

The cultural tendency to focus only on a drug’s benefits has been set in place by pharmaceutical companies and reinforced by the medical establishment; this denial of potential risks prevents patients from being able to make an informed choice. While many of us benefit from “safe” medications, children like Brianna (and her family) pay the horrendous consequences alone.

Pharmaceutical rape culture

A pharmaceutical rape culture is a culture in which iatrogenic harms are pervasive and normalized due to societal attitudes about medicine and health care. It is a complex set of beliefs that tolerates the commercialization of healthcare and supports everyday harms in medical and mental health care settings. It is a society where harm is only acknowledged as rare, yet is accepted as necessary, and inevitable. In a pharmaceutical rape culture, doctors and patients unknowingly trust what are oftentimes pseudo-scientific facts put forth by drug makers about drug safety. Both doctors and patients end up disbelieving the reality of the adverse events they see, and instead believe alternate explanations for such events. A pharmaceutical rape culture condones widespread medical harms that are rooted in reckless practices within the industry-government-medical trade alliance because multiple societal systems are involved in producing, reproducing, and disseminating “information” about pharmaceutical products. This “information” sat-urates the public and reinforces that alliance.

A veteran’s story

Jeremy Brooking was a U.S. Marine who, after surviving a sniper attack in Iraq, was sent to Camp Lejeune, NC, to recover. It was then, he says, that the real battle began. News correspondent, Bob Segall of Indianapolis, reported in April of 2014:

“The battle Brooking is talking about is an addiction to pain killers. Military doctors prescribed him 22 different medications – many of them powerful narcotics like Oxycontin and Hydrocodone – to numb his chest pain. A VA hospital gave Brooking 43 pills a day. That’s nearly 1,300 pills a month. More than 15,000 pills a year. A 1-month supply of medication filled a plastic grocery bag.

“‘I lost three years of my life where I barely remember anything,’ he said. ‘I’d sleep 23 out of 24 hours of the day because of those pills. It destroyed our family. It really destroyed me.’”

His wife, Tia, who witnessed him turning into a different person, decided to consult with medical staff at the VA to inquire about alternative treatment options.

“The doctor said ‘Your husband is never going to get better. This is how he’s always going to be.’ And I said ‘What can I do?’ And he said ‘I can write you any prescription you want. Tell me what you want, and I’ll write it.’ He said ‘I’m in the business of writing prescriptions.’ I remember him saying that, and I said ‘I don’t want prescriptions. I want him to get better,” she recalls, shaking her head. “It was horrible. Sometimes […] when I got home, I thought he was going to be dead.”

Jeremy Brookings did eventually break free from his addiction to narcotics after he gave up on the VA’s pain program and found a doctor willing to try other options. But thousands of returning veterans have lost the quality of their lives, while many others have died, as a result of the prescribing practices at the VA.

Dr. Pamela Gray, a VA Medical Center doctor in Hampton, Va., from 2008 to 2010, advocated for alternatives to the routine practice of prescribing narcotics but was told to stop by VA Administrators:

“I was told by the department chair of internal medicine to think twice about not prescribing these narcotics,” the doctor said. “I was ordered to write these drugs or be fired. I was ordered, as a physician with 25 years of experience, by a non-physician to do something that was medically incorrect. That is an intolerable position.”

Gray recalled a severe shortage of qualified pain specialists within the VA yet the idea of creating pain management programs was rejected by supervisors. Treatments other than the prescribing of narcotics were not a cost effective option for the VA so doctors continued to over-prescribe.

WTHR 13 Indiana’s News Leader. April, 2013

Medical/pharmaceutical objectification/commodification

An attitude about patients that places primary value on what treatments or procedures can be employed for reimbursement or compensation. Reducing the patient to a commodity with value being limited to financial usefulness.

Many in our communities, from the most vulnerable children to military veterans, end up experiencing serious medical consequences and unacknowledged suffering after trusting a doctor’s advice. This is a literal type of rape that is downplayed by medical practitioners, regulators, and the entire healthcare systems that are charged with our care.

Pharmaceutical Rape: Cast of Characters

Remedios Varo

Ed Note: This is part two in Laurie Oakley’s Pharmaceutical Rape series.

WHEN IT COMES to pharmaceutical rape, it is no simple task to determine just who the “rapists” are (or to determine the safety or lack of safety of the treatments that they promote), but we are certain that the behavior exists, and that decisions are being made with no regard for the lives that are damaged and/or ended by the reckless promotion of pharmaceutical products. This type of industry behavior, and the behavior of all who are in collusion with it, makes it clear that the untold suffering of millions is not too great a price to be paid for the satisfaction these individuals get from their advancing prestige and monetary gain.

The Violators (knowingly) – Corporate and governmental decision makers involved in the processes of production, approval, and marketing of said products; academic researchers involved in the study of said products while receiving industry funding; those psychiatrists, medical doctors or other professionals receiving financial compensation for lending their names to ghostwritten articles and other misleading materials about said products. (Key opinion leaders).

