Follow the money - who is funding the US transborg?

[OrchidInTheSun]

I haven't read all this yet but it looks very interesting, particularly in light of some of the conversations being had on the JB thread.

medium.com/@sue.donym1984/inauthentic-selves-the-modern-lgbtq-movement-is-run-by-philanthropic-astroturf-and-based-on-junk-d08eb6aa1a4b

I've read the beginning and end and skimmed the bit in the middle. Fascinating. The argument is that in the US, organisations posing as grassroots transgender rights movements are actually lobby groups funded by wealthy organisations and foundations.

One key para near the end:

"Let us think about it: what every group in the transgender lobby is demanding is essentially guaranteed access to medication for off-label purposes. None of these drugs are approved for transgender uses. Given the data we do have and the state of the science behind that data, accompanied by the side effects up to and including death, it is unlikely to ever be approved by the FDA in a clinical trial. Unless, of course, the side effects were better than the outcome. Hence, the creation of a perception that transgender people are murdered a at higher rates than the general population, even though that isn’t true. Saying that the side effects are better than the suicide of the patient probably wouldn’t pass muster either, given that medical intervention did not change the fact that transgender people have elevated suicide rates compared to the general population."

That's a long read.... very interesting but will take a while to get through. It's complicated.

It is long - it is interesting from what I gleaned.

Astroturf is artificial grassroots support.

I love the term AstroTurf. I suspect similar is at play in the U.K.

It’s a very good read.

I can’t comment much on the financial section because that’s not my area, but the medical section later on is extremely worrying. Ghostwriting, off label promotion and evergreening are obviously happening here. The echo chamber web of self promotion and dodgy data is something I’ve suspected from reading a lot of the papers that have been published recently - it’s good to see her actually start to dissect that network.

Really good article and very worrying indeed.

By the way if you’re interested in dodgy pharmaceutical tactics, Ben Goldacre’s book ‘bad pharma’ is a fantastic startpoint.

His ‘bad science’ book is great too.

I still feel there’s something deeper behind all this. The ideology is so extreme, and the effect on women and children sonpotentially extreme.

Is Goldacre keeping quiet on this subject?

Thankfully we aren't the only ones following the money.

This is a fantastic read: thefederalist.com/2018/02/20/rich-white-men-institutionalizing-transgender-ideology/ The pharma and tech section is pretty chilling.

The Pritzker family spend their money on some interesting things:

4thwavenow.com/2016/07/11/follow-the-money-trans-billionaire-makes-new-1-million-grant-to-chicago-pediatric-transition-clinic/

www.insidephilanthropy.com/lgbt/2016/1/20/which-chicago-billionaire-is-giving-big-for-transgender-stud.html

The Federalist has been discounted by many for being a right wing source although I agree that article is great.

I'm glad this is in Medium - hot on the heels of Cassie Brighter! There are so many elements that are worrying - the push, the money, the meds. If I were trans I think I would be very uncomfortable with a lot of this. Most philanthropists don't donate unless there's something in it for them IME

Bowl - I've got Bad Science - it's a great read. Can you explain what ghostwriting and evergreening mean please?

Ah - apologies - previous thread on the Federalist article: www.mumsnet.com/Talk/womens_rights/3173651-Article-on-the-funding-behind-transgender-lobbying-organisations

From about six months ago, so a really interesting to read as to what was known then and what's come out since.

Evergreening is how you extend the patent on a drug. So a drug from the point of discovery only has a set patent life. 15 years normally although there are exceptions. Now if it takes you five years to get that drug through tests and a billion dollars to do it (roughly the industry norm) you have ten years of patent to exploit to get your money back.
Evergreening is making subtle changes to the formulation/dosing/release etc to extend the patent and give you more money making time. If you repackage a depot injection as a different format for example and remarked for something else you potentially (not always) extend patent life.

Ghostwriting is the practice of pharma companies writing what look like genuine primary research papers by academics in order to build up a body of ‘research’ that ‘confirms’ the drug is fabulous/effective etc.
It’s not always a bad thing or done maliciously - there are plenty of papers out there where very important work has been done in conjunction with companies and as long as all interests are declared and it’s obvious who has paid for it and what people’s intetests are it’s less problematic. What is a problem is where pharma writers write the piece and cover it with other names, so it looks like Dr. So and so writes as if he has confirmed that the drug is doing something and actually... it’s advertising.

This is something that really pisses me off because people have all these conspiracies about Big Pharma sitting on cancer cures (they aren’t, honest) and ignore these grubbier but real ways in which some companies flout ethics.

Yes the difference in quality between the Cassie brighter piece and this is fairly substantial eh?

