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Healthy Living

Will An ACA Replacement Cover Me?

I use 1,500 iPhones worth of health care every year.

I am one of many Americans with a chronic health condition. I admit I’m worried about “coming out” here: judging by Republicans’ attitudes toward people like me, I’m painting a target on my back by revealing how much I rely on insurance. It feels like the more your chronic illness costs, the more they want you to just die already and let the rest of the country get on with their lives. I’m not sorry to disappoint them: I won’t go quietly. Here’s my story of how I became the worst kind of paying customer to health insurance companies.

In January 2013, I stopped moving. What began with a week of numbness and tingling in my feet turned into paralysis, ascending from my legs on a Saturday to my entire body by the following Tuesday. At my worst, I could swallow but not chew food or speak clearly. I could breathe on my own, but my respiration sank precipitously close to needing mechanical support. I could not close my eyes, so I slept with them open for weeks until a doctor ordered them taped shut. I was paralyzed from head to toe, and I remained in hospitals and a nursing home for seven months.

During my hospitalization, I was quickly diagnosed with Guillain-Barré Syndrome (GBS), an autoimmune disease that attacks the myelin sheath in the body’s peripheral nervous system. After my paralysis lasted past eight weeks, my diagnosis was adjusted to the chronic form of GBS, called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). There is no cure, but damaged myelin can regenerate if autoimmune processes are halted by treatment, and patients lose and regain function, often more than once. The many months I spent in hospitals and a nursing home represent the slow regrowth of my peripheral nervous system’s myelin. I came away with some permanent nerve damage in my legs, but I can walk with a cane. I’m even walking some without the cane now, four years after my hospitalization.

The first-line treatment for Guillain-Barré Syndrome and CIDP is intravenous immunoglobulin (IVIG). Because I have the chronic version of this illness I require infusions of IVIG for four consecutive days every 28 days. The annual raw cost of my treatment is close to $1.5 million a year. Without this treatment, my immune system would return to attacking my peripheral nervous system, and I would need to be hospitalized again (where I’d be treated with—you guessed it—IVIG), or I could just wait until my diaphragm muscles stop working and I stop breathing.

“So, Republicans, now that you know what the stakes are for me, please tell me your plan for health care coverage for me and others like me. Or is the plan that we just die?”

I was fortunate enough to have coverage under COBRA: my illness began just under a year from my departure from a local Internet company. After my convalescence, I tried and failed to work in my field, overwhelmed still by fatigue—a common outcome in CIDP. Because I could not work, I went on Social Security Disability. After two years on SSDI, I was automatically enrolled in Medicare. I intend to return to work if and when I am physically able, and after a period of successful work, I will no longer be on SSDI or Medicare, so I will need to buy private insurance. I was counting on the ACA to make that possible. Now I do not know whether Medicare or the ACA will survive another six months, and I certainly can’t afford IVIG out of pocket.

So, Republicans, now that you know what the stakes are for me, please tell me your plan for health care coverage for me and others like me. Or is the plan that we just die?

The Congressional Budget Office predicted that by 2030, Paul Ryan’s plan of premium support would increase the cost of covering Medicare-eligible Americans by 41 percent and will double the amounts that individuals currently pay for coverage. The latter is untenable for me and the former is foolish for our country. Has our memory of elders languishing in poverty before the New Deal so faded that we will consign a new generation to that misery? Does America really need another lesson in life without a safety net?

Autoimmune diseases do not strike people because of unhealthy choices in life. They aren’t linked to smoking or diet or any other aspect of lifestyle. Those who say that if you don’t want to have high insurance premiums, just make healthy decisions are speaking in total ignorance of people like me. Those who think personal health savings accounts will cover the cost to treat autoimmune diseases are equally ignorant. And a $1 million cap on coverage won’t even cover a year of IVIG.

Ask yourself how you would cover over $1 million per year in treatment costs. What would you do without insurance? Why do we pay insurers if not to step up when we need care? If you have a plan for me that I don’t know about, please let me know. If your plan is for my health care to end, please let me know. If you have no advice for me, I should hear that from you, too. Although my knowing that you have no plan for me is personally important, your knowing it is yet more important for our country. To date, you have not demonstrated that you understand the consequences of repeal and replace.

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