Big Island boy fighting severe health conditions and insurance company

Mountain View resident Shelby Gugger is on her way to the Children’s Hospital Colorado in Aurora hopes of getting answers and more specialized care for her 11-year-old son Paul.

Since he was 5 1/2 years old, Paul has struggled with several health conditions, including Ehlers-Danlos syndrome, a genetic connective tissue disorder, Postural Orthostatic Tachycardia Syndrome, an abnormal heart rate, and gastroparesis that has caused debilitating stomachaches and vomiting.

And for years, Gugger has battled her insurance company to pay for her son’s treatment.

Despite these severe diagnoses from doctors and referrals to receive specialized care, Gugger said their insurance, HMSA (Hawaiʻi Medical Service Association), has denied nearly all of those requests, giving reasons that some of the treatments were not “medically necessary.”

In an email to Big Island Now, HSMA said it is “unable to comment as medical claims information is protected under the Health Insurance Portability and Accountability Act.”

But Gugger continues to do everything she can for her son. She got an appointment at the Colorado facility, where specialists will be running a battery of tests on Paul over the next several days.

“For the first time in a long time, we feel like we can finally start getting answers, more specialized care, and a clearer understanding of how all of Paul’s conditions overlap and what his future may look like,” Gugger said.

Paul now requires a feeding tube because his stomach is paralyzed, meaning it doesn’t move food through his body at a normal rate.

“He can’t play the way he used to, he gets sick,” Gugger said. “If he’s in the heat too long, his stomach starts hurting and he starts puking. If he eats the wrong thing, he starts puking.”

Gugger has tried to get HMSA to cover a referral for specialty care at the Children’s Hospital of Philadelphia, where doctors would have run Paul through a diagnostic clinic and tested him for everything, but was denied.

Gugger said these denial letters would come after Paul’s doctors in Hawaiʻi would write to the insurance company saying the state didn’t have the specialty doctors needed to treat the rarer conditions that Pauls is diagnosed with.

Although Children’s Hospital in Colorado normally has a two-and-a-half-year waitlist, Gugger said she still reached out to the clinic because they deal specifically with Ehlers-Danlos.

After specialists saw Paul’s chart, Gugger said he was bumped to the top of the list.

“They cleared books and moved things around so that they could see him as soon as possible,” she said.

Gugger said the Colorado hospital has fought on her behalf, sending medical necessity letters to HMSA from 11 doctors.

One letter sent in March to HSMA said it was medically necessary that Paul be seen at the Colorado clinic for his EDS diagnosis because “the required level of specialized care and expertise in this rare genetic syndrome is not available locally to him in Hawai‘i.”

Gugger received a denial from HSMA for the out-of-network request in April, stating the “services are not the best delivery of care.”

The letter goes on to state that the HMSA cardiologist did not mention the need for out-of-network care due to the inability to manage care.

“There are providers in the state of Hawai‘i that are within the HMSA QUEST Provider network that can provide the services you need,” the letter states.

“They’re just not listening,” Gugger said of the insurance company. “I don’t know if they don’t care, but I don’t know how you could not listen when you read these letters from these doctors that are explaining it.”

The Guggers have dipped into their savings and spent thousands out-of-pocket for Paul’s care.

“We’re just over it,” Gugger said.

Gugger said for years they haven’t asked for help but recently a friend asked if they could create a GoFundMe account on their behalf.

“We don’t like to ask for help at all,” she said. “It has taken this long, literally seven years, for us to allow our friends to make a GoFundMe, which feels really weird even saying out loud.”

 As of Friday, May 8, the GoFundMe had raised $17,895 of the $25,000 goal.

Gugger expressed gratitude to those who have stepped up to help her family.

Because of all of you, we are now able to move forward with care at Children’s Hospital Colorado without having to continue begging HMSA to approve or cover procedures that his GI and Motility team already know he needs,” Gugger wrote on the fundraiser page.

The community has stepped up to lend aid to the family and created a GoFundMe to help pay for expenses to get care at the Colorado clinic. As of Friday evening, 80 people had donated $17,895 out of a goal of $25,000. Click here to donate.