Planned parenthood needs somewhere to spend their money now that the clinics they used to find offering contraception and abortion have been closed down.

Thank you!

So is the ghostwring thing quite common? And what are the tells?

Also, what is the regulation around using meds off label? I understand that puberty blockers aren't licenced for what they're being used for but how does that actually work? Could the prescribers be sued if there are long term health consequences?

Sorry, lots of questions. I'm hoping you're lying on the sofa with nothing to do right now :o

The Federalist has been discounted by many for being a right wing source although I agree that article is great.

Indeed. If only left wing sources were discounted equally. Doesn't seem to happen.

Bookmarked to read later.

No I agree Biology. There is so much utter shit being promulgated by the left at the moment. The whole suicide narrative for a start.

I applaud Medium for publishing articles from both sides of the debate. They come across as neutral to me which is not the case for most media (print most definitely)

Medium isn't really a publication in the normal sense - it's more a web-hosting service for amateur/citizen journalism/op-ed pieces (like a journalistic version of Wordpress). So, some interesting stuff, but no editorial filtering.

Seconding "Bad Science". I'd also add "Merchants of Doubt", a fantastic book about astroturfing, privately funded think tanks, paid scientists, sponsored op-ed pieces in mainstream media, the exploitation of the rules around journalistic balance,and a host of other techniques developed and used by the fossil fuel industry and big tobacco to muddy the waters over climate change and health risks respectively. You can see so many of the same techniques being used here once you know what to look for.

This is such a good article - particularly on the astroturfing and lobby groups - and well worth the effort to read it carefully.

Disclaimer: the usual one that I’m a scientist not a medic!

Yes it’s common. Look for uncritical articles about a specific drug, always always always look at people’s affiliations - all interests should be listed in papers. If you’re unsure go into PubMed and look at their other papers and google them. ‘Cast of thousands’ author lists are a giveaway too in biological fields (and totally normal in physics.)

So off label usage isn’t always bad. It can and does save lives, but it’s something that shouldn’t be done lightly and is a big responsibility. By label, we mean the indications that the drug is tested and approved for by the relevant body (FDA in America, MHRA in the Uk.) to get approval for an indication you must conduct trials and present the data to the body and they must approve it.

Pharma companies CANNOT MARKET for indications that are off label. Less of a problem in the UK because you can’t market direct to patient here but huge in the US and where you can.

A prescribing doctor retains responsibility for their prescriptions.

Lots of off label use is legit. For example, if you’re dying and there’s a promising but I tested cancer drug that might give you a few extra months. Or it’s just that the drug has never specifically been tested in kids or pregnancy women (most of the drugs for hyperemesis have never been tested in pregnant women, but they have long useage records with good safety.)

In some cases it’s that the drug has been around forever like aspirin and it’s used for all sorts of stuff without any trials ever being done.

Or things like antidepressants used for anxiety or as mild antipsychotics. That sort of stuff.

The legal stuff is fuzzy. The FDA don’t regulate what the drugs are used for atcthe doctor level - they only say what they have been approved for and can be marketed for. And there has to be a presumption that. Doctors are NOT compelled legally to tell the patient that the use is off label but they can be held responsible for what they prescribe.

That’s the level my knowledge of the legalities stops I’m afraid - it’s a balance between the responsibility of the medic to treat and their responsibility to be ethical.

Where pharma companies push doctors or even provide incentives to get them to prescribe you have an ethics breach. Where they are pushing to prescribe for off label use that breach is even more serious because it creates direct conflict between the interests of the patient and that of the company.

Incidentally, let me see if I can find the ruling... a little drug called Lupron was in 2001 involved in such a case (kickbacks mainly) which was the biggest ever at the time. Scroll down to TAP/Lupron here:

en.m.wikipedia.org/wiki/List_of_largest_pharmaceutical_settlements

Tangled web...

Yes I’m on the sofa and feeling frankly a bit horrid :) thinking of serving an eviction notice on the little bugger ...

Sorry missed a line out there *And there has to be a presumption that doctors should act in best interests of patients and sometimes that is indeed using a drug that not licenced

I can highly recommend Dr Malcolm Kendrick. He is a practising GP in the UK and writes a blog.
He explains the facts behind the published statistics. He is a very sceptical man.

Getting teens tied into a lifetime of hormone treatment could be perceived as an excellent marketing strategy by BigPharma. Those late-transitioners in their 50s.... nah, why bother.

Follow the money indeed.

Thanks for the link. I'm still reading through it but it's very interesting so far.

One thing that has leapt out for me is that funding for lesbians is at $4m and declining whereas funding for transgender people is at $20 million and rising. No wonder the LBGT organisations are so willing to throw us lesbians under the bus!

$22 million even!