Unbearable Medical Costs Are a Systemic Injustice for the Disabled

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by Brad Dell |

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My message is simple: It is a systemic injustice, even ableist, to heap unbearable financial burdens on people with disabilities (PwD).

Before I continue: This column doesn’t critique political parties or provide solutions; it raises red flags so others are mobilized to finding solutions. This column focuses on issues specific to the United States and isn’t exhaustive in pinpointing problems and variables. I use pre-2020 economic statistics due to the volatility of the pandemic.

I define my views on justice through my Judeo-Christian faith’s lens: Through it, justice is inseparable from mercy, the equity that refuses to break a bruised reed or smother a smoldering wick. Through this lens, we recognize the vulnerable and do what we can to provide the supports necessary for elevating them to equal footing with the rest of society. I do not believe justice is blind.

So, when I say there’s an injustice, I point to the reality that although PwD are paid less, we are expected to pay more just to survive. Despite the crushing anxieties and shame inherent to life with disabilities, we must also worry about affording to live, being a burden to our loved ones, whether we should choose between Social Security Disability Insurance or chasing our career dreams. Does that sound like mercy to you?

A low bar on employment

Naturally, when a person expects to have high costs of living, they desire a high-paying job. That’s easier said than done, even more so for those with disabilities.

In 2019 PwDs earned a median of $25,270 while those without a disability earned a median of $37,262. A law passed over 80 years ago — the 1938 Fair Labor Standards Act — allows for a subminimum wage paid to those with disabilities. An estimated 420,000 PwDs are paid an average of only $2.15 an hour.

The U.S. Bureau of Labor Statistics records that in 2019, 19.3% of PwD were employed, compared with 66.3% of people without a disability — of those, 32% of PwD were employed part time, compared with 17% of those without disabilities. This isn’t for lack of trying: In 2015, 68.4% of U.S. PwD said they’re striving to work.

Getting that shiny job to pay for health expenses doesn’t seem so obtainable for a PwD after all, huh?

It’s ‘all business’

Thankful as I am for pharmaceuticals, their costs must be reined in. This is not about controlling private companies but is instead about being fair to the tax-paying citizens who fund them: Taxpayers invested in all 356 drugs approved by the U.S. Food and Drug Administration from 2010-2019. We spend billions through the National Institutes of Health annually, yet pharmaceutical companies pay tens of millions to their CEOs while some charge hundreds of thousands of dollars for essential treatments. Despite U.S. taxpayers pitching in for these FDA-approved drugs, we pay 2.56 times more than other countries for prescriptions.

Government assistance isn’t so dreamy either.

“Out-of-pocket costs for some specialty drugs under Medicare can run as high as $15,000 per year or more, while the median income for Medicare beneficiaries is less than $26,200 a year,” writes nonprofit Patients For Affordable Drugs.

I was appalled to learn in 2016 that I needed to drain my life savings to below $2,000 just to qualify for Social Security Disability Insurance, then keep my savings account low throughout the course of receiving benefits. Some friends are at risk of losing government coverage of personal care aide work hours because in parts of the U.S., assistance is available only to those below the poverty line, despite aides costing tens of thousands of dollars annually.

Clearly, there aren’t enough resources available to help PwD when one of the top — if not the top — reasons for bankruptcy is medical burdens. Then you have 22% of Americans rejecting care because of medical costs and 29% skipping medications for the same reason. The U.S. has nearly double the healthcare costs compared to countries with a similar economy, health spending makes up 17.7% of our economy, and 32% of Americans have medical debt.

Meanwhile, health insurance companies’ billon-dollar profits doubled between the second quarters of 2019 and 2020 while their premiums have doubled between 2009 and 2019.

Affordability is especially difficult for the disabled

Just look at this study from Inquiry: A Journal of Medical Care Organization, Provision and Financing:

Average expenditures for health care among those with disabilities are 5 to 6 times higher, and they spend much more out-of-pocket. People with disabilities are slightly more likely to have health insurance than those without disabilities, but they often report access problems even when insured.

We can make a million arguments to justify high costs and scrutinize the reality of the economy’s complexity. But I think we’d be missing the forest for the trees if we neglect the reality that millions are suffering today because of poor coverage, unfair pricing, debt, and an inability to chase dreams. Why? Because some people were born with mutations or were caught in accidents or touched the wrong surface or drank the wrong water or breathed the wrong air.

Where’s the mercy?

***

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Joe Pierce avatar

Joe Pierce

Hey Brad. Well written, thanks!

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Brad Dell avatar

Brad Dell

Thanks, Joe!

Reply
crissy avatar

crissy

Hi Brad -- well said. Thanks for your efforts!

Reply

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