Newsweek, August 24, 1998 Author: Ellyn Spragins

Title: Get It in Writing: Your medical record is like a credit rating. Don’t neglect it.

Health problems were nothing new to Melody Johnson, a 15-year-old California girl who’d suffered from cystic fibrosis since early childhood. And when her condition took a turn for the worse in 1994, her parents, Terry and Jay, reacted promptly. They detailed Melody’s deterioration to her doctor at the Chino Medical Group and begged the physician to consult with a specialist at the Children’s Hospital of Los Angeles County. They went home anticipating action. It wasn’t until much later, after Melody’s health continued to deteriorate, that Terry and Jay learned their fears had hardly registered with the doctor. In fact, the clinic notes read, "CF. Doing well." If she had seen those notes, Terry says now, she would have known she needed to turn elsewhere for help. (Chino Medical Group didn’t respond to phone calls requesting comment.)

Few of us keep a close eye on our medical records. We assume we’re not entitled, since the documents technically belong to doctors, hospitals or health plans. But that attitude is left over from the old, paternalistic health-care system. In the new order, keeping a current medical record is a key tool for monitoring the care you receive. And making sure your past records are pristine is the best antidote for two other health-care headaches: claims disputes and securing new insurance. If you’ve ever discovered an error in your credit history too late, you know what misery it can cause. Here’s how to keep that from happening with your medical records:

First, get the goods. Health providers can be prickly about sharing records, particularly when they sense trouble. "If there’s a whiff of a lawsuit or dispute, then the hackles get raised," says Dr. Vincent Riccardi, whose La Crescenta, Calif., company, American Medical Consumers, counsels patients about navigating the healthcare system. That’s why it’s best to co llect your records before you really need them. Under ordinary circumstances, most doctors’ offices will provide copies for a small charge. Health plans and hospitals are more likely to tell you when you can come in to inspect or copy them yourself. California grants consumers the right to inspect records within five working days of a written request, after paying clerical costs. Many states have adopted similar rules. Call your state’s department of insurance for guidance if your request is denied.

Once records are in your hands, check them for omissions. Notes from an initial complete physical exam should cover your family history, lifestyle, past health, current health complaints, a review of body systems and a list of drug and allergy sensitivities. If you visit a doctor for a specific problem, the record should reflect your chief complaint, a sentence or two of history and a short physical exam. You may need help decoding all the acronyms.

Now, ask key questions. Do the records reflect what happened, as you recall? Is there a description of a temporary affliction that could be tagged later as a pre-existing condition? "A talk about stress on the job could be characterized as a mental-health condition," says Chuck Milligan, director of Medicaid for New Mexico. Also, watch for a red-flag term: noncompliant. It means you don’t follow medical advice. But it can also be an excuse for the doctor to give up on your problem.

Jump on mistakes you find right away. Call the doctor, explain that the record doesn’t jibe with your experience and ask why. More than likely, he didn’t have time to write everything down. Describe what you think should be inserted, or changed, and follow up with a brief letter. Be sure to include this sentence—"I expect this letter to become a part of my medical record"—and send a copy to the records department of the insurer or hospital involved.

You’ll gain even more from taking ownership of your medical record if you stay on top of it. Ask for a copy of the doctor’s notes on your way out of an appointment—and read them. It’s also smart to keep a diary of every interaction with a health-care provider, whether it’s in person or over the phone. You wouldn’t think twice about auditing your credit history to defend your good name or tracking investments to understand your retirement prospects. Now it’s time to start giving your medical profile the attention it deserves.

NEEDLE STICK RISK

Hundreds of medical workers become infected with the AIDS or hepatitis viruses from accidental punctures each year.

By Kathleen F. Phalen - The Washington Post Company

Tuesday, August 11, 1998; Page Z10

Sept. 9, 1992. Lynda Arnold was working the evening shift at a hospital in Lancaster, Pa. Just a few months out of nursing school, Arnold was living her dream of being a critical care nurse.

The intensive care unit was lightly staffed that night. And the evening shift supervisor got called to another floor. Arnold was left behind to handle the unexpected.

"We got a critically ill patient who came directly from the outpatient clinic," she recalls. "There were no doctor’s orders, and we weren’t sure what was wrong with the patient. But I knew I had to start an IV catheter. It was standard ICU protocol."

She gathered her supplies, found a good vein in his left arm, near his wrist, and inserted the catheter. "The patient suddenly moved. . . . It was violent and he hit my hand, the one that held the needle," she says, recounting the details that never seem to fade. "It punctured my latex glove and was thrust into my left palm."

She walked to the sink and took off her glove. There was a jagged tear in her palm and she was bleeding. "I was 23 years old, four months out of nursing school, working in a 206-bed hospital in the middle of Amish land," Arnold says, recounting her early thoughts. "I decided nothing would happen to me."

Arnold later discovered that the patient had AIDS. He died two weeks after the injury. Six months later, she tested positive for the human immunodeficiency virus (HIV) that causes AIDS.

"As soon as I walked in the door of the employee health office, I knew," she says. "I looked at the nurse and she had tears in her eyes, and I started crying. It was all over."

Needle stick injuries are not uncommon. Thousands of health care workers each year are injected with patients’ blood when needles that have been used to perform often life-saving procedures suddenly become virulent projectiles penetrating a palm, a wrist, a finger, a thigh. Approximately 800,000 U.S. health care workers will be injured by patient needles this year, according to estimates used by the federal Centers for Disease Control and Prevention (CDC).

