Because of a drug factory shutdown, Jeannine Lipez, of Loch Haven, Pa., says she can no longer even walk across the street without getting spasms in her left leg and will probably need an operation to replace an artery.

Carol Fink, of Yountville, Calif., says lack of the medicine she needed left her constantly in pain, sapped her energy and made her thinking fuzzy.

For Dr. William Schubert, an obstetrician and gynecologist in Pocatello, Idaho, the factory shutdown may have contributed to an even more dire outcome. Schubert’s heart deteriorated rapidly. He died on March 6, at the age of 63.

These people, and thousands more, have been hard hit by a shortage of drugs made by the biotechnology company Genzyme to treat two rare inherited diseases.

Supply problems drag on

The supply problems, which have dragged on for nine months, have frayed the close relationship — unusual in the pharmaceutical industry — that Genzyme had carefully built with the users of its high-priced medicines over the past two decades.

Some of those patients now say they feel betrayed by the company they once viewed as their savior, wondering why Genzyme did not do more to build up a sufficient reserve of such vital drugs — and how the company could have stumbled so badly in trying to fix its production problems.

“They should have protected their patients first,” said Janet Schubert, William Schubert’s widow.

Last June, the company temporarily shut its main factory in Boston because of contamination from a virus. Such problems can arise in biotechnology factories, which use living cells to make drugs, and few faulted the company at the time.

But Genzyme, which initially predicted the drug shortages would last six to eight weeks, has repeatedly backtracked on when supplies would be fully restored, as it has run into further manufacturing problems.

The repeated setbacks have hurt the earnings and stock price of Genzyme, which is the fifth-largest biotechnology company, with $4.5 billion in sales last year.

Taking a toll

Beyond the financial costs, though, is the toll on people whose health depends on those two drugs: Cerezyme, for Gaucher disease, and Fabrazyme, used against Fabry disease.

Both diseases are rare inherited enzyme deficiencies that allow fatty substances to build up in the body, damaging organs. The Genzyme drugs, typically given intravenously every two weeks, provide the missing enzymes.

Companies that sell pills for widespread conditions like diabetes or depression rarely know the identities of the people who use their products. But Genzyme knows virtually all the patients.

That is in part because there are only 1,500 Cerezyme users and fewer than 1,000 Fabrazyme users in this country. It is also because the drugs are so expensive — about $200,000 a year.

Henri Termeer, chief executive of Genzyme, acknowledged that the company had let patients down. “We have this enormous humility,” he said “We have to re-earn our standing with these patients.”