In the case of pharmaceutical rape, the “DNA” or proof that links industry behavior to individual injury is often found in a company’s internal documents. For example, e-mails and memos from the makers of the blood thinner, Pradaxa (dabigatran), showed they had both knowledge of Pradaxa’s dangers and financial incentive to let the drug onto the market without issuing any warning:

“Employees of Boehringer Ingelheim, the German drug maker, continued to express concern over whether sales of their blood thinner, Pradaxa, could be harmed if the public learned that some patients might need regular testing for safety reasons, according to new documents unsealed by a federal judge in Illinois on Thursday.

“The documents, which include a series of internal emails and memos, add to a trove of court records that were made public last week by Chief Judge David R. Herndon, of the United States District Court in East St. Louis, who is overseeing thousands of lawsuits filed by patients and their families, who say that Boehringer Ingelheim failed to properly warn them about the risks of taking Pradaxa.

“Since its approval in 2010, the drug, which can cause fatal bleeding, has brought in more than $2 billion in sales in the United States, according to the research firm IMS Health. It has been prescribed to 850,000 patients, but has also been linked to more than 1,000 deaths.”

—The New York Times. Feb. 7, 2014

The Accomplices (unwitting, assumed unknowingly) – Shareholders, government officials, the psychiatric establishment, persons in academic institutions, medical journals, medical and mental health care systems, front groups, pharmacists, other prescribers, and the media. In practice, doctors act as accomplices; because many are unaware of the extent to which the drug industry permeates medical education and culture, they are also victims.

Gwen Olsen, author of Confessions of an Rx Drug Pusher, worked as a pharmaceutical drug rep until she figured out that people were being harmed by her participation in this system:

“I was being encouraged to minimize side effects when I talked to doctors. I started to realize that these patients were literally being tortured by the drugs. There is no such thing as a safe drug. I was so disillusioned, as well as angry, when I found out how much deception, how much misinformation was taking place and how I’d been used in that game. I literally was the one on the frontlines. I was harming people unintentionally, but I was responsible. I carry a burden for that now.”

—Global Research. March 26, 2015.

When Bruce Levine, a clinical psychologist, recognized that he was a cog the system  alongside doctors who prescribed medications in ways that were harmful to children, he began speaking out against it:

“[I] wanted to distance myself from [the mental health profession]. In the 1990s, I used to say, half-seriously, that when kids found out what had been done to them – including shrinks’ pathologizing and drugging their reasonable rebellion –- these kids, when they grew up, would go after mental health professionals, and I was hoping that by speaking out that they would spare me. I was only half-joking.”

—Daily Kos. March 4, 2014

Psychiatrist, Mark Ragins, had prescribed the psychotropic medication, Zyprexa, trusting that it was safe. Later he would learn that it caused diabetes in many patients:

“For me the last straw with drug companies was when I found out that they knew about diabetes and Zyprexa all along and intentionally hid it from doctors, leading us to put people at risk without knowing it. That felt like a terrible betrayal to me. (though, of course, not in the same league as what the people who got diabetes or even died went through)[…]

Although I’m sure that I’ve helped many people with medications, the drug companies are extraordinarily dangerous partners[…]”

—Psychology Today. October 10, 2010

The Victims – Persons who experience unexpected physical, emotional, mental, and/or psychological adverse effects (immediately or from longer-term use) as a result of being prescribed products where insufficient or misleading information has been given. (Also victims are doctors who have been led to prescribe said products without giving full safety information, whether because of drug industry influence or by following accepted prescribing protocols within medical and mental healthcare systems).

A Post-SSRI Sexual Dysfunction (PSSD) Story

I first took citalopram (Celexa) in November 2007, at the age of 22. I had quite bad obsessive compulsive disorder (OCD) and because there was a long wait to try cognitive behavioral therapy, I was persuaded to try citalopram to treat my OCD.

Initially it made me feel a bit sick, but the most noticeable thing was it completely abolished my sex drive. I simply stopped thinking about, desiring, or fantasizing about sex in any way. When I had an orgasm, it was nearly pleasure-less, and my penis felt anesthetized.

I only took the drug for 4 weeks, but when I stopped taking it my libido didn’t return to anywhere like it was before. After 2 months I became concerned, and asked my GP. He said my low libido and citalopram could not be connected in any way, as I had stopped taking the drug, and my low libido was likely down to low mood/anxiety. I wasn’t convinced as I know how low mood or stress can affect my libido, and it is nowhere near as severe, and returns quite quickly when I relax, or my mood lifts. I wasn’t too concerned though, and assumed it would just take a few more months to return to normal.