Combined estimates from the CDC and EPINet—a computer-based standardized injury tracking system used by about 1,500 U.S. hospitals—suggest that more than 2,000 of those workers will test positive for new infections of hepatitis C, another 400 will get hepatitis B and 35 will contract the AIDS virus.

While AIDS is the most feared infection, hepatitis B and C are also serious and life-threatening. Both diseases can lead to liver damage, cirrhosis and cancer. A vaccine is available for hepatitis B, which has helped reduce the number of health care workers infected each year from a high of 17,000 in 1983.

But there is no vaccine for the C virus, which public health officials believe has infected more than 4 million Americans. "The risk [of getting hepatitis C from a needle stick] is ten times greater than HIV," says Robert Ball, an infectious disease/HIV consultant and epidemiologist for the South Carolina Department of Health.

For medical workers, the hazard of contracting a potentially fatal disease is a constant worry. "It’s not going to go away, needle sticks happen. This is a huge public health threat," says Arnold, now 29.

With a swipe of a hand, a careless act or an unexpected bodily jerk, a medical worker’s life can be forever altered. Considered an occupational hazard that’s long been worn like a red badge of courage, this injury remains under-reported and under-protected, according to public health officials.

"Every year up to a million health-care workers receive a needle stick, and for many it is a death sentence," says Andrew Stern, international president of Service Employees International Union, the largest health care workers’ union in the country, which is campaigning to have all workers use specially designed safety needles. "It’s an outrage. This is a preventable crisis. More die of needle sticks than died in the ValuJet crash, but ValuJet sparked all kinds of investigation."

As the crisis mounts, public health officials are meeting here yesterday and today at the Frontline Healthcare Workers Conference to discuss the issue. Charles E. Jeffress, assistant secretary of labor for OSHA, acknowledged that more research needs to be done, but said the first step in the process is gathering information. In the administration’s first public remarks on the matter, Jeffress said, "OSHA will be issuing a formal request for information, calling for public comment and research results. . . . We believe a comprehensive strategy represents the best approach to preventing needle sticks. But we’d like to hear from you on the front lines."

No Turning Back

The stories are hauntingly familiar. They are doctors, nurses, technicians, phlebotomists, dentists, aides and laundry workers, to name a few. And when it happens, there’s no turning back.

"I felt my heart lurch into my throat, I was so frightened at that moment that I had irrational thoughts," says Patti Wetzel, a Texas physician infected with HIV in 1991 after making a house call to draw blood from one of her dying AIDS patients. She wanted to save him the ambulance ride to the hospital. "The needle was dangling from my finger and I could see small drops of patient blood coating the needle, I thought about chopping off my finger to protect myself."

She didn’t. And now, like the others, Wetzel is hoping for the best. She has not developed AIDS, but about four years ago Wetzel stopped practicing medicine, afraid of exposure to tuberculosis. She spends about half of her time on the lecture circuit, educating people about needle stick hazards. The rest is saved for things like visiting with friends and family.

"I live in the moment. I learned that my career is not the be-all and end-all. My needs are more simple now," she says. "If I were cured tomorrow, I hope I wouldn’t change a thing."

Beth Anne Algie was 22 and six months out of nursing school when she was injured some 20 years ago. "I was injecting a sweet little old lady, she was 93 and we considered her a low risk. All of a sudden she swatted her hip and sent the syringe into my other hand," says Algie about the needle stick injury. "Right away I thought I’d be okay, she was considered low risk."

She wasn’t. The patient had received a blood transfusion and was carrying the hepatitis B virus, which infected Algie.

"My liver enzymes shot up and I was [critically sick] for months and months," says Algie. "Initially I was out of work for a very long time."

When she started feeling better, Algie says, she took risks because she knew she was dying. She became a flight nurse. "I was flying on missions in Central America . . . I figured who better to go than an ICU nurse who was going to die anyway," she recalls. "But as I got sicker and more afraid, I knew I had to remove myself from the clinical setting." More recently, she has been working in public education campaigns on the risks of needle sticks. "I live for today. There’s no way I’m going to see retirement, so for now I am doing what I can do to save the lives of my colleagues. . . . They are dying and that’s intolerable."

A Lack of Concern

Compounding the injury for some workers is a lack of concern by their employers. Arnold’s hospital has been very supportive. And officials there continue to help with her needs. Other hospitals do not, health workers say. One of the most celebrated cases occurred in Montana, where a respiratory therapist became infected with HIV after using a defective needle in an arterial blood gas kit that the hospital knowingly received at no charge from a manufacturer. The hospital refused to pay any damages. When the therapist sued, the court ruled that the therapist could not recover damages from the hospital because the injury was covered under workers’ compensation. Other states have also adopted that rule.

"There are facilities who deny workers’ compensation," Arnold says. "And many employees are forced to pay their own expenses. People call me all the time because they aren’t getting the help and support they need. They don’t know where to turn, and they are often in dire straits."

Some employees discover only after an injury that they may not be reimbursed for wages or medical costs. That’s what happened to Wetzel.

"I didn’t have workers’ compensation," she says. "In Texas, an employer is not required to provide it."

In some cases, injured workers have also had their personal lives come under intense scrutiny as employers seek to determine if the infection could have been caused by sexual relations or drug use.

"The burden of proof should not be on the worker," says Andi Thomas, the executive director and co-founder of Hep-C ALERT!, a national advocacy organization based in Florida.

For those employers who don’t deny claims, the costs are staggering.

