Discussing software, the web, politics, sexuality and the unending supply of human stupidity.

On BBC Radio, Piers Morgan said that if tens of thousands of Americans were dying of a disease the government would act in a way they aren’t over similar levels of gun deaths.

Interesting comparison: the last time tens of thousands of Americans died from a mystery new disease, the government did sweet fuck all for years and years. AIDS for the memory challenged.

The fact it primarily affected gay people, black people and drug users caused certain sectors of American Christendom to welcome AIDS with glee and schaudenfreude, in fact.

I know I shouldn’t expect journalists to have a memory that stretches as far back as the 1980s.

Of flibanserin, pharma and patient groups

BBC Radio 4’s excellent series The Report has a very interesting show this week investigating the controversy around the approval and use of flibanserin (now sold in the United States under the trade name Addyi, and often referred to as the “female viagra”). Flibanserin is used to treat hypoactive sexual desire disorder.

Unlike viagra, which simply stimulates blood flow to help one maintain an erection, flibanserin is supposed to increase a woman’s desire for sex. It originally was developed as an antidepressant and then was put forward as a treatment for hypoactive sexual desire disorder.

As is the way of such things, and as the documentary pointed out, the Diagnostic and Statistical Manual (DSM) has since changed and through the waving of the American Psychiatric Association’s magical wand, hypoactive sexual desire disorder vanished and has been replaced in the fifth edition of the DSM with two new disorders: male hypoactive sexual desire disorder and female sexual interest/arousal disorder.

Before I get into the meat of the post, a quick aside: the asexual community have pointed out rather an interesting thing about hypoactive sexual desire disorder (and its spinoff conditions) is that not feeling sexual desire shouldn’t automatically be pathologised—doing so kind of puts asexuals in the same place gay people were when homosexuality was considered by psychiatrists to be a disorder. Given the long and rather sad history of attempts by the medical profession to pathologise sexual minorities—the legions of gay men zapped, drugged and generally tortured for the crime of loving other men is testament to the extreme folly of that approach—we should hope that the current generation of medics faced with the messy complexity of human sexuality deal with it in a more caring, open and tolerant way than they did in the past.

Anyway, back to The Report. In the programme, Melanie Abbott examines the gender politics around the approval of flibanserin. The producer of the drug, Sprout Pharmaceuticals, were supported in their bid for FDA approval by a campaign called Even the Score, an umbrella campaign supported by a whole host of different organisations including the feminist campaigning group, the National Organization for Women (NOW). The Report points out that both Even the Score and critics of the approval of flibanserin ended up using the rhetoric of equality: Even the Score talks about “women’s sexual health equity”. Before the approval of flibanserin, Even the Score’s website noted that the “FDA has approved 26 drugs marketed for the treatment of male sexual dysfunctions, compared to zero [now one] to address the most common form of female sexual dysfunction”.

A critic of the approval of flibanserin quoted on the programme called Even the Score an “astroturf” campaign funded by Sprout Pharmaceuticals. An astroturf campaign from a pharmaceutical company? Whatever next? Next you might suggest that a pharmaceutical company might manipulate the patent system for profit or that they might drastically ramp up the prices of drugs in order to profiteer off patients who have no choice but to buy their products or die a grisly death? Or, slightly less drastically, that they might engage in manipulation of data, hiding of trial results, selective statistical fiddling and an overly friendly (one might even say incestuous) relationship with regulators. You’d have to be some sort of loon to believe that, obviously.

Anyway, The Report spoke to the CEO of Sprout Pharmaceuticals, Cindy Whitehead, and asked her a pretty simple question which, if answered clearly, would show how not-astroturf-ish Even the Score was:

How much money did Sprout put into Even the Score?

Her answer?

We don’t disclose any of our financial investments to coalition efforts, medical societies, or any of the other groups we work with on education.

Abbott follows up:

Wouldn’t it be fairer for people watching this story for them to know how much?

Good question.

It’s a very interesting perspective that people seem so particularly interested in this—in this patient advocacy movement when I don’t see that same level of interest in advocacy movements for conditions like diabetes or breast cancer.

