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.

Is healthcare a human right or not? If so, then let’s fix this.

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.

Rationing supplies – is that something we can continue to tolerate in this country?

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.

2014: Platinum POS policy

• Premium: $346.01/mo (from $478.01, with $132 subsidy) = $4,152.12/yr
• Deductible: $0 in Network, $3,000 Out of Network (OoN)
• Out of Network coverage: yes, at 30% coinsurance (important to me, since my longtime endocrinologist is a excellent doctor at a top Baltimore hospital, with whom I’ve had a long-term patient relationship)
• Out of Pocket Maximum (OoPM) : $4,500 in Network, $9,000 OoN
• Cost of Diabetes Center visit + labs (2-3x/yr): est. $276.00/yr
• Cost of Humalog Insulin: $40 for a 3/mo supply = $160/yr
• Cost of test strips: same = $160/yr
• Cost of insulin pump supplies, cover at 100% this year: $0
• Total annual costs for insurance, diabetes coverage: $4,748.12 ($596 in specific diabetes costs)

This first year was a relief to me after my year in COBRA. I thought the ACA was working as intended. But I was caught off guard by the actuarial adjustments that would be implemented the following year, specifically with my insurer’s drastically lowered coverage for durable medical equipment.

2015: Platinum POS policy

• Premium: $369.29 (from $550.29, with $181 subsidy) = $4,431.48/yr
• Deductible: $0 in Network, $3,000 OoN
• OoN: yes, at 30% coinsurance, although this year I started having trouble getting my Baltimore endocrinologist/lab work covered. I am still unsure why this is. I recall calling both the Baltimore hospital and my insurer repeatedly this year after I started getting unadjusted bills. I got no satisfactory answers as to how the adjustment process works, and quickly got tangled in red tape. Both the hospital’s billing department and my insurer either passed the buck on my questions, or blamed me for not paying bills about which I had legitimate questions.
• OpPM : $4,000 in Network, $8,000 OoN
• Cost of Diabetes Center visits: est. $712/yr
• Cost of Humalog Insulin: $120/3 month supply = $480/yr
• Cost of Metformin HCL: my doctor diagnosed me with an insulin resistance this year = potentially $480/yr. I took half the dosage and paid $240.
• Cost of test strips: I also started rationing these: $240/yr out of a potential $480
• Cost of Insulin pump supplies: est $1,500/yr. This year my insurer reduced coverage for “durable medical equipment” to 50% coinsurance, and after a $3,000.00 OoN deductible. I didn’t even notice this reduction when I first registered for the plan, and was caught very much off-guard when a $700 bill arrived. I had similar troubles with my pump supplier/my insurer understanding these costs, as I did with my doctor’s bills. Because of this shock, I also started rationing my pump supplies and discontinued my use of continuous glucose monitoring sensors.
• Total annual costs for insurance, diabetes coverage: $7603.48 ($3,172 in diabetes costs, of of an estimated $5,125 total possible diabetes costs, had I not started rationing)

This was a rough year for my diabetes management. When the 2016 exchanges opened, my insurer’s platinum plan premiums had jumped significantly, and offered basically the same or less coverage as the plan I had in 2015. I was priced out. My only other marketplace options were the company’s Silver level POS plan (higher co pays but the same 50% coins for durable medical equipment) or a rival’s plan that would left me responsible for 50% of my insulin cost ($1,000 a pop for insulin). I reluctantly opted for the Silver plan and stayed with the same insurer.

