How I Nearly Lost My Life: the Healthcare Crisis is Far From Over

“It was like having a terminal disease and choosing hospice instead of treatment, but without the hospice, and instead of getting drugs to ease the pain, being given drugs that made it worse until I was correctly diagnosed in an emergency room eight months later and told I had days to live if treatment did not succeed.”

-Conversation with a clinician April 5, 2017

In 2014, I found myself caught in the cross-hairs of America’s healthcare crisis. On Social Security Disability, I crisscrossed the country with two golf-ball-sized brain lesions trying to find a state that would sell me comprehensive insurance after a life-threatening hospitalization.

That summer, after a misdiagnosis of Ménière’s disease, I experienced severe fatigue, nausea, migraines, vertigo, tinnitus, and double vision. My apartment turned into a labyrinth — one night I fell and bruised a rib — and I could only walk a few blocks or drive about a half-mile before the onset of vertigo and nausea which could induce hours of vomiting and exhaustion. Friends dropped in occasionally, but, by and large, I was cut off from the world. (My only family is a previously estranged cousin in Boston.) Although my service dog helped me navigate the world, the isolation, compounded by the lesions’ effect on my mood, led to depression and acute suicidality.

I also have PTSD and other psychiatric conditions. My physical and psychiatric conditions are inextricably linked. I can’t have care for one and not the other.

During my second emergency room visit doctors finally diagnosed me correctly. The two lesions were caused by sarcoidosis that began in my liver and then appeared in my brain.

Sarcoidosis, commonly called sarcoid, is a rare autoimmune disease that can affect multiple organs and causes an overactive immune system to attack healthy cells, creating a mass of potentially dangerous tissues called granulomas. It is a mysterious disease: no one knows why it is found only in certain races around the world and why in America it is most commonly found in African American women. It has an unknown etiology and has received relatively little funding for research.

I had no prognosis and doctors now feared the lesions could cause permanent damage or kill me if immediate inpatient treatment did not succeed. I received a high dose of steroids intravenously for four days straight: the equivalent of 320 times the daily amount of prednisone, a steroid I had taken orally years ago that had caused hypomania, major depression, severe suicidal ideations, and ultimately led to inpatient psychiatric hospitalization.

The treatment reduced the size of the lesions. However, my troubles were far from over. Even though I am on Medicare because I am disabled, I faced bankrupting medical expenses.

While Obamacare enacted the most significant reform of the health care system since the introduction of Medicare, some disabled Americans under 65, including veterans, remain vulnerable to crippling costs in most states if severe illness strikes. People on Medicare are not eligible for Obamacare, and Medicare only covers 80% of medical costs. It doesn’t include an annual cap for the 20% copayments that can become enormous with expensive hospital treatments. I also was forced to confront another pillar of the health care crisis: a lack of parity between coverage for mental health care and coverage for physical conditions. Even after I finally found medical care, it would be months before I could find psychiatric care. I often felt I needed an advanced degree in healthcare administration to navigate the bureaucratic maze; my journey through the maze began with that second emergency room visit.

After discharge, still suffering from chronic fatigue and double vision, I had my first follow-up appointment with a rheumatologist. Every six weeks, I would require an infusion of Remicade, an immunosuppressant and anti-inflammatory. Each treatment would cost about $12,000; my 20% would be $2,400.

The doctor referred me to the hospital’s financial aid department, but patients with insurance didn’t qualify for assistance.

Because I had no prognosis, even if treatment succeeded, the sarcoid might flare up again, necessitating more infusions, hospitalizations, MRIs, and countless medical appointments.

I am disabled, but my monthly income from Social Security disability benefits — calculated as a percentage of the income I earned before I became disabled — is higher than the maximum allowed to be eligible for Medicaid. I needed to purchase Medigap, a supplemental insurance, to cover the copayments not covered by Medicare. Some states do not sell Medigap to disabled citizens under 65. Americans facing this dilemma who “want” to pay an estimated $350 monthly premium for insurance to cover copays likely require expensive treatment. It’s not profitable for insurance companies to sell that coverage; red states generally don’t require insurance companies to sell it. I lived in South Carolina, and my annual total copays could have easily exceeded $25,000.

I looked online for states that sold Medigap and had cities with good social services and excellent medical care. My short list included Baltimore, Boston, Philadelphia, Seattle, and Raleigh-Durham. I leaned toward cities with temperate climates, fearing that with a renewed onset of even mild vertigo ice and snow would be dangerous. I began scouting out cities across the country.

