Longtime use of drug may have halted disease

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Ironically, losing financial help toward her out-of-expenses for leukemia medication could prove to be a godsend for Sherrie Leavelle, of Scottsdale, Ariz.

Leavelle was diagnosed with chronic myeloid leukemia in 2002. The 73-year-old has been taking Gleevec, a chemotherapy pill manufactured by Novartis, since 2003.

She’s eager to share the news with friends on an internet support group for chronic myeloid leukemia patients that she may be among a select group of patients who have halted their disease from years of taking Gleevec, and can go off of it without consequences. Retired Pocatello High School math and science teacher Mark Edwards is a member of the support group.

Immediately after her diagnosis, the doctor informed Leavelle that she had a year to live. Then, he told her about a new and promising drug, Gleevec. Today, the annual cost of a prescription of Gleevec is $146,000. It cost $26,000 when the drug came out in 2001.

“I want the pharmaceutical companies to make a profit, because that’s the American way. But I don’t want them to gouge the public at large,” Leavelle said. “Why can’t we have some type of group that oversees the margin of profit on lifesaving drugs?”

For years, Leavelle has received grants providing assistance toward her out-of-pocket expenses for Gleevec. The grants are funded by drug companies, aimed at helping patients on Medicare, who can’t use copay cards. At times, she’s resorted to begging and pleading for renewals.

“You go from prescription to prescription hoping everything is all right, and if it isn’t, all hope is lost,” Leavelle said. “I’ve been worried to the point where you lay awake all of the time.”

Leavelle hasn’t taken Gleevec since January, when her streak of successful grant renewals came to an end. Her previously affordable monthly copay jumped to $1,200. After she stopped taking the drug, and her health didn’t seem to deteriorate, her oncologist included her in a study to see if she’s a candidate for permanent withdrawal from the drug.

On June 26, officials with Novartis told Leavelle their foundation is again renewing her grant for Gleevec through December, which is good news in case her tests show she should stick with cancer medication, after all.

Edwards recently learned he’s not a candidate to quit medication. His doctor told him his white blood cell count started rising during the month in which he went off of his drugs for financial reasons.

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