How a newly minted ‘Preexisting Condition’ could put more Americans at risk of ‘sleepwalkers’

Written by Dana Kelly, CNN

The US government this week unveiled a grant program designed to reduce the number of preventable cases of narcolepsy, a sleep disorder characterized by difficulty falling asleep and staying asleep.

The Patient Protection and Affordable Care Act, also known as Obamacare, includes several measures designed to tackle preexisting conditions such as narcolepsy and other sleep disorders.

While the Affordable Care Act has been both lauded and derided by President Donald Trump, Congress is currently considering the McCain-Cassidy health care bill , which could make it harder for people with preexisting conditions to access care.

Is narcolepsy contagious?

As part of its push to identify more people with preexisting conditions, the White House commission tasked with studying the issue recently gathered for an investigative summit.

A draft document leaked to the New York Times states that the Administration plans to target children by mandating parents sign a form declaring that they know a minor has a serious condition that will “likely” impact their health, including hypertension, diabetes, asthma, allergies and, most importantly, narcolepsy. The draft also suggested recommending more severe screening of adolescents between 13 and 16 and patients between 16 and 26.

“This proposal will not only save lives, but will also allow states to shift funds and resources to mental health by increasing the number of children with preexisting conditions who are covered,” the draft document reads.

Adults with preexisting conditions can now find coverage for over a dozen types of medical treatments, including prescription drugs, physical therapy and counseling. The Commission on Quality Care for Children claims to have prevented “9,600 children from losing their health coverage and prevented at least $2.4 billion in additional expenses related to child health care.”

CNN spoke with Dr. Samir Gupta, a pediatric sleep specialist based in New York, who explains that narcolepsy is not like diabetes or heart disease. The disorder, he says, “cannot be prevented, and in most cases, is not considered to be a life-threatening condition.”

But, it does, “present itself more as a sleep disorder than an illness or disease because the disease is largely invisible to the naked eye and people typically do not notice it until it affects them,” Gupta explains.

“You don’t have to drive all day (to develop narcolepsy) like diabetes. If you sleep right and wake up late, you can still have narcolepsy,” he explains.

“Most people simply don’t have the symptoms when they’re awake, but when they go to bed at night, their body processes the same amount of sleep as it does when they’re awake. Those fluctuations are simply not correct in people with narcolepsy.”

A new study

The Federal Advisory Committee on the Development, Diagnosis and Treatment of Sleep Disorders (FACDCD) released its annual state-of-the-art narcolepsy study in 2016, which drew down from 2014 data.

The report estimates that nearly 790,000 Americans between 18 and 65 years old and 2.5 million Americans between 65 and 74 are affected by narcolepsy — and the number of sufferers is expected to grow.

The study looked at 763 narcolepsy sufferers, who underwent testing, biological studies and studies on healthy controls. The study found that narcolepsy was most common in the 18-65 age group, with rates of 6.1%, and is likely to be more common than previously thought, Gupta says.

As for the 9,600 children and adolescents, a spike in the average age of onset would put them at risk of parental neglect or abuse, the report states.

“Most children diagnosed with narcolepsy also have significant psychiatric problems and are at risk of self-harm,” the study states.

“As the oldest segment of the population, they are also at risk of being treated unequally when it comes to additional funding, support and prevention. Treatment of the largest number of individuals with narcolepsy may not reach the most severely affected children.”

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