BY CLAUDIA GARY
It seems so obvious—a no-brainer, really: If one disease is responsible for the majority of liver transplants in the United States, and if liver function tests generally do not reveal that disease, but a simple blood test for it has been available since 1992, then surely that test must be included in standard blood screening protocols. Right?
Wrong. In most cases, the test for hepatitis C is given only if you request it by name.
One Vietnam veteran heard about hep C and requested the test. But his HMO said the test wasn’t covered since he “wasn’t in a risk group.” Because all Vietnam-era veterans are at risk for hepatitis C, he persisted and got the test.
He tested positive, which made him angry. If he had been diagnosed earlier, he could have made lifestyle changes to minimize the liver damage and received treatment for the virus at an earlier stage.
Like many hepatitis C patients, this Vietnam veteran prefers anonymity due to the stigma associated with this disease. He believes he became infected while in service, either from a tattoo or an airgun injector. He doesn’t deal with the VA; but many veterans have reported that the VA presumed they were intravenous drug users unless they proved otherwise—guilty until proven innocent.
In addition to battle-related infections, many veterans were infected with hepatitis C through blood transfusions prior to its identification in 1992. Some were infected through emergency transfusions of unscreened blood. There are also reports that the disease has been spread through medical procedures at VA facilities.
The lack of testing, the long-term lack of information, and the difficulty in establishing a service-connected claim have added to the doubts, mistrust, and frustration that many veterans already feel toward the VA. But there is no time to waste: Every veteran should be tested for hepatitis C.
Although the Vietnam War ended nearly 35 years ago, this particular wound is now taking a serious toll among Vietnam-era veterans. Some who were infected during that war only recently learned of the damage to their livers. Many still do not know.
There have been improvements. Medical treatments have become more effective and easier to tolerate, due to the 2001 introduction of pegylated (long-acting) interferon. Information, too, has become more accessible, as have support groups. In the last ten years, according to Vietnam-era veteran, patient activist, and registered nurse Ron Iams, “We’ve gone from a world where I had to convince doctors that there was a treatment for hepatitis C to a world where physicians in any VA clinic at least know what hep C is about and where to get the latest information.”
At the same time, “We’re seeing an explosion of cases of liver cancer related to hepatitis C,” according to Dr. David Ross, who is the director of Clinical Public Health Programs for the Department of Veterans Affairs. “We have roughly 220,000 veterans who have been exposed to hep C,” he said. “Not all of those patients have chronic hep C, [but] those who do are at risk for cirrhosis and liver cancer.”
Current treatment for hepatitis C includes use of pegylated interferon and ribavirin, which can be highly effective at clearing the virus but also can cause side-effects that make treatment very challenging for many patients. For this reason, support groups and plenty of information are essential.
Dr. Doris Strader is coauthor of the most recent guidelines for medical professionals—“Diagnosis, Management, and Treatment of Hepatitis C: An Update,” published in the April 2009 issue of the journal Hepatology. A gastroenterologist who did her residency at the VA, Dr. Strader said “the VA’s reputation is unparalleled.”
Dr. Ross noted that “the VA’s national hepatitis C program is the largest provider of care to hep C patients, and we’re very proud of the program. We have a link to every clinic in the VA; treatment guidelines that are a model for the country. We are absolutely committed to providing state-of-the-art care to all our patients.”
Dr. Ross described the disease’s long-term effects: “Hepatitis C causes ongoing damage to liver cells. Liver cells die and get replaced by scar tissue—cirrhosis—or they grow back after some are destroyed, and sometimes the attempts to grow back lead to cancer. Both [cancer and cirrhosis] have a high risk of killing the patient. The risks of those things occurring increase the longer the person has been carrying the hepatitis C virus that has been multiplying in the liver. So, it’s in people who were infected 30 or more years ago that we’re starting to see more and more complications.”
The number of veterans exposed to hepatitis C (HCV) who were later diagnosed with liver cancer jumped from about 1,100 to over 2,000—almost double—between 2004 and 2007. “Liver cancer is a very difficult disease to treat,” Ross said. “Besides causing liver failure, liver cancer often will spread in the blood, through the portal vein, to other organs.”
So, what’s the good news?
“First, there are new drugs coming out for hepatitis C,” he said, “and we are hopeful that these will be available within a couple of years.” Among these are protease inhibitors that will be used in combination with other drugs. “The other thing is that we have had some success in attacking some complications of HCV before they weaken people to the point that they can’t tolerate antiviral therapy. Also, new medications such as Telaprevir are showing improved response rates for HCV. There are also some newer treatments for cirrhosis that are helpful.”
In exploring new treatments, careful testing is always essential. Scientists from the Massachusetts Biologic Laboratory of the University of Massachusetts Medical School recently reported on a new antibody that shows promise for neutralizing HCV. But it’s “too early to say what this means,” Dr. Ross said. “The study reported on results in tissue culture and nonhuman primates, and it is common for promising results in animals not to pan out in humans.” He pointed to areas of progress in patient care. It’s now possible to detect liver cancer earlier through semiannual screening. And there are lifestyle changes: “We’re running a very successful program to educate providers about talking to patients about cutting down on alcohol use.”
Blood transfusion, one of the major risk factors for HCV transmission, didn’t take off until the 20th century. People referred to “non-A, non-B” hepatitis until about 20 years ago, when the new virus was identified as the cause of most non-A, non-B hepatitis.
