In the five years since Florida Medicaid launched an experiment in private managed care, Leslie Rosenstock says, her disabled son has been shuffled through three HMOs.
At a Tuesday night forum in Hollywood, she held up a flowchart traced in magic marker to show the maze she went through to get his medication.
"We had to start over from scratch each time an HMO backed out," she said. "There's no continuity of care."
Other unhappy patients and doctors lobbed one story after another at state and federal officials, hoping to persuade them that the Medicaid pilot has failed and should not be expanded. Organizers of the event timed it for a week before the launch of the legislative session.
"I'm telling you, they have the votes to pass this stuff," said Rep. Joe Gibbons. "So if you all want to fight this, you're going to have to be committed."
The state would need a waiver of federal Medicaid rules from the Centers for Medicare and Medicaid Services to put the expansion into effect. CMS officials attended the forum but did not speak.
The pilot required that nearly all those enrolled in Florida Medicaid -- low-income children and disabled adults -- in Duval, Broward and three rural counties enroll in a managed-care organization that assumed risk for all expenses. Statewide, there are nearly 3 million in Medicaid now, with more projected for next year.
State officials are pushing for statewide managed care because of the growing cost of the program, predicted to be $20 billion this year.
Under the pilot, plans agree to provide care to Medicaid recipients for a monthly premium. A University of Florida study released in 2009 suggested the pilot saves money, but the debate continues over whether the savings stem from efficiency or denial of services.
Rosenstock said her son had to undergo repeat bloodwork and other tests every time he was switched to a new HMO. "Every service he's had has been duplicated in all three plans...," she said. "I really don't see how this could be saving money."
Some physicians added their complaints to those of the patients, saying their office staffs must spend hours on the phone with HMOs, trying to get a referral or payment.
Dr. Aaron Elkin, an obstetrician, said he has to turn away women in their first trimester of pregnancy because HMOs won't pay for care.
He said pregnant women can opt out of the experimental program and use traditional Medicaid -- assuming they can get through on the phone, which is difficult -- but most don't realize they have the option.
Rather than fight, he said, some doctors refuse to take Medicaid and some patients just go to emergency rooms.
Elkin also told of another patient who hasn't been able to treat her HIV or take medicines to protect her unborn baby from contracting the virus because it takes so long to get approval.
"Is this supposed to be constitutional?" he asked.
Michael Garner, the CEO of Florida Association of Health Care Plans, was the only one of the approximately 100 people at the forum who spoke in favor of expanding the pilot.
He said he sympathized with the people who have had trouble with HMOs, but defended them as effective and high-quality. After his speech, mothers and doctors made personal appeals to him.
His organization, which consists of 19 Florida HMOs, is as responsive as possible to patient concerns, he said.
Gibbons, D-Hallandale Beach, said that politicians get a limited view in Tallahassee because the Medicaid patients who have the most trouble -- those who are sickest and poorest -- don't have the energy or money to go to the Capitol and speak to legislators.
"(Lawmakers) are looking at it from a business standpoint, strictly," he said. "This is a business model, not a patient-oriented model."
--Reporter Brittany Davis, who is based in South Florida, can be reached at 954-495-6766 or Brittany.Davis@HealthNewsFlorida.org.