A few weeks later, after returning exhausted from Philadelphia, I learned I had jeopardized an application I’d submitted for subsidized housing in Seattle by making an error on my taxes; I had filed just after my hospitalization. Because of the number of applicants for each apartment, all changes had to be made in person. I had until Monday afternoon, just two days, to submit a new application. My cousin advised me to box all of my belongings. She surmised management would not ask me to make the trip if they did not think I could qualify for assistance.

I waited for a taxi in the dark hoping never to return to the city I had called home. During layovers, airline attendants pushed me in a wheelchair between terminals. I didn’t have the energy to walk nor the cash to tip.

I holed up at the Belltown Inn, and one of my first nights still haunts me: the hotel lacked air conditioning and that summer was unusually stifling. My room overlooked a moonlit gravel dog park where a woman sat atop a concrete spiral sculpture scribbling in a notebook. Her pit bull barked incessantly. Dazed by sleeping pills, I went to the bathroom, lifted up my shirt, and stared at the painful rash ringing my torso in detached disbelief. My cousin suggested that the rash, like my upset stomach, was stress induced. “Mark,” she said, “you must be running on fumes.”

At a neighborhood clinic, the doctor diagnosed the rash: shingles caused by the Remicade. My sleep medication dulled the pain somewhat. The doctor referred me to a sarcoid specialist and also referred me for an emergency mental health evaluation.

Despite the boom in Seattle salaries and real estate, Seattle’s homeless population had increased more than 20% in 2014. The lumps of bodies in sleeping bags everywhere served as constant reminders of how easily I could fall through the cracks. My emergency savings, a high credit card limit, willpower, and a hard-earned resourcefulness contributed to my survival. A week later I qualified for housing. My celebration would be short-lived. Already past due on my second treatment, I had a two-week window before my condition could worsen again. The heat pressed down.

I set up shop to shepherd my Medigap application: an inflatable exercise ball served as my chair and I used a coffee table left by the previous tenant as a desk. An air mattress was my only other piece of furniture until my belongings arrived.

I was now caught in the bureaucratic maze. Washington state Medigap advisors had misinformed me of both the deadline for getting coverage and the paperwork required. Enrollment was not on a rolling basis; applications were required to be filed by the first day of each month. A missed deadline meant 30 more days without coverage. I also needed a utility bill as proof of residency. After many calls, I convinced Blue Cross and Blue Shield to accept my lease as well as my application for utilities as proof of residency. However, the company also required proof of my previous residence because Medigap is only available to new residents of the state. (Insurance companies fear that applicants will move to another in-state residence and apply for coverage using the new address.)

After first learning about potential treatment costs, I averaged about 20 calls a day: airlines, hotels, moving vans, hospitals, movers, social service agencies, state officials, insurance companies…the list seemed endless. The number of calls kept increasing. Without realizing it, I had grown hyper-vigilant. After falling asleep well past midnight, I woke up a few hours later to tie up loose ends on the East Coast. As business hours began on the West Coast, the calls continued. By the time my belongings arrived, I was so unstable that I pictured using the box cutter on myself each time I opened a package. In order to avoid psychiatric hospitalization, or worse, I Skyped with a former therapist and utilized the limited services of University of Washington’s short-term urgent mental health care clinic.

Meanwhile, I received a call from the University of Washington infusion center informing me that it would not receive the medication in time for my infusion. It was available at a different location, but I would need a new referral from my doctor. I couldn’t call the neighborhood clinic directly because all calls went through a central call center. The nurse said she would send an electronic message to the clinic but advised me to walk there and speak to a staff member in person. The clinic was a mile away. It might as well have been back in South Carolina.

Because Seattle’s homeless constantly entered without appointments, the front desk routinely turned people away. Just before 5 PM on a Friday afternoon, an irritated receptionist repeatedly asked me if I had an appointment and grew angrier when I responded that I didn’t, but that I had an emergency. (Waiting for hours at the ER was pointless because it wouldn’t have Remicade on hand, and the ER was unable to schedule outpatient appointments.) It took nearly half an hour to convince him to phone a nurse and when eventually he did, he put down the phone, and repeated the question: “What are your symptoms?” I paused. “I have two large lesions in my brain.” Clearly exasperated, he picked the phone back up. Patients tried not to stare.