Ron Iams was trained as a registered nurse at Fort Sam Houston during the Vietnam War. The worrisome problem he sees with hepatitis C is “the assumptions of how veterans became infected. The underlying assumption is it’s their own fault. The obvious possibilities for infection—especially those in combat situations in Vietnam, being exposed to blood—are all discounted when it comes to considering [veterans] for compensation for their injury.
“It’s always assumed that they were drug abusers, or some of the highly charged negative ways that one can become infected,” Iams said. “It’s been an uphill battle for veterans to get past those assumptions. A lot of the things that we’ve gotten past with HIV, we haven’t with HCV.”
Iams’s own case is extremely rare: He knows exactly how and when he became infected with HCV. This, he said, is “one of the reasons that I have always been a ‘preferred patient’ in clinical trials and various studies: We know the very date that I was infected, drawing blood from a Vietnam returnee who had hepatitis [in 1975]. I stuck myself in the thumb, and then I came down with hepatitis and was a patient in the hospital where I was a nurse. But I didn’t get better and kept having relapses.”
His liver was biopsied; his hepatitis was considered to be “non-A, non-B.” For more than two decades, he didn’t give the disease much thought. He didn’t connect it with the extreme tiredness and other symptoms that were later attributed to extensive liver damage. Prior to joining a clinical trial with interferon nearly 24 years later, he had a second biopsy to assess his liver damage. Iams completed his interferon treatment in 1999, and his blood tests have been clear of the virus since then.
He has spent much of the past decade helping other veterans diagnosed with HCV. “We have groups now like the Community Advisory Board [CAB]—a board of veterans who, like myself, were treated for hepatitis C and are now used as sounding boards by the VA.” The changes have been gratifying: “Every time they add something to the treatment regimen, the success rate goes up.” Iams also sees improvements in “bringing all the providers up to speed.”
His work with the CAB has included putting together “training materials that are available for people who are trying to start peer counseling and peer support groups.” But the main challenge, he said, “is locating individuals who are willing to give their time and a lot of effort to get this off the ground.” For those who would like to help, he recommends contacting the CAB, which is independent of the VA.
“None of us are employees of the VA,” Iams said, although “the original members were all nominated by the care staff as people who were seen as advocates for the veterans or were already involved in other advocacy areas. We were the loudmouths.”
When asked how veterans diagnosed with HCV can improve their claim status with the VA, Iams said they “need to get hold of a service organization such as VVA soon,” although they do not have to be a member of that organization. “At the larger VA facilities, you can meet with [service representatives] and they will help shepherd you through the very long, arduous process of applying for compensation,” Iams said, adding that “it’s almost always denied at first, and a lot of people are never able to get beyond that hurdle.” Persistence and support are essential, just as they are in treating the disease.
Actor and author Christopher Kennedy Lawford and Dr. Diana Sylvestre recently wrote the book Healing Hepatitis C. Although he is not a veteran—and although he has acknowledged being “very lucky” compared to many hepatitis C patients—Lawford noted that he supports “integrating the screening [for hepatitis C] into our primary care process,” and expressed enthusiasm that the disease is getting more attention.
What About Liver Transplants?
For those whose HCV infection is not cleared by medication, transplants are an option, though a problematic one. “The overriding factor in liver transplants is a shortage of organs,” Dr. Ross said. “Right now, there are about 16,000 people on the waiting list nationally for livers. In 2008, there were 6,300 liver transplants in this country; the VA did between 100 and 120. So we do roughly 2 percent of the total. We always have more patients on the waiting list in the VA than there are livers.”
The survival rate after transplants, Dr. Ross said, is about 82 percent. While the HCV in a patient’s system will reinfect the new liver, “they definitely can be treated for HCV after transplant,” although “it’s a little bit tricky because they are getting drugs that suppress the immune system.”
Lawford recalled that the people he knows who “postponed treatment or decided against it, and were later confronted with the need to get a transplant, wished they had not postponed or refused to get treatment. Liver transplant is not a good alternative. The people I know who have gone down that road are not happy about it.”
Those diagnosed with hepatitis C must make lifestyle changes. Cutting down on alcohol—if not eliminating it—is essential to healing the liver. There are other items to avoid (fat and Tylenol, for example), but for the most part, hep C patients need to adhere to basic, commonsense good nutrition and health. Nontraditional treatments generally are not recommended.
“The average patient with HCV has used some type of nontraditional treatment,” said Dr. Strader, “but it’s important that they let their physicians know, so that we can make sure there are no adverse effects that would impact their treatment.”
Another problem is the lack of regulation among herbal and other substances. Above all, Dr. Strader urges patients to “make sure they get regular follow-up with either their primary-care physician or a hepatologist, so that they can keep up with treatments and ways of transmission of the virus, and become available for any studies if they are interested in participating.”
Dr. Ross pointed out that “it’s very helpful for patients to be proactive. First off, they want to make sure the infection is confirmed. If a hundred people get exposed to HCV, about fifteen will clear the virus on their own. It’s the other eighty-five we’re concerned about.” For those who do have chronic HCV, he said, “the most important things are to decrease exposure to things like alcohol, and to get referred to a hepatitis class and evaluation at the local VA.”
When asked whether those fifteen who have cleared the virus are contagious, Dr. Ross demurred. “The American Association of Blood Banks will not approve donation from anyone who has ever been exposed to HCV,” he said. Transmission, then, while much less likely, is still considered possible.
At present, there is no cure for HCV. But with appropriate care and a healthy lifestyle, life can still be good.
-The American Association for the Study of Liver Diseases practice guidelines are updated annually and available online at www.aasld.org
The latest edition, by Marc G. Ghany, Doris B. Strader, David L. Thomas, and Leonard B. Seeff, was published in April 2009.