Houston Chronicle

In July 1998, Terry Baker and several of his buddies attended a leadership conference for Vietnam veterans in Savannah, Ga. They noticed a booth hosted by a Washington health consulting firm offering free hepatitis C tests.

"My buddies said to me, "We will (be tested) if you will,"' recalled Baker, who lives in Middletown, Del. "And I was the one who ended up testing positive."

It turned out that 9 percent of the 122 veterans tested at the conference were infected with the potentially lethal liver virus, said Audrey Wright Spolarich, a principal in the consulting firm, Health Policy Analysts.

It was among the first indications that the infection rate among veterans is far higher than the estimated 1.8 percent infection rate in the general U.S. population.

Subsequent studies confirmed that hepatitis C is a particularly serious problem in the veteran community. In March, a one-day study of 26,000 patients at Department of Veterans Affairs medical facilities found that about 8 percent were infected. And a study presented this week at a medical conference in Dallas found that 19 percent of 791 veterans using the San Francisco Veterans Affairs hospital were infected.

With Veterans Day here, veterans' advocates around the country are struggling to promote awareness of hepatitis C and to help veterans obtain the medical care and social support that they need.

"When I was first diagnosed, I was devastated," said Baker, 47. "The doom and gloom comes over you. I've always been a healthy individual and tried to take care of myself, and boom, I have a serious illness.

"Then I realized that more and more of us were coming down with the illness — enormous numbers."

That realization prompted Baker to form an organization called Veterans Aimed Toward Awareness, which is working with public officials and advocacy groups to educate veterans about the disease and to encourage those who are at risk to be tested.

"It's a crisis out there right now," said Ed Wendt, a Houston journalist and Army veteran who learned in 1994 that he had hepatitis C. Wendt, who later was diagnosed with liver cancer, is awaiting a liver transplant.

Wendt said he was able to obtain the treatment he needed at the Department of Veterans Affairs Medical Center in Houston, but he said many other veterans have had difficulty working through the agency's bureaucracy.

"Sadly," he said, "a lot of veterans are not aware of how to fight the system like I have done."

Moreover, it appears that many veterans are unaware that they are at risk.

In a recent survey of 500 veterans by Baker's organization, 74.8 percent said they were "not very" or "not at all" concerned about their risk for having contracted the hepatitis C virus. More than two-thirds (67.5 percent) said they were unfamiliar with the disease, and 58.3 percent said they were unlikely to be tested.

Baker said his group is working with the American Liver Foundation and other organizations to develop public service announcements, brochures and other tools to educate veterans about hepatitis C.

The reasons for the high infection rates among veterans are unclear.

Alan Brownstein, president of the American Liver Foundation, said little research has been conducted on the question. Some experts, he said, believe that battlefield blood exposure may be a factor, particularly among Vietnam-era veterans.

Hepatitis C is spread through contact with infected blood. A major source of infection is blood transfusions before 1992, when a reliable test was instituted to screen infected blood from the national blood supply.

Research by Veterans Aimed Toward Awareness shows that field hospitals performed more than 364,900 blood transfusions on U.S. personnel in Vietnam. In addition, soldiers, medics and nurses were exposed to blood while caring for the wounded.

In January, the Department of Veterans Affairs established two national "centers of excellence" for hepatitis C treatment, one in San Francisco and the other in Miami. The agency also issued treatment guidelines for the disease, which generally follow the standard of care developed by the Centers for Disease Control and Prevention and the National Institutes of Health.

Prior to the guidelines, Baker said, veterans who sought care at VA facilities often were told that they had "nothing to worry about — go home and we'll keep an eye on it."

Even now, he said, "each facility sometimes decides to make its own rules" despite the national guidelines.

For example, Baker said, pharmacists at some VA facilities have been unwilling to pay for the two costly drugs that, taken in combination, are the most effective treatment for hepatitis C. As a result, he said, veterans served by those facilities don't have access to the treatment.

In Houston, Dr. B.S. Anand, a physician who treats veterans with hepatitis C at the Department of Veterans Affairs Medical Center, said he believes the hospital has sufficient staff and budget to meet the need.

"The VA has now provided us with extra help in terms of personnel, and we have the latest tests to diagnose the viral load, to get a sense of how much virus is circulating in the blood," he said.

Wolf Biedenfeld, president of the Houston chapter of the Vietnam Veterans of America, said many veterans face social problems that can compromise their ability to deal with hepatitis C or other illnesses.

For example, he said, a veteran suffering from post-traumatic stress disorder might be withdrawn and isolated, making it less likely that he would seek medical attention.

Such personal issues also can complicate a veteran's attempt to demonstrate that his hepatitis C infection is service-related, which often is necessary to obtain free health care and disability benefits, he said.

A veteran who has been homeless or in prison, or who has been an injection drug user, has other risk factors for infection that the government can cite as a reason for denying a service connection, Biedenfeld said.

"The government's general position is: "If we can find another reason (for infection), we'll find it,"' Biedenfeld said.

Legislation introduced in Congress this year would make it easier for infected veterans to establish a service connection for hepatitis C. Biedenfeld, however, said the bill is languishing.

"Congress is in no hurry to create a new financial liability for the government," he said.

Dave Lackey, a spokesman for Sen. Olympia Snowe, a Maine Republican who sponsored the bill, said the measure has not been scheduled for a hearing. He said Snowe is working to build support among her colleagues on an issue that many know little about.

"These things take time," Lackey said. Baker, meanwhile, said he has overcome his personal hepatitis C crisis — treatment with the drug combination cleared the virus from his system. But he continues to speak about the issue around the country and to lobby federal officials for better services.

"There are American heroes who are dying, even as we speak, from this illness, and everyone is hemming and hawing about what they should be doing," he said.

Copyright 1999 The Houston Chronicle. All rights reserved.