Stigma? What stigma?

Jim Thompson
Chief Executive, Centre for Mental Health

The theory behind online pharmacies is, of course, essentially sound. However, I intend to demonstrate one reality around the areas of patient choice and safety – a reality where there is no stigma, because there is no diagnosis, no prescription, no medical record at all.

It is amazing that in the 21st century, people with mental health problems still face massive and very real stigma and discrimination. It threatens their livelihoods, prospects for insurance and travel, and their social security. Perhaps, then, it is less amazing that, because of unscrupulous Internet predators, the stigma can now be bypassed.

Bypassing health services 

Allow me to pose a question. Have you received or seen emails offering to sell you Viagra online? That question, when asked in public, is frequently accompanied by nervous laughter, because of the implication of buying that kind of product online. And thus stigma is born.

I believe there are three main considerations. At number one, we have the integrity of medicines. Trust in medicines is of paramount importance. We need to know that the product is what it says on the pack, that it has been hygienically stored, that it is in date, that it is the right dosage and that it has a Patient Information Leaflet, preferably in the correct national language.

At number two, we have criminal activity. There is no doubt now that serious criminals across the globe are engaged in moving counterfeit medicines through the legitimate supply chain.

At number three, we have the bypassing of health services. Are you sick of waiting for an appointment? Is your GP unsympathetic or unwilling to prescribe your drug of choice? Are you worried about a future employer asking searching questions about your medical history? Are you scared of stigma? No problem. Get connected to the Internet, preferably through broadband.

Stigma creates an incentive to bypass health services. Stigma costs the taxpayer millions – through lost workdays, inappropriate GP visits and diagnoses (and the drug bill associated with them), and through benefits payments. That is just the beginning.

Trust

If at all worried about visiting the GP, someone seeking information about a possible illness will turn to patient groups, where they will find a whole range of information – predominantly online.

We are trusted. Contrary to some opinion, we produce impartial information, based on all available sources (and not on marketing imperatives). The downside of providing information is that it makes self-diagnosis possible.

And it is a short hop from self-diagnosis to self-prescription and self-medication. I would ask patient group representatives two questions: "How secure is your information provision?" and "Are you really sure?" Here is what happens when it goes wrong.

‘One patient group’s worst nightmare’

Until the end of January 2005, when I left to develop the Centre for Mental Health, I was Chief Executive of Depression Alliance – the leading UK charity for people affected by depression. We drove our information delivery via the Internet – quite deliberately. It was simply the best way of disseminating it and, in one year we drove hits to our website from 6500 a week to over 30,000 a week.

Those people visit the Depression Alliance site because they want to know about depression. Remember, although Depression Alliance is not their GP, they have come to it, anonymously, for information.

‘Depression and Antidepressants’ is the most accessed page – by a mile. It tells the reader everything they need to know about available medication. Thousands read about the range of medications available and it is an easy progression from there to Google. They are already online! Of course the charity repeatedly warns against self-prescribing.

But what if they never even reached the Depression Alliance website? Depression affects concentration, attention span and reactions and typing errors are extremely common – a quick look at the average email discussion forum on the subject bears this out.

Some time ago, Depression Alliance got an email from a concerned GP. He alerted the charity to what happened when he mistyped the URL. We tried it. We could not believe it. Welcome to one patient group’s worst nightmare.

www.depresionalliance.org

The misspelt URL took us to prescriptions.org – an online pharmacy. Actually, the destination changes every few weeks – so the URL is probably being traded. Here you can buy a whole range of prescription medicines and, if you do not have the required prescription, you can get one of those too.

You can pay with any of a number of credit cards and your purchases will arrive by FedEx delivery. Helpfully, there are great discounts for bulk purchases – so you can recoup your outlay by selling on. Can you imagine that? Bulk discounts on medicines toxic in overdose, for people affected by an illness that is a factor in six out of ten completed suicides. What a deal!

And it works! No consultation, no diagnosis, no prescription, no pharmacist, no medical record and no stigma. The drug we bought first was Amitriptyline, a tricylic anti-depressant. We bought that drug because it is known to have distinct side-effects.

It causes adverse reactions when taken with certain foods. And it is toxic in overdose – unlike the more modern anti-depressants. We bought enough to kill anyone in the room eight times over.

The ‘online consultation’? We tried really hard not to be allowed to buy the drug. We listed a pre-existing diabetic condition, said that we had self-harmed and repeatedly attempted suicide. Still the order for this toxic-in-overdose drug was approved.

Widespread abuse

We could not believe how easy it was. We just gave our credit card details and received emails confirming that the payment had been processed and that our goods had been shipped.