Well, that’s a fair point. And I mean nobody bangs on endlessly about the transparency and behaviour of, say, breast cancer awareness groups for slightly dodgy relationships with big companies, or for excessive and expensive trademark enforcement against other charities.1

Here Whitehead reveals exactly why transparency is needed throughout the pharmaceutical industry. Perhaps Even the Score is a perfectly legitimate grassroots organisation. There are surely women who suffer from sexual desire problems and there may even be a case that women’s sexual healthcare is treated as an afterthought compared to men’s sexual healthcare. Female sexual and reproductive health is certainly demonised, mythologised and judged a whole lot more often than male sexual health is.

But while the relationship between pharmaceutical companies and patient advocacy groups (and medical societies, and charities) remains both cosy and extremely shady, cynics have every right to look askance at any campaign group whose interests align with that of a pharmaceutical company sponsor. Patient advocacy groups will speak very loudly about NICE not approving drugs but keep eerily silent about the high prices charged by the manufacturers. One must not bite the hand that feeds.

Back in 2013, a leaked email that was originally sent between drug companies showed that they planned to use patient groups as a key part in fighting against campaigns to require them to open up trial data, even though such transparency will allow doctors to better inspect data, spot anomalies, do unplanned group analysis, and better find side effects. This demonstrates the kind of relationship that exists between drug companies and patient advocacy groups. Without clear disclosure of the money given to patient advocacy groups, one must be somewhat skeptical of them.

The Report also mentioned that Cindy Whitehead used to run marketing at Slate Pharmaceuticals while her husband Robert was Slate’s CEO (before Cindy took over as CEO of Sprout, can you guess who was running Sprout?), they were marketing Testopel, a testosterone pellet for in men with hypogonadism. They received a massive dressing down from the FDA for their marketing materials, which included suggestions that it could be used as part of treatment for a whole variety of things that the FDA hadn’t been given evidence for including erectile dysfunction, type II diabetes, HIV, depression and even just as a way to improve sexual and athletic performance. The FDA also stated that Slate’s website for Testopel contained misleading and unsubstantiated claims regarding the cost of the medication, pain and side effects.

If you are looking for more of the tell-tale signs of pharma industry fun and games, have a read of this piece in The Atlantic. It notes how flibanserin’s clinical trial processes have changed over the years, going from asking patients about the desire they felt every day, to asking them about the desire they’ve felt over the last four weeks. A cynical person might suggest that changing your way of measuring outcome over time when you find out it gives you more promising results isn’t exactly kosher. But, as Cindy Whitehead said, why just pick on flibanserin? Fiddling outcome metrics and jumping between primary outcome measures when they give you pesky inconvenient data is just routine, just as rather uncomfortable funding arrangements with supposed patient advocacy groups is. We shouldn’t necessarily pick on Sprout or flibanserin—the problems of the pharmaceutical industry are systemic and widespread, and the pharmaceutical industry is keen on ensuring reform efforts (like AllTrials) is kept slow and watered down if it can’t be killed off entirely.

Anyway, if you are interested in the interplay between politics, healthcare, sexuality and the pharmaceutical industry, it is well worth listening to this week’s episode of The Report.

  1. In honour of the Komen Foundation, I’ll soon be organising Cynics For The Cure, a charity fun run to cure grumpy bastards like me of our perpetual miserableness.

Pope says government workers should be able to refuse gay marriage licenses. At some point, The Advocate—and other liberal and gay activists—are going to have to eat some humble pie for their completely misplaced Tinkerbell-esque faith in Francis as some kind of radical reformist Pope who is going to suddenly magically make the Catholic Church not hate gay people.

Stop believing the lie that Francis is a radical change on gay rights. He’s not. Please stop being conned.

I’d like to thank the idiot who shouted “look at those faggots” at us for his keen observation skills and his #everydayhomophobia.

Selling Out and the Death of Hacker Culture is an excellent piece on the commercialisation of hack days.

A few years ago, I was at a big commercial hack day and ended up going “fuck it, this isn’t for me anymore”. I haven’t gone to the big corporate ones since and just tried to restrict myself to the non-commercial, public interest and fun hack days instead.

OptiKey is an open source eye tracking assistive keyboard for Windows, meant for people with diseases like motor neurone disease and amyotryphic lateral sclerosis designed to provide an alternative to commercial software that can be prohibitively expensive.