The clinic nurse worked into early evening with the on-duty attending, the infusion center, and even my hospital in South Carolina until I had a treatment scheduled. Angels intervene.

Soaring health care costs and insurance gaps can cripple Americans without a safety net. Yet after I relocated, finding physicians was easy compared to the equally important task of finding mental health care. Armed with a list of providers I had collected from the hopelessly outdated Medicare website and from Psychology Today’s website, I boarded a bus for my first infusion. At the clinic, with an IV attached to one arm, I continued making calls to therapists.

In Seattle, there are typically two kinds of therapists who accept Medicare: those who feel a moral obligation to do so and those who need the business. The former had full client lists and often cap the number of Medicare clients they serve because of low reimbursement fees, and the latter were often unprofessional. (One therapist worried about my service dog because she brought her untrained puppy to work, and the neighboring massage clinic had already complained about the barking.) It appeared my only option was a student clinic that didn’t accept Medicare. The therapist I Skyped with sent out an APB to The Washington State Society for Clinical Social Workers, and I received two new names. It had taken only one call to find a physician. It took dozens of phone calls and over four months to find a qualified therapist who accepted Medicare.

Finding a psychiatrist would take even longer. Because of my complex psychiatric diagnoses (bipolar type II complicated by PTSD and seasonal affective disorder), as well as neurological and liver problems, I needed management of psychotropic medications.

Months later, my PCP referred me to his clinic’s social worker to enlarge my safety net. She informed me that her clinic had a psychiatric department that waived copays for low-income patients. However, it accepted patients with complex enough conditions to make good case studies for residents. During my intake, the attending assured me I would qualify. It took seven months to find a psychiatrist I could afford.

It’s tempting to think the largest problem confronting disabled Americans is that if we get sick, really sick, we might have to uproot lives, families, lose jobs and friends, and move to a new state for comprehensive coverage. However, the lapses in care in our country’s mental health system turned out to be more significant for me. Separating “mental health” and “physical health” is a false dichotomy.

A few months later I came across an article about toxic stress. According to the DNA Learning Center, “Toxic stress is a term used by psychologists and developmental neurobiologists to describe the kinds of experiences, particularly in childhood, that can affect brain architecture and brain chemistry. They typically are experiences that are bad for an individual during development such as severe abuse.”

When I mentioned the article to my therapist, she told me about a study by the Center for Disease Control and Prevention (CDC) that links toxic stress to increased risk of diseases such as autoimmune disorders, liver conditions, and neurological conditions. This was my childhood and these are my conditions.

The CDC’s study, called the Adverse Childhood Experiences Study (ACEs) lists a number of predictors that can lead to problems like addiction, suicide, and disease. These predictors consist of traumatic experiences that include physical, emotional, and sexual abuse. According to the website, “Think [of your ACE score] as a cholesterol score for childhood toxic stress. You get one point for each type of trauma. The higher your ACE score, the higher your risk of health and social problems.” The site notes that when the score reaches a four or higher “Things start getting serious: The likelihood of chronic pulmonary lung disease increases 390 percent; hepatitis, 240 percent; depression 460 percent; suicide, 1,220 percent.”

My ACE score is a six, and I suffered more than one additional trauma not measured on the ACE test.

My sarcoid specialist believes that given the migraines and grand mal seizure I had as a child, the rarity of sarcoid among Caucasian Americans, and how uncommon it is for sarcoid to appear in the liver and the brain, toxic stress likely led to my brush with death.

Toxic stress doesn’t only affect poor and marginalized communities in America. The CDC’s study targeted middle class Americans like me.

Given the number of Americans affected by mental health problems, the issue of providing mental health care access has been and remains problematic. The CDC reports that suicide rates have increased 24% between 1999 and 2014. In addition, the CDC also states that approximately half of Americans will suffer from a mental illness during their lifetime. However, the CDC estimates that only a quarter of adults in the United States actually report having a mental illness; the disparity between the numbers shows the stigma that still surrounds mental health issues.

Until 2008, many health insurance companies provided better coverage for physical illness than they did for mental health disorders. Insurance often covered medical at 80% and mental health at 50%. Finally, mental health parity laws were introduced that required coverage of services for mental health, behavioral health, and substance-use disorders to be comparable to physical health coverage.