"I have a case right now where the worker has hepatitis C that she contracted in 1996," says Colleen Holland, a senior claims adjuster for South Carolina-based Palmetto Hospital Trust. "The medical and indemnity costs so far are about $165,000, and it is projected that the medical costs may exceed $300,000 and the indemnity will cap out at $218,895."

As Holland explains, every state is different, but in South Carolina, workers’ wage compensation, which falls under indemnity, is capped at two-thirds of the worker’s individual weekly wage or $436 (whichever is less) for a maximum of 500 weeks. That means that if a 23-year-old worker was totally disabled as a result of a needle stick injury, that worker would receive benefits for just under 10 years, or until he or she was barely 33.

"There is no cap on medical expenses if [patients] are permanently and totally disabled," Holland says.

But the costs can also be psychological. Donna Cieniawa, a registered nurse in Massachusetts, was injured with a needle while working in an emergency room in 1996. "I can’t put it into words, it’s a daily terror you live with, and my hospital did nothing to help," Cieniawa says.

Although the CDC had published recommendations for treatment to help prevent HIV infection after a health care worker is stuck by a needle or other sharp object, the doctor who initially examined her was reluctant to prescribe the drug combination of ZDV (zidovudine) and 3-TC (lamivudine). After some persuasion and pressure from a doctor at another hospital, Cieniawa was placed on the drugs. The patient who had been treated with the needle that stuck her had not been tested by the hospital for HIV because of a state law requiring the patient’s consent. That law has since changed.

Unlike Arnold, Wetzel and Algie, Cieniawa did not become infected with HIV or hepatitis, but the emotional scars remain. "Their attitude was, ‘We filled out the paperwork, we drew your blood, you’re done,’ " she says. "When I look back, I realize I was absolutely dysfunctional."

Mapping Strategies for Prevention

Researchers say there is no one easy technique for prevention because these injuries result from a multitude of causes and occur in a variety of situations. Among the causes are worker inattention and a lack of safety needles in health care settings.

"This is a multifaceted issue," says Wetzel. "It’s not just the workers. It’s not just the administrators or the needle manufacturers. It’s not just the regulators. Health care workers need to wake up and pull their heads out of the sand, then maybe we will have the leverage to make changes."

In 1991, the Occupational Safety and Health Administration required hospitals to regularly educate employees about handling blood and blood products. Most agree that hospitals comply with these educational guidelines for all employees, and some employees follow safety protocols to the letter. But others don’t.

Even following safety protocols isn’t foolproof. Lynda Arnold did. Patti Wetzel did. Beth Ann Algie did. Donna Cieniawa did. They all got stuck. "The people I worked with made fun of me because I always got my goggles, wore my gloves. That’s the irony of it," says Arnold, who spends a great deal of her time trying to educate workers about the hazards.

A variety of safety needles are available today and they include products that blunt during use, have protective sheaths or retract. According to a report from the CDC, these instruments, if used more regularly, could prevent injuries up to 76 percent of the time.

Hospital officials have complained that the safety products cost about twice as much as the conventional hollow bore needles and that manufacturers need to produce the safer devices more cheaply. But manufacturing leaders say that it’s a matter of supply and demand. As more are manufactured, the processes are streamlined and costs will drop, they say.

"We are becoming more efficient in manufacturing these devices and we are improving our procedures. We have been reducing costs by five to seven percent per year," says Clateo Castellini, chief executive officer of Becton Dickinson, an international medical technology company that focuses on disposable medical devices and diagnostic systems. "We’ve learned that this is a complex area and we have to work with others. . . . We think eliminating the transmission of infectious disease by sharps [needles and other devices that can cut or puncture the skin] is a role we have to play. We believe it is an ethical issue to protect users."

Some manufacturers, such as Bio-Plexus, manufacture only safety needles. "Every needle we make will be a safety device," says Tom Sutton, executive vice president of marketing and administration. "But there is a tremendous resistance to using safety devices. It’s just like seat belts, you know you have to use them, but it took a long time for people to comply."

With managed care pressures squeezing the bottom line at most health care facilities, executives say they can’t switch to the safety needles until the costs are lower. But advocates such as the Service Employees International Union, Arnold and Wetzel are campaigning nationally for safer devices in all hospitals. And Rep. Fortney "Pete" Stark (D-Calif.) has introduced anti-needle stick legislation.

"Hospitals ought to be thinking about the cost of supporting one HIV patient for the rest of their life," says Dana Trom, director of materiels management for Martha Jefferson Health Services in Charlottesville. "Just bite the bullet. You have to look at the whole picture and you need to support your employees."

One of the obstacles to a stronger prevention effort is that injuries happen in such a wide variety of ways. Arnold and Algie’s injuries occurred while the needle was in the patient’s arm. Wetzel’s was after the procedure. Forced to cap the needle because there was no sharps disposal container at the patient’s home, she was injured when the cap dislodged from the infected needle and punctured her finger. Cieniawa’s was with a needle she had not even used, but one that someone left carelessly behind.

"Every needle stick injury has a sequence of events, and you have to break these down categorically," says Murray Cohen, former CDC chief of medical device evaluations who heads the Frontline Healthcare Workers Safety Foundation. "That’s why you can’t get all excited about a product and think that it will solve it. If it was so simple, we would have already figured it out."

So for now Arnold, Wetzel, Algie and Cieniawa count their good days. "Sometimes I worry, if I die, what will happen to my family," says Arnold about her husband and two young children. "Health care worker safety is a right, not an option. . . . We have to remember, there are so many others. Somewhere out there, someone’s been infected with a deadly virus just because they went to work one day."

