Canary in a Coal Mine

The drug that could help Shelley Rozolsky is too experimental for her county-sponsored health plan

At age 55 Shelley Rozolsky has experienced more medical crises than most people do in a lifetime. When she was 18 years old, doctors noticed a lump in her breast. They told her it was nothing to worry about unless the lump got bigger. It eventually did. The growth proved to be malignant, and she had a mastectomy at age 43. Four years later she discovered a lump in her remaining breast, this time a more aggressive strain of cancer, so she had a second mastectomy. She has also had her lymph nodes removed and has osteoporosis.

These days she's cancer-free, works full-time as a secretary at the Broward County main library, and is taking classes to earn a master's degree in creative writing at Florida International University. She's short, has blond hair, wears owlish glasses, and flashes a broad smile. She's also determined and energetic. When not working at the library or in class, she's active in the Patient's Bill of Rights Coalition, a Boca Raton advocacy group pushing for health care reform. Last summer she testified before a Florida Senate committee on the issue.

Eventually she wants to write a nonfiction book about how people are underserved by health care systems. Based on her current battle with her insurance company, it might be an autobiography.

Rozolsky has chronic urticaria, which is the medical term for hives. People generally don't die from hives, but they swell, itch, and break out in rashes. In most cases the condition is brought on by an allergic reaction to a food, spice, or chemical. For Rozolsky, however, the hives are symptomatic of something more troubling -- she's allergic to herself. "In laymen's terms, that is exactly what is happening," says Dr. Jose Moreno, an immunologist at the University of Miami who has been treating Rozolsky for about a year on referrals from her primary-care physician. "Normally people don't make antibodies against their own cells. Her body does."

Rozolsky believes she contracted the malady from a bug bite soon after her lymph nodes were removed. After doctors prescribed massive doses of antibiotics, the hives appeared. (Moreno is noncommittal on this.)

To control the hives, allergists prescribed steroids and antihistamines. But Rozolsky faced a problem. If she missed a dose, she broke out in a rash, and her face and the inside of her mouth swelled. Then panic set in. "I'm afraid I will ultimately die," she says. Five times in the last year she has had to seek help in a hospital emergency room. And the treatment causes side effects: osteoporosis, high blood pressure, diabetes, and acne.

Until a few months ago, Rozolsky or her doctors couldn't do much. She had been to primary-care physicians, specialists, and finally Moreno, but none could come up with an alternative. Indeed Moreno tried every trick in his black bag to get his patient off steroids. Then last fall, after coming across a 1998 study in the British Journal of Dermatology, he hit on something that worked: intravenous immunoglobulin. Typically used to treat people born with immune disorders, immunoglobulin is expensive but effective. The British journal indicates that people with urticaria similar to Rozolsky's were found to be free from outbreaks for as long as three years when treated with it.

In September Rozolsky had five immunoglobulin treatments over the course of a week. At the time she was covered under HIP, an insurance provider that contracted with the county. HIP picked up the tab for the treatments, which were so effective she was able to stop taking steroids for almost three months. "I was excited," she comments. "I was feeling much better. I had hope that I was going to be OK. It was like finally a doctor was working to help me."

Then in October she switched from HIP to Humana to save $80 per month. She didn't bother to check whether the new plan covered immunoglobulin, because she thought she was cured. But when the treatment wore off and she sought another dose, she discovered Humana wouldn't pay the $7000 tab.

Yes, she acknowledges, she should have been a better consumer. "I wasn't even thinking about that," she says. "Of course now my mind is working in a different direction. How much can you investigate? There is always something that will come up you don't know."

As a secretary she can't swing the cost of immunoglobulin on her salary. And she shouldn't have to. "It's amazing all the trouble you have to go through, even when you have a legitimate medical provider," she says. "I don't think it's OK for an administrator to make decisions about my life. A person who has never sat down with me can't tell me what I can or can't have."

Humana classifies immunoglobulin for urticaria as experimental and doesn't cover it. "In this case what is looked at is the scientific evidence," says Humana representative Pam Gadinski. "Is it accepted? Is it scientifically effective? According to Humana coverage, [immunoglobulin] is covered for several things, but it is not covered for this particular diagnosis. Whatever evidence is available does not support at this time that it is effective for this condition."

That could change, notes Gadinski. The insurance giant has an appeals process that includes review of all the available data by an independent immunologist. Should such a doctor approve immunoglobulin for treatment of urticaria, Humana might agree to pay. But such things take time -- as many as 30 days -- for an answer.

The bottom line: "My point would be, for consumers who are considering making a switch, they need to look at a much broader picture than just what it costs," says Gadinski.

So Rozolsky finds herself stuck in insurance purgatory. An effective treatment for her condition exists, and her doctor is willing to administer it to her. But she has no way to pay for it. Eventually she may be forced to choose between tuition and a medicine that would allow her to live a normal life. "That's something I don't really even want to think about," she says.

If the insurance company relents, Rozolsky may be something of a canary in a coal mine. According to the available research, says Moreno, as much as 40 percent of all urticaria cases could be autoimmune in origin. If that proves to be true, it could answer a lot of questions. "Urticaria is one of those conditions in which you can do a million-dollar workup and you don't find anything that points to the cause," Moreno says. "You may still have the problem 20 years after diagnosis."

For now Rozolsky has to wait to find out whether or not she'll get another round of immunoglobulin. She's filed a complaint with Humana, and Moreno has sent in all the research he can get his hands on.

It's all going into her book someday. "I don't trust primary-care physicians," she says with a smile, though she's dead serious. "They are looking to save money, and no one saves money at my expense."

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