A Former Republican Lawmaker’s Constant Fight with UnitedHealthcare’s Medicare Advantage Plan to Stay Alive

My name is Jenn Coffey and I am from Manchester, New Hampshire. At one time I was a fully functioning emergency medical technician (EMT) and held down multiple jobs simultaneously, one of which was as a state representative.

I was a Republican and the vice-chair of the Commerce and Consumer Affairs Committee. For 20 years of my life, I served my community as a medical tech in the hospital and as an EMT in the field.

Jennifer Coffey circa 2010.

I thought we could “fix” health care. I believed in trying to create health care compacts and proper government controls to ensure that the basics were covered. There was a level of expectation I had of what insurance would and should cover. I was blind to reality.

That all changed when I was diagnosed with breast cancer when I was 42. Within one year I had three surgeries. I had walked into the hospital and was wheeled out. I lost everything: my career, my home, everything. I was bed-bound for more than two years.

I was scheduled for an appointment to sign my DNR (Do Not Resuscitate) paperwork.

I had developed severe small fiber neuropathy and CRPS (complex regional pain syndrome), the most painful disease known to modern medicine, also known as “The Suicide Disease.”

Approximately 70% of people with CRPS, from children to the elderly, will consider or attempt suicide. The disease is torture. The pain and neurological symptoms feel like being literally on fire, walking on broken glass while wrapped in barbwire. It is horrific and unrelenting.

I was told that ketamine Infusions could save my life, but the cost was too much for someone living on disability. I was locked in a bed on opioids and narcotics, which stole my mind and ability to interact with the world. It didn’t allow me to live a life outside of what I called “my cell” – my bedroom.

Faced with either giving up and signing my DNR or finding a way to get the money, I started a GoFundMe campaign and sold everything I could think of. I even let go of my car.

The infusions worked and enabled me to get out of the bed. They gave me a life worth living, allowing me to interact with the world outside the confines of my home, but only if I had them regularly. The further apart the infusions took place, the more I would suffer in between.

Coffey and other advocates in front of Rep. Jeanne Shaheen’s office.

Then things got bad as my illness progressed. Playing with infusion timing meant the receptors in my body were not being kept shut down consistently. I was forced to ration infusions because my rent went up $400.

I’ve had to take my struggles public just so I can access the care I need. It wasn’t an easy choice to put my life out there for the world to see. It was my last best hope of continuing my treatments and a desperate act to live.

But I didn’t have to do it alone. I had help from organizations across the country.

UnitedHealthcare was forced to cover my infusions under the pressure from my senators, but every single one has been a battle. The company requires a prior authorization for each and every one and then refuses to pay for it when the bill is due, going back on the prior authorization. Then I fight more to finally get them to pay. My next infusion is only a couple of weeks away and I'm really worried.

I’ve spent countless hours on the phone, losing precious moments of my life to the endless nightmare of fighting to stay alive because I am trapped in UnitedHealthcare’s Medicare (Dis)Advantage plan.

I have preexisting conditions and no one will issue me a Medicare supplemental policy now. I had an insurance agent laugh at me saying exactly that. (Medicare beneficiaries have only six months after they enroll in Part B to buy a supplemental policy to cover out-of-pocket expenses without medical underwriting.) And the state? Well, the state insurance commissioner's office told me to talk to the feds. If only the commissioner would lobby to end this discrimination against the elderly and disabled. New Hampshire law prohibits holding pre-existing conditions against people for the sale of most health insurance policies, but it has a six-word exception for Medicare supplemental policies causing people like me to be locked into horrible Medicare (Dis)Advantage plans that put profits over people.

These plans often have very limited networks and in some cases no provider options in specialties like mine. New Hampshire residents like me are locked out of arguably some of the best doctors and hospitals in the world just a few miles away in Boston. Maine, Massachusetts, and Rhode Island prohibit medical underwriting for supplemental policies but New Hampshire allows it, but only for seniors and disabled people.

Recently, as part of People’s Action’s Care Over Costs demonstration at UnitedHealth’s Minnesota headquarters, I had the opportunity to meet with company executives. At first I thought maybe they would listen. In the end, I realized they were just playing gotcha games and left the meeting disheartened and without much of any hope.

Coffey speaking at UnitedHealth’s headquarters in Minnesota.

I don’t want to die. I’ve said it so many times it makes me feel like puking when I say it. I stood in UnitedHealthcare’s headquarters and told them I didn’t want to die. I left feeling that is the very thing they are hoping for.

I spent my life in the service of others helping to save lives, but now that it’s my life on the line there’s no one there to save me.