The high price of pain
By Elissa Ely | March 28, 2010
WHEN SHE is feeling well, I see my friend Anne every other Sunday for dinner. She worked for the state of Massachusetts for 20 years, and we treated patients together in a bare bone community psychiatric clinic. She brought enormous salads in Tupperware to work every day, took hikes with her husband on the weekends, and raised trees in her backyard. Anne does not bring flowers to friends. She brings trees. Ten years ago, treatment-resistant Lyme disease forced her into retirement. Joint pains were just the beginning. Disease invaded most of her systems, including her brain and the nerves in her face. She has a hard time describing the pain.
Aside from life-long antibiotics, she takes more medication at higher doses than anyone I have ever met. The dosages defy Physician Desk Reference standards. For years, internists and pain specialists could not effectively treat the pain. ?I go from day to day,?? she said. ?Sometimes from minute to minute.??
Then a neurologist added Topamax to her regimen. It is an antiseizure medication, also used (though less often) by psychiatrists for bipolar disorder, and (even less often) by neurologists for pain. It worked for her. Nothing else had.She took it successfully for years. When the generic brand became available, her state insurance, GIC, mandated a substitution through their drug plan, Express Scripts. The generic version was not equivalent, and the pain recurred. She began to live from minute to minute again. Her neurologist wrote a new prescription for name brand Topamax ?with no substitutions.?? The state responded in an indirect fashion. When she went to fill the prescription, her co-pay for a month of medication had increased from $60 to $1,094.
She called Express Scripts, and was told generic drug substitution was mandatory. There could be no appeal. Studies have shown what she had experienced ? that brand name Topamax is not equivalent to generic Topamax ? and her many doctors wrote letters to GIC. It made no difference.
She consulted a lawyer. He thought litigation against the Commonwealth might cost up to $100,000 (which was 10 years of name-brand Topamax) without guaranteed success. He added ? implications clear ? that a state insurance company would, of course, be represented for free by the state attorney general.Now Anne chooses between pain and spending 85 percent of her state retirement income on a single medication. No one can live moment by moment. She must treat her pain. These are the facts:
1. Anne worked for the state of Massachusetts for 20 years.
2. In return, the state guaranteed her health coverage.
3. GIC will not pay for the effective treatment.
4. We have dinner every other Sunday when she is able.
Elissa Ely is a psychiatrist.
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