What would you do if your child was sick with a life threatening disorder? What if after years of research, treatment, and doctors’ visits, there seemed to be no cure? What if, by a miracle, a doctor on the other side of the country said he would operate on your son and greatly improve his quality of life? What if your insurance company denied coverage for the medical transportation needed to take your son to see this doctor?
This is the grim situation Lily* faced with her 22-year-old son, Jonathon,* who suffers from Ehlers-Danlos Syndrome (EDS), a rare disorder with symptoms that include episodes of temporary paralysis and dystonia (severe involuntary muscle contractures). These episodes deprive Jonathon of the ability to move his muscles, including the muscles responsible for breathing.
Read how Lily, with the help of the Legal Aid Society of Orange County, overcame her battle with her insurance company to get her son the lifesaving procedure he needed:
Fighting big insurance feels like a modern day ‘David versus Goliath’ and our battle involved boots on the ground and prayers in the air. My 22-year-old son, Jonathon, struggles with numerous health problems, the most significant being Ehlers Danlos Syndrome. EDS is a rare genetic disorder where his body produces defective collagen.
Collagen is the body’s natural “glue;” it holds everything together and provides tensile strength. It’s found everywhere in the body: tissues, tendons, ligaments, bones, and internal organs. Jonathon’s collagen is like an old brittle rubber band you find in the junk drawer at home. You stretch it out to use it, and it just stays stretched out and won’t hold anything together.
The last three years have been the most terrifying in our lives. Ignoring the fact that my son dislocates significant bones (shoulder, hips, fingers, ribs etc.) daily, he was also having life threatening neurological attacks. In just one month he had 47 full body paralysis events and nine dystonia attacks (every muscle in the body contracts). He passed out 13 times, and stopped breathing four times!
After years of research, I found a neurologist in New York that gave us our first glimpse of hope. He had us perform traction on Jonathon’s head (I would just lift it perfectly straight up) and every one of these attacks stopped. When I would let go and they would resume. The problem was cranial cervical instability: his spine and head were way too loose. Corrective surgery was set for July 2016 and began with all the insurance approvals. At the end of May, the insurance approved the surgery and we began looking for air transportation.
Flying Jonathon to New York from California was going to be tricky. Whenever Jonathon is in paralysis, none of his muscles are working and he flops around like a rag doll. On a flight to Washington to train his medical alert dog, Jonathon was paralyzed for takeoff. I assumed strapping him to the seat and putting on a neck brace would be safe, but I was wrong. The force of takeoff flattened the top of his spine, the second curve reversed and pushed all of his ribs out and open (like shucking an oyster), and both of his hips dislocated.
We couldn’t chance that happening again. The next take off could permanently paralyze or kill him. Additionally, Jonathon would periodically stop breathing, and at home we had a ventilator that plugs into the wall; however, there would be no ventilator on a commercial flight.
In early June, the insurance company denied our request for medical air transport, as it was ‘not medically necessary.’ I called the neurosurgeon and he informed the insurance company of the necessity of medical air transport. Still, it was denied.
I wrote an impassioned plea stating all the medical reasons this type of air transport was a necessity. I then called the insurance company and requested an expedited appeal. Expediting it was the only chance I had at getting the insurance to review the documents prior to surgery, otherwise, the insurance had 30 days to review the file, putting the review two days past the date of surgery.
I had to wait two long days to see if my expedited appeal would be approved. Insanely, I was confident they would expedite the appeal; after all, the insurance company had approved the surgery so they knew the date I needed it by. Surely they would calculate this information into their factors. Two days later I found out how wrong I was. The insurance determined that reviewing it on a standard review time would not pose ‘a serious threat to his health.’
Really!? Try staying up all night making sure your child is breathing. Try not panicking when you are putting on the respirator before he passes out. I asked if there was an appeal to the appeal. No. Was there a supervisor I could talk to? I was told I could complain to the California Department of Managed Healthcare (CDMHC). By now I was in full blown panic. It could take days just to find the right person. I was trying to go from fighting a healthcare giant to getting help from an even bigger impersonal giant.
On my first call to the CDMHC, the very first person I spoke to listened compassionately and led me to the Legal Aid Society of Orange County (LASOC). I had no alternatives, but I was worried about the cost. Our family is inundated in medical bills; I have taken Jonathon everywhere I could to get the medical help he desperately needed. I called LASOC and was put in touch with Andrew, our lawyer.
Because of the urgency of the situation he cleared time to see us almost immediately. I was afraid to bring up the cost so I waited for him to tell us. I was utterly shocked to find out that his assistance came without charge, zero, zilch! We told him our story and our request was simple: all I wanted was for the insurance to expedite our appeal and look at the request I sent.
Andrew went beyond my request; he contacted Jonathon’s medical doctors and physical therapy office and requested all the pertinent records. He filed an application for Independent Medical Review with the Department of Managed Health Care, and in 24 hours submitted Jonathon’s records and an argument for expedited review and approval of the air ambulance.
Within a week we heard back from the plan. Not only did we get the expedited appeal, but we also we got the full approval for the flight. More than that, the Manager of Appeals and the Case Manager were on the phone at the same time telling me this. Wow, did the doors fly open in a big way. They also told me Jonathon could have his own Case Manager if we wanted it. I tried two years ago to get one and I was told they didn’t do that anymore! Heck yes, sign us up! Andrew was the first person I called (apologies to my husband) and he was as excited as we were but he asked me if I had that in writing. Oops. No, I hadn’t thought of getting that, so he set right to work getting all of the paperwork and making sure we got what the insurance had promised.
My son had his 11.5 hour surgery in New York with his brilliant neurosurgeon and he is now three weeks free of paralysis, three weeks free of dystonia attacks, and he hasn’t stopped breathing once!
Now my son has a chance to go back to college. He has actually gone out without me without all the rescue equipment we used to carry around. Andrew still checks up on us; we are waiting for the insurance to cover the bill for that medical flight, and they promised if I used the company they approved we wouldn’t have out of pocket expenses. You can bet Andrew will hold them to that. Take that Goliath!
Since 1958, LASOC has provided legal aid services to our communities most vulnerable populations. Please consider supporting our organization through a donation so we may continue to help families like Lily and Jonathon.
*Names have been changed to protect identity