FREMONT, Neb. - A Fremont doctor apparently suspected that a
high number of his cancer patients were infected with hepatitis C, but he failed
to inform individual patients or warn the state of a possible outbreak.
Dr. Tahir Javed
Seven patients have told The World-Herald that Dr. Tahir
Javed, director of the Fremont cancer center, ordered hepatitis C tests in 2000
or 2001 but didn't tell them beforehand or disclose the results afterward.
Most didn't learn they were infected until mid-2002, when
state health officials found out about the outbreak and determined that it was
caused by poor infection control at the cancer center. The patients didn't learn
of the earlier tests by the cancer center until they requested copies of their
medical records and reviewed old bills and insurance statements.
Although it's far from certain, earlier warnings might have
helped Javed's patients - one of whom died in March. More than 80 were infected.
Medical ethics call for doctors to keep patients informed and
get their consent for any tests. Nebraska law requires doctors to notify state
health authorities if they detect an outbreak of a communicable disease.
What Javed knew and when he knew it are key issues in
multiple investigations.
Federal and state investigators want to determine whether any
effort was made to conceal the outbreak and whether criminal charges or
disciplinary actions are warranted. State epidemiologists are studying the life
cycle of the outbreak. And infected patients and their relatives want to know
why the doctor they trusted may have been harboring his concerns.
"It made you suspicious whether he knew what was going on or
not," said Gary Strong, 47, of Fremont, who discovered his test when he reviewed
his records. Four months of interferon treatments for hepatitis C have exhausted
Strong, and he has two months to go.
It is possible that Javed made brief references to tests that
the patients missed or that he kept quiet to spare the cancer patients any more
anxiety. Javed, now an elected official in Pakistan, could not be reached for
comment. His Omaha attorney would not discuss the issues.
More than 70 patients have sued the cancer center, which has
closed.
State public health investigators believe the spread of
hepatitis from one patient to another occurred because nurses reused syringes
and other single-use medical equipment.
In addition to those tested at Javed's clinic, several
patients recalled that blood tests showed that they had elevated liver enzymes,
a common predictor for hepatitis C. However, they don't recall being tested for
hepatitis or alerted to the possibility of infection.
"Hepatitis was not mentioned," said Pam Savio, who received
chemotherapy at the clinic in late 2000.
Others recalled discussing hepatitis with Javed. One patient,
who works in health care, said her hepatitis test in the summer of 2001 seemed
odd, because she had not shown any signs of being infected.
State public health investigators were similarly perplexed
because some patients' medical files lacked information that justified ordering
hepatitis tests.
Patients aren't routinely checked for hepatitis, local
oncologists said, unless other blood tests show a reason for concern.
The patients who were tested by Javed said that they either
didn't know the results or that the results were negative. That is plausible.
The most common hepatitis C test looks for the body's response to the virus, and
not the virus itself. So it may have been fooled by these patients whose immune
systems had been weakened by chemotherapy.
Obtaining consent from patients and discussing test results
is "basic social policy," according to the American Medical Association. If
Javed withheld information from his patients, he "violated standards that are
fundamental and universally accepted in Western medicine," said Judith Kissell
of Creighton University's Center for Health Policy and Ethics.
Javed, 38, graduated from medical school in Pakistan in 1988
and completed residencies in South Carolina and New York. He started the Fremont
cancer center in 1997 and developed a reputation for his compassion.
Martha Ann Lee recalled how she was given a few weeks to live
when Javed initiated her treatments for lung cancer: "He said, 'We're in this
together, we'll fight it.' That was three years ago."
Lee, 65, has hepatitis C but hasn't needed treatment yet.
State authorities learned of the outbreak in mid-2002, when a
physician told them that a handful of his hepatitis patients had all received
treatment at the same cancer center. Authorities then tested more than 500
patients.
Chronic hepatitis C usually doesn't cause cirrhosis, or other
types of liver damage, for 10 to 20 years. And one in four infections don't
become chronic. But cancer and blood disorder patients may be more susceptible.
Cancer center patient Cheryl Gentry died March 7 while
awaiting a liver transplant, and her autopsy lists the cause of death as
"cirrhosis with complications, secondary to hepatitis C virus infection."
Earlier notice may have been difficult, given the testing
problems, but could have helped Gentry and other infected patients, said Dr.
Mark Mailliard, a hepatitis expert with the University of Nebraska Medical
Center in Omaha. The latest research shows that early treatment of hepatitis C
can prevent chronic infections.
State health officials have determined that the outbreak
started in March 2000, when a patient with a rare form of hepatitis C received
cancer treatment. It ended in June 2001, when a review by an outside
organization discovered that nurses at the cancer center were using poor
infection control.
That organization, the Missouri Valley Cancer Consortium, was
considering adding the Fremont cancer center as a site for clinical research.
Instead, it issued a warning letter and sent a copy to the Fremont Area Medical
Center, the hospital owned by Dodge County where the cancer center was located.
Attorneys for the infected patients have filed claims against
the county, and have pointed to the hospital's early notice of infection control
problems. Hospital officials stress they only leased space to Javed.
While procedures were corrected, nobody reported the cancer
consortium's findings to the state. It is required under Nebraska law to report
evidence of substandard care.
The World-Herald contacted 33 of the infected patients, some
of whom declined to discuss their conditions. It is a wide-ranging group that
includes health care providers, truckers, factory workers and farmers. At least
one patient is in his 20s, while others are in their 70s.
Leona Slawson had survived cervical cancer, but she could
tell during her work at a Fremont packinghouse last summer that something was
wrong. The state test simply put a name to it.
"The work I do usually builds muscle and makes me stronger,"
she said, "but I was getting weaker."
Treatments have drained her, but she is working as much light
duty as possible in order to support her 15-year-old daughter and to pay medical
bills that aren't covered by insurance.
Some patients are frustrated that the state hasn't restricted
or revoked the licenses of Javed and his former nurses. They have launched a
letter-writing campaign to hasten the attorney general's decision.
A criminal investigation by the U.S. Food and Drug
Administration is also under way.
Whether Javed will return from Pakistan is unclear. He left
initially to attend to his ailing mother, but recently won elected office and is
now the minister of health for the Punjab region of more than 70 million people.
ALL INFORMATION, DATA, AND
MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION
PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS
OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR
LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.
"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"