LAS VEGAS (KTNV) — A Las Vegas teenager has spent years battling a rare medical disorder. Now he's fighting a second battle against the medical system.
13 Investigates shows how hard it is to find solutions to this daunting situation.
It's normal to see a teenage boy playing video games. But for 17-year-old Kendall Killman, the virtual world is his world. There's not much else he can safely do.
Kendall suffers from Ehlers-Danlos Syndrome. "Just imagine pushing on a bruise," says Kendall. He lives with chronic pain.
"I wake up every day and it feels like you got hit by a bus," Kendall explains. "Like I'm recovering from a horrific car accident."
He started complaining of leg pain when he was just six. (For more details, follow the Facebook group Teenagers with Ehlers Danlos Syndrome )
By the 8th grade, Kendall was forced to leave school because his legs were giving out and he was prone to falls.
"It was very painful to walk through the halls when everybody else was there trying to get to their class," says Kendall.
He misses school. In fact, he misses a lot of everyday things most teenagers do without even thinking about it.
"Walking!" Kendall shouts. "Walking! Walking! Walking! Showering! Being able to fix your own food."
And being able to hang out with friends.
"Horrible! Horrible social life because of this," says Kendall.
Social life still matters to Kendall. But his mom, Trudy, is worried about real life, too.
"It's just been one hurdle after another," says Trudy.
Navigating the medical system is like a full time job.
"We have to jump through all the hoops like circus bears," says Trudy.
The first obstacle was getting a diagnosis.
"May of 2009," says Trudy, "he was diagnosed with a mild form of scoliosis."
In a condensed timeline Trudy says in 2012 Kendall was checked for Lyme Disease, juvenile arthritis and Crohn's Disease.
In 2013, chronic pain increased, his legs were getting weak and he was diagnosed with fibromyalgia. Tremors and insomnia started in 2014 and by 2015 pain amplification syndrome was added to his diagnosis. Eventually a cyst was discovered on his brain and Ehlers-Danlos syndrome (EDS) was suspected as the actual underlying cause for many symptoms.
Kendall hit a turning point in 2017 and by 2018 EDS was confirmed. It's a range of disorders affecting the connective tissues including hyper-mobility in the joints--which means they extend far past the normal range. Imagine a contortionist defying human limits.
That could be EDS. It might look super-hero cool for some, but for others it means extreme pain and unstable joints that dislocate easily. And there are several other types of EDS impacting different areas of the body. For more information visit the Ehlers-Danlos Society website.
A lifetime of pain and disability has forced the family to rely on Medicaid. Trudy says complicated cases like Kendall's are often met with red tape and denials.
And many doctors don't know about EDS or have very little understanding of it.
"Because as as a patient and a parent we have faced the stigma of being told that it's in our head or, ' You only have fibromyalgia.' or 'You just need to do this.' No we don't just need to do that."
Trudy says it's very difficult for families when health care providers are dismissive when medical cases become complicated.
"So that nightmare started," says Trudy. "I believe it was November of 2016 when the first pre-authorization to get Kendall to Stanford was denied."
Kendall's doctors made several more attempts to get him treated at Stanford but their referrals were also denied. And Trudy says there was never a clear reason.
Then she says she randomly got a call from a Medicaid supervisor who apologized...
"'We didn't need an authorization for you to go to Stanford. And I said, 'So why has this been put off for so long then if we never needed an authorization in the first place?'"
Trudy says that's just one example of the system failing her son.
This letter shows a provider trying to explain Kendall's conditions to Medicaid, first by fax with no success. When they called Medicaid, they were told the fax was disconnected and the provider needed to set up a portal. But the portal rejected it too "...after several weeks of trying to just send a form."
"So why is it we have to jump through so many hoops?" Trudy pleads. "Why are we waiting, you know, while kid suffers, to get him to where he needs to be?
"If the medical system wasn't failing," says Kendall, "I'd probably be in definitely a better state than I am in now."
In response to our questions Nevada Department of Health and Human Services provided the following information:
In Nevada, Medicaid is delivered either through fee-for-service (FFS) or by a managed care organization. Under the FFS system, the state pays providers directly for each covered service received by a Medicaid recipient. Under managed care, the state pays a fee to a managed care plan for each person enrolled in the plan. In turn, the plan pays providers for all of the Medicaid services a recipient may require that are included in the plan’s contract with the state.
Nevada Medicaid covers 647,000 Nevadans and pays over a million claims each month. In addition, Nevada Check-up covers an additional 26,000 children whose families fall just above Medicaid income guidelines. We continuously seek to improve our system and support all of these Nevadans in getting the health care they need.
Nevada Medicaid coverage policy, treatments and services are the same for both FFS and managed care populations. Some eligibility categories require recipients to be in managed care organizations (MCO) while other eligibility categories require recipients to be in fee-for-service (FFS).
For example, residents in the rural areas and recipients on Supplemental Security Income (SSI) or Medicare (people who are aged, blind, and disabled) are placed in FFS. There are some eligibility categories that provide a choice of the two; examples of those include individuals who are tribally enrolled Native Americans and individuals who meet certain behavioral health criteria.
Both FFS and managed care cover the same treatments and services. Any provider receiving payment for a Medicaid recipient would have to be enrolled in Nevada Medicaid, either FFS or managed care. Fee for service does not necessarily offer a wider range of specialists or greater benefits for those with rare conditions. It is possible that a specific provider may not be enrolled in a specific managed care plan.
There are limitations on some services for both fee for service and managed care. Prior authorization requirements are one form of those limitations. This varies depending on the service, some services require authorization, others have none. These limitations are based on treatment norms for the majority of the population and can be overridden with a recommendation from a licensed and enrolled provider based on the needs of an individual recipient. There are a number of processes in place to address the fact that rare situations occur in the medical realm and we are here to support the recipient in those challenging situations.
Navigating the modern health care system and managing complex health issues can be extremely challenging. Our district offices have health care coordinators to assist recipients in getting the medical tests, treatments and therapies that they need. The managed care organizations we work with have care coordinators to assist with similar issues. Nevada Medicaid is obligated to abide by federal guidelines and our state processes to provide quality health care services for Nevadans, and within those rules and guidelines we have significant flexibility to get what patients need. As with other health insurance policies, there are some services that are not covered, which may lead to frustration.
Nevada Medicaid has a web-based system for submission of bills and enrollment of providers. Medicaid, through a contracted fiscal agent, has field representatives who work directly with providers to help them with the portal. These agents also work with Nevada Medicaid staff to find solutions to challenging coverage issues and to ensure the we are following all the state and federal policies governing our coverage.