THE HEP-C GENERATION
part 2 of 2
In 1990, Cathy, who had moved to Manitou Springs with her husband and nine-year-old daughter, went to donate blood, something she had done regularly in the past. A few days later, though, she received a call from a blood bank official who told her she couldn't donate blood.
Cathy panicked as her mind leaped to the logical conclusion. "Oh, my God," she thought, "I must have AIDS."
But her fear dissolved into confusion when the voice on the other end of the line told her, "You've got hepatitis C."
"What's that?" she asked.
The official told her it was no big deal and suggested she talk to her doctor if she had any questions.
Cathy did. Her doctor said that the hepatitis C virus had only recently been identified. There was no real treatment, he told her, just rest and avoiding alcohol and caffeine.
Cathy felt fine, so she decided not to worry. About nine months later, though, when she couldn't seem to shake a flu-like feeling, she went in for blood tests. They indicated her liver enzymes were elevated: The hepatitis C virus was actively attacking her liver.
Still, the doctor said, there wasn't much she could do about the disease. Cathy decided to try a homeopathic practitioner. The woman put her on a strict diet--no nuts, no cheese--and told her to take certain herbs, especially milk-thistle. Later tests indicated that her enzymes were almost back to normal.
She felt good again and chalked it up to a victory of homeopathic medicine over modern science.
Soon after that, she and her family moved to Fort Collins when her husband got a new job. Cathy's only reminder of the virus she carried was when the new employer's insurance company--which she told about the hepatitis C--refused to cover any medical problems that might arise with her liver.
Mark moved to Colorado to attend college and ski. In 1992 he went to his doctor for a routine physical. The results of his blood test were far from routine, though: His liver-enzyme levels were almost four times higher than normal.
He didn't think it was anything to worry about. After all, he'd been told eight years before that those levels would stay high.
His doctor was more concerned. He told Mark his hepatitis non-A, non-B might actually be hepatitis C, which was capable of greater damage than had previously been believed. He wanted Mark to undergo more tests.
But since Mark was feeling fine, he didn't want to go looking for trouble. He ignored the doctor's advice. It wasn't until five months later, when he received a letter from the doctor urging him to come in for testing, that Mark reluctantly agreed. The tests proved he had hepatitis C.
Mark began reading the limited material available about the virus. What little he could learn frightened him. He agreed to a liver biopsy. The results indicated he had fibrosis, a scarring of the liver that's the stage before cirrhosis.
Mark's doctor suggested he contact University Hospital regarding its interferon treatment program.
Over the past fifteen years, liver transplants have become an increasingly acceptable way of treating patients with advanced liver disease.
Colorado was an early pioneer in liver transplants, thanks to the early work of Dr. Thomas Starzl at University Hospital. When Starzl started performing the operation in the Sixties, it was before the development of drugs that would keep the body from rejecting donated organs. As a result, the transplants could buy patients a few more years, but long-term survivors were few. When Starzl left in the mid-Seventies, University's transplant program came to a halt, and Colorado patients in need of new livers had to travel out of state, many of them to the large transplant program at the University of Nebraska.
Everson had been a medical student at Cornell University in the mid-Seventies when hepatitis non-A, non-B was discovered. He had a particular interest in liver disease, which meant he soon was brought face to face with the danger of viral infections.
In 1981 Everson was on University's medical faculty when he became fascinated with one patient's case. The man had what would later be called AIDS. His was one of the first proven cases of blood-transfusion-related AIDS, which at that point was a matter of great debate, particularly between CDC researchers and the blood banks.
Studying this AIDS patient, Everson was struck by the insidious way viral infections could hide for years before emerging as a significant public-health hazard. A decade later he would be reminded of his early thoughts on AIDS when he started considering a new epidemic: hepatitis C.
In the meantime, Everson and Dr. John Vierling, with the blessing of the hospital's administration, created a new liver program. They began testing interferon on patients with advanced liver disease caused by viral infections years before the FDA approved testing the drug.
They were also instrumental in developing a team approach to dealing with liver disease, drawing together everyone from those involved in drug research and patient care to transplant surgeons.
In 1988 doctors Igal Kam and Fritz Karrer reinstituted liver transplants at University. Soon the hospital had one of the best records in the country for long-term survival of transplant patients, as well as an excellent reputation for its work in the field. Vierling went on to Cedar-Sinai Hospital at UCLA, and Dr. Charles Howell, who'd trained under Everson, moved to the University of Maryland as the medical director of its liver department.
University's program didn't focus solely on transplants, though. When the FDA approved interferon for testing a few years ago, Everson went after what research dollars were available from pharmaceutical companies. There was not, and still is not, any federal money for such projects. To run the studies he recruited Claire Reilly, a transplant nurse who'd gotten burned out on the life-and-death struggle and wanted to work on something that might prevent others from reaching that stage.
Interferon is produced naturally in the body and stimulates the production of white cells: the body's defense against viruses. It's the stuff that makes you feel lousy in the first 24 hours of the flu.
