Fighting for experimental procedures: One family’s struggle for their son
Jan 31, 2017 03:18PM
● By Travis Barton
Rachel Nichols and her son Brody, who is in need of an kidney autotransplant, and is waiting for approval from their insurance to cover the experimental procedure. (Mandy Ditto/City Journals)
By Mandy Ditto | [email protected]
Health insurance is an essential, but not often as simple to use, as it seems. There are times that insurance companies are simply limited and oftentimes nobody can know what exactly what is going to happen to them or their family, and they simply need coverage for emergencies in the moment. There are also experimental procedures that insurance companies often don’t cover for various reasons, and needing something like this with no coverage can be costly for anybody.
For the Nichols family this has been a reality over the last several years, as they have fought for understanding about their 15-year-old son’s medical conditions and health. Brody — or Spencer, at school — was born with hydronephrosis on the left side, which causes swelling of the kidney because urine can’t drain properly. He had surgery at 10-months-old and the family was told he would live a normal life from then on.
They later found out that Brody also had it on the right side of his body, and in May 2015 he was feeling sick and after months and fighting for an ultrasound they discovered that neither kidneys were draining properly. Surgery was done again on both sides at the beginning of 2016, but they still had to have nephrostomy tubes put in during the summer, to help the kidneys drain into bags Brody carries on his back. After several doctors discussed Brody’s condition and finding a more permanent solution, they decided he needed a kidney autotransplant.
“Brody will be the first minor in Utah to have this procedure done, he’ll be the first one at Primary Children’s to have it done, if it gets authorized to be okay,” said Rachel Nichols, Brody’s mom. “University of Utah is a research school, so they have done at least 30 cases on adults, but there’s not enough evidence for children with his diagnosis to prove that this will work, so they’re calling it experimental.”
However, because of its experimental nature, the Nichols’s health provider told them they wouldn’t be able to cover it, due to their policy. The family has been fighting and appealing to gain coverage for the $100,000 to $150,000 procedure ever since so that “Brody can live and be a teenager,” Nichols said.
Because Brody’s right kidney was saved in time and is functioning, the autotransplant would simply move the kidney into the pelvic area to attach directly to the bladder, Nichols said, which is what is done with kidney transplants from donors.
“If we can do that, we feel that he will live a healthy life, he will not be on any anti-rejection medicine and he will not be on any opioids,” Nichols said. “From the doctors that we’ve had, we’ve had three different opinions, they all say yes, he needs to have this done … but they are calling it experimental and there’s not enough information stating that this will work for him.”
Nichols believes that if this can be approved and pushed forward, that Brody “can open the doors for other children to have this done.”
Brody himself wrote in a letter to the insurer: “This isn’t something I want, none of this is, after hearing how my recovery will be and other things, it's terrifying, all of this is, but I want this, I know I need this to get better. I want the solution to be simpler than taking out my kidney, and moving it to a new spot, but I know that this is something that I need and I need it as soon as possible.”
The Nichols were denied on December 14 and so Rachel turned to social media about it, and got the attention of an appeals manager who picked it up. Brody had a surgery date set up for January 3, but the appeal wasn’t processed in time. As of mid-January the case is being more intensely re-examined and the Nichols are simply waiting to see what will happen.
“It makes think about what health insurance company you want to use, and that’s something people need to look into: what is covered by one insurance and what is not covered by another insurance,” Nichols said.