Y2k turns patient into advocate

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Y2K turns patient into advocate Health care glitch could be matter of life, death for many

By Gary Dorsey Sun Staff

After 13 brain surgeries in 25 years, Laurene West has come to rely on an assortment of medications to suppress infections and avoid meningitis. Without them, she could die.

The Y2K problem for her is how to make sure a computer glitch in this country or abroad does not interrupt the flow of critical drugs.

So for the past year, West has nagged and pleaded with health care providers and government officials to ensure that her needs will be met. Like millions of patients, her well-being depends on vast computerized systems that support life-sustaining equipment in case of another surgery; medical records that constitute her patient history; and the regular availability of medications to treat her illness.

In less than a month, West and millions of others will see how well the industry has responded.

Though health professionals in Maryland and across the United States express confidence that their hospitals, equipment and physicians will be ready by Jan. 1, many people have concerns.

In October, the Food and Drug Administration reported that more than 4,000 biomedical devices -- including ultrasound systems, hemodialysis equipment and bedside monitors -- werenot Y2K-compliant. Even more devices may be at risk because some manufacturers have not fully described the potential for problems if computer systems malfunction because they cannot recognize the year 2000.

An American Medical Association spokesman told Congress on Nov. 4 that it is hard to gauge the level of risk but that computer failures pose real threats to patient safety.

There are also concerns that some nursing homes, home health agencies and physicians have neglected to test their biomedical equipment and records systems.

When the U.S. Senate's Y2K committee released its 100-day status report in late September, Vice Chairman Christopher J. Dodd bemoaned the situation. "The health care industry, while it's better than it was a year ago is still the one that worries me most," said Dodd, a Connecticut Democrat.

For West, a 44-year-old nurse and medical systems manager, the industry's deficiencies come as no surprise.

In fall 1998, after working as a Y2K project manager for health care companies in California, West met with the Senate committee to plead for better preparation within the pharmaceutical industry. At the time, most Y2K issues concerned utilities, national security and financial institutions.

West told the committee that a disruption in the medication supply chain could be more significant than a power failure. "Nurses can keep patients alive with manual procedures," she said. "But we cannot keep patients alive without medications."

Since 1983, she said, when surgery to treat a benign brain tumor left her with persistent staph infections, she has been dependent on intravenous antibiotics and other daily medications. A delay in availability could kill her.

As a patient, she raised personal concerns, but as a nurse, she also spoke on behalf of millions of insulin-dependent diabetics, cardiac patients, transplant patients and others who, she said, could die if drug supplies, many of which are manufactured overseas, suddenly dwindled.

Her testimony startled the pharmaceutical industry, raising fears that people might begin stockpiling medicines or find themselves without access to appropriate treatment. In response, the industry became galvanized. West joined a newly created pharmaceutical alliance as a patient advocate.

She quit her job, raided her savings, moved to the Washington area and dubbed herself "National Patient Advocate." For the past year, she has spoken frequently with drug distributors, hospital officials, medical associations and patients around the country.

West said she believes the pharmaceutical industry is better prepared than it was a year ago. But she remains critical of health care providers, government officials and medical association leaders who have played down the potential for trouble. A better-informed public, she said, would know how to assess the risks and take suitable precautions or to lobby the industry for more aggressive action.

"The best way to prevent panic is to educate people about what they should do," she said.

Essential testing

Tremendous efforts have been made by thousands of health care providers to correct the Y2K bug and bring equipment into compliance.

For example, at Johns Hopkins Hospital, the effort got under way three years ago. The cost is estimated at $4 million to $5 million.

Dozens of specialists have been called to analyze and test the hospital's 40,000 medical devices, to make sure the elevators and heating system will work, and to replace or repair computer systems in 85 departments and divisions. The hospital replaced its pharmacy system, for example, because the cost to make the computers Y2K-compliant exceeded the cost of replacement.

By October, except for a few tests, the preparations were complete, said Vice Provost Stephanie Reel, who orchestrated the project.

Testing proved essential. Because computer equipment often required modifications and upgrades over the years, vendors could not always guarantee reliability, Reel said. In some cases, products thought by vendors to be compliant had problems during hospital tests.

On New Year's Eve, the hospital will boost its normal staffing to prepare documents and carry messages if any part of the electronic communication systems fails. Extra help will also be available to conduct medical procedures by hand if computerized devices falter.

Nationally, hospitals appear to be well-prepared, in part because most have contingency plans for emergencies such as large-scale accidents, power outages and natural disasters.

In Baltimore and many other areas, hospitals have coordinated planning with police, fire, rescue, communications and health departments. Some hospitals, such as Union Memorial in Baltimore, have contacted nearby nursing homes to gauge their readiness in case the hospital needs to provide their patients with emergency care.

But assurances from hospital associations, physicians groups and other health care representatives might not be wholly reliable.

Doctors, for example, have been so lax in responding to Y2K surveys that data suggesting that the large majority of the nation's physicians will be prepared are widely discounted as unreliable. Nursing homes are often noted as potential problem areas for the same reason.

"We're extremely concerned about these small and medium-size organizations," said Joel Ackerman, director of Rx 2000 Solutions Institute, an industry watchdog group in Minneapolis. The institute conducts a monthly national phone survey of the health care industry, and its results indicate that hospitals are probably best prepared, while doctors' offices, home health care and nursing homes are lagging behind.

The AMA says 90 percent of doctors use computers in their practices and 40 percent use them to log patient histories. A sudden loss of those medical histories could, at a critical moment, jeopardize patient safety. The inability to file claims also could delay payments, and if the breakdown were prolonged some doctors' offices or clinics might have to close.

Of all the health care groups, the pharmaceutical industry has expressed perhaps the most confidence. Major drugstore chains have reported that they are very near full compliance. The industry generally has a 60- to 90-day supply of drugs and medical supplies in the distribution system. Some pharmaceutical companies have been building inventory. Others are putting extra supplies of major products into the distribution system.

In most cases, patients cannot refill prescriptions any earlier than five to seven days before the medication runs out, meaning they won't be able to stockpile.

At the local level, where a pharmacist such as Al Schwartzman of A&B Drugs on West Lexington Street in Baltimore runs an independent business, preparations have been simple. "I sense that everyone will be compliant," he said. "I can't see where there will be a problem."

`What will happen?'

But issues remain. The President's Council on Year 2000 Conversion recently underscored concern about smaller health care facilities and raised questions about the response of emergency medical teams when it found that only 50 percent of 911 systems were compliant as of Oct. 1.

The uncertainty continues to bring questions by phone, fax and e-mail to West's apartment outside Washington.

One day she talks to the Y2K project manager at a hospital in Peoria, Ill., about his contingency plan; the next she's taking calls from veterinarians in Kansas City, Mo. She confidently advises people not to hoard drugs and tells them to order prescription medicines five to seven days before their supply runs out. She prods drug industry officials for information she can't get herself.

But while she manages to help answer many questions, the big question -- "What will happen?" -- is one she usually dodges. But pressed, she goes for a positive spin.

"I think you'll see neighbors reaching out to neighbors," she said.

"People will begin pulling together."

Originally published on Dec 6 1999

-- Homer Beanfang (Bats@inbellfry.com), December 06, 1999


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