Letter: Doctors, not insurers, should determine the best course of health care

While the politicians in Washington, D.C., are stuck in what seems like an endless debate about healthcare reform, families like mine here in New Jersey are dealing with different circumstances that hit much closer to home.

My daughter Theresa suffers from several severe disabilities, including cerebral palsy. CP has caused brain damage and grave bone and muscle problems. She is legally blind, has severe recurring pancreatitis and requires multiple surgeries each year.

My experience as a nurse taught me that all of these disabilities are interconnected. So it is important to me that Theresa’s doctors treat them that way.

Our family is fortunate that Theresa’s doctors have taken us under what we call their umbrella of care. All of the specialists, at Alfred duPont Hospital for Children, communicate with each other and function as a team. The continuity allows us to focus more on helping Theresa get better and less on managing various specialists in various locations. I know duPont is the single best place for my daughter.

An example: As I walked down the hallway recently, I passed a doctor who had spent just a few days last year caring for Theresa during one of our visits. Though he wasn’t a regular member of Theresa’s team, he recognized me immediately, mentioned that he saw that Theresa had returned, and asked how she was doing. It may have been a small act of kindness, but it was comforting to our family and typical of the attention to detail we see at duPont.

So I became concerned when our insurer, Horizon NJ Health, started denying some of our visits. When I tried to contact a few Horizon departments, they told me we were not authorized to seek care at duPont and sent a list of specialists we could visit in New Jersey and Philadelphia. Our family doctor, who agrees that duPont is the best place for Theresa, had his appeals denied.

I understand that providing insurance and good medical care is complicated, and I don’t like to simply complain about my insurance company. In fact, it was a previous insurer that first recommended that our family try duPont Hospital more than 11 years ago.

However, I do not think it’s fair for an insurance company to decide when my daughter should switch doctors and who she should start visiting. Theresa and I have built a relationship and level of trust with her doctors over the last 11 years. We are comfortable with our current team and the unified care they provide Theresa. We cannot simply shop for doctors like we shop for clothes.

I know many other families in the same position. Theresa and I hope there’s a solution out there that allows all of us to continue getting a level of care and compassion that works and that we have grown to depend on. Over the last few years, I feel the complexities of health care have sometimes drowned out the voices of those who simply want to find the best care for our loved ones. Hopefully that starts to change in New Jersey.