2016: Silver POS policy

• Premium: $265.03/mo (from $452.03, with $187 subsidy) through June. I got married in July, and lost my subsidy as a result. From July to Dec, I paid the full amount = 4,302.36/yr
• Deductible: $2,500 In Network, $5,000 OoN
• OoN: yes, 50% coins, after deductibles.
• OoPM: $6,350 in Network, $12,700 OoN
• Cost of Diabetes Ctr visits: $712/yr. This is one area where I could be saving money. My endocrinologist spoke to me about finding an in network endocrinologist in New Jersey. I have resisted doing this, because he is a fantastic doctor and I have gone to him for many years.
• Cost of Novolog Insulin: $250/3 mo supply = $1,000/yr. My insurer stopped covered Humalog this year, so my doctor switched me to Novolog, another fast acting insulin. Fortunately, I’ve reacted well to the new medication.
• Cost of Metformin HCL: $520/yr, of a possible $1,000. I continued to take ½ the prescription, and spoke to my doctor about cheaper, generic alternatives. He switched me to regular Metformin, which I take twice a day and which costs $20/ 3 mo. It is less convenient, and caused me some initial indigestion, but at least I’m now getting the full dosage.
• Cost of test strips: $500/yr, of a possible $1,000. ½ the recommended daily testing.
• Cost of insulin pump supplies: ~$750/yr. Burned by my unexpected supply costs from 2015, I was very cautious when reordering supplies this year. Due to a fortunate surplus with certain supplies, I mainly reordered insertion sets this year (the part that goes in me). So still no CGM sensors, and I severely rationed most of these supplies to keep costs down. Also, my insulin pump stopped working in the fall. Purchasing a new pump would have cost between $2-3 thousand dollars. I’m currently using an older backup pump, which fortunately still functions.
• Total annual costs: $7,784.36/yr ($3,482 in diabetes costs, out of an estimated $5-6 thousand in total possible diabetes costs)

I held off the on purchasing a new pump, because I’ll have the opportunity to join my wife on her student health insurance this September (she’s a PhD student, and her insurance resembles employer based insurance). Her plan would lower my premiums and cover most of my new pump, so switching seems like a no brainer, though I need to study the policy a little more closely before making the switch.

2017: Silver EPO policy (same insurer)

• Premium: $446.70/mo (no subsidy) = projected $5360.40 (if I were to stay on the plan for all 12 months)
• Deductible: $2,500 in Network
• OoN: Not covered
• Out of pocket maximums: $7,150 in Network
• Total out of pocket costs: Incomplete. I have already purchased insulin once this year (still at $250/3 mo) and I’ve been delaying my supply reorders and doctor’s visits as long as I can. Switching to my wife’s student health insurance plan could give me considerable savings. Otherwise, I estimate that my doctor’s visits and insulin/test strip/metformin/pump supply/new pump costs would certainly approach the out of pocket maximum listed above.

Looking at all this data, several trends become clear. My premiums with this single insurer increased almost every year, from $4,152.12/yr in 2014 to an estimated $5360.40 in 2017, an increase of 29% over four years (in part due to the ACA’s decreased subsidies for married couples). In return, the coverage I have received has decreased by nearly every metric:

• -I was priced out of Platinum coverage and into Silver
• -my deductibles have gone up, from $0/$3,000 in 2014, to $2,500/not covered in 2017
• -Out of pocket maximums: $4,500/$9,000 in 2014, to $7,150/not covered in 2017
• -My coverage has been narrowed, with out of network coverage removed completely as of 2017. My endocrinologist visits have been paid for out of pocket as a result of of this.
• -My out of pocket costs have drastically increased, from $596 in 2014 to an actual rationed cost of $3,842, an out of pocket increase of 484% over three years. This ratio increases even more dramatically if you consider my estimated total possible diabetes cost (if I weren’t rationing my supplies/care) from 2016, which at $6,000, would amount to an out of pocket increase of 906% over three years.
• -I have been switched off two medications, not by my doctor, but by my insurance company. I have been forced to ration other supplies and doctor’s visits, at possible risk to my health.

