Welcome to my new regular article, entitled Crip the Week, in which I’m going to tackle the most prominent stories from each week in regards to disability and neurodiversity. Within this writing space I want to tackle the larger issues within the disability community, which still seem a taboo subject even in the most progressive of communities.
Have you ever read something you knew could occur, but hoped you wouldn’t have to see happen in your lifetime?
Earlier this week, the debate about the price of medication and healthcare resurfaced after Donald Trump selected Alex Azar, ex-president of pharma giant Eli Lilly’s USA branch, as secretary of Health and Human Services. This selection shook many in the USA, but selection doesn’t bode well for anyone, whether you’re under the star-spangled banner or not.
In the space of the five years Azar was president of Lilly USA, the price of insulin skyrocketed. TheNation.com reported that when Azar started working for Eli Lilly in 2007 the price of their Humalog brand insulin was $74 – and by the time he left in January of 2017, it had raised to 269. This correlates with a survey by T1International, which asked people with Type 1 Diabetes how much they pay monthly just to stay alive. Americans are paying on average $571 per month for diabetic medication.
He’s not the first, of course, to mess about with the cost of important medication – a year back, our favourite smug-faced piece of work, Martin Shkreli, raised the price of EpiPens massively in a short space of time, whilst Mylan CEO Heather Bresch saw over a 600% pay increase over nine years whilst inflating the price of EpiPens over 460%. It’s currently the norm for pharmaceutical companies to increase the prices of important and long-standing medication to extortionate prices, well above any margin of mere profit, putting the lives of people who need that medication at risk.
Indeed people are dying because of this, and resorting to several drastic measures. Rationing of medication is becoming uncomfortably common, and several individuals are resorting to online funding campaigns or straight-up begging on the streets in order to provide the money needed to pay for life-saving medication.
“Disabled and chronically ill people shouldn’t have to rely on the generosity of others – who are also oftentimes economically struggling – to get through day to day life”
Twitter has honed in on a particular point made within the aforementioned TheNation article – one which is damning proof of the danger of US-style pharmaceuticals. Said point noted that an individual had died in mid-March “after his GoFundMe campaign to pay for his insulin came up $50 short” – and he wasn’t the only one. Many individuals have been found dead after being unable to make ends meet, and have lost everything in order to try to make it to the next day. This situation isn’t just reserved for illnesses such as diabetes or situations such as anaphylactic shock, of course – the prices of medication, mobility aids and the very small items that chronically ill and disabled people need to live is rising, and we shouldn’t have to be forced to beg to get by.
Don’t get me wrong; crowdfunding is a great idea and access to the likes of GoFundMe and other crowdfunding options is fantastic for disabled people, and I’m so very glad we have access to it. However, it’s both unreliable and shouldn’t be necessary. Social media is often a small bubble, and oftentimes like breeds like. Disabled people attract the discussion of other disabled people – and many of us aren’t the most financially stable. It’s unfair on everyone – but disabled and chronically ill people shouldn’t have to rely on the generosity of others – who are also oftentimes economically struggling – to get through day to day life.
All this prior information is quite factual, but I’ve pieced together something crucial from this: we’re being forced to perform the disabled stereotype through this. We’re being made to fulfil the idea that we can’t fend for ourselves, that we are too ‘lazy’ to work to be able to afford the medication that only piles up on top of our rent, mortgage or bills. We’re made to perform that we’re not worthy enough, and have to resort to begging to get to the next day, to get out of the house, to be able to access the world around us.
God, I’m so thankful that these campaigns exist, I’m beyond grateful for those who have donated to people’s funding campaigns. Truly I am. You’ve saved lives. And I know that those who have ran those campaigns are just as grateful that people have picked it up and realised the injustice of it all. But it shouldn’t have to be this way, and that’s the damned problem! I’m pretty sure that GoFundMe and other fundraising websites are horrified finding out their platforms are often the last resort for many chronically ill and disabled people.
A long fight ahead of us
The selection of Azar as Secretary of Health and Human Services just goes to show how little the US Government cares for the lives of disabled and chronically ill people. This man being in place shows how little they’ve noticed the acts of disabled people in the USA and beyond protesting their attacks on the Affordable Care Act, how little they care about the violence that disabled protesters have faced trying to shut down the HR620 bill, and how insignificant they think we are in our struggle to get through day-to-day life. I think that in the USA, we have a long fight ahead of us to even hold down our basic healthcare rights.
It’s not just the states where healthcare is being chipped away at though. My experience with the UK’s healthcare is showing that acceptance of people like Azar running our healthcare can lead to very dangerous outcomes. Currently, the UK’s well-reputed National Health Service is well and truly under attack, with ambulance services being handed away to security firms, our hospitals bought out by Virgin, and the slow and steady rise in the cost of medication rising bit by bit. It seems that whatever the US can do, the UK attempts to pull off over time. The USA’s medical system is dripping down into the UK’s system, and with an attempt to strengthen ties with the US here now we’ve made the mistake of leaving the EU, it could lead to more private healthcare, more people unable to afford medication, more of us dying.
Azar’s corporate policy has killed people. He’s not alone in this, and giving these people executive power could lead to so many more lost lives.