Hemophiliacs Hope For Positive Changes With Health Care Insurance Reform

With stories like this, how can people possibly be against health care reform? Have they no compassion for fellow humans who were dealt a worse hand than themselves? 

Adapted From Article By Emily Tramte

tramte.2@osu.edu

Published: Thursday, June 3, 2010


From “The Lantern,” Ohio State’s Student Newspaper:

Stephen Kaes is athletic. His broad shoulders and strong legs could have made him a valuable player in football.

“Anything that has a ball in it, he always liked to do it,” said Leonard Kaes, Stephen’s father.

As a boy, soccer was his sport. But that ended with an incidental kick. Broken blood vessels, unable to clot, filled his calf with blood.

Even mild hemophiliacs experience painful hemorrhaging from everyday life experiences.

“They were contemplating if they would have to actually cut it open and bleed it out,” Stephen said.

Stephen has hemophilia A, a disorder in which the body doesn’t make enough of a protein needed to stop blood loss after injury.

“Some of the sports that my body type and mentality fit, I couldn’t do,” Stephen said.

Leonard said his son typically has about 6 to 8 percent of the protein, Factor VIII, that a normal person has.

“The way clotting works, it’s like a domino effect. Factor VIII is one of the dominoes,” Stephen said. Injuries resulting in minor bruises or cuts for most could have serious consequences for Stephen.

“It’s really serious if I get in a car crash, head injuries,” he said. “I had to play pretty low contact sports.”

Accidents can be expensive, too, and finding individual insurance coverage is difficult.

He and his father both paid attention to the debate about health care legislation. The results could greatly affect Stephen when he graduates from Ohio State in a year.

When Stephen decided to come to OSU, more than an hour from his Cincinnati home, his family considered his health and insurance portability.

During his second year at OSU, Stephen bumped his head on a building, and his father had to consider the price of his son’s health.

“One injury with Stephen could end up costing me my house,” Leonard said.

Leonard, a pharmacist, was concerned the injury was a concussion, the result of the brain moving inside the skull, and might cause brain damage.

“The problem with a head injury is it’s very difficult to see those and a bleed that doesn’t stop in the brain, you could be dead in 15 minutes,” Leonard said.

Stephen went to OSU’s Emergency Department to get treatment and a CT scan.

Hospital staff wanted to keep him for observation, but because his insurance is through the hospital his father works for, only emergency rooms are covered outside their network.

“A typical hospitalization is $2,500 a day,” Leonard said. “That will all be coming out of my pocket.”

Leonard said if the scan showed no bleed, he wanted to take Stephen to a hospital where his stay would be paid for. The staff agreed, but only if the test was negative.

If Stephen had a bleed in his brain, a normal car ride could cause serious damage, Leonard said.

“I’m sitting there looking at two or three days at an Ohio State hospital is somewhere between $5,000 and $10,000,” Leonard Kaes said. “How do I make that decision?”

Joint damage from hemophilia without adequate treatment. Don't want to fund "Obamacare" to provide health insurance to hemophiliacs? Then prepare to pay for them completely as they become disabled: add it up - $500,000 a year for medicine plus disability payments plus housing supplements for the rest of the hemophiliacs' life. That's what mean, short-term thinking costs, plus damage to a human life -- fellow citizens!

The Patient Protection and Affordable Care Act, signed by President Barack Obama on March 23, is supposed to make that decision easier. The three main goals of the legislation are to expand coverage to people without it, begin payment reform and change the way care is delivered, said Jerry Friedman, an adviser of health policy and director of government relations for the OSU Medical Center.

The act includes sections that could benefit those with chronic conditions and allows children to stay on their parent’s plan until age 26, which could affect 2.4 million young adults, according to the Department of Health and Human Services.

“The nice thing about young people is they’re usually healthy,” Dr. Michael Yutzy said.

Young people such as Stephen, with pre-existing conditions, have more trouble finding care. A pre-existing condition is any medical condition that someone knew about or had been treated for before acquiring a health insurance plan.

“I pretty much assumed I was going to have to go work for a big company that has that plan there for me already,” Stephen said. “I felt kind of limited, honestly, with what I could do because of that.”

The age 26 provision applies to plans that already offer coverage for dependents, according to the Department of Health and Human Services.

Stephen can take advantage of the option even if he doesn’t live with his parents, is not a dependent on their taxes or gets married.

About 1.8 million young adults are without insurance, according to the department. Some think they don’t need it, many are not able to afford it and starting jobs don’t always offer it.

“They will now be able to go in and see a physician to get their medications, to get whatever they need opposed to waiting until a simple cold becomes pneumonia and they end up at the hospital,” Friedman said.

Starting this year, people with pre-existing conditions who have been uninsured for six months will be eligible for high-risk pools.

They will receive insurance and subsidized premiums not available on the open market.

Andrew Matthews, 44, who has severe hemophilia A, said these provisions could help adults with chronic conditions.

Matthews blogs about hemophilia and speaks at conferences nationwide.

“I spend probably half a million dollars a year just to keep me ticking,” Matthews said.

High-risk pools have been available previously and these are only available until other provisions are effective in 2014.

“If you’re a hemophiliac and go through $600,000 worth of medication (per year) and most caps are only $2 million, you’ll run through those in two, three years,” Matthews said of high-risk plans.

Now, hemophiliacs should only need a few months.

Beginning in September, some insurance carriers will begin eliminating lifetime caps. This would allow people to continue using their current plans.

“We hope that they (lifetime caps) will be eliminated in all policies,” Matthews said. “I’ll believe it when I see it.”

Annual and lifetime caps will be eliminated by January 2014, according to legislation.

Exclusions based on pre-existing conditions will also be eliminated in 2014 for adults and have already been eliminated for children.

“Nothing will help me until 2014,” Matthews said. “What will help me is if I, Andy Matthews, can go out on my own as an individual and buy individual health insurance on the open market at the same price that you can buy it for.”

Compared to people like Matthews, Stephen Kaes is lucky to have a mild version of hemophilia.

Kaes uses a nasal spray, Stimate, to help his body release the little Factor VIII he does produce. By activating the protein, his body can stop minor bleeds. The medication costs about $600 to $650 per bottle.

This is one of the lower expenses the Kaes family incurs for Stephen’s condition.

For serious issues, he needs a Factor VIII replacement. One day for Stephen costs about $2,500. Depending on the seriousness of the injury, treatments could last three days to two weeks.

People with severe hemophilia A need synthetic Factor VIII on a regular basis.

Kaes is now in his third year at OSU.

“The older I get, the more I realize I have to make smarter decisions and try not cost a fortune,” he said.

When he is eventually forced off his parent’s insurance, most provisions of health care legislation will be active.

A hemophilic elbow bleed.

People such as Kaes and Matthews might no longer be limited to big companies and high premiums.

“The main thing is getting where anybody with a chronic condition can go out and buy insurance on the open market at a reasonable rate,” Matthews said. “That’s what will really help people.

“We want to be treated just like you do because you didn’t choose to be normal, and we didn’t choose to have hemophilia. That’s just the way it happened.”


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