I Had No Idea How Much Medicaid Would Cost Me

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Nearly two years ago I was diagnosed with a rare form of Acute Myeloid Leukemia — so rare, in fact, the doctors were not one-hundred percent certain with their diagnosis until it returned the second time. During most of my first rounds of treatment I had insurance through my place of employment — that is, until my six-month disability period expired, and I was fired.

After a few months of remission, I learned that the disease had returned. My doctor gently informed me that I would have to undergo radiation, which was to prepare me for an allogeneic stem cell transplant, which is when the patient receives stem cells from a matched donor (as opposed to an autologous STC, where one’s own cells are used). However, due to sheer cost, the hospital’s financial assistance could not cover the STC — an estimate provided by the Leukemia and Lymphoma Society for an allogeneic STC is $500,000. My only options were to find affordable insurance in the Marketplace or to apply for Medicaid.

We did our research and weighed the pros and cons alongside our specific circumstances. While I had lived paycheck to paycheck throughout my professional career, my husband had managed to put away a significant “nest egg” while working during and after graduate school — but it was a drop in the bucket compared to the expense of the transplant I needed.

When we married, we acted as if his funds did not exist and lived off of what we made monthly. However, suddenly those funds for which he had worked and saved so diligently were keeping me from obtaining Medicaid, which we realized was the only viable option for my specific needs. In order to qualify for Medicaid as a married couple, though I was the only one applying, we had to meet certain income limits as well as a spenddown before I could receive coverage.

Since we could only have necessary assets, we had to provide copious amounts of documentation to prove we were under the financial need limit (i.e. one place to live, whether rented or owned, evidence of total income/assets under $3,000 — less for us because we kept a second car, documentation for all bank accounts dating back three months, pay stubs, taxes, etc.). They even ask on the application how much cash you have in your wallet.

My husband’s savings, along with our monthly income, would not cover long-term insurance premiums, co-pays, and meet required deductibles before our resources would run out, leaving us unable to cover basic living expenses — essentially all the reasons we had to turn down COBRA. I felt angry, indignant, and sad that something totally unrelated to any of my own hard work was now in jeopardy because I had a life-threatening disease. We spoke with the Medicaid experts at the hospital, spent countless hours discussing and seeking wisdom from others, and finally made our decision. We would strategically and legally get rid of the money my husband had carefully set aside in order to save my life.

Never had I imagined that spending money could be so stressful. There are countless stipulations of how you can and cannot dispose of your income, how many cars you’re allowed to have and at what values, and special boxes to check for earmarked monies. For instance, I was allowed to open a special “Burial Fund” account at my bank with $3,500 per person that is untouchable until after I am off Medicaid. We could, and did, pay a year’s worth of rent on our apartment. Then, we made sure our car and rental insurance was paid as far in advance as permitted by the insurance company. However, we were not allowed to give or sell one of our vehicles to a family member for the duration of my time on Medicaid. We were also warned against giving away money when we considered donating funds to a non-profit cause, as it might look suspicious and could complicate the approval process.

The kicker was that, between the two of us, the government stated we could have one car and $3,000 total, in all assets. However, if we kept both of our cars, the one of lesser value would count against the $3,000 (an antiquated policy that ignores how many people are in two-job homes, requiring transportation for each). We both owned our old cars outright, but we decided to sell the car that got worse gas mileage and upgrade for the sake of my daily transportation comfort after my procedure (1.5 hours round-trip), since it wouldn’t count against us–part of strategic spending. After attempting to sell my car, we decided that based on its low worth in the Medicaid system, but personal value when I was again able to drive, we would keep it and take the financial cut. It was the best decision for us, because after 4–5 months I was again able to start driving short distances. But, it means we have to watch our bank account with a hawk eye.

The stress of making sure every detail was correct was excruciating. Nine months later, it is still a constant stress in our life. I worry what someone at the Medicaid office might say if I deposit a birthday check for $50. I anticipate the review every six months, knowing I have done everything I can, but am still concerned they will find something amiss that will cost me my coverage and therefore my ability to receive necessary treatments.

Contrary to what many want to believe, my experience doesn’t show me people excitedly lining up to jump through rolls of red tape in order to receive state assistance. It is a painfully long and even degrading process. Humans are treated as a checklist and their personal experiences mean very little, if anything, to the person processing their file. When it takes so much effort to get on welfare (of any kind), is it little wonder that people are loath to get off before they know they can certainly survive without it? A single mother with children to feed and insure, working a job that barely covers rent and utilities, all without benefits will need help. A young couple who are struggling, while working full-time, to make ends meet because their job doesn’t actually pay a living wage may have to lower their pride and apply for food stamps.

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