American health care remains a very complex and heavily divided subject. I’ve been wanting to make this post for a while and have been trying to gather my thoughts enough to write it concisely and accessibly, so please bear with me.
As a transgender man focusing on health care and social work, most people that I’ve spoken to that know I’m trans expect that I’ll work specifically on trans health issues (there are plenty, after all). While that’s an interest of mine, I have no desire to be pigeonholed and there’s also this: I sought out a career in social work because there are millions of people in this country from all kinds of backgrounds and identities who lack adequate health care. In the United States, health care is an extremely lucrative business, with health expenditures making up 16.9% of our GDP in 2011 according to World Health Organization statistics – nearly double the median of other industralized nations (8.7%). We spend a lot more per capita, too. But we rank 17th or 16th (depending on whether you’re looking at males or females) on life expectancy compared to those other nations. Generally what the data says is that we spend a lot more and get less.
I have my own story. I was 22 and I lived in Detroit and I was temp-to-hire, without health insurance for a couple of months but healthy enough. I don’t get sick very often, I reasoned, and I’m a careful driver and I take good care of myself. I had lower back pain but it could wait. Then a couple of days before Christmas the pain suddenly worsened, the backs of my thighs and my pelvic area started to go numb – the only way I can describe it is that my skin and muscle was so numb that I could feel my bones, and I felt like they were floating on sacs of fluid when I sat down. It was terrifying. I went to the ER that night, but the doctor was convinced that I had a pinched nerve – and I’m sure the fact that I couldn’t afford to pay for an MRI out of pocket didn’t help, either. She sent me home. Two days later on Christmas morning I couldn’t walk or go to the bathroom and so we went back to the ER.
The short version of this story is that my illness is very rare and serious and required a surgical operation the next morning. I remained in the hospital for a week and the bill was exorbitant, close to a hundred thousand dollars. The hospital’s charity wrote off two-thirds. There was no physical therapy (I couldn’t afford it and my insurance didn’t cover it) and payment for the medical equipment I now required would have to come out of pocket. Acquiring Social Security Disability is a lengthy process since frequently the applicant has to appeal at least once, and my prognosis was uncertain. I would be in recovery for at least a month, so the temp-to-hire position I was in simply let me go.
I declared bankruptcy and I recovered as best I could. I found work at a McDonald’s in Detroit and boiled my catheters over and over again to sanitize them because at $90 a box, thirty were all I could afford. I worked with food service workers who coughed and sniffled through their shifts when they were sick because they couldn’t afford the time off and didn’t get sick days, and people who snuck out to smoke weed on breaks because it was cheaper than their pain medication or anti-anxiety meds. This is American health care.
This was over six years ago now, and I’ve had health care and had my needs seen to for the past four or so. Still, throughout my graduate social work experience I keep seeing ghosts – patients with catastrophic illnesses who put off seeing a doctor as long as they could because they couldn’t afford it, patients who work through their illness or injury because they can’t afford to be sick, and patients in chronic pain from fractures because they can see physicians at a free clinic but can’t afford the X-rays or MRI or corrective surgery. I’ve also met countless patients who are using social services because they were bankrupted following an illness of themselves or a family member.
The reason the loan closet at the ALS Association is an important service is that there are gaps in Medicare coverage, and there are a lot of assistive devices Medicare and Medicaid simply don’t cover. If you end up requiring a power wheelchair after Medicare has already paid for a manual wheelchair, you’ll be paying out of pocket. For someone who can no longer work, this is an incredible burden, and for someone who might have been previously uninsured or underinsured waiting over the months for their paperwork to process, it’s almost untenable.
When we consider the prevalence of ALS (or any disease), we must also consider those who can’t afford to visit doctors for the initial diagnosis. This happens.
I suspect the Affordable Care Act and Ohio’s Medicaid expansion will have a palliative effect on a lot of these issues, though to what extent remains to be seen – and even then, there are still a lot of gaps. Based on the coursework and research I’ve done I’ve become convinced that a universal single-payer health care system is the way to go, but getting there is tricky – and if it happens, it’s a long way off. So what do we do in the meantime?
Well, there’s cost-containment, for one, and rebuilding the system. The Affordable Care Act brought coverage to millions and on a local level, Columbus Public Health has a good outreach program – though it could always be expanded further. But I think one of the best things we can do as citizens is to be aware of the data, and help others learn more. There are a lot of people who remain convinced that we have the “best health care in the world,” when the data points to that not being the case – and we can only hope that greater public awareness can help us bring change.
For those interested, you can find the actual reports at the WHO’s website.