I was then persuaded to take fluvoxamine (Luvox) for at least 3 months, as this is the time it is supposed to take before improving OCD symptoms. I started taking this drug in July 2008, and took it for about 5 months. I stopped after seeing no improvement in my OCD symptoms. I felt fluvoxamine had no effect on my sexual functioning whatsoever, and ironically it is the SSRI that has been reported to cause the least sexual problems, although some people are affected.

I was persuaded again to try citalopram for a longer period of time, and I agreed as I was ignorant to the potential of SSRI’s to cause long lasting sexual dysfunction. In December 2008, I took it for about 3 weeks. This time I noticed an even further decrease in libido, and two days after taking it, I developed severe premature ejaculation. I had never experienced premature ejaculation up to this point in my life. After 3 weeks I developed a severe headache, which my GP thought was connected to citalopram, so this is why I stopped taking it.

After a few months of being off all SSRI’s, my libido was still non-existent; I still had pleasure-less orgasms, my penis still felt anesthetized, and I had severe premature ejaculation. I started to become more concerned. Puberty had started for me at thirteen, so I have had many years to get to know how my libido works, and how it is affected by my mood or stress levels etc. The sexual dysfunction I experienced since taking citalopram was much more severe, was consistent every day, whatever mood I am in, and started directly upon taking citalopram.

Low mood, stress or OCD had never caused pleasure-less orgasms, severe premature ejaculation, or for my penis to feel anesthetized. All of these symptoms have been known to be caused by SSRIs, including citalopram. So I went to my GP hoping he would see that citalopram was the most likely cause. I explained the situation to him, and he told me there was no way citalopram could have caused my on-going sexual problems, as the drug was not in my system anymore.

He said “you will get better when you decide to get better.”

Frustrated, I went to another doctor, this time with literature from credible scientists who had expressed concern that SSRI’s could cause persisting sexual dysfunction, even after cessation of their use. She briefly looked at them, suggested my OCD could be the cause of my problems, and said I should never mention this problem to a doctor again. She also told me that as I had a history of mental health problems, it is unlikely that I would be taken seriously.

So I met with the psychiatrist who initially prescribed the citalopram. I sent him some literature I had found on the internet regarding post SSRI sexual dysfunction, as that was what I was now sure I was suffering from. He refused to read the literature, and also stated he felt my sexual problems were down to low mood or OCD. Eventually I insisted on him reading the literature. He then told me that although PSSD might exist, he couldn’t say whether or not I was suffering from it.

I have been to many doctors in the following years, explained to them why I was convinced I was suffering PSSD, and they have all attributed my sexual problems to low mood/ anxiety. My problems have been attributed to almost everything, apart from citalopram.

The only exception was a GP, ex psychiatrist, who told me he had no doubt citalopram was the cause of my on-going sexual dysfunction, and that he had a number of ex patients who had a similar experience to me; ongoing sexual dysfunction long after stopping an SSRI, that he had no doubt was caused by an SSRI. He then told me he couldn’t predict if or when I would recover, but that if I did recover, it would take years.

The effect of living with PSSD is devastating. It has destroyed two relationships. Relationships with women end up being like an asexual friendship, with sex being like a pleasure-less boring chore, with no emotional connection or lust whatsoever. If I don’t make a full recovery I don’t think I will ever be able to have a “normal” sexual relationship in the future.

This obviously has serious implications for my future. In the years after developing PSSD, I have suffered from a severe depression, as I have been left in a horrible limbo state which has gone on year after year. This is directly linked to PSSD and has resulted in self-harm, a suicide attempt, and I have often contemplated taking my own life.

I feel alienated from my peers, as I can’t relate to them – I can’t get excited about girls with them and relationships, etc. I don’t like listening to music as much anymore, as nearly all music is about love, sex, and romance in one way or another, and I don’t like to be reminded about what I am missing out on. The same applies to certain films and T.V programs.

It is difficult to talk about this problem. When I have talked to people about it I have regretted it. People don’t understand, or don’t believe you. I have been laughed at even by doctors. People have suggested I might just be gay. In my social circle, only my parents and one close friend knows. The subject is taboo. This must be why this problem hasn’t received much publicity. You are shamed into not talking about it.

I have now lived with PSSD for almost 7 years. The severe premature ejaculation has resolved, but it took 15 months to do so. The pleasure-less orgasms, penile anesthesia and non-existent sex drive remain. I live with a barely suppressed rage about what has happened to me, and especially about how I have been treated by the medical profession.

Since I first took citalopram I have felt like an old man, in a young person’s body. I don’t even feel like a proper human being anymore, I would describe PSSD as a protracted mental torture. I hope that one day I will recover, and be able to put this behind me, and that the medical profession will eventually treat this serious condition with the respect it deserves.

—RxISK. July 15, 2014

As with sexual rape, the victims of pharmaceutical violation are everywhere, walking among us unrecognized. Many may not even connect what they experience to their medications. This is a violation involving physical, emotional, mental, social, and spiritual damage at the hands of those holding power over medicines, who deny any wrongdoing and remain free to do the same to others.