Written by the Hon. Jenn Coffey for the RSDSA blog.
I want to share with you the work that I am doing and ask you for your help. People with CRPS know all too well the pain of being denied access to medical treatments and medications that could improve our lives. What is grotesque is that often the denial will state, “not approved for the treatment of complex regional pain syndrome.” For the record, the FDA to this date has never approved anything for the treatment of CRPS. That fact is lost on the elected and our neighbors. It’s time to change that.
I was recently invited to speak in the United States Capital during a Healthcare for All town hall. Gathered on the stage were doctors from various specialties, talking about the struggles to get the care their patients need. Listening to the heartbreak of a pediatrician is sobering. As the patient on the panel, it was my job to paint a picture that the audience could really imagine and understand. For most of those in the room, it was the first time they had heard of Complex Regional Pain Syndrome. Having been led to believe that cancer is the worst pain, there I stood, as evidence to the contrary.
I spoke about access to care, but also the roadblocks to the very medications that have shown promise, and for some, have changed their lives. My story is like countless others of those who could see a light ahead but had to find a way to buy themselves into care. In my case that has turned out to be ketamine infusions, Low Dose Naltrexone (LDN), and Mestinon, all of which ended my two-year nightmare of being bedbound. Allowing me to function in the world as more of a participant, instead of a viewer of other people’s lives. I have no doubt that hundreds of thousands of people could get their lives back if only they could have these medications. If only they could try a treatment and see if that allows them to have meaningful time with their families, and not be relegated to a bed while watching life go by on a Zoom call.
I made the decision to go public with my story after sitting in on a meeting about national healthcare. We talked about all the ways that insurance companies deny access to care. There are hoops that they force people to jump through, often leaving them exhausted and unable to navigate the fight. Anytime I have tried to deal with the insurance company, I have always ended up thinking that this person doesn’t know anything about what they’re talking about. All they would do, time and again, was read the booklet to me. As far as understanding what they are reading or how it works in healthcare, that didn’t matter, because the only real point was to find a path to denial of care. Decisions are being made by computers, which in mere seconds can deny care to thousands.
After nearly 20 years working in medicine, I was fighting to get access to the care I once helped give. America is unique in that we are the only country that attaches our healthcare to our jobs. We all think we have great benefits until we really need them. It was less than two months after my cancer diagnosis that I was out of a job. If I can’t work, I can’t buy health insurance, so now what?
I was lucky to be taken on as a case by People’s Action. This organization disseminated the information throughout the 40 national organizations it represents. We launched the campaign the same day that United Healthcare boasted over eight billion dollars in profit for the first quarter of 2023. That’s just three months. We made videos and I did interviews. The Twitter campaign caught fire. Over 4,000 people signed the petition making it hard for United Healthcare to ignore me. The video was viewed thousands of times and shared. It went up on a Friday, and by Monday, I had a message asking me to contact United Healthcare. They had been successfully shamed into talking to me.
The one thing that I thought they would never cover, ketamine infusions, was the first approval we won! I am concerned that they will refuse further treatments, but I am sure that they know I will not stay quiet about it either. Now that I know how much work and the hours it takes to get care approved, I’m sharing that with elected officials. They need a clear picture of what we are up against. There would be more appeals filed if people were not intimidated, worn down, and defeated by the process. The private for-profit insurance companies count on it.
We need to remind people about something. Private for-profit health insurance companies do nothing to increase positive outcomes in medicine. They are the roadblocks, even brick walls, that stand between us and our providers. They are our death panels. It’s time to end the stranglehold they have over all our lives.
Very soon I will travel back to DC, and work with People’s Action to help teach what we have learned, so other organizations can take that knowledge back to their home states, and help more people fight back and win against greedy insurance companies.
Stay tuned for more videos and more work. We will not stop fighting until everyone, no matter who they are, or where they are from, can access the treatments and medications that their providers use to better and extend their lives. I need you to help fight for those in need, whether it’s signing and sharing a petition, writing to elected officials, or running for office yourself so that you can be the one to bring about healthcare for all.
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