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Blood Cancer, Insurance with Lifetime Limits

Theresa BrownGold's painting "Insurance with Lifetime Limits" for her art project, Art As Social Inquiry.

(Interview 6/2017, oil on canvas, 40 ins. x 30 ins.)

Artist Note (2018)

This portrait story is my response to Speaker Paul Ryan’s February 21, 2017 tweet about healthcare freedom.

“Freedom is the ability to buy what you want to fit what you need. Obamacare is Washington telling you what to buy regardless of your needs.” Paul Ryan is the Republican Speaker of the US House of Representatives in 2017.

Speaker Ryan’s healthcare freedom policies are akin to a person cutting off her hands and saying she is free because she no longer needs to buy gloves.

Speaker Ryan’s tweet refers to the GOP’s 2017 plan , (that morphed into plans – plural – after several failed attempts to repeal the Affordable Care Act (ACA), to replace the ACA with a law that opens the door for policies making it more difficult for individuals to get adequate health insurance coverage.

The continued efforts beyond the Speaker’s February tweet were deliberate attempts to sabotage the ACA and destabilize insurance markets.

Speaker Ryan’s healthcare freedom policies are akin to a person cutting off her hands and saying she is free because she no longer needs to buy gloves. There is no freedom for people without good health insurance when they need it.


“The insurance did not cause us any trouble. And this is how insurance should work for everybody. ” Carlo said.

But a blood cancer diagnosis caused the family to take a closer look.

Their policy had a $1,000,000 lifetime limit for the entire family. Would they be responsible for Carlo's bills exceeding the lifetime limit? And what if another family member got very sick? $1 million did not seem like enough.

Art As Social Inquiry’s subjects, as well as many who share their health insurance nightmares, often say that dealing with the insurance was worse than the disease. In Carlo's case, the insurance was good, but the family still experienced the terror that comes with feeling that a lifetime limit might leave them underinsured.

“President Obama took care of that. We don’t have lifetime caps anymore.” The insurance rep said.

Speaker Ryan's quip about healthcare freedom felt especially galling to this artist in light of the struggles I have been documenting for 10 years. How do we measure the desperation around insurance that eats up so much psychological and emotional vigor in our lives?

Charles Gaba is a healthcare analyst at On February 22, 2017 he responded to Speaker Ryan’s tweet about delivering freedom to Americans because they will be able to “buy what you want to fit your needs…” Gaba wrote, "“buy what you want to fit your needs??” The ENTIRE POINT of health insurance is that you DON’T KNOW."

Charles Gaba tweets a thorough explanation of how insurance works. See addendum for Gaba's rebuttal. (Please note, Speaker Ryan.)

Carlo Trovato’s story shows what healthcare freedom looks like when a person gets very sick.


A study. Oil on canvas, 24 ins. x 20 ins.

(from a 2018 interview)

Public School Teacher, Age 46, Insured

Carlo Trovato developed flu-like symptoms – no energy, headaches, and pain. He never felt the need to get a primary care doctor because he was rarely ill.

He found a doctor who prescribed antibiotics to treat Carlo’s pain. But the pain persisted.

“I hurt in my bones, so much that I could barely move.”

The pain subsided but not for long. Carlo was on an outing with his students when the pain's savage return slayed him. “I found a field, and lay in the fetal position in pain.”

Carlo made an appointment with his wife’s primary care doctor. A second blood test confirmed it. Leukemia. Carlo immediately went to a hematologist oncologist. He underwent a bone marrow test. The next day the results confirmed the leukemia diagnosis. By 7pm Carlo was in the hospital for an indefinite period, probably about 3 weeks, the doctors told him. Carlo thought, “OK, 3 weeks, and I’m back to work.”

Instead, Carlo ‘s treatment prevented him from working for a year. Thankfully, he had accrued over 200 sick days. He continued to get paid, making his recovery a little less stressful.

Acute lymphoblastic leukemia, blood cancer. Carlo Trovato was 42 years old, a former triathlete, and training for a marathon when he received the diagnosis.

The diagnosis threw the Trovato family into turmoil. “Was he going to die?” quickly followed by “Will the insurance cover it?”

Carlo’s wife, Tracy, sprang into action. She discovered that their insurance policy had a $1,000,000 lifetime limit for the entire family.

If she and their two children were to fall ill on top of Carlo’s leukemia treatments, medical bills could bury them, and possibly lead to bankruptcy. And what if Carlo had more than one cancer scare? Would his bills exceed the $1,000,000 lifetime limit?

Tracy had heard horror stories that dealing with insurance companies was sometimes worse than the illness. “I knew we had to focus on getting well. I was terrified. ”

Tracy and Carlo called the insurance company. “Can we treat leukemia for a million dollars?”

“President Obama took care of that. We don’t have lifetime caps anymore.” The insurance rep said

The Affordable Care Act, the new healthcare law, outlawed lifetime limits on insurance policies. The Trovato family did not have to worry about insurance coverage running out despite the million dollar limit listed in the policy.

With the nullified lifetime limit, it turned out that Carlo and his family have very good health insurance through Carlo’s job as a public school teacher. After $425,000 in medical bills, Tracy stopped keeping track of the cost of Carlo’s care. The insurance company was paying the claims.

