Editorial Note: This is the fourth and final post in the Trick or Treat series that started with Vampire Medicines. These posts need to be read linked to the RxISK MAP posts. These are the theoretical background. The MAP posts are the practical – what needs to be done posts.
Access to Medicines
In the 1980, we faced one of the greatest medical crises of any century – AIDs. At its height the epidemic was claiming 50,000 deaths per year in the US.
Facing the AIDS epidemic, some called on Homosexuals to change their lifestyles. But AIDS was caused by a human immunodeficiency virus (HIV) rather than lifestyle issues.
The answer lay in developing a science base and producing treatments. The treatments that emerged have arguably been the only decently effective treatments that have been developed in the last 40 years with the exception of Glivec.
One the extraordinary things about the response to AIDS was how the homosexual community embraced the stigma and mobilized around finding a cure.
Another extraordinary feature was a celebrated Access to Medicines campaign that took shape around 2000, when it became clear the greatest number of cases were in underdeveloped regions of Africa, and that these patients were being charged First World prices. Campaigners led by Bill Haddad, Jamie Love and Yussuf Hamid, working to ensure access to these life-saving treatments at affordable prices, drove the price down from from $50 per day to under 50 cents.
It was one of the greatest triumphs of the human spirit and an example of what medicine and the pharmaceutical contribution to medicine could be all about.
There is a less inspiring Access to Medicines campaign under way at present, with European politicians mobilizing to control the cost of the latest drugs to hit Western markets – drugs of much less benefit that the Triple Therapy AIDS cocktails.
Access to Real Medicines (ARMs)
Starting around 1980, a new virus emerged that has led to a new and lethal and global epidemic. One drug group alone, the opioids, now causes 50,000 deaths per year in the US.
Treatment induced drug wrecks are the leading cause of death and disability on the planet. Studies suggest treatment accounts for up to a third of deaths in hospital settings, where deaths may be caused by chemotherapy or the cardiac effects of drugs but will be put down to cardiovascular causes or cancer. The drug induced death rate can only be greater in community settings where most deaths occur and where people are less likely to have conditions that can be blamed as the cause.
As for disability rates, roughly 1 billion people are on SSRI and related antidepressants in Western settings – that’s 1 billion people with their sexual functioning disabled. If only 0.1% of these get PSSD or PGAD, that’s 100,000 people with their sexual functioning possibly eliminated forever. This is the disability toll from only one drug group and one set of problems.
Faced with a Drug Wreck epidemic, the medical establishment is playing a moral card and calling on doctors and patients to change their lifestyles – diagnose less and treat less.
The answer lies in restoring a science – adverse eventology. And in creating a climate where adverse events can be recognized and people can be got off treatments if they are maiming and killing them – something that is increasingly impossible to do at the moment.
The Drug Wreck epidemic is caused by a clinical immunodeficiency virus (CIV) whose primary mode of transmission is through major journals like BMJ, NEJM, AJP, through which it takes out the white cells of adverse event knowledge. See Vampire Medicines and Raiders of the Lost Drug Wreck.
No doctor willingly harms patients. If she dishes out drugs it’s because she has not been told about the harms, or has had them dissed. No patient would take chemicals glibly – but this is what is happening increasingly as the information needed to manage the risks linked to the chemicals we take has been steadily degraded.
The reason drugs are being dished out and taken on such a massive scale is because the harms have vanished. RCTs are one reason for this. Drugs have 100 effects. Most of them vanish in RCTs, leaving us with Vampire Medicines – actors without a shadow.
Another reason is journal funk. Our major journals are scared shitless and will not publish anything hinting at any treatment harms. Because of journals and RCTs, doctors have stopped listening to or looking at their patients – if the adverse events aren’t recognized in places like our journals it is more than a doctor’s life is worth to notice them. We might be sitting in front of our doctors but we are effectively invisible.
The hiding of harms has contributed to a growing medical nastiness, when we raise them. Faced with adverse events, some doctors get very nasty. Sensing this, and having no way to know who will and who won’t get nasty, we become increasingly nervous to mention adverse events.
Just as in 2000 the world needed an Access to Medicines campaign, we now need an Access to Real Medicines campaign. The core message of this campaign would be that a Medicine is a chemical plus information and without full access to all the information we don’t have access to the Medicine. The chemicals have always been and will always be risky. The information component has been steadily degraded since 1980 making today’s medicines riskier than the treatments we had back then.
This campaign would be about saving lives on a global basis rather than just in parts of the underdeveloped world. The wealthy of America and Europe are probably at greater risk than anyone.
- Insist on access to data. No company claim to be based on science should be acceptable without access to data.
- Doctors should refuse to prescribed medicines where there is no access to the data.
- Patients should refuse to take medicines when their doctors don’t have access to the trial data.
- Restore a Poison sign to all new medicines, and all medicines without data access.
- BMJ and other journals to tell their lawyers: We are publishing harms data, among which will be case reports and articles from shady customers like Jureidini and Healy – your job is to work out how to make that happen, otherwise, although we might be a successful business, we are doing harm and may need to wind up the operation.
- Work out how to shrink the drugs regulator back to food regulator size and make doctors aware of their regulatory role.
- Before thinking about independent trials, create an independent Harms/Safety body.
- In the absence of data (Cisparency) to enable us to judge whether possible conflicts of interest have been realized, concerns about conflicts of interest (Transparency) create a counter-productive moral panic. Conflicting views are an important element of what drives science forward and should be resolved by data. Claims about conflict of interest should only feature exceptionally.
- Prepare for the day when robots that can learn take over prescribing.