© Copyright 1998 The Washington Post Company

HEALTHCARE WORKERS SORE OVER NEEDLES FDA WON’T BAN KIND THAT CAUSE MOST

INJURIES

( Rocky Mountain News )

Tim Ulatowski, a top official of the Federal Drug Administration, had been speaking for about 15 minutes Tuesday when a wave of frustration broke over him at a health-care worker safety conference.

A nursing safety expert asked how many hundreds of medical workers need to die from contaminated needle sticks before the agency bans standard needles and syringes that are causing the injuries.

When, a doctor asked, is the FDA going to mandate the use of safety needles? Another safety specialist accused the FDA of "weaseling out" of its obligations to prevent injuries to workers from medical devices. Although such outbursts were rare at the two-day conference on the hazards of accidental needle injuries, they served to illuminate the frustration expressed by many health care workers: Despite more than 1 million needle sticks and four such conferences in the past 10 years, the government and hospital administrators have done little to improve safety. It is a particularly urgent matter for many of the participants at the conference. Needle sticks are responsible for infecting tens of thousands of medical workers with HIV and hepatitis viruses over the past decade. With no solid, comprehensive proposals offered to solve the problem, Murray Cohen, a former official of the federal Centers for Disease Control and Prevention who organized the meeting, told participants at the end of the conference that "we must aim for zero injuries.’ ‘ But he left the attendees with no clear outline of how that might be accomplished. Needle manufacturers who attended the conference had their own solutions, however. More than a dozen lined the hallways and small meeting rooms at the Marriott hotel with exhibits - an array of ingenious designs created to keep contaminated needles from piercing the hands and fingers of medical workers. Ulatowski, speaking at one of the conference’s workshops, said he took great pride in the speed with which his agency is approving new safety designs for the market, pointing out that more than 250 such devices have been granted approval.

But as for mandating the use of safety needles and banning standard needles, he said the agency is not even considering that step.

Copyright © 1998, Denver Publishing Co.

William Carlsen; San Francisco Chronicle, HEALTHCARE WORKERS SORE OVER NEEDLES FDA WON’T BAN KIND THAT CAUSE MOST INJURIES., Rocky Mountain News, 08-13-1998, pp 55A.

Hepatitis C Growing chorus of concern over the ‘silent’ epidemic

Carl T. Hall, Chronicle Science Writer

Friday, August 7, 1998

Nearly 25 years have passed since Paul McVetty, now 44, roamed the streets of San Francisco, shooting drugs, sharing needles, embracing havoc with fellow runaways.

McVetty hit bottom, got clean, got married, launched a career in the gourmet coffee business and moved to Marin County. The wild times, it seemed, had left no scars.

Until now.

McVetty is in the final stages of liver disease, a victim of the quiet rampage of hepatitis C: a devilish blood-borne virus that infects an estimated 4 million people nationwide—four times the number of Americans infected with the AIDS virus.

Although hepatitis C is hardly as fearsome a killer as HIV, it cuts a much broader swath. Intravenous drug users are its primary victims, but it has also hit such celebrities as singer Naomi Judd and actor Larry Hagman. Baseball great Mickey Mantle died of cancer after liver failure attributed to both alcohol and Hepatitis C Virus, as it is known.

So quietly does the virus take its toll, it has long been called "the silent epidemic." But the number of deaths from Hepatitis C Virus is expected to triple within the next 10 years. And as the death count rises, so have the voices of people like McVetty, one among thousands of recent recruits in a swelling grassroots movement. The volume can only increase:

• One in every 65 Americans harbors Hepatitis C Virus, which is spread through contact with infected blood. Hepatitis C is the No. 1 cause of liver failure leading to transplant; it is also a significant factor in liver cancer and big trouble for those also infected with HIV or the other hepatitis viruses, A and B.
• Officials in charge of the nation’s blood supply have been sending alerts this year to some of the 300,000 Americans who may have received Hepatitis C Virus-tainted blood transfusions before 1992, when the first effective screens against the virus were implemented.
• At least one class action lawsuit is in the works amid complaints that the blood supply warnings should have been sounded years ago.
• Hepatitis C Virus-related legislation has been introduced everywhere from Washington, D.C., to state capitols and city halls—including Sacramento and San Francisco. Measures typically call for more government-led research and public education, but big money has not been forthcoming.
• Although Hepatitis C Virus infections can be treated, drugs are expensive, difficult to take and help fewer than half of all patients.
• There’s no cure in sight.

"It’s a very dangerous virus," said state Senator Richard Polanco, D-Los Angeles, sponsor of a California measure, SB 694, that would direct state health officials to set up Hepatitis C Virus-education programs. Against this backdrop, doctors are reeling from an onslaught of public concern, which they say has been veering dangerously close to panic in recent months.

"It’s unbelievable," said Dr. Teresa Wright, chief of gastroenterology at the San Francisco Veterans Affairs Medical Center, where a large number of patients test positive for Hepatitis C Virus. "I feel as if there’s a tsunami wave about to land on my head."

One expert, Dr. Leonard Seeff, senior scientist at the National Institutes of Health in Bethesda, Md., is calling for a step back from "mass hysteria."

"I don’t believe for one moment that this is a benign disease," Seeff said. "But my concern is, we are going to provoke an enormous amount of potentially unwarranted anxiety."

Many organizers in the hepatitis C movement agree. "We don’t need hype," said Ron Duffy, 46, a substance-abuse counselor in Oakland who contracted Hepatitis C Virus from a 1972 transfusion while serving in Vietnam, and who now needs a liver transplant.

What activists say they do need, however, is troop strength. And they’re getting it.

