Many at risk of falling into health coverage gap


Jacquie Garvey was born with cystic fibrosis and recently had a lung transplant. Pictured here Thursday, October 24, 2013, Garvey sits in her northwest Gainesville home with all of the medications she must take daily and some twice daily.

Doug Finger/The Gainesville Sun
Published: Sunday, October 27, 2013 at 6:01 a.m.
Last Modified: Saturday, October 26, 2013 at 8:39 p.m.

When Jacquie Garvey of northwest Gainesville got a letter last month from Blue Cross/Blue Shield explaining that her premiums had doubled, she panicked.

Her new monthly premium — $543.81 — is nearly equivalent to her monthly disability check of $619. That's what she and her 18-year-old twins are living on.

“Our house is a shrine to buy one, get one,” said Garvey at her home near Santa Fe College. She tracks chicken and pork prices by the cent at Publix and Sam's Club.

“We have a real no-frills lifestyle,” Garvey said. “We never eat out or go to movies.”

The grass in Garvey's yard is 3-feet high since she can't afford to get it mowed and doesn't own a mower. The pool out back is filled in with dirt to save the maintenance costs. There are cracks in the wall of her home that she says sits on a sinkhole, but she can't afford to move. “At least the taxes are low,” she said.

Two spotless white cars sit in the driveway, unused, since she can't afford car insurance.

“These poor kids are still under their learner's permits because I can't afford to insure them on the cars,” Garvey said.

Like millions of Americans, Garvey is unsettled by the rising cost of premiums that insurers have enforced in order to cover the costs of providing insurance to the millions of newly insured under the Affordable Care Act.

The letter from Blue Cross cited several requisite ACA “essential benefits,” including newborn and maternity care, along with vision and dental care, as reasons for the spike.

At the heart of Garvey's own struggle is a serious, lifelong medical condition that has made it hard for her to hold down long-term employment and also get insurance to cover ongoing medical expenses.

Garvey was born with cystic fibrosis, a genetic condition that causes frequent infections in the lungs. Until last March, when Garvey finally underwent a long-awaited lung transplant, every six months she would go in for a “tune-up,” which involved several rounds of IV medications that caused her to miss work for two weeks at a time.

When the ACA was “coming down the pike,” Garvey said, she felt hopeful.

“I was so excited because someone like me was always stuck. There were finally no pre-existing conditions” to qualify for health insurance, Garvey said. “For the first time in my life, I was going to be able to shop around for insurance.”

But Garvey soon discovered that Blue Cross/Blue Shield — her current provider — is the only one in Alachua County. She suspects the single provider has limited competition and driven up the price of premiums. Insurance regulators in Florida also do not have the legal oversight to monitor premiums on the exchanges for the next year and a half because the Florida Legislature voted against the state having the oversight.

Garvey also learned that her income is below the threshold for receiving federal subsidies as part of the federal insurance exchanges.

“I'm too poor to be subsidized for the ACA, and somehow I'm too rich for Medicaid,” Garvey said.

The coverage gap

Garvey is in the coverage gap that millions of Americans risk falling into — especially in states such as Florida that did not expand Medicaid.

The Kaiser Family Foundation in Washington, D.C., estimates the coverage gap includes nearly 5 million people nationally — 16 percent of whom live in Florida, the second-highest state after Texas, with 20 percent.

“In most states not moving forward (with Medicaid expansion), an average of 86 percent are not eligible for Medicaid,” said Rachel Garfield, associate director at the Kaiser Commission on Medicaid and the Uninsured. “The vast majority are most likely to remain uninsured.”

That's an imminent concern for at least 4,000 people in Alachua County, the current beneficiaries of the CHOICES program, which for the past several years has met the health care needs of the working poor. The funding for the program runs out at the end of the year.

“CHOICES has been a lifesaver for me. I am so sad it's leaving. I don't know what I'm going to do,” said Deborah Reid, a child-care provider in High Springs. “It's more or less preventive care. It's certainly helped keep a two-time breast cancer survivor healthy.”

Because of Reid's history of cancer, she is closely monitored with annual mammograms, an expensive test, but one that she'd rather not go without.

“There's a chance of recurrence (of cancer) that I worry about,” she said.

Reid also takes five medications for other conditions such as high cholesterol. In all, her medications cost about $1,000 a month, but under CHOICES, she's been paying just $5. “I'm going to lose all my medicine coverage” when CHOICES expires, she added.

She'll also lose her dental plan and annual vision checkup.