Flushed with success, we went one step further. One slow day in the office we decided to dig a bit deeper. We decided to see just what we could buy online.

We took a straw poll of the staff in the office – asking them to name drugs that really should not be available online, and then we tried to find them. It was an eye-opener, and you probably will not believe what we found on offer. How about methadone? We found 9730 sites relating to the purchase of methadone, probably two thirds of which offered the drug itself for sale.

You are probably thinking that we pierced several layers of security, and used anonymous narcotics message boards and discussion lists. We did, but only to get a feel for how widespread the online trade in controlled drugs is.

That is not where we found the 9730 references. That was much easier. We simply used the search engine most teenage kids use, MSN Search.

Here, using the search engine on the default homepage of Internet Explorer, packaged with the PCs millions of us buy our kids, we found readily available methadone, ketamine, Rohypnol, Quaalude (methaqualone) and just about any other controlled drug you could think of, as well as many you would not want to think of. 

We expected that when we dug deeper, we would find a plethora of seedy, shady merchants, flitting from one URL to the next, hoovering up gullible credit card holders. But, helpfully, the narcotics’ message boards we logged onto were full of useful information from our new junkie friends, alerting us to the bogus traders.

Most alarming of all was not the predictable rash of dodgy dealers. On page one of our search results was medshop.com. It was an online pharmacy and looked corporate. If you logged onto its home page, you will see no mention of methadone. You need to know how to get behind the normal shopping list to get to the good stuff (a forward slash followed by the name of your drug of choice ought to do it). No prescription? Not a problem. They are freely available in the ‘members area’ (of course the three day trial membership is free as well).  

Danger to patients

This is a clear and present danger to patient safety. I believe that it is perhaps the biggest current threat to public health. Yet in the UK, for example, this is not a top priority for law enforcement agencies, and the regulator is woefully underresourced.

The trade in medicines is open to criminal infiltration precisely because its structure invites that very infiltration. By and large, no-one is looking – certainly not in a coordinated manner. And the media do not seem to think that ready access to prescription drugs – and quite possibly counterfeit ones at that – using Daddy’s credit card is much of a patient safety story.

It is up to groups representing patients to make as much noise as possible, and to campaign together in a strategic way. I represent some of those groups and we are no longer interested in listening to the regulators telling us there is not a problem. We have had it with listening to some major players in the pharmaceutical industry who tell us that it is not a problem.

Angry

This situation makes me really angry. I am angry with the bureaucrats, who sit on their hands and let it happen – or worse, who advise on legislation and policies that effectively encourage it. They need to wake up and act before some clown puts Sarin in our insulin.

I am angry with manufacturers, some of whom would have us believe that there is not a problem rather than face up to the increased costs associated with combating it. They need to talk to us while we are still prepared to talk to them. I am livid with parallel traders who refuse to talk about ways of strengthening the supply chain to prevent counterfeit medicines infiltrating the UK. Do not get me started on the politicians who bury their heads in the sand!

What are we patient organisations going to do? We are all patients – it is up to us to do something about this. I do not care what those with vested interests tell me. I care what patients tell me and we are going to find out the true patient experience around Europe.

Beating the criminals

Earlier this year, I launched a pan-European campaign to highlight and quantify the patient safety risks of online pharmacies. I am not referring to well-known UK websites that are regulated and totally legitimate. But as a patient, how will I know the difference?

We must turn the counterfeiters’ weapons against them. Using a consistent campaigning web-template, we will build national campaigns that mirror one another. We will collate patient experiences, we will build a library of case studies and we will use an army of national champions to spread the word and agitate for change – if nothing else for effective regulation.

The campaign will target politicians, manufacturers, regulators, parallel traders and online businesses – in short, all those who really should have our safety at heart.

In conclusion, I would like to re-focus on what really matters. Liam Bracknell was a 24-year-old musician and maths graduate, who also happened to have schizophrenia. Faced with the prospect of treatment in today’s NHS, he exercised what the UK government likes to call patient choice.

Liam chose to treat himself and bought his medicines of choice online. At one point he was receiving 300 antidepressant tablets through the post every day.

Liam deserved a decent health service. Liam deserved effective regulation of the supply of powerful medicines. Liam deserved our support. Liam tried 23 different prescription drugs before he died. Liam died alone – outside the system.

Jim Thomson
Chief Executive, Centre for Mental Health

This is an edited version of a transcript of a speech given by the author to a seminar hosted by the Centre for Reform. Reproduced by kind permission of both parties.

Links

Centre for Reform
Depression Alliance

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