"People are finally waking up," said Brian D. Klein, 40, an Hepatitis C Virus carrier helping to organize the fledgling Hepatitis C Action and Advocacy Coalition, a group based in San Francisco and inspired by the success of AIDS organizations such as ACT UP. The group plans to protest what members call price-gouging by the pharmaceutical industry.

In California alone, at least 40 patient-advocacy and support groups have sprung up in recent years; group leaders hope to forge a statewide coalition. Duffy, who in 1995 founded the Hepatitis C Virus Global Foundation in Oakland, expects to draw about 1,000 people to a hepatitis C conference August 23-25 at the Oakland Marriott City Center.

By all accounts, the state, with about half a million Hepatitis C Virus carriers, is at the forefront of the grassroots response to the disease. "It’s the next big epidemic," said Bill Remak, a recent liver- transplant recipient and coordinator of a Marin County support group sponsored by the American Liver Foundation. "Every month, it seems a new support group is starting up somewhere."

For years, hepatitis C did not even have a name. It was known only as "non-A, non-B" hepatitis until the late 1980s, when scientists at Chiron Corp., in Emeryville, and the Centers for Disease Control and Prevention in Atlanta managed to clone the virus.

Detectable only through antibody and genetic tests, "hepC" was discovered to be a fast-changing "survival machine," as one researcher called it. Some people’s immune systems kill the virus. But an estimated 85 percent of those exposed to Hepatitis C Virus become chronically infected—almost invariably from a contaminated needle or long ago blood transfusion. Over a 20-year period, about 20 percent of the chronically infected develop cirrhosis, scarring of the liver that can lead to liver failure. A smaller number, perhaps 1 to 2 percent of those infected, develop liver cancer. The rest die of something unrelated.

People can contract Hepatitis C Virus from microscopic flecks of blood left on a communal straw used for snorting cocaine. The virus can linger on razors and toothbrushes.

It’s been found in small quantities in semen and other body fluids besides blood, although most researchers say it’s difficult to transmit through sexual activity unless there’s blood contact: a possibility from rough sex, anal intercourse or sex during menstruation or herpes outbreaks. The only treatments available are the drug interferon, which often has debilitating side effects, and an anti-viral called ribavirin, recently approved for use in combination with interferon. The treatments are costly—at least $700 a month for interferon alone, and up to $1,440 a month for the combination. Treatments often manage to quell the virus, but it returns in the majority of patients. The overall success rate for the new state-of-the-art combination therapy, marketed by Schering-Plough Corp., under the brand name Rebetron, is only about 45 percent.

Nor is there any vaccine for hepatitis C, as there is for the other main viral culprits in liver disease, hepatitis A and B. Chiron scientists are in the early stages of testing one vaccine candidate, but Michael Houghton, the company’s top Hepatitis C Virus expert, and one of the discoverers of the virus, cautioned against getting hopes too high.

In the meantime, most carriers are not aware they harbor the virus: symptoms typically do not appear for years, even decades, while the microbe quietly destroys the liver.

It is this insidiousness—and the vast numbers of people carrying Hepatitis C Virus --that has health experts concerned.

Up to 90 percent of intravenous drug users, for example, test positive for the virus. Hepatitis C Virus infects close to half of the California state prison population. The chance of contracting it from a single accidental needle-stick is as high as 1 in 10, far worse odds than contracting HIV, making it one of the biggest occupational threats faced by health-care and emergency workers.

In San Francisco, the AIDS virus is still a worse health problem by far. It infects about twice as many people as the 13,000 estimated to carry Hepatitis C Virus. But deaths from hepatitis C are rising while AIDS deaths are in decline throughout the United States. Coinfections are increasingly common. "These are both health crises, and Hepatitis C Virus is now becoming a major public health threat," said Supervisor Gavin Newsom, sponsor of a San Francisco resolution that directs local public-health officials to devise a plan to deal with the growing crisis. "We need to be much more aggressive in reaching out to people who might be affected," Newsom said. That sentiment was also expressed by former Surgeon General C. Everett Koop, who during recent congressional testimony warned of a surge in liver disease for which the medical establishment is woefully unprepared. "We are at the edge of a very significant public health challenge," said Koop, who called for a high-profile public-education effort and coordinated federal attack. The response so far has been disappointing, activists say. Leaders of frontline organizations like the American Liver Foundation are lobbying for a $56 million increase this year in the $46 million National Institutes of Health budget for hepatitis A, B and C research. Other organizers are directing their energies at persuading more people likely to carry the virus to get tested for Hepatitis C Virus, both to limit spread of the disease and improve their chances with drug treatments, ineffective though they may be.

If they hadn’t been pressured, meanwhile, federal authorities might never have started the "lookback" study, in which local blood banks around the country are digging through donor records and attempting to notify anyone who might have received tainted blood in long-ago transfusions. The effort marks the first time authorities have gone out looking for those who may be infected.

Blood Centers of the Pacific in San Francisco, for example, which provides blood to 35 hospitals in Northern California, was able to identify about 400 possibly contaminated units of blood.

Dr. Nora Hirschler, the blood bank’s medical director, defends the seemingly long time it took health authorities to send out the notices. For one thing, she said, it was not clear that much could be done, since there are no surefire treatments for the disease.

"Before you embark on something like this, you need to be sure you can do something to help people," she said.