There are high hopes for interferon as a treatment for cancer and AIDS. And so far, inteferon has been shown to knock out hepatitis C activity. That's the good news. The bad news is that the virus comes right back when treatment is stopped; only 10 percent of the hepatitis C patients remain in remission.
The effects of such long-term use of high doses of inteferon are unknown, although that issue is currently under study at University Hospital. The flu-like symptoms--nausea, headaches, fatigue--seem to abate over time. A bigger concern is whether, in the immune system's checks and balances, interferon increases white cell productivity but kills other cells that attack invaders such as bacteria, which may be more immediately dangerous.
The drug also seems to cause depression, Reilly says, and patients must be carefully monitored for suicidal tendencies and psychological problems.
Interferon is years away from approval for long-term treatment of hepatitis C patients. The only way for them to get it now is through a research program.
Mike Lamb first heard about hepatitis C in September 1993--from the doctor who told him he had it. He will never know for sure how he was infected, but he keeps thinking back to Vietnam.
After he returned to this country in 1967, Lamb went to college and, like so many others of his generation, experimented with drugs, including a one-time injection of heroin. But as a former medic, he was well aware of the dangers of sharing needles; years later, he still maintains that he used a sterile hypodermic.
By the mid-Eighties Lamb had begun noticing that he didn't have the stamina he once did. Sometimes his feet would swell up and he couldn't wear his ski boots. He'd always stayed in shape, but now no matter how hard he worked out at the gym, he couldn't get rid of his gut. He attributed it all to middle age. How many fortyish guys didn't have a spare tire?
But by that September, he knew the swelling and fatigue were more than age. His Colorado Springs doctor diagnosed his problem as congestive heart failure and sent him to University Hospital for further tests.
Lamb had just walked into University's emergency room when Dr. Roshan Shrestha, a hepatologist recruited by Everson, spotted him. Shrestha took one look and told him he had hepatitis.
Tests indicated that not only did Lamb have hepatitis C but that his liver function was almost nonexistent. The gut he'd been unable to lose was caused by fluids building up in his abdomen.
Shrestha wanted to keep him in the hospital. "You could die," the doctor warned.
"I could have died yesterday," Lamb replied, and checked himself out.
The University doctors put him on a pageful of medications, mostly to help relieve the fluid buildup. There wasn't much else to do, they explained. His disease had progressed far beyond the help of interferon. What he needed was a new liver.
After passing hospital criteria for a transplant that includes financial, physical and psychological issues, Lamb was on the list. All he had to do was wait--and survive.
After Vietnam, the first was comparatively easy. But he almost failed the second test late in spring '94, when he was sitting in the bathtub and began vomiting blood. He would have bled to death if his girlfriend hadn't come home and rushed him to the hospital.
Over that summer, Lamb was in and out of the hospital. Cirrhosis scarring can cause blood in the portal system to back up and leak into the intestinal tract; a patient can actually bleed to death in this manner. In order to avoid such a fate, Lamb had to undergo a TIPS procedure, in which a shunt is inserted between the veins on one side of the liver and the other, in effect creating a bypass. Although the blood no longer passes through the organ's filtration system, it can't back up, either. Lamb's first TIPS eventually scarred over, and he required a second procedure.
Then last fall, just after Halloween, he got a call from Tracy Steinberg, one of University's two transplant coordinators. They had a liver donated by another hepatitis C carrier that might work, she said. Livers of hepatitis C carriers aren't necessarily damaged if the virus hasn't been active, but they can be transplanted only in other hepatitis C patients.
(It's also been debated whether livers from donors not infected with hepatitis C should be given to people with the virus. While it normally would take twenty years or so for an active virus to destroy a healthy liver, there's a catch: To keep the body from rejecting the foreign organ, transplant patients take drugs that suppress the production of white blood cells that would otherwise resist the advances of the virus.)
Lamb shot up to the top of the list. He rushed to the hospital, where he was whisked to a room that already had his nameplate on the door. He showered, and the nurses prepared him for surgery. Then he got the bad news: The donor liver was no good, and the operation was off.
He returned home to his mother's apartment in a Colorado Springs retirement community populated by former military personnel. They live on streets called Patriot Way and Veteran Heights--an irony that isn't lost on Lamb. He survived Vietnam 27 years ago, but it may kill him yet.
Tracy Steinberg can barely sit still in her chair. In a few minutes, she gets to do the best part of her job.
"I get to call someone and say, `Hey, you get to live,'" she says.
Although Steinberg is also a coordinator for University's kidney and pancreas transplants, it is the life-and-death drama of liver transplants that really pulls her into patients' lives.
She's part of a team that includes hepatologists, surgeons, a psychiatrist and a social worker. This is the team that meets to determine who goes on the list for transplants. That's a tough part of the job; saying "Sorry, but no" means someone will die. But there aren't enough livers to keep up with the demand, and the organs must go to the people with the best chance of survival. About forty people are on University's list at any given time; odds are that anywhere from ten to twenty will die before a liver becomes available.
The liver-transplant program, a combined project with Children's Hospital, will perform between fifty and sixty operations this year; only one liver transplant in the state has been done outside University. The hospital could add more staff and do more operations, but while the need is there, the livers aren't.
