Posted on

I Had No Idea How Much Medicaid Would Cost Me

three white chairs in an empty waiting room

Navigating the Medicaid system after my cancer diagnosis left me feeling exhausted and dehumanized.


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.

My option was COBRA, an entirely overpriced insurance that would have left my husband and me with nothing on which to live. I was able to receive almost full financial assistance through the hospital where I was receiving treatment, and when I was declared in remission, we managed to squeeze in the tiny slot of the Affordable Care Act coverage that was actually affordable—mainly so my husband would have something “just in case.”

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.

They even ask on the application how much cash you have in your wallet. Click To Tweet

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.

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. Click To Tweet

The thing is, I know my story is a pretty good one compared to others. Like most people, I am on social media. I am familiar with people who are on welfare and Medicaid for many reasons. I hear comments people make about those who are truly less fortunate (I do not count myself in that category—my situation could be so much worse). The memes that are posted stating who should and should not qualify for assistance are appalling. The judgement cast by comfortable people who think “if I can do it, so can they” is sickening. The belief so many people have, that it is an easy system off of which people want to leech, is pure propaganda pushed by the greedy elite onto the masses for their own agendas.

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.

These are just a few situations of thousands where the many who claim we need to “help our own first” want to turn a blind eye rather than actually seeing their tax dollars do good.

Personally, I have to consider various factors prior to getting my next job. I cannot wait to get back to work, but I am still officially disabled. I need Medicaid while I continue treatment and recovery. Before I can come off of Medicaid, I have to secure a position with benefits, a salary that will allow me to pay out of pocket fees until I’ve hit my insurance deductible, and the security that if I don’t qualify for much financial assistance, I’ll still be able to get the healthcare I need as a cancer survivor.

The belief so many people have, that it is an easy system off of which people want to leech, is pure propaganda pushed by the greedy elite onto the masses for their own agendas. Click To Tweet

I don’t fit the “stereotypical” role of a welfare recipient. I am a professional, young adult who was diagnosed with a deadly disease and has had to make painfully stressful decisions in order to give myself the best shot at living. But because I don’t fit the bill, I can use the general public’s false assumptions to expose the fallacy of their definition of poverty, what material possessions someone receiving government assistance can have, and what their lifestyle can look like.  

For instance, we drive a used Prius and an old Civic. We shop at Aldi. We use iPhones we bought before my diagnosis (over two years old) and maintain them well. I strive to make my home cozy and a place where my husband and I can work and relax, since we are here practically 24/7. But many would want us to be car-less or in a junker, using a flip phone (nothing against those), and living in a dilapidated house if they knew I was receiving Medicaid.

When I go into the doctor’s office or call my case worker at social services, I cannot help but feel like I’m viewed as slightly less worthy simply because I need help from “the system.” I speak extra clearly and efficiently to communicate that I am aware of the process and want to know what they need me to do. I refuse to be one more person they think they can railroad over because of a complex and confusing system. They will acknowledge my humanity.

Our society wants to see the poor look impoverished, and if they don’t, society lacks the desire and drive to help. After all, if you don’t look pathetic, how can they judge you? The “older” generations cannot comprehend that holding a full-time job is often not enough in the current economy and job market. Thousands of college graduates wind up serving you your morning latte, and I can guarantee that, for most, that is not their passion. Families where one adult is a caregiver and the other is disabled face losing their food stamps when their teenage, but not yet adult, children get high school jobs—like society says they should. The state counts that as household income, even though most families would consider that simple spending cash, not grocery money.

The system is flawed.  Currently, the Trump administration wants to cut assistance to “the three big entitlement programs,” as Senator Mitch McConnell stated in an interview with Bloomberg, as a solution to lowering the national debt.  This comes on the heels of approval of a $675 billion budget for the Department of Defense—only furthering unending, pointless, greed-driven wars, death, and destruction.

We say we want to help the poor in our nation, but do we really? The proof is in the policies—policies that oppress, stress, and even kill.