“The insurance did not cause us any trouble. And this is how insurance should work for everybody. ” Carlo said.

The family was now free to focus on helping Carlo, and all the other life stuff coming at them. “In four months time Carlo’s mother died. The cat had to be put down. The cancer diagnosis happened. And Carlo’s sister died.”

Carlo endured 8 chemotherapy cycles. After 3 cycles his bone marrow was clear, but he still had to finish the treatments followed by 3 years of taking chemo in pill form every day. Between the first and second treatments, Carlo started to shake uncontrollably. He was admitted to the hospital for 3 days. He had 3 emergency hospitalizations over the course of his treatment. All told, however, Carlo tolerated chemo very well. So well, in fact, that he was out of the hospital in 11 days instead of projected 3 weeks. His blood rebounded quickly after the toxic chemo killed everything in it. “But I was very tired. Food tasted different. My body felt different.”

Disease forced Carlo to face death. At first he bargained. “I will go through this so no one else in my family ever has to.” He was not afraid to die. He was worried about not being there for his wife and kids. “That made me sad.” Carlo says, “Now we are quicker to do the things we really want to do as a family. We don’t put off things.”

Carlo and Tracy are very aware that Carlo now has a preexisting condition. They worry that if the Affordable Care Act is repealed, or consumer protections are weakened including bringing back preexisting condition discrimination, the family’s choices could be limited. “Could I take a new job? Would I be covered? What if we need to move?”

Subject’s Statement

Having been diagnosed with cancer and going through all those treatments and subsequent doctor visits and bone marrow biopsies, it has made me think a lot not just about my own health but the state of health care in America right now. I don’t understand how a middle class family in this country could be financially devastated by an illness. Looking at the stats, almost 50 percent of Americans will be diagnosed with some form of cancer in their lifetime. It’s not a rare illness, so why should it bankrupt a family?

Our health care is broken and while the ACA isn’t perfect, it made strides to fix some basic and systemic problems that made health care unaffordable for too many people. To repeal it is one of the biggest mistakes our government can make. It needs some fixing in parts, some tweaking in others, and to be left as is overall. From talking to others who have undergone major illnesses, the benefits the ACA provided to Americans all over the country should be enough to keep it in place. I would be gravely ashamed if it came down to me being lucky to get cancer when I did, but my own kids, God forbid, may find the exact opposite of that in their lifetime


Charles Gaba tweets a thorough explanation of how insurance works.

-“buy what you want to fit your needs??” The ENTIRE POINT of health insurance is that you DON’T KNOW

-Technically speaking, no one “needs” insurance *right up until the moment they get sick or injured*. That’s the entire point of having it.

-At the moment, I don’t “need” chemotherapy or expensive prescription medications…but some day soon I *might*. This isn’t rocket science.

- If you left it up to people to “only buy what they need” re: health insurance, most would probably choose crappy mini-meds like this. From the Kaiser Family Foundation : For example, McDonald’s “McCrew Care” benefits…requires employees to pay $56 per month for basic coverage that provides up to $2,000 in benefits in a year and $97 per month for a Mid 5 plan that provides up to $5,000 in benefits. Ruby Tuesday charges workers $18.43 per week (going down to $7 after six months of service), for coverage that provides up to $1,250 in outpatient care per year and $3,000 in inpatient hospital care. Denny’s basic plan for hourly employees in 2010 provided no coverage for inpatient hospital care and capped coverage for doctor office visits at $300 per year.

-Wow. $2,000 in benefits per year? Awesome! That’s enough to cover…um…one day in the hospital per year, and absolutely nothing else whatsoever!

-…so you end up with most people being severely underinsured, then not having any meaningful coverage at all when they actually need it.

-Most people don’t require expensive treatments for most of their lives, but WILL require it at SOME POINT in their lives. The WHOLE POINT…of insurance is to spread the risk for as many ailments as possible among as many people as possible, so that collectively, they cover...the costs of the small percentage of people who DO require it at any given point in time.

-As a man, I’ll never get pregnant…but women are unlikely to get prostate cancer either. And everyone was born to a woman at some point.

-So my premiums go to help cover some diabetes patient today…and someone else’s premiums go to help cover my hip surgery tomorrow, etc.

-Does that mean that everyone should have to buy a Platinum plan that covers 90% of everything under the sun? No…

-…but not everyone has to buy a Lamborghini, as Ted Cruz falsely claimed was the case under #Obamacare.

-Government regulations DON’T require everyone to buy a Lamborghini. They DO, however, state that in order to be street legal...every automobile sold has to have 4 wheels, an engine, steering wheel, seat belts and other various standard features.

-In other words, you can sell golf carts, you just can’t claim that a golf cart is a street legal automobile.

-by the same token, the #ACA doesn’t ban ‘mini-meds’, it just says that in order to be defined as actual health insurance, a policy has to…

-…cover actual HEALTHCARE TREATMENTS including hospitalization, ambulatory service, surgery, mental health, etc.

-And *unlike* automobiles, which not everyone needs, healthcare coverage is something which everyone DOES need at some point or another

-…and since you never KNOW when you’re gonna need it, it only works if everyone’s always covered. /end

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