Reid tried to find out more information about the health exchanges earlier this month, but with the federal website malfunctioning, she's still waiting to see what type of plan she might be able to get.

She makes $1,500 a month and worries her premiums might be two-thirds of her income. “I'm hopeful that there's something out there for me, but I don't really believe it,” she said.

Navigating the options

Candie Nixon, the acting director of CHOICES, said she is hoping to transition most people in the CHOICES program into the federal insurance exchanges. She is working on a mail-out about federally certified navigators who can meet with people at the CHOICES office in Gainesville.

“Most people don't want to be without health care,” Nixon said. “It extends beyond just going to the doctor. You may have enough money for the doctor, but not enough money for the prescriptions.”

CHOICES benefits have included coverage for medications, outpatient, mental health, vision and dental services, excluding ER visits and hospitalizations.

Dr. Allan March, chair of the CHOICES advisory board, said that about 1,558 current enrollees qualify for the health insurance exchanges.

“That leaves 2,500 who can't get subsidies and can't get Medicaid,” March said.

March added that if Florida had expanded Medicaid — rejected by the Legislature last May — 80 percent of CHOICES patients would have been covered.

The CHOICES program, which was passed by a local ballot initiative in 2004, was funded by a surtax of 0.25 percent, mostly from local car sales. But Nixon said, “At this time, there is nothing on the horizon to sustain CHOICES.”

March added that reinstating the program through the surtax would require 10,000 signatures via petition and then a local referendum next fall.

“Politically, it would be an uphill battle — it's a long shot,” March said. “One question that I would want to ask (the Legislature) is 'Would you support Medicaid expansion if limited to working adults?' ”

In the meantime, both March and Nixon anticipate that phasing out CHOICES will result in a greater burden for local safety net services such as Helping Hands Clinic (for homeless people), the UF Mobile Outreach Clinic and UF Health Shands Hospital.

“These people are going to fall back on the community,” March said. “Very likely there might be an increase in ER visits, hospitalizations, visits to the health department, uncompensated visits.”

Same story for hospitals

For Dr. David Guzick, senior vice president for health affairs and president of UF Health, caring for the uninsured is not a new problem. He pointed out that the CHOICES population is only a fraction of people in the county's coverage gap.

According to March, 20 percent of the population in Alachua County is uninsured, or about 42,705 people.

Some 8 percent of patients at UF Health Shands Hospital last year were uninsured, Guzick said, adding that Medicaid expansion would have covered three-quarters of them.

The state's decision not to expand Medicaid also displaced the hospital's DSH, or disproportionate share hospital funding for hospitals, which is given to hospitals with a large number of indigent patients. Only states expanding Medicaid will receive the funding, as a form of compensation for the expansion, Guzick said.

“Florida, in choosing not to do Medicaid expansion, not only lost the 100 percent match in federal funding that would have come in; we are losing the DSH payments,” Guzick said.

From a clinical perspective, nothing really changes for the hospital since it has always cared for a large number of uninsured patients and will continue to do so, Guzick added.

“We are caring for them now, but at the wrong point in their illness,” he said.

That means UF Health might see diabetes patients not at the outset of their illness when medications could control it, but when patients start to lose their eyesight or have other serious complications from the disease, Guzick explained.

“We see these folks now when things are an emergency,” Guzick said.

He said that about a quarter of the uninsured patients that the hospital saw last year are eligible for the health insurance exchanges, although he suspects a much smaller percentage to actually obtain it.

“If they are living paycheck to paycheck, they are probably concerned about other issues,” Guzick said. Other people will consider themselves too healthy and pay the penalty. That leaves the sickest people who will likely sign up, driving up the cost of premiums, Guzick added.

Unaffordable premiums

For Jacquie Garvey, high premiums with Blue Cross/Blue Shield forced her to look elsewhere for additional help. Because she's on disability, she said she found a way to qualify for supplementary Medicare coverage under a UnitedHealthcare plan that she found through AARP.

But as soon as she finds a job, she'll lose that, she said, adding that not finding a job is not an option.

At least, she says, she is healthier than she has ever been. She's still reveling in her new lungs, which she received on March 26, a day she thinks of like a birthday.

“The beauty of these new lungs is that they are pristine. They are not infected,” Garvey said.

That means she will no longer have to take long leaves of absence from work, even though she will always have to be carefully monitored medically — so medical bills will always be a part of Garvey's life.

“One of my doctors put it very aptly: a transplant is not a cure, but a movement to a different disease,” she said. “But we keep clacking along.”

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