Open source health software is a really interesting field. Open source medical records software could provide huge savings for hospitals and medical practices, but software that directly benefits patients—and for which support is provided by a peer group of patients—is really going to be pretty revolutionary.

You can recover and change your password without having to supply your two-factor authentication token. Just let that sink in for a moment.

WordPress is such a rich source of infosec comedy.

Medium is Geocities 2.0. It is a beautiful way to share your ideas and stories with the world, until the owners decide they can’t be bothered any more and shut it down or sell it or ‘sunset’ it or ‘pivot’ it or plaster it with fucking adverts or whatever the next excuse is to either delete or ruin all your contributions.

Build the alternative.

Pink News have an excellent piece debunking the lie that Pope Francis is in any meaningful way “pro gay”. Won’t stop the wishful thinking though. People desperately want to believe the hype.

Silicon Valley: where invite-only private members clubs are “meritocratic”, billionaires dreaming of privatising public services is “democratic”, and “disruption” is both a moral imperative and a compliment.

DVLA don't have information on how often their incompetence is detected

A week or so back, I blogged about the DVLA’s incompetence over verifying my date of birth on my driving licence. I also sent in a Freedom of Information Act request to see if they have any data as to how often situations like mine happen.

Alas, they don’t have any data on record about this. They don’t know how often they have to reissue driving licenses due to failures of data verification. This isn’t particularly reassuring. Should you trust driving licenses as proof of identity? That’s up to you. I’d certainly say that my trust of the DVLA’s capacity to verify identities is significantly lower than my trust of the UK Passport Agency. Passports remain gold standard when it comes to government proof of ID; driving licenses aren’t nearly as good.

A fictional conversation about progressive enhancement

“I am disappointed by modern web development. Too many bloated frameworks, too much JavaScript, single page web apps, hash bang URLs—it’s all a bit over engineered. We have lost the old techniques of progressive enhancement and in return we have ghastly nonsense like infinite scroll which looks nifty but does not really improve the user experience. It all seems a bit like we have reinvented the era of Flash intros but we think it is so much better because we have made all this pointless bullshit in JavaScript rather than Flash.”

“I take your point, granddad. Perhaps this technology is excessive for mere web sites but we are building web apps now.”

“At some point someone will give me a clear explanation of the difference, riiight?

“Well a web app is something you can’t really experience without a whole lot of scripting. Like, you can’t progressively enhance it.”

“So a web app is defined as a system that requires the JavaScript excesses for it to work. And the argument for the JavaScript excesses is that we need it to build web apps. That sounds a teeny bit circular to me.”

“Bah. Logic. I don’t need logic. Just because you can’t fit it into your theological categories doesn’t mean there isn’t a distinction. Like, I can point to clear examples of web apps. Gmail! Google Docs! They don’t make sense if you don’t understand them as apps. They don’t fit that old fashioned web pages with little blobs of progressive enhancement model that you grumpy old Luddites keep banging on about. If I want to build Google Docs, I need to do it in the new way.”

“You make a good point. You do kind of need a modern browser with bells and whistles to be able to edit a spreadsheet in Google Docs. The user experience of using that in Lynx is going to suck, so perhaps you don’t really need that.”

“See, this brave new world of apps is not so scary! Shall I help you with your Gulpfile now?”

“Let’s not be too hasty. I mean the argument is that Google Docs is completely useless without all the modern front end stuff all working.”


“And there is literally nothing you could display to someone viewing a Google Docs spreadsheet or word processing document if, say, their browser had scripting turned off?”

“Absolutely. This is why you need to approach it with an app mindset rather than a document mindset.”

“What is the user editing in Google Docs?”

“Well, rich text files and spreadsheets.”

“Which are types of what?”


“Can you repeat that word for me?”

“Oh fuck. Documents. You got me.”

“So what could you do if the user loads the page in a browser that doesn’t have the capabilities to edit the document?”

“Well, we could display the document, I guess.”

“And what technology do you need to render rich text and tables in browsers?”

“You know the answer already. HTML and CSS.”

“And if your browser can edit the document—”

“—then it loads the relevant code to edit it. It is still progressive enhancement! I get it.”

“And you can even use your silly Node.js reimplementations of GNU Make if it makes you happy.”

Russian translation