In the Advocate September 2023:
A Personal Story About
a Medicare Advantage Denial
Hon. Jenn Coffey
Greetings, PSARA members. I’m a new member from New Hampshire, and I would like to share my Medicare (Dis)Advantage story with you. It’s my hope to help others be fore-warned. I learned the hard way.
At the age of 42, I was diagnosed with breast cancer. The breast cancer I beat, but the surgeries created a new set of problems. Within one year, I had three surgeries trying to undo what had been done. I had walked into the hospital as a fully functioning EMT and was wheeled out never to walk without assistance again. In the end, I lost every-thing – my career, my home, every-thing. I was bedbound for two years.
I was diagnosed with two rare diseases: complex regional pain syndrome (CRPS) and small fiber neuropathy. CRPS is also known as the suicide disease. It’s the most painful disease known to medicine. Though it was discovered over 200 years ago, to date it does not have a single solitary treat-ment approved by the FDA. United-Healthcare Medicare (Dis)Advantage loves to use that against me and as a reason to refuse to cover the lifesaving treatments that I need to have.
There came a point where my health got so bad that I had no quality of life left. I talked to my primary about sign-ing a DNR (do not resuscitate order).
Then I gave it one more fight. I did a gofundme. I sold everything and bought my way into treatments. I was wheeled in, but I walked out. I stopped living in a bed. For the past five years, I have fought to keep myself alive by paying premiums and copays on top of the full cost of my infusions, plus the medications they refuse to cover.
Then things got bad last year. My illness was progressing, and I was forced to ration infusions because my rent went up $400. My neurologist started me on LDN (low-dose naltrexone). But 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. For that reason, I have to use a compounding pharmacy to get the medication. Again, my Medicare (Dis)Advantage plan will not cover it.
Recently, I had a denial happen via text message. The first message said
“Thanks for submitting your request.” Nine minutes later, a denial text ap-peared. I was still on the phone with the service navigator who helped me file the request. She immediately said to me, “Oh, I thought that would happen; it’s the name of the medication.”
So a computer decided. A keyword gave me an instant denial and instruc-tions to appeal it in writing within 30 days. Then the insurance company gets between 30 and 60 days to make a decision on that appeal. These are the kinds of delays in health care that are killing people every day in this country, all in the name of profit.
I went to a Rights & Democracy meeting and found out there were people who would help me fight. It wasn’t an easy decision to make – going public and sharing some of the worst moments of my life.
It took a public social media cam-paign with videos and over 4,000 signatures on a petition to get United-Healthcare to talk to me. They didn’t like the embarrassment, considering my videos launched the same day that they bragged about eight billion dollars in profit for just the first quarter of this year. That's only three months. They deny care while pocketing our premi-ums.
UnitedHealthcare said they would pay for my infusion after all that, but when the cameras went away, so did the approval department. I had to con-tact my senators, and I’m lucky to have two senators willing to fight for me. It’s taken four months of fighting,
a public campaign with videos being viewed tens of thousands of times, over 4,000 signatures on a petition, and two United States senators, but now they say they are really going to pay for the infusion. I’ll have to get back to you on whether they really do or not.
I share just a bit of what I have gone through. I have spent so many hours on the phone just arguing for the medical care that I need to survive, with people who have not even a small working knowledge of the medical care I am begging for. It shouldn’t be this way in America. We should be the very best. Please vote, act, and help to get private, for-profit health insurance companies out of Medicare.
Do you know who is representing you? If you visit congress.gov/mem-bers/find-your-member you can find them, contact them, and join me in fighting for health care for all.
Hon. Jenn Coffey is a new member of PSARA. She is a former Republican Rep-resentative in the New Hampshire House of Representatives, where she served on the Speakers Leadership Team. She is a retired Emergency Medical Technician and an advocate for health care for all.