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 everything, my career, my home, everything. I then was bedbound for two years.
I was diagnosed with two rare diseases, Complex Regional Pain Syndrome 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 treatment 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 which I have 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 signing 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 and 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 says “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 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 instructions to appeal it in writing within 30 days. Then the insurance gets between 30 and 60 days to make a decision on that appeal. These are the kinds of delays in healthcare that are killing people every day in this country, all in the name of profit.
I went to a Rights and Democracy meeting and found out there are people who would help me fight. It wasn’t an easy decision to make, going public, and sharing some of the worst moments in my life.
It took a public social media campaign 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 premiums.
United Healthcare said that they would pay for my infusion after all that, but when the cameras went away, so did the approval department. I had to contact 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 if 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.