August 28, 2023 Written by the Hon. Jenn Coffey for the RSDSA blog.

On the occasion of marking Medicare’s 58th birthday, I teamed up with an organization called “Be A Hero.” An organization that believes we should be able to access care without selling our lives away. Things like ketamine infusions and LDN (Low Dose Naltrexone) have helped some CRPS warriors. So many of us can’t even get a chance to try these therapies with expensive price tags impossible for most to reach. They work with people to help fight the private insurance monoliths that turn their backs on our medical care needs.

Be A Hero says, “Here in the richest country in the world, and everywhere, we believe health care should be a human right. Everyone should have the care they need, no matter who they are, where they live, what job they have, or whether they have a job at all. Our team takes on critical fights to transform America’s healthcare system so that it guarantees all of us the care and dignity we deserve.”

My first meeting was with the finance committee chaired by Senator Wyden’s staff. I met with one of the same staffers I had before. Now I was coming back to tell her how everything we had fought for the first time, didn’t happen. That I was still fighting for care. How they still found a way around covering me. I reminded her about CRPS and the treatments and medications we need access to. I even showed her a text message denial.

The first message says “Thanks for submitting your request.” Nine minutes later, a denial text came. 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 they get 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 would love to say that I won her over, but I didn’t. We are going to have to push harder and lobby more. We are just not there yet with the Senate Finance Committee. What we need are hearings on denials and delayed care.

I met up with New York City Retirees fighting to keep their traditional Medicare. They are fighting against being forced into a Medicare (Dis)Advantage plan. Our story gives them ammunition and firsthand knowledge of Medicare (Dis)Advantage plans. We had lunch together and spoke to each other in small groups. Then off we went, back to meet with more senate staff members to plead our case.

We gathered in the Senate Hart Building Atrium to celebrate Medicare. We encouraged those around us to realize that we are working to give everyone the same chance for a well-lived life, with access to medical care and medications currently reserved for the rich and elite, some of whom are the very shareholders profiting off of our pain.

I was able to meet with Senator Shaheen’s staff (she is my Senator.), They were not happy to see me back in their office, telling them how everything I thought I had won last month was pulled out from under me. They truly saw that we are fighting for our very lives. I had help from Senator Hassan, also my Senator, just a week or so before. Now I had a second United States Senator fighting for me.

They understand that we are not looking for privilege, but access to the very care that enables many with CRPS and Small Fiber Neuropathy to live. Simply existing is not living. I walked out feeling very heard and seen. I know that there are a growing number of people on Capitol Hill that now know we exist, and that we vote. We need them to represent us against these for-profit private insurance companies that are reaping billions from the care they choose to deny.

We all pay into the Medicare system, believing a promise that it’s there for us when we need it. I’m disabled, like many of you. I was forced into the system and didn’t understand what I was looking at. Now, I am stuck on a Medicare (Dis)Advantage plan. Current laws allow insurance companies to hold pre-existing conditions against us, so switching back to traditional Medicare with a Medigap is seemingly impossible.

The companies collect what we pay into Medicare, and then pocket up to $73 billion dollars per year that should be put back into the Medicare program. This money is the product of overbilling taxpayers. They buy bigger yachts while we ration our care. Can you imagine if that money was invested back into Medicare? Dental, vision, and hearing benefits could exist with no premium increase. Instead, shareholders get profit checks while we get text message denials of life-saving care.

We sang Happy Birthday to Medicare and spoke of what we wanted for healthcare. Most want nothing more than access. We have these treatments and medications available, but every day people suffer without them, all in the name of the almighty dollar.

From there we marched to Capitol Hill and it was surreal. Marching and chanting with all these people was mind-blowing. It felt empowering to be among them. My friend Meagan was my handler again. She’s amazing and spends her days fighting for us. She has looked after me now on three trips, and I couldn’t be in better hands.

I took a conscious moment to take in the sounds of the people chanting and their footfalls on the pavement. It was a beyond-hot day. There was no escaping the heat of the sun, but brief moments of shade from a building or a tree were welcome.

The vast majority were wearing “Be A Hero” t-shirts, challenging those we passed to do just that, to join our fight. Looking around me, I was surrounded by retired teachers, activists, and first responders representing fire, police, and EMS. Some were even 9/11 first responders, who should be home retired, but instead, they marched with me to fight to keep their traditional Medicare policies, as if they hadn’t sacrificed enough already.

We had a planned press conference that was to last a half hour. I and Megan Bent shared our Medicare (Dis)Advantage stories. We made fast friends and bonded over our painful stories.

Then something unexpected happens. The few Senators who said they would show up didn’t come alone. Many other Senators and Representatives showed up. All of them vowing to support us and fight against the corporate greed that is killing people in America every day by denying and delaying care.

I stepped up to the podium as one of the first speakers. I told the story of cancer leading to CRPS. I started to stumble a couple of times, finding it harder to say the words out loud than when I rehearsed privately.

The press event went on for over an hour! When it was over, one of New York City’s finest came to me and shared their pain. I stood in shock as they shared the death of their own child to suicide due to Complex Regional Pain Syndrome. He was only about 23. I have little doubt in my mind that this is just one among many such stories in NYC.

Be A Hero “believes that Congress has a responsibility to protect the rights of, and advance health equity for, everyone with Medicare including older adults and people with disabilities on Medicare (Dis)Advantage plans.” I certainly couldn’t agree more.