Such rationales do not wash with those warring in the trenches. "People should have been notified long ago that they may be a walking time bomb," said Carol Craig, an Orange County organizer who believes she became infected with Hepatitis C Virus while working as a medical assistant. She noted that virus carriers may be unwittingly infecting members of their family by such innocuous behavior as sharing razors with teenage children or having sex during menstrual periods, although statistics suggest the risk of household transmission is not very high.

"It’s hard to be urgent without being shrill, but right now we need to make a strong and urgent point about this disease," she said. For many years, Hepatitis C Virus inspired little urgency. The disease moved too slowly. It did damage too discretely. It affected too wide a populace: People who did not easily coalesce into a social movement. By comparison, contracting HIV was almost immediately seen as a virtual death sentence. Healthy young people became wasted shells. The disease devastated a politically active gay community.

Now, the Hepatitis C Virus picture is similarly finding focus. A vast group of carriers contracted the virus in the freewheeling ‘60s and early ‘70s, when it was unknown and the culture fostered high-risk behavior. "Those are the people now beginning to get ill," said Alan P. Brownstein, president of the American Liver Foundation. "Those are the people dying, and given the vast reservoir of carriers, more and more people are going to die unless something is done now."

Which is why so many people, from still-healthy carriers to those near death, are joining the Hepatitis C Virus movement. Like McVetty, who four years ago began reeling from depression and fatigue that his doctors could not explain, they now know what they have: a war on their hands. "We need to get out there and fight," said Alan Franciscus, 49, a leader of the HepC Support Project in San Francisco. "Because nothing’s going to happen if we don’t."

SILENT KILLER\ HEPATITIS C SLOWLY DESTROYS LIVER

( The Arizona Republic )

The Age of Aquarius is coming back to haunt its flower children.

Young people who reveled in the hedonism of the 1960s and ‘70s are discovering that the legacy of those years is a devastating and sometimes fatal disease now reaching epidemic proportions.

Little did they know that intravenous drug use, tattoos and body piercing would be an invitation to a slow-growing virus that eventually would become the recently identified hepatitis C.

Like other forms of hepatitis, the C variety inflames the liver, causing debilitating symptoms or, even more frightening, virtually no symptoms until the disease is on the eve of destruction.

The risk of contracting hepatitis C continues today. Foolhardy people still pierce, tattoo and inject themselves with unsterile needles. Unsafe promiscuous sex can put partners in danger. Health-care workers who suffer accidental needle sticks must be on guard.

In the future, these people, too, could begin to feel the effects of the insidious illness.

But it’s patients who received blood transfusions before 1992, before testing of the blood supply was refined, who are the target of an intense public-education campaign spearheaded by the office of the U.S. surgeon general, Dr. David Satcher.

Satcher’s office has urged organizations such as the American Red Cross, hospitals and blood banks to notify pre-1992 blood recipients and recommend they be tested for hepatitis C.

Identifying and contacting that population will be a daunting but worthwhile task, doctors say. Though critics have questioned the cost-effectiveness of alerting people to a disease that can be treated in less than half of all cases, health-care advocates insist patients have a right to know their health status and that withholding information is disgraceful.

"That is preposterous," says Dr. Michael Altman, a Phoenix gastroenterologist, president of the Arizona chapter of the American Liver Foundation. Although conceding that better treatments are needed, he says he can offer patients hope. "Why would you not want to know?"

Only about 5 percent of patients refuse medication, he says.

Even those who cannot be cured must be informed on how to manage their disease and how to avoid transmitting it. They should drink no alcohol, be scrupulous about protecting others from infection and maintain good nutrition.

How long hepatitis C has been around is anybody’s guess. It may have its origins in World War II, where unsterile battlefield blood transfusions could have spread the virus.

First called non-A, non-B hepatitis because its specific virus couldn’t be differentiated from other strains, it wasn’t identified until 1975. A blood test wasn’t developed until 1989.

That blood test remained unreliable until 1992.

Unlike hepatitis A (transmitted through unsanitary food preparation) and hepatitis B (spread through blood and sexual contact), for which there are vaccines and effective cures, the C strain becomes chronic in 85 percent of cases.

It is the leading cause of cirrhosis, which scars the liver and inhibits its function.

Estimates put the number of infected Americans at 4 million. Cases of HIV, the virus that causes AIDS, number only 1 million. Although deaths from the human immunodeficiency virus are declining, fatal cases of hepatitis C are rising, expecting to triple in the next 10 years.

Yet HIV has enjoyed much more media and medical attention. Doctors who work with hepatitis C patients are dismayed by such inequities.

"You see the furor raised over HIV," says Altman, the Phoenix gastroenterologist. "(Hepatitis) C has been underpublicized."

Consequently, three-fourths of all victims of hepatitis C are unaware they carry the disease. Many show no signs of infection.

Yet when hepatitis C reaches its end stage, it becomes the leading reason for liver transplants. More than 4,000 transplants are performed each year, and 10,000 names are on the waiting list. About 1,000 patients will die while waiting.

Although diseased kidneys can be assisted by dialysis, no machine can perform the functions of the liver.

But at a hefty 4.5 pounds, the organ has a lot of reserve, says Dr. David Leibowitz, gastroenterologist and chairman of the department of medicine at Good Samaritan Regional Medical Center.

Unfortunately, the liver’s large capacity allows it to quietly harbor disease for many years without signaling its deterioration. When the silence finally is broken, the patient may experience fatigue, malaise, flulike symptoms, weakness, jaundice.

More serious symptoms indicating advanced disease include fluid retention in the ankles and abdomen, confusion, increased risk of bleeding, intestinal bleeding.

Until a routine blood test picks up elevated liver enzymes, problems may go undetected. Only a specific blood test will identify hepatitis C.

