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    Some fear they'll die if state benefit lapses

    As lawmakers scramble to stall cuts, 27,000 sick Floridians look to charities for help and consider how death will come.

    By ALISA ULFERTS, Times Staff Writer
    © St. Petersburg Times
    published April 27, 2003

    TALLAHASSEE - Carroll Hamlett knows the details of his pre-need funeral contract better than his daughter's face.

    He can't get life insurance, his family can't afford to bury him, and with three days left to find another source for his life-sustaining drugs, Hamlett says that contract will keep him out of a pauper's grave if he dies next week.

    "If they cut my medicine off, I will be dead within seven days," said the Inverness resident, who received a heart transplant 11 years ago.

    Hamlett is 38. His donated heart is 54 and will stop beating without the powerful drugs that prevent his immune system from attacking it. Those drugs cost more than $1,500 a month - the same amount Hamlett gets in disability plus his wife's paycheck.

    He is one of 27,000 sick Floridians scrambling, many with less than a month's notice, to find help before cuts to the state's Medically Needy program kick in on Thursday. The program serves catastrophically ill residents who have exhausted their own insurance and whose bills deplete their income. If Hamlett and others can't afford to live on $450 a month - the only part of their income they won't have to spend on their care to get state help come May 1 - they will go without.

    Senate President Jim King and House Speaker Johnnie Byrd have agreed, in principle, to stall the cuts for two months to give the state a chance to come up with a permanent fix for next year. But politics have gotten in the way: Byrd won't approve the two-month fix unless King agrees to one of Byrd's priorities, a new, $11-million drug program for low-income seniors. King has said several times this year that although he supports the concept, Florida can't afford new programs at a time when it's cutting existing ones.

    One of them will have to back down in the next three days if Medically Needy participants are to keep their drugs. Meanwhile, participants are left waiting, crossing the days off a calendar.

    "Why can't the politicians just fix this?" Hamlett asked.

    A car accident 16 years ago left Hamlett brain-damaged, and medications designed to heal that injury left him with a severely damaged heart. He remembers waking up in intensive care one day, awaiting a heart transplant.

    "When I got my heart, I wasn't the first choice. But I got the heart because the first choice didn't answer the phone," Hamlett said. His donated heart was a good, not great, match, and the difference is what makes him so susceptible to organ rejection without his medicine.

    Hamlett's body has tried to reject the heart three times already, so he will know the symptoms if they come next week: several days of malaise and sluggishness followed by a burst of sudden energy, a last-ditch surge of adrenaline.

    The other three times, Medically Needy paid for his hospitalization and the drugs that halted the rejection. With a wife and daughter to support, Hamlett said, he couldn't afford to live on $450 a month even if he had time to prepare. So come Thursday, he's on his own.

    His birthday is in late May.

    "But my family is having an early birthday party for me next weekend in case I don't make it," Hamlett said.

    Gov. Jeb Bush has set up a hotline to help those leaving the program find private sources for their medications, such as the charity programs many pharmaceutical companies have. But Hamlett and others have found they are ineligible for some charity care programs because of their disability benefits. And with so many thousands of people looking for help, competition is fierce.

    A patient with a medical emergency is not likely to be turned away at the emergency room, but it's not clear what would happen to many of these patients once the emergency was stabilized.

    Of the Medically Needy patients whose lives depend on their prescriptions, potentially hundreds, such as Hamlett, could die quickly without them, a victim of sudden organ failure. Others, like a group of Sanford dialysis patients who pleaded for their lives in letters and pictures sent to lawmakers, say they will linger for several weeks until the built-up toxins poison their healthy organs. Snapshots of them smiling with family can't hide veins warped by dialysis, yet they've been erased off organ transplant lists because they can't afford the anti-rejection drugs.

    Clearwater cancer patient Terry Draper said she will die over the course of several months, her cancer running unchecked in the absence of the chemotherapy once provided by Medically Needy.

    Draper has Stage 4 colon cancer that has spread to her liver, and she depends on Medically Needy for treatment. With chemotherapy, she has at least a year to spend with her daughters and granddaughter. Without it, she's not expected to live until Labor Day.

    She and her doctor are trying to find a charity that will pay for her chemotherapy, but so far have had little success. Draper makes between 20 and 30 calls a day, checking on applications, following new leads.

    "I don't want to say that no one will help me, but so far I haven't found any help," said Draper, 63. The publicist bought her first home, a Clearwater condo, last fall, two months before she learned she had cancer. To keep costs down while starting her own business, Draper had sacrificed health insurance, which would have cost her $450 a month, the same amount she would have to live on to stay in the Medically Needy program.

    "I wasn't expecting to get sick," she said.

    And she wants to die at home, in her condo, and not be forced to sell it to help pay for her treatment.

    "I said, I suppose I could sell the place, but where do I go?" she asked.


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