‘Help…I am Trapped in Medicare (Dis)Advantage’
Jenn Coffey dedicated her life to saving others as an EMT—now she’s become one of the many who find themselves under direct threat from a profit-driven health care industry that makes its money denying necessary care.
By Jenn Coffey
My name is Jenn and I am from Manchester, New Hampshire. At one time, I was a fully functioning EMT and holding down multiple jobs at once, one of which was as a State Representative.
I was a Republican and the Vice-Chair of Commerce and Consumer Affairs. For twenty years of my life, I served my community as a medical tech in the hospital, and as an EMT in the field.
I thought we could “fix” healthcare. I believed in trying to create healthcare compacts and proper government controls to ensure that the basics were covered. There was a level of expectation I had that insurance would cover. I was blind to reality.
That all changed when I was diagnosed with breast cancer at the age of 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 over 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, or other horrific and unrelenting symptoms.
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 and sold everything I could think of, including letting 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 farther apart the infusions took place, the more I would suffer in between.
Then things got bad, and my illness was progressing. 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. My neurologist started me on LDN (Low Dose Naltrexone). However, the pharmaceutical company that makes the medication will not make it in the low doses that I need because it isn’t profitable to them. I have to use a compounding pharmacy to get the medication and pay cash.
I’ve had to take my struggles public in order to 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. People’s Action created a video, a petition, and a letter demanding that United Healthcare cover my care. There was a full-on social media blitz. The Center for Health Progress in Colorado blasted out my story, as did the other 16 organizations under their umbrella.
Members of the Northwest Bronx community and the Clergy Coalition, Progressive Maryland, and West Virginia Citizens Action Group, blasted it out to all of their members, contacts, and social media platforms.
The People’s Lobby in Chicago knew my story inside and out and warned people not to sign up for Medicare Advantage. The social media storm resulted in contact from United Healthcare on Twitter. They didn’t call me. They commented on my post saying they wanted to talk to me. I went to Washington, DC with Be A Hero and had meetings about my story with Senate staffers. They created a video covering the last year of fighting for access to the infusions that I need to live. Organizations like Social Security Works, Rights and Democracy, and PSARA shared and spread the video, getting over 300K views just on Twitter. That’s 300k more folks warned not to become trapped like me.
PNHP showed up in white coats supporting me, and I’ve collaborated with them to further educate elected officials in New Hampshire. People identify with my story because they have had it happen in their lives, and have seen their loved ones suffer.
Computers get to decide who can access care using algorithms and keywords. I lived this via text message. I had a denial happen via text. The first message said, “Thanks for submitting your request.” Nine minutes later, a denial text appeared. I was still on the phone with the service navigator who helped me file the request. She immediately said, “Oh, I thought that would happen; it’s the name of the medication.”
United Healthcare was forced to cover my infusions under the pressure of my senators, but every single one has been a battle. Each was issued a prior authorization, and then United Healthcare denied it when the bill was due, going back on the prior authorization. Then I fight more to finally get them to pay. I’m currently still waiting for them to pay for my March infusion; last I checked it was still being denied.
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 Medicare (Dis)Advantage. I have preexisting conditions and no one will issue me a Medicare supplemental policy. I had an insurance agent laugh at me saying exactly that. And the state? Well, the state commissioner's office told me to talk to the feds.
We’ve taken the fight right to United Healthcare’s front door at their headquarters in Minnesota. I stood in the middle of their lobby and told them that I didn’t want to die, but I was left feeling that’s what they’re hoping for. Last summer, over a thousand of us showed up to fight in Washington, DC. This summer, we are taking the fight to every city, but we cannot do this without you. I need you to take the next step in whatever capacity you can. Maybe that looks like sharing information on social media or talking to your legislators. Maybe it’s standing with me at a protest. Whatever you can do brings us that much closer to saving another life. But without you, who will warn the masses, so they don’t become the next medical nightmare—just like me
There are many great organizations with so many opportunities to help. Please drop me a note at jenncoffey.com/jc/you-are-needed for more info.