Early detection is crucial.

"Our goal is to catch hepatitis C early," says Dr. David Douglas, a liver specialist at Mayo Clinic Scottsdale. "We hope to catch people before they develop cirrhosis. . . . It is a very silent, progressive disease."

Douglas is director of the Mayo liver clinic and medical director of the liver transplant program, which is just getting under way.

Mayo is conducting several research protocols on hundreds of hepatitis C patients. Age of the patients ranges from people in their 20s to those in their 80s and 90s.

Although doctors hesitate to call treatments for hepatitis C "cures" - scattered bits of virus may remain, says Leibowitz of the Good Samaritan Regional Medical Center - medication does offer some hope. Currently, the drug of choice is interferon, which produces remission or suppression of the virus in about 20 percent of cases. That means liver enzymes appear normal and the virus cannot be detected.

Interferon is delivered in self-administered injections three times a week for 12 to 18 months. Some patients tolerate the drug well. Some experience serious physical and emotional side effects, including depression.

In June, the U.S. Food and Drug Administration approved use of another drug, ribavirin, which in combination with interferon boosts recovery rates to 40 percent.

"That’s significant," says Douglas of Mayo Clinic Scottsdale.

Such combinations of drugs, called cocktails, are proving to be sound methods of treatment for diseases such as hepatitis C and AIDS.

Douglas predicts that more drugs, including anti-viral agents, will be developed and used to battle hepatitis C in the next three to five years.

A research laboratory in California also is working on a vaccine, says Good Samaritan’s Leibowitz, that could be used one day to immunize all newborns in the same way infants are currently vaccinated against hepatitis B.

So-called "universal" vaccines are "the way to go," he says.

Education is the key to managing hepatitis C now, Douglas says.

"We’ve been trying to raise public awareness of hepatitis C," he says.

"People aren’t aware of liver diseases in general."

The dilemma with the current epidemic, says Phoenix gastroenterologist Altman, is "how do we go about educating people without alarming or frightening them?"

The American Liver Foundation is committed to supporting research and informing the public about liver diseases. The foundation lobbies Congress for funding and works with the National Institutes of Health.

In the Valley, the Arizona chapter of the Liver Foundation sponsors monthly support groups for patients, hosts seminars for patients and primary care physicians, and conducts programs in schools that alert children to the dangers of drug and alcohol abuse.

Altman, who also participates in research studies, is optimistic about the treatment of hepatitis C.

"It’s a rapidly evolving therapeutic arena," he says. "I tell my patients to call me every six months. We’re all frustrated by having a 20 percent cure rate (with interferon alone), but it’s the best we’ve got right now.

"Stay tuned."

Copyright The Arizona Republic (1998)

By Barbara Yost, The Arizona Republic, SILENT KILLER\ HEPATITIS C SLOWLY DESTROYS LIVER., The Arizona Republic, 08-20-1998, pp HL1.

Hepatitis C epidemic to spread, Sydney Morning Herald

Date: 21/08/98

By DARREN GRAY

The often fatal hepatitis C virus is running rampant through some sections of the community, presenting Australia with one of its most significant public health concerns of recent years.

New Australian research just published in the prestigious British Medical Journal shows intravenous (IV) drug users and former prisoners are at a particularly high risk of contracting the blood-borne virus.

IV drug users aged under 20 had a 75 per cent chance on average of contracting the disease within 12 months, the study found.

Doctors yesterday predicted that the hepatitis C epidemic would worsen and urged Australian governments to do more to stop its spread. While public health efforts to limit HIV spread had worked, they were inadequate for hepatitis C, they said.

It is estimated that 190,000 Australians are living with hepatitis C; about 145,000 of them are thought to be chronically infected. Last year alone there were about 11,000 new hepatitis C infections.

The virus is largely spread through IV drug use, with needle-sharing the major avenue of transmission. The virus had also been spread by blood transfusions before 1990, and by needlestick injuries. On rare occasions it is transmitted from mother to baby.

The test to detect hepatitis C only became available in 1990.

In the study, one of the largest of its type conducted in Australia, Sydney researchers investigated nearly 1,200 IV drug users seeking medical care.

The group’s lead investigator, Dr Ingrid van Beek, said the findings were alarming: "The long-term health burden implications of that group of young people becoming infected with hepatitis C will be felt by this community in years to come.

"There’s increasing injecting drug use across the world and that’s coinciding with this ongoing epidemic in hepatitis C."

Hepatitis C can lead to serious health threats such as cirrhosis (a chronic degenerative disease of the liver) and liver cancer.

Dr van Beek and colleagues found a high incidence of hepatitis C in the drug users but a low incidence of HIV infection. The hepatitis C virus is both more infectious and more prevalent in the Australian community than HIV. It is estimated that about 11,000 Australians are living with HIV/AIDS, compared with nearly 200,000 living with hepatitis C.

It is estimated that up to 20 per cent of long-term sufferers will die from hepatitis C. But it does not become a chronic condition in all cases.

One of Australia’s leading hepatitis researchers, Dr Nick Crofts, said there was a high incidence of the disease in marginalised groups such as young Vietnamese drug users, rural IV drug users and the Aboriginal population.

Also, a much greater effort was needed to fight the spread of the virus in prisons and juvenile justice centres.

"Even with all our efforts to stop blood-borne viruses there’s still evidence of continuing spread, at up to very high rates in some subgroups," he said. "There are some indications that the spread is coming down, but it’s still at unacceptably high rates."

