Fighting for your life or crippling debt.  

Millions of Americans face this choice, even with health insurance coverage.  A staggering amount of those people battling chronic illness are facing both.

The uninsured populations are more widely known and discussed, but what about those who are underinsured?  

Being underinsured describes an individual having some form of health insurance that does not offer complete financial protection and lacks the ability to cover out-of-pocket healthcare expenses.  Research shows that 41 million working-age adults in the United States who had health insurance all year were underinsured in 2016, an increase from years prior.  With premiums, deductibles and copays increasing, the majority Americans have difficulty or are worried about paying for medical expenses.

Now, think about those with chronic illnesses, who already have extraordinarily high health care expenses.  People with low incomes in the United States are by far the most at risk of being underinsured.  Among those who receive Medicare under the age of 65 — adults who are in fair or poor health and generally have the lowest incomes, have significantly high rates of underinsurance at about half.    

After having to quit my job due to my complex and progressive medical issues, I had no income for months and was facing homelessness.  However, I was eligible for Medicaid which covered almost 100% of my medical expenses. It was a relief once I was approved for long term disability, as it enabled me to secure stable housing.  However, as long term disability through an employer (although former) is taxed, it is counted as income. Unable to work and receiving “income” within a couple hundred dollars of the eligibility cut off, I was now forced to pay for insurance with my limited and fixed income through the Marketplace, set up by the Affordable Care Act.

This meant, until my SSD/SSI hearing, which wasn’t even scheduled for nine months later, and pending approval, I wasn’t eligible for Medicaid.  This is despite having proof of disability. Despite disability, I now had to pay over $100 for health insurance monthly for a plan with high copays and a high out of pocket maximum.  This leaves me with upwards of $1000 in medical expenses a month, which are mainly copays not including inpatient bills, outpatient bills, tests, and office visits that aren’t fully covered by insurance.  To put things into perspective, my ER copay is $400 and specialist visits (which I have about 15 specialists) are $80 per visit. This coverage plan, which was all I could afford, also doesn’t cover ANY out of state medical care unless it is an emergency.  Other items like supplements, alternative care, acupuncture, and even eye glasses, aren’t considered medically essential and aren’t covered.

Dealing with chronic illness and finding doctors that have an in-depth understanding of your disease is difficult and requires many repeat visits.  Unfortunately, many of those doctors aren’t local. I have had my conditions progress because I couldn’t afford to see the specialists I need to see, out of state.  

Countless hours of advocacy and education have educate myself, and thus my local doctors about the plight of the underinsured.  Many of whom, have NO idea about their fees, insurance coverage of costs of treatment, or care. They have no idea that the injection they are prescribing as the gold standard treatment costs me $700 every two weeks.  Or that the infusions that my insurance won’t fully cover would cost me upwards of $10,000 every week. Or that the medical device for mobility assistance that was recommended will cost me $1,500 out of pocket. Or that just coming into the office for a visit will make me overdraft on my bank account.  I am lucky to have local doctors who are understanding of my health financial situation, after being upfront and honest with them about the realities of both living in poverty with chronic illness.

About a quarter of Americans said that they’ve put off or delayed getting health care skipped a recommended medical test or treatment, or did not fill a prescription, respectively.  I have forgone going to my local doctors on numerous occasions, because I couldn’t afford the excessive copays totaling hundreds of dollars a month. I have sacrificed my own health and put my life in jeopardy in urgent and emergency situations, because I knew I couldn’t afford the copay in addition to non-covered expenses in the emergency room.  

Think about it — half of those who are underinsured, don’t seek the healthcare that they need due to costs.  That means about 21 million people in the United States are sacrificing their health because of costs.  

Many financial assistance programs for prescription drugs from the manufacturer, don’t allow patients with federally funded or sponsored insurance to enroll, including those within insurance through the Affordable Care Act.  I have gone days of skipping medications, to help them last longer because I have been unable to afford refills. I have dealt with making the decision to buy groceries or pay for medication.

Unfortunately, I am not the only one with these life threatening dilemmas.  Research shows that About three in 10 adults report someone in their household has had problems paying medical bills in the past year, often with real consequences. For example, among those reporting problems paying medical bills, 73% report cutting back spending on food, clothing, or basic household items and more than half report using up all their savings to pay bills.

Even with insurance, I am in crippling medical debt.  

What’s worse, is that with the one of the proposed health care reform bills, almost every condition that I suffer from counts as a pre-existing condition.  Meaning, I wouldn’t even be eligible for insurance. Then what?

For many including myself, it is not a matter of survival or debt.  The plight for many with chronic illness is of survival AND debt.