In primary season, it’s easy to forget an important reason our elected officials exist—they can help us negotiate the system. Sometimes that help is a matter of life and death.

Charles Sunnekalb of Neversink, NY, who desperately needed a kidney transplant, writes below about the trouble he had getting his surgery and aftercare approved by his insurance company. 

According to a Kaiser Family Foundation study of insurance plans in 2020, 18 percent of claims were denied nationwide. Insurance companies varied widely, from one percent to 80 percent of total claims denied.

For Sunnekalb, the story has a happy ending. He reached out to Assemblywoman Aileen Gunther’s office, got the help he needed, and is alive and well. 

“I am committed to serving the people I represent,” said Gunther.

My name is Charles Sunnekalb. I was diagnosed in 2009 with the kidney disease FSGS (focal segmental glomerulosclerosis), and it slowly progressed over the years. By 2022, I was in end-stage renal failure. 

I had two choices: I could start dialysis and go to a dialysis center every few days, or I could get a kidney transplant. The waiting list for a transplant is about 10 years, so I needed to find a living donor. 

My nephrologist recommended that I go to Weill Cornell in Manhattan, NY, and my appointment was on July 19, 2022. Weill Cornell called me the next morning and told me my insurance would not allow me to use their hospital.

I contacted my insurance company to find out where I could go for a kidney transplant. The insurance company sent me an email with a list of hospitals in my network in a 100-mile radius from my home, and my nephrologist’s office told me that Hackensack University Medical Center (HUMC) was my best choice. 

I contacted HUMC and got an appointment for August 10, 2022 for the initial testing. 

My older brother said that he would get tested to donate a kidney to me, and that happened in August. He was a match, but a couple weeks later, he was disqualified because of a newly discovered health issue.

Now I didn’t know what I was going to do—he was my only sibling who could donate. I was willing to accept that I was going to have to do dialysis or I was going to die. 

In September, my children said that they were going to get tested. I did not want my children to donate a kidney, but my oldest child went to HUMC to get tested first, and I was really surprised to find out that she was a match. 

My daughter and I completed our testing and were ready for the kidney transplant. HUMC set a date for January 23, 2023. On December 23, 2022, HUMC called my insurance company to get pre-authorization for the kidney transplant surgery. The insurance company told HUMC they would not cover the transplant surgery because I didn’t have out-of-network coverage.

HUMC contacted me and asked me to call the insurance company because it shows that HUMC is in my network. 

I contacted the insurance company and asked why they wouldn’t cover the surgery, when on their website and on the papers emailed to me it said that HUMC was in my network. The insurance company couldn’t explain it. 

At this point, I had been seen at HUMC several times, and the insurance company had paid every bill. 

 Over the next couple of weeks, I spent several hours every day on the phone with the insurance company and HUMC. When I called the insurance company, I got a different person every day. Each person gave me a different reason why they wouldn’t cover the surgery. 

At this point, HUMC said that it would be best if I got coverage from Medicaid for the transplant. 

A friend of the family suggested going to Assemblywoman Aileen Gunther’s office to see if she could help us.

On January 5, 2023, my daughter and I went to Gunther’s office, and we told our story to Aileen, Matthew, Rachel and Honora. They went to work on it right away, making phone calls and sending emails. 

On January 10, 2023, we received a call from the insurance company, telling us that they approved the surgery but not the aftercare. My niece was at my house and started recording the phone call. My wife kept asking the representative, “You will cover the surgery but not the aftercare?” The representative replied, “Yes, but because we won’t cover the aftercare, we have decided not to do the surgery either.” 

On January 13, my wife and I stopped in at Aileen Gunther’s office again. It was just our luck Aileen was having a meeting with someone from Medicaid. We told our story to the man and then gave him our application. A short time later we were approved for Medicaid. 

We didn’t want Medicaid to pay for the surgery; we wanted the insurance company to cover it. 

I finally got a reason why the insurance company would not cover the surgery. They told me the hospital was in network but the doctors were not. The insurance company told me to start over with a different hospital, and they emailed me a list of hospitals. I told them that I didn’t think I had enough time; I was already showing signs of kidney failure. The toxins in my blood were starting to cause issues. I was having memory issues and was feeling tired most of the time. 

On Friday, January 20, HUMC called and said they were going to cancel the surgery because the insurance company would not cover it. The surgery was supposed to be on Monday the 23rd. I asked HUMC to please give us until the end of the day before they canceled it. HUMC’s transplant department leaves at 4 p.m. 

On January 20 at 3:20 p.m., we received a call from the insurance company. They said they were going to cover the surgery. We asked about the aftercare, and they told us that was covered by our plan. 

On January 23, I had the kidney transplant surgery. Five weeks after the transplant surgery I was in pain on my right side. I went to HUMC and they did an ultrasound of my donated kidney and my natural kidney. HUMC said that my natural kidney did not function anymore. 

Today my daughter and I are doing well. Thanks to my daughter’s life-saving donation, and the quick actions of Aileen Gunther, Mathew McPhillips, Rachel Steingart, and Honora Wohl, I am alive today. To me and my family, the assemblywoman’s office staff are all heroes. Her office kept in contact with me after the surgery to see how I was doing. 

I wrote this to make people aware that if you are having problems like this and feel like there is no hope, you can reach out to the assemblywoman’s office. They may be able to help you.