Campbell’s Thoughts

These trends fly in the face of what most American’s would expect from a modern insurance product. Even with other forms of insurance, where premiums are often subject to annual increases, the annual rate of increase is unlikely to be as steep as 29%. And with other forms of insurance, such premium increases would likely also sustain or increase coverage levels for the consumer. This has not been my experience with my insurer on the NJ marketplace. In my experience, dramatic premium increases have been accompanied by drastic reductions in coverages. I believe that this is happening for a variety of reasons, including:

• -the ACA’s failure to regulate medical costs, both from providers and from medical/pharmaceutical companies, by means of a public option, federal purchasing board, cost controls or other regulatory means. The effect that these runaway costs have on the coverages that for-profit insurers can offer.
• -cost adjustments associated with the reality of for-profit insurers accepting sicker members into their insurance pools. These people would have previously been denied coverage on account of their pre-existing conditions.
• -my insurer’s connections to large, publicly traded, for-profit health insurers, and the possible ways in which market pressures might affect my premiums and coverages. After doing some research on Wikipedia, I learned that my insurer is a smaller New Jersey company, and a subsidiary of a larger regional company, which itself is a regional licensee of a large, publicly traded national health insurance conglomerate. So while my small insurer may not directly answer directly to market forces itself, it still operates within a hierarchy that operates upon the principles of profit and increasing shareholder value by means of calculating medical loss ratios and limiting its health costs accordingly.

Regardless of these reasons, the result is that I have forced to purchase health coverage (out of medical necessity) that is insulated from conventional market forces, and can afford to raise prices on its members while also providing an ever-diminishing product in return.

At the time of writing (June 2017), the ACHA/ObamaCare repeal has passed the House, and is in moving towards a vote in the Senate in a very secretive and underhanded manner. Needless to say, there is reason for me to be gravely concerned. A recent CBO score of the bill predicted that it would strip 23 million Americans of their health insurance. Additionally, specific tenets of the AHCA would weaken coverages for those still insured, and would likely make insurance prohibitively expensive for those like me with pre-existing conditions (if we would still be covered at all). I’m also concerned that, even if the bill fails, Republican leadership will continue to sabotage the ACA until it collapses, at which point they would theoretically be in a more advantageous position to dictate the terms of health reform to a more desperate American public.

In my life, such a turn would be financially ruinous, and possibly a death sentence. The cost of managing my diabetes without insurance, with stripped down insurance, or as part of a high-risk pool would likely bankrupt me. I might be forced off of insulin pump therapy, and onto cheaper, less effective insulins, if I could afford insulin at all. I am educationally privileged enough that I might have the opportunity to be forced into giving up my career and seeking employment with a large employer, one offering employer based insurance. Many people like me would not be so fortunate to have such an “opportunity.” All of these predicted outcomes would be disruptive to my life, destructive to my finances and damaging to my health -- they are unacceptable to me.

Despite all of this, I find myself feeling strangely optimistic. In my opinion, the health insurance industry and its mouthpieces in government have been playing games with Americans’ health coverage for decades. But all the politicking and PR efforts in the world can’t juke the data. Most Americans, especially young Americans, have only seen their health insurance product decrease in quality, while the cost has gone up, over the years. This is borne out in dramatic fashion by my experiences purchasing health coverage through the ACA. Meanwhile the health insurers, beholden to the whims of shareholders and Wall St, cannot opt out of their existing business model, which must always increase profits at consumer expense. This reality causes me to envision a scenario where these companies gorge themselves on consumer money insatiably, to the point of their political death.

We may be witnessing this process in motion. A bipartisan resistance to the for-profit health care industry is tangible and growing, and to see it and participate in it is empowering. From the citizenry’s anger at Republican town hall meetings, to efforts in New York and California advancing state-run single payer systems, to pharmaceutical cost-control legislation proposals in Nevada and consumer litigation in many other places, I wonder if the health insurance industry has bitten off more than it can chew. Time will tell if such staggered, state-level consumer health reform efforts will deliver success against a healthcare industry that has previous dispatched such initiatives with seemingly unlimited money. It is my hope that these consumer health reforms begin to succeed at the state level where they have failed federally, and that these successes may eventually lead to national consumer reforms.

Ultimately, I’m a survivor. I’ve fought, beat and managed internal threats to my health. Now, we all face an external threat to our collective health. A cultural cancer, one which has tricked our immune system and continues to metastasize. To fight it, we must combat it systemically, but also target it locally. I believe we can win this fight, we just have to find the right treatment regimen to defeat such a complex, clandestine and sinister foe.