The director of gastroenterology at St Vincent’s Hospital in Melbourne, Dr Paul Desmond, warned that 80 to 90 per cent of people who get hepatitis C have the virus long-term.

Dr Desmond said the investigation was solid research and a warning against IV drug use. "IV drug using is common amongst kids, it’s common amongst all social classes, and there’s a high risk of getting hepatitis C from even recreational drug use," he said.

PAYING THE PRICE FOR PRECARIOUS LIFESTYLE OF PAST

( The Arizona Republic )

Maria Ward had been sick since 1987.

Once an avid cyclist who rode 40 miles a day to her job running a California bed-and-breakfast, Ward no longer could get out of bed. Debilitating fatigue forced her to abandon the B&B.

For three to four months, she would feel well. Then the fatigue would return with a vengeance, knocking her flat for two weeks to two months.

"It devastated me financially," she says.

She suffered chronic back problems, gastrointestinal disorders, recurrent yeast infections, fever and night sweats, excruciating muscle pain.

"I thought I was going crazy. I thought I was insane," says Ward, 41, who now lives in Phoenix. "You lay in bed and cry because your entire body hurts."

She was treated for countless diseases but continued to languish.

For almost five months in 1994, she couldn’t keep food down and lived on liquid supplements sipped a few tablespoons every hour. Her weight slipped from 135 to 102.

When doctors treated her for reflux disease, she improved some and subsisted on a liquid diet. She was still far from healthy.

The next year, a holistic doctor told her she had liver disease. But she tested negative for what ultimately would be her diagnosis: hepatitis C, once known by the vague label "non-A, non-B" hepatitis.

For perhaps 20 years, she would learn, the hepatitis C virus had been preying on her body, causing chronic inflammation of her liver, an organ whose job is to detoxify and discard products produced in the body. It also manufactures proteins, clotting factors and hormones.

A gastroenterologist finally diagnosed the disease in June 1996.

Hepatitis C, which experts say is reaching epidemic proportions, has become the leading reason for liver transplants. Such celebrities as daredevil Evel Knievel and singer Naomi Judd - a former nurse - have hepatitis C. Rock singer David Crosby underwent a liver transplant in 1994 after fighting alcoholism and hepatitis C.

How could Ward have contracted such a nasty disease?

Hepatitis C most often is passed from person to person by way of blood transfusions, intravenous drug use, unsterile needles used in body piercing or tattooing, accidental needle sticks by health-care workers, and, to a lesser extent, unsafe promiscuous sex.

Ward says that in her younger days, she dabbled in marijuana and cocaine. Snorting cocaine can rupture tiny blood vessels in the nostrils and allow tainted blood to be passed when coke straws are shared.

She has a tattoo.

Ward also has discovered that several former friends who were patients of her dentist in California have come down with hepatitis C. Did unsterile dental equipment convey the virus?

She may never know the cause of her disease, but her concern now is to keep it at bay and ward off the worst of liver ailments - cirrhosis and cancer.

Cirrhosis produces scarring of the liver tissue and prevents it from performing its detoxification duties.

Ward has just finished a year of treatment on the only drug that works on hepatitis C: interferon. She calls it her "year in hell." Used alone, interferon results in remission in about 20 percent of cases.

Participating in an experimental program at Mayo Clinic Scottsdale, she has been giving herself injections of interferon three times a week. She also has been taking a pill that may be a drug called ribavirin, which can boost the effectiveness of interferon and double its cure rate.

Because she is in a double blind study, she may have been taking a placebo.

For some people, interferon treatment can be nearly as devastating as the disease it’s meant to cure.

"You feel like you have the flu all the time," says Ward, who has battled lethargy, clogged saliva glands, chronic yeast infections, urinary-tract infections and depression - all because of the treatment.

She believes that her illness is in remission. If the interferon ultimately proves ineffective, however, she would begin a second course.

Treatment is a financial burden. Ward lives with her elderly mother, who is blind and has cancer, and depends on public assistance. She is hoping to find a job and obtain Social Security disability payments.

To bolster her emotional state, she attends a support group for hepatitis C patients but says that can be troubling. Although she receives solace from group members, dealing, in turn, with their woes is saddening.

She would like personal counseling but can’t afford it.

"I would give up anything to be able to speak one-on-one with a counselor once a week," she says.

Though her condition has improved, Ward fears a relapse.

"Since I’m in remission, I feel I’m going to get better," she says. "But what happens six months from now?"

At one time, Ward felt guilty about her disease.

"I thought I was a horrible person because I contracted hepatitis C," she says.

Family members have been emotionally and financially supportive, but some relatives refuse to visit her, believing they will become infected. That is hurtful, Ward says, and adds to the stigma.

Now, noting how many other people have hepatitis C - an estimated 4 million representing all walks of life - she no longer feels shame, which has given her the courage to counsel others.

She even advocates for patients seeking transplants, though she has decided that she would not undergo transplant surgery herself if her condition deteriorated.

"It’s a personal choice," she says. "This is the way I came into the world, and this is the way I’ll leave this world. . . .

"I have this disease. I didn’t want it, but I have it, and I have to live with it."

Copyright The Arizona Republic (1998)

By Barbara Yost, The Arizona Republic, PAYING THE PRICE FOR PRECARIOUS LIFESTYLE OF PAST., The Arizona Republic, 08-20-1998, pp HL1.

Copyright The Arizona Republic (1998)

By Barbara Yost, The Arizona Republic, PAYING THE PRICE FOR PRECARIOUS LIFESTYLE OF PAST., The Arizona Republic, 08-20-1998, pp HL1.