Chronic Illness and Health Insurance

Source: Katie Willard Virant

Most of us would agree that the physical symptoms of illness create a tremendous amount of stress. It is difficult to maneuver the world in a body that is in pain and exhausted. Anxiety, uncertainty, anger, and grief swirl together, creating a heavy weight carried by people living with illness.

The vast majority of us would agree this is a burden we’d prefer not to bear. It’s so heavy that most of us hope that others—those close to us and those we’ve never met—be spared from carrying it.

Profit Trumps Care

If this is so—if we collectively recognize that illness is a terrible fate we wouldn’t wish on our worst enemy—then why do we as a society have a healthcare system that penalizes those who live with illness? The answer is actually pretty simple, though grim: Profit is a higher priority than health. Insurance companies are making record profits, and they’re doing it by denying care to sick people.

My therapeutic work with chronically ill people increasingly includes processing what it feels like to seek care from a system that denies care in order to make more money. This burden—managing illness in a system based on the denial of care—is on top of the burden of living in a sick body. It has psychological effects that are important to name:

• Anxiety. Patients are perpetually uncertain whether they will receive the treatment that their doctors prescribe. Insurance companies may deny coverage outright or attempt to replace a prescribed treatment with cheaper and less-effective options. Even when a patient has been on a drug for years, insurance companies can and often do question its effectiveness and deny coverage. For many patients, refilling their medication is a constant gamble: Will it be covered, or will insurance flag it?
• Exhaustion. When insurance refuses coverage, the onus is on the patient to fight the decision. The appeals process typically involves sending forms to a P.O. box and almost certainly receiving a one-sentence denial that provides little information. Phone calls to the insurance company frequently involve transfers among staff who often have no knowledge or authority to assist. It takes a tremendous amount of time, energy, and fortitude to fight for treatment.
• Helplessness. Insurance companies often make it so difficult to receive care that patients give up. They don’t believe they can win the battle to receive the treatment they need, so they stop fighting. Take that in: The roadblocks to getting care are so extreme that some patients give up hope of receiving care at all.
• Shame. Because we all know that “this is just how our system works,” we start to believe that we are not worthy of care. We need too much; it must be true that we are burdens on the system. If insurance says we get 10 physical therapy visits in a year but our doctor (and our body) says we need 24, then it’s our fault that we need more than the "average" (non-chronically ill) person. If we need medication to address side effects caused by our primary medication, we're asking for too much.
• Anger. We wonder why the system seems to want us to stay ill. When we read that one large insurance company earned more than $28 billion in 2022, we want to scream, knowing that those profits were made by people staying sick. We wonder why the government doesn’t protect us from greed that may be shortening our lives. We feel abandoned and utterly alone.

Managing Chronic Illness in a “Care” System That Denies Our Needs

Here is the simple truth: Chronically ill people require chronic care. People who live with chronic disease live with an illness that doesn’t go away. Therefore, we require ongoing medications, procedures, and treatments to manage an illness that will be with us always. We require flexibility in care, including trial and error. We require long-term relationships with medical providers who understand the complexity of our cases. This is not our fault. We’re not morally deficient or lazy or histrionic for insisting upon continuous care for continuous symptoms. We’re not selfish for demanding that insurance companies provide us with the service for which we pay: health care that enables us to live as well as we possibly can.

We need to inoculate ourselves against the insurance company’s message that we are the problem. We are not the problem; the system is the problem. We need to speak out about the difficulties we have in receiving care—to each other, to lawmakers, and to the public at large.

“Social murder” is a term coined by Friedrich Engels in 1845 to describe what happens when political and social systems knowingly foster conditions in which people are deprived of what they need to live. Chronically ill people need chronic care. To deprive us of this is social murder. Let’s fight back. It starts with naming the problem, refusing to apologize for being ill, and insisting that our lives take precedence over greed.