Can We Talk About Big Pharma Without Alienating Disabled People?

A handful of companies in the world control the vast majority of pharmaceutical patents, and maintain a stranglehold on the market for life-saving and critical medications, most of which remain highly priced as long as they’re on patent. When patents finally expire, the scramble for generic competition begins, while pharmaceutical firms sink new resources into the development of new drugs, many of which are key to treating diseases in the West in particular. Developing medications for the Global South isn’t nearly so profitable, thanks to the fact that they can’t be sold at the same premium.

Huge pharmaceutical companies are ruthless, abusive, and controlling. They are involved in unethical business practices and exploit the fears of the general public to generate ever more capital, often at the cost of human lives. When medications cost hundreds of thousands of dollars a year, they are available only to the few, reinforcing the class divide in the West as those who can afford to live do, while those who cannot die in pain and suffering.

They also, however, make drugs that keep people alive, radically improve quality of life, and revolutionise treatment for millions of people all over the world. I am alive and typing right now because of products made by companies like GlaxoSmithKline. I benefit from psychiatric medications developed by pharmaceutical companies and you’ve probably seen advertisements for some of the medications I rely on to survive on your television. I, like many people around you, need medication to live, and will be on medication for my entire life.

Conversations about big pharma in progressive communities often end up having an alienating feel for at least some of us who need medication to stay alive, especially when these conversations veer into the territory of claiming that medical conditions are made up or exaggerated in order to sell more medications. This is particularly noticeable with gendered conditions like chronic fatigue and fibromyalgia, as well as mental health conditions, which many people don’t seem to regard as serious medical issues, let alone conditions that might require medication for long-term treatment. But it also expands to almost any condition you can think of; people routinely ask me when I’ll stop using inhalers for asthma and I say ‘when I die.’

I’m constantly encountering attitudes about ‘made-up’ diseases and manufactured uses for pharmaceuticals, and those attitudes are reinforced by dismissive articles in ‘progressive’ publications about epidemics of medication use, the dangers of medication, rising numbers of patients using particular kinds of drugs. These articles are often not very nuanced and they do a very poor job of navigating the actually immensely troubled waters involved here.

Because the fact is that yes, pharmaceutical companies usually exist to make a profit, and they make a profit by developing very expensive medications, determining what they can be used for, shoehorning in additional uses if they can, and selling as much as they can on patent. They know that once the patent expires and generics come out, the price will drop radically. There’s a continuous cycle of research and development conducted in full awareness of the fact that of the medications initially developed in labs, only a fraction will actually make their way to market, and each one has to count.

And thus, big pharma engages in direct consumer marketing to encourage people to ask for its products by name. It engages in activities intended to alter prescribing practices, pushing doctors to recommend and use its products over those of competitors. It pays for product placement and lobbies in Congress for any and all benefits it can get. And this is important to talk about, because the way in which capitalism intertwines with health care in the United States is a huge, critical problem, and it’s one reason why our health care system is so broken. Because we regard health as a privilege, not a right, and the provision of health services as a profit-generating business rather than a public service, getting access to health care in the US is expensive and frustrating.

But when people start behaving dismissively about actual conditions that actually harm people, they start losing their audience. Telling chronic pain patients that their conditions are all in their heads, that they aren’t actually experiencing what they feel, is a form of gaslighting; it’s a denial of experience that makes people who may already be experiencing fear and frustration even more angry. And it doesn’t do anything meaningful to address their health problems.

Many medical conditions accused of being ‘made up’ are nebulous in nature, it’s true. They are difficult to define, to diagnose, and to treat, in part because many are so new that doctors cannot wholly agree on what they are. That doesn’t make them fake, though. It just makes them new, and patients who have them experience enough self-doubt, fear, and confusion without external pressure.

Just as people with mental health conditions struggle with whether to use medication as part of their management plan because of acculturated attitudes about psychiatric medication. Attitudes about how people should just push through it, stop using medication as a crutch, stop faking it when there’s obviously nothing wrong with them. Untreated mental illness can be a waking nightmare, but some people endure it simply because they feel they have no other choice; they don’t want to be tricked into complying with big pharma and paying for useless medications that everyone knows were invented solely to treat made-up health problems.

There has to be a way to discuss the problems with the US pharmaceutical industry and health care system at large without invalidating the experiences of real human beings. And these must be a way to talk about how medications are developed, marketed, and sold without alienating disabled people and disseminating misinformation about real-world issues that affect us. Every time ‘progressives’ who claim to care about disability issues and health care rant about big pharma without considering the populations they’re talking about, they show a lack of interest in educating themselves about the deeper issues here.

We can all agree that the pharmaceutical industry is deeply flawed and is in urgent need of reform. But some of us don’t believe in throwing away human beings while we do that.