Still, the reality remains that it is harder to find mental health care providers that accept insurance than it is to find physicians that accept insurance. In 2016 NPR pointed to a survey by the California Association of Marriage and Family Therapists which found that nearly half of therapists in California don’t accept insurance.

In addition, a survey published in JAMA Psychiatry in 2014 found the same to be true for California psychiatrists. For its story, NPR interviewed clinicians, asking why they didn’t accept insurance and three reasons were brought up: low insurance rates, barriers to joining a network, and headaches involved with paperwork.

After speaking with a number of mental health care professionals, I learned that the barriers for accepting Medicare are much more difficult to navigate, or at least have the reputation of being much more difficult to navigate. Also, each state has its own rules concerning which types of professionals are eligible to bill Medicare, resulting in a pool of providers that is smaller than it could be.

Although the paperwork is less onerous than it used to be, providers complain that the Medicare website is confusing and they often give up. Individual providers seldom have the resources to navigate confusing websites and take on cumbersome paperwork burdens. As one provider said, “In the past I’ve attempted to work with Medicare, and what should have been simple required additional paperwork and then more paperwork, and I couldn’t continue to spend any more additional time on it. I’m just me — I’m not in a system that could straighten it out like a hospital or a group of practitioners can. I can’t spend an hour or more a week with paperwork just for one client.”

Dr. Susan Kaufman, a clinical psychologist, said, “The process to become a provider is particularly convoluted — lots of paperwork and documentation back and forth that hasn’t quite made it into the digital age.” She added that although “the website for providers which was previously quite clunky has improved recently and the payment process for established providers runs smoothly, it is the horror stories that people remember.”

If mental health care providers associate Medicare with horror stories and are already gun shy about accepting insurance from private networks, then patient access to potential Medicare providers will remain formidably low. The pool of mental health care professionals accepting Medicare shrinks even further because Medicare reimbursement rates are lower than private insurance reimbursement rates. One licensed mental health counselor said, “I couldn’t continue working with Medicare, especially when they were capping the reimbursement rate lower than private insurance companies did.” His view is a common refrain.

Mental health care rarely enters the mainstream dialogue. It comes up after tragedies: the shootings at Sandy Hook or in Charleston, South Carolina. It is brought up as an alternative to gun control by politicians, but the discussion doesn’t last. After the Sandy Hook shooting in 2013, President Obama called for increased access to mental health services for young people aged 16 to 25, but that proposal faced stiff opposition from the gun lobby and failed in Congress. In addition, when the mainstream media discusses PTSD it is usually in the context of care for veterans returning from war rather than as a result of familial dynamics.

Our society needs to provide the resources and coverage to treat mental health issues, and we need to stop stigmatizing mental illness. Lawmakers must put teeth into the mental health parity act and make mental health care accessible. We must also restore Medicare’s image, making it easy to work with Medicare for both patients and providers. Not only would this create a more humane society, but it would also help reduce ballooning systemic healthcare costs.

The recent efforts to repeal Obamacare show there will be repeated attacks on the various provisions of the law. Particularly vulnerable are the essential benefits that required coverage under Obamacare. Mental health was one of the core provisions on the chopping block in the first attempt because of the demands of the Freedom Caucus, and the CBO predicts that people who need mental health care coverage could see their costs balloon if the Senate Republican health care bill passes.

Furthermore, beyond the issue of mental health, analysts fear that the current administration and Republican congress will not provide incentives for insurance providers to stay in the state markets. That destabilization will lead to even greater disparity between the states in access to insurance and healthcare. This creates the frightening proposition that my story, leaving home and crossing state lines during a medical crisis, will again become a wide-spread phenomenon as sick people face bankruptcy to get adequate care.

I wrote this on an idyllic corner of Bainbridge Island facing a mooring of yachts and sailboats with names such as Wild Horses, Escape, and Whimsy. Behind me, stately homes stood behind a “no trespassing” sign. When I took the ferry back, I was greeted by the homeless, lying in sleeping bags.

The sun bathes the rich and the poor. Disease-physical and psychiatric-strikes the rich and the poor. In Seattle, for nine months of the year, the rain falls on all of us. The battle for health care rages on from coast to coast, through chambers of commerce and in Congress, in the halls of the Supreme Court, and in election campaigns, to decide who receives shelter from the storm’s inevitable fury.