"This is what keeps me alive," says 13-year-old Toni Bethea, as she picks a tiny glass bottle off the kitchen counter of her home in Washington, D.C. The clear liquid inside is insulin. Toni has Type 1 diabetes.
"Your health is obviously not anything that you should play around with," says Toni, a high-school freshman. She's pretty, smiling and stylish — from her bangs angled across her forehead to her sparkly red fingernails.
"You should take it very seriously and when you have a chronic illness like what I have and other kids have, it's very important that we take care of ourselves because there's a lot of preventable stuff that can happen to us."
It helps that her mother, Rhonda Dorsey, has good insurance, which she gets as a federal employee. She's covered by the Federal Employees Health Benefits Program, or FEHBP. It insures 8 million federal workers, retirees and their families — and members of Congress. That federal health insurance program has been held up — by the President, lawmakers and other players in the health care debate — as a model of the kind of good insurance that should be available to all Americans.
Dorsey and others who are covered under FEHBP do report high levels of satisfaction, but it's not some kind of super insurance. It's pretty much like most insurance people get through their jobs. Federal workers, too, sometimes complain about the rising costs of their premiums and co-payments and about the hassles of getting care.
The Option To Choose
Toni was five years old when she was first diagnosed with diabetes — as long as she can remember. "At five, I really didn't know what was going on, but I remember having my mother and my grandfather holding me down to give me shots and prick my fingers. And I was scared, I was confused, and it wasn't a good time."
Rhonda Dorsey's health plan, provided by the Federal government, covers most of Toni's diabetes medicine. (Greg Whitesell/KHN)
In those early, stressful days of her daughter's illness, Rhonda belonged to a traditional HMO through FEHBP. She'd take Toni to see an endocrinologist, an eye doctor and one specialist after another. "I'd always have to get a referral. And sometimes I would forget and I'd get to the doctor's office and it would be a mess. And so I'd be very apologetic and we'd have to call the pediatrician's office, and it just was a waste of time in my opinion."
There were limits, too, on the supplies she needed to manage Toni's diabetes. Sometimes a prescription refill for needles or testing strips would be denied.
So Rhonda switched insurance companies. Her new plan allows her to keep taking her daughter back to the specialists who know her best. "I have the standard plan which means that I pay a little bit more up front," she explains. "My deductible is a little bit higher, but I don't have to deal with the referrals. I can go to any doctor."
Federal employees get a lot of choice. That's what makes the Federal Employees Health Benefits Program stand out compared to other insurance. In the Washington, D.C. area, there are at least 16 health plans to choose from. Nationwide, according to a new report by the Kaiser Family Foundation and the Health Research & Educational Trust, most companies offer only one health plan to their employees, and just one percent of companies offer three or more.
The federal Office of Personnel Management conducts annual negotiations with each health plan to set benefits and rates. That has allowed it to claim some success in constraining cost growth. But last year Blue Cross and Blue Shield — which covers about 60 percent of FEHBP enrollees — increased the premium for its standard option by 13 percent. As a result, the average for all federal plans went up 7 percent. The year before, the annual premium increase was just 2.1 percent.
Her Life Depends On It
Rhonda and Toni sit in their kitchen in Northeast D.C. (Greg Whitesell/KHN)
For Dorsey, an information specialist at the Nuclear Regulatory Commission, her insurance through FEHBP has been central to keeping Toni healthy. "In order to live a healthy life with Type 1 diabetes or any kind of chronic illness," she says, "it's so important to have good insurance. And I tell Toni all the time how blessed we are because we've met a lot of people who don't have insurance at all."
Still, even with good insurance, it's expensive to manage diabetes. Toni pricks her calloused finger tips several times a day to check her blood sugar levels. Rhonda pays a little more than two hundred dollars a month for supplies.
Toni wears an insulin pump — it's the size of a cell phone and it's pink. "It had to be pink," Toni says with a laugh. Adds her mother, "Pink is definitely her style." The first pump cost five thousand dollars. Insurance paid all but five hundred dollars.
Toni knows she's fortunate. This summer, she went to a summer camp for kids with diabetes. And she saw what kids do when they don't have good health insurance. "At camp they provide you with supplies, but I've seen kids who have saved their needles and taken them with them," she says. "Even though you weren't like supposed to, they would kind of sneak them just to make sure they would have something when they got back home."
Toni and Rhonda know that when people don't have good insurance, they're so desperate they will even reuse a needle. "It gets dull. And so it really hurts. But you have to have insulin, just like I said," Rhonda says. "I mean, without insulin, Toni would die. So you, take the pain in order to live."
Toni listens to her mother and adds, "I do feel very grateful for all that I have because that could be me."