By the time the transplant candidates reach Steinberg and the rest of the team, the assessment has already been made that they qualify financially for the $155,000, eight-hour procedure. Now they must go through two days of physical and psychological tests. They are screened for alcohol and drug use--no sense giving a liver to someone who'll just destroy it. The team also assesses whether the candidate is likely to survive a wait that could easily stretch to a year.
Since Igal Kam began transplanting livers in 1988, the University/Children's teams have done almost 300 operations. The program has one of the best long-term survival records in the country--which has loosened the purse strings of insurance companies, some of which only recently began covering liver transplants.
The University team monitors patients monthly after their release from the hospital. So far, all hepatitis C transplant patients have shown some signs of the virus attacking their new organs, but only one has needed treatment with interferon.
Steinberg keeps her transplant list with her day and night. Patients are given pagers; their chance at a second life can arrive at any moment.
Next to Claire Reilly's tiny office at University, nine-month-old Todd squirms to get out of his mother's arms.
Cathy is exhausted. Todd would tax the endurance of a young mother, but he was a surprise baby when Cathy was past forty. Still, it's not watching an infant that gets her so tired she just wants to sit in a chair and cry. It's the virus and the interferon she takes as part of Reilly's study.
Cathy hardly thought about the hepatitis C virus in her body until she got pregnant with Todd. That's when blood tests revealed her liver enzymes were skyrocketing.
Three months after she gave birth, Todd was checked for the virus. The tests came back negative. Although the baby had hepatitis C antibodies, he'd received those through his mother's milk. (Whereas with AIDS there's a 50 percent chance that a pregnant woman will pass HIV to her unborn child, there's only a 1 to 5 percent chance with hepatitis C.)
A liver biopsy indicated that Cathy's liver has so far sustained only minimal damage. But recent spikes in her enzyme levels may mean the virus is active again. If her disease progresses, she may require a liver transplant one day.
Cathy is angry that she may not survive to watch her son grow into a man. She blames her former employer, the medical-equipment company, for her disease. If she can find a lawyer to take her case, she plans to sue.
Her fear is that the day will come when she needs a transplant--and she won't be able to pay for it. She has insurance now only because she fudged on the question of whether she's currently being treated for liver disease; she says--even if only to ease her conscience--that she is taking drugs for hepatitis C, not her liver, and even then the drugs are "an experiment, not a treatment." Because of her concerns about insurance, she asks that her real name not be used.
She doesn't look forward to taking interferon for the rest of her life, even if the FDA approves it for long-term use. But even the most optimistic researchers don't see a cure on the horizon. Until then, transplants remain the last resort.
"Every day I wake up worrying," she says. "What if the interferon isn't working? What if in four or five months I need a new liver?
"It's frustrating. All of your life, you grow up thinking that you can go to a doctor and he'll fix you like a mechanic fixes a car. But with this, there's so little they can do."
She strains to pick up Todd. "But if this is what I've got to do to stay alive...I'll take it."
Everson has heard all the complaints about the high cost of liver transplants. He counters with the high cost of caring for patients in the end stages of liver disease.
One man, a young father, received a transplant that cost about $155,000, including pre- and post-operative care. The man will have to continue receiving immune suppression drugs, which also have a cost, but he was out of the hospital in 26 days and is now alive, with his family, working.
Another man, who had no insurance coverage and didn't qualify for Medicaid, did not have a transplant; at the last minute, his liver showed signs of recovery. In the meantime, however, his kidneys and lungs had shut down. His hospital bill was $455,000, Everson says, and he is still in a massive rehabilitation program six months later.
Three more patients paid the ultimate price: They died because no donor livers were available. All three were young; one man was just twenty.
"You could go home tonight and pick up a viral infection and have liver failure," Everson says. "Then what's going to happen? Are you going to have to fight with your insurance company because of the perceived high cost of transplants?
"For all the criticism, the use of technology at the right time is actually more cost-effective. And these are people we're talking about."
The hardest thing for her to accept, Reilly says, is that not everyone will respond to drug treatments.
Mark, for example. The first test didn't help him. Now he's joining a second study, one that will use even heavier doses of interferon.
"It's my only hope," he says. Another biopsy, this one done just two days before Christmas, indicated his fibrosis is more advanced.
"It's getting pretty scary," he says. "It's like having cancer. Something is in my body, destroying my body, at a rapid rate."
What's confusing is that he feels perfectly healthy. He skis and works out daily. Sometimes he gets a little tired, although it's nothing an hour-long nap won't cure.
"But I'm 28, and my life expectancy has been cut in half," he says. Thoughts like that can send him veering wildly between black funks and live-for-the-moment mania. "Just ask my girlfriend," he adds. "She has really put up with a lot."
He doesn't often tell people about his disease, in part because he now works in a health-related field, in part for social reasons. And he asks that his real name not appear in this story.
"I don't want to be labeled as weak or have people freaking out because they're worried they might catch it," he says. "I'm real careful, especially about anyone coming into contact with my blood."
He's quiet for a moment, reflective, then says, "I made a dumb mistake. Now I'm paying for it."
part 2 of 2
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