Living with Disease in the US is Hell

The following is the latest painting for Art As Social Inquiry’s Healthcare in the US portrait series. It’s taken 3,556 words to tell Campbell Charshee’s story. He is a Type 1 diabetic, insured, and relying on his smarts and desire not to die in order to navigate the insurance hell that is our system in this country. We can pat ourselves on the back if we just get through the story. Campbell actually has to live it. 

ARTIST’S NOTES

This subject is a Type 1 diabetic. “Living with T1D is a constant challenge. People with the disease must carefully balance insulin doses (either by injections multiple times a day or continuous infusion through a pump) with eating and other activities throughout the day and night,” the advocacy
organization JDRF explains. Campbell was diagnosed at 12 years old. 

Campbell has traversed the health insurance world, first seamlessly as a child with his father’s employer sponsored care; then as an independent adult in the tumult of a for-profit insurance industry where people with preexisting conditions like his were penalized before the Affordable Care Act (ACA) prohibited the practice. 

“We live in a health care system where insulin, a biologic drug which cost less than $20/vial to produce in the 1990s, and for which a 3 month supply cost me $20 on my father’s insurance in the 2000’s, now sells for close to $300/vial, and costs me $250/vial for a 3 month supply. Without insurance it would cost me well over $8000/year. I am routinely gouged for test strips, Metformin, and insulin pump supplies to the tune of an additional $5000-$6,000/year.” On his father’s policy Campbell would have been charged a couple hundred dollars for the same supplies. 

“Because of this reality I’m forced to ration these supplies and medications.”

Rationing medicine and supplies. I have heard this so many times from so many people. Why so in this country?

Campbell’s own observations from his real-life experience say it best. 

“I am a self-employed musician, but I am far from some freeloader. I work my tail off to earn a modest living, and dutifully pay my insurance premiums each month. This should be sufficient to cover most of my health costs. The fact that I perpetually struggle to pay for the ‘privilege’ of good health does not reflect a financial shortcoming on my part, but shows how private insurers have repeatedly moved the goalposts, serving themselves while providing me less and less coverage.

“Remember, for us to have a really equal opportunity to pursue ‘life, liberty, and the pursuit of happiness,’ affordable healthcare must be enshrined once and for all as a basic American right.” Amen.

Please take the time to read Campbell’s disease management story and commentary at the end. 

Musician, Composer, Teacher, Age 31, Insured:

Campbell started getting insulin shots in 1998 at 12 years old to treat his Type 1 diabetes. His body was not producing the hormone he needed to stay alive. Diabetics eventually die if they do not get insulin from an outside source. Managing diabetes would become Campbell’s lifelong task.

He started with insulin injections, moved to the “pen,” and by 2003 Campbell was using a pump. “Incredible technology,” he says. “If I’m exercising or eating, I can adjust the pump. I can send my blood sugar readings to the pump, and the pump does most of the thinking for me.” 

On top of the Type 1 diabetes pronouncement at 12, a 16 year old Campbell was diagnosed with Acute Lymphocytic Leukemia in 1992. He received chemotherapy at Johns Hopkins Hospital and recovered fully. 

As a child and young adult, Campbell was insured as a dependent on his father’s insurance policy. His father had very good insurance as an employee in a state government job. The insurance policy was a PPO plan– Preferred Provider Network. This means that the insured can go to any doctor within a prescribed network without a referral from a primary care doctor. Campbell had costly cancer treatments, and ongoing costs for his insulin, and diabetes supplies, all adequately covered. “I never heard my parents talk about bills or financial hardship regarding my treatment.”

“The fantastic healthcare I received as a child has allowed me to not only lead a normal adult life, but to flourish as a self-employed artist. More importantly, my late father’s employer based health insurance policy allowed me to have access to the life-saving care I needed without major financial hardship to our family.”

“When I think back to my health care experience as a child, versus what I am now experiencing as a financially independent adult managing my diabetes, I realize something has gone terribly wrong with our healthcare system in America.”

Campbell continues. “What’s ‘wrong’ is not the Affordable Care Act. I will concede that the ACA is not perfect, but I do not blame rising health care costs squarely on this law. The ACA’s many protections have simply exposed the rest of the American health care system for what it is: a collection of private insurers, pharmaceutical companies, medical suppliers and hospital systems more concerned with their bottom line, market share, or medical loss ratio than providing adequate care to their own patients. “

As a young adult Campbell chose music as his career. He plays jazz piano. His music degree is from William Paterson University, a school with an internationally renowned jazz program. 

Campbell has been living independently since he was 24. An Affordable Care Act provision allowed him to stay on his mother’s insurance policy until he was 26. He aged out of his mom’s insurance before the Affordable Care Act marketplaces opened. 

Fortunately, Campbell was able to continue with his mother’s insurance temporarily under a COBRA provision where some workers and their families can “continue group health benefits provided by their group health plan for limited periods of time under certain circumstances,” according to the Department of Labor. And while Campbell could continue with his mother’s group insurance for a limited time, he had to pay full price for his policy. In 2013 Campbell’s insurance premium was about $700/month on top of the out-of-pocket costs for drugs and supplies. This was a stretch for a young man making a living as a freelance musician. 

“I knew I would be OK because the marketplaces were opening.” The Affordable Care Act online marketplaces opened in January 2014. Campbell could buy insurance as an individual, and not be penalized for having preexisting conditions like diabetes and cancer.

Campbell’s Health Insurance History in his Own Words

Here is a profile of my experience with the ACA Marketplace in NJ. I’ve been a member with one of the large private insurers on the NJ exchange for all four years since the Marketplaces opened. As you’ll see, what started as a pretty good deal for me has been actuarially adjusted every year, and never in my favor. While I do have other health costs, they are negligible, so I’ll focus primarily on my diabetes costs here. The following data comes from healthcare.gov explanation of benefits pages from each year of coverage, as well as my own records.

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