The Official Voice of Vietnam Veterans of America, Inc. ®
An organization chartered by the U.S. Congress
August 2002
A FEATURE STORYHCVETS.com
A Movement For AwarenessBY JIM BELSHAW
Tricia Lupole thought she was watching her husband die. She was mad and frightened. She saw pain and fear in his face, and there wasn't a thing she could do about it. Gary would get quiet, then clench his fists. Many times the attacks would start there, in his left hand, then up his arm, down his legs, until the pain coursed through him like he was being "electrocuted," she said.They thought his high hepatitis C viral load had caused severe inflammation in the vascular system, creating a neuropathy that caused the nerve endings to throb. But she was no doctor.
They had been to the VA, she said, and found no help. She said her husband had been tested and found to be HCV-positive, but for various medical reasons, the VA didn't think he would be a candidate for treatment. In any case, the VA hadn't notified him that he tested positive.
In 1996, they went to the Mayo Clinic.
"The good news is the treatment worked," she said. "It didn't clear the virus, but it stopped the neuropathy to some point. If it hadn't been for the Mayo Clinic, I think he might have been dead. The VA said go home and suffer. No pain pill, no anything."
Once back home, Tricia thought the time had come to educate herself. She bought a computer.
"It changed everything," she said.
She enrolled in a local community college and earned a degree in information systems with an emphasis on programming. "I realized that if I ever wanted to present this information in a manner that people could understand, I had to learn how to manipulate a computer and the Internet," she said.
She began researching hepatitis C. She found treatment options, she met other people asking the same questions. None of them had any formal training other than suffering from the disease or having spent years with a loved one suffering from it. All of them sought more information.
"I became more and more aware that somebody had to sit down and take the time to organize everything, especially the conditions laid down by the VA when they said we had to prove how Gary got it [HCV]," she said. "When I started researching it, and I found out all the ways you could get it, it was like, what do you mean? You [the VA] need to prove to me how he didn't get it. There were so many ways."
The National Center for Infectious Diseases lists the two highest risk groups for HCV as "Injecting Drug Users" and "Recipients of Clotting Factors Made Before 1987."
Therein, Tricia Lupole and many others say, lies the heart of the stigma.
"It's seen as a drug users’ disease," she said. "It's your fault that you have it. It's 100 percent stigmatized. That's the sad part. It's awful. I've had people treat us totally different once I mentioned my husband has hepatitis C. You talk to other people [with hepatitis C], and it's like they're in the closet. Not only do they suffer in silence, but they have the stigma, too."
She said a new transmission method "is discovered every year" and points to a recent news story about a Long Island, N.Y., cardiac surgeon who may have infected seven patients with hepatitis C. State health officials said they planned to track down and urge testing of up to three thousand patients. The surgeon was tested and found to be HCV-positive.
Last year, at a VA support group meeting, she and Gary sat with a handful of people, one of them a World War II veteran. He was being treated for HCV, but no one in his family knew he was being treated or even that he had the disease.
"I just could not stand it another second," Lupole said. "Everybody calls this a drug disease, and he was too humiliated to tell his family. I immediately left that support group and went home and built www.hcvets.com. It went up last year on July 26."
The website is a comprehensive collection of information on hepatitis C and the families who must contend with it. Lupole said she wanted to let veterans and others with the disease know they were not alone and that if they wanted more information, she would be happy to provide it on the Web page.
With the Web page's enthusiastic reception came suggestions of an even more activist nature: a march in Washington.
"If we didn't do it, nobody else would," she said.
They gathered in Washington on June 23, the numbers of people marching - 93 -not what they hoped for, but the "quality" of its people pleasing Lupole. "I was extremely happy with the march and the quality of the march," she said. "We just didn't get the big backing. We're putting together a Lessons Learned sheet so when we go back next year, we'll remember all this stuff. We're talking about a lot of sick people who have no income because the VA and Social Security deny them. I know they wanted to come, but they couldn't. But it's our first time out, and the support I picked up from this has been wonderful."
While in Washington, they met with numerous elected and governmental officials.
"Some just went through the motions to accommodate us and I was disappointed," she said. "Dr. Deyton [Lawrence Deyton, who directs the VA’s response to AIDS and hepatitis C) was very impressive and he has a genuine concern for veterans."
In a website report on her meeting with Deyton, Lupole wrote: "New guidelines now allow considerations for service exposure and lifestyle choices. He [Deyton] explained to me that if a vet was a medic, had a blood transfusion, was exposed to combat blood or any of the present standards defined, they will now service-connect vets despite high risk. All vets currently denied should re-file now."
Lupole said that on June 18 in Texas, "We got our first service-connected claim. It's a little milestone for us. Some guys are going to get some help now."
And she intends to return to Washington.
"Overall I don't know that I went there thinking I would succeed," she said. "I went to start a campaign of awareness. I live only two hours away. I'll be back."
Goals of Hepatitis C Movement for Awareness
The Hepatitis C Movement for Awareness lists 13 goals on its Internet Web page - www.hcvets.com A brief compilation of those goals follows; more information may be found on the HCVETS Web page.
1. Stop the Spread of HCV through public-awareness campaigns that explain transmission methods of the virus.
2. Increase funding for research and education.
3. Stop the re-use of single-use disposable medical devices.
4. Stop the use of HCV-positive blood as starting material for biological products, including vaccines.
5. Pass public policy based on presumed consent for organ transplant.
6. Social Security to declare HCV a presumed disability.
7. Medicaid to provide current treatment standards for recipients.
8. Awareness campaigns for testing all veterans, especially from the Vietnam and post- Vietnam service eras.
9. Service connection for all veterans with HCV, to include in-service connection for military personnel who test positive during enlistment and for dependents. Notification by the Department of Defense to all veterans subjected to experimental testing to include inoculations with immune serum globulin.
10. Workers compensation laws to provide realistic solutions for work with occupationally acquired HCV.
11. Reform insurance coverage policies to eliminate Good Samaritan Ruling--in life- threatening situation, unless certified in CPR, you cannot assist someone or be disqualified for coverage for exposure to blood-borne pathogens.
12. Provide mandatory HCV education and screening and provide treatment in psychiatric hospitals, juvenile detention homes, and prisons.
13. Investigate the multimillion dollar business of HCV and the deliberate attempts to stifle competition for generic medications.
Norm Seiff: The Inadvertent Warrior
Norm Seiff first noticed the aches and pains five years ago. Within a month of their onset, it took him three hours to get out of bed when he awoke in the morning.
He had just quit his job to start his own company. Health insurance from his previous employer had run out. He couldn't buy more.
"All of a sudden, I couldn't get out of bed," he said.
He went to a VA hospital at the urging of a friend. He said until then the VA never occurred to him as an option. He didn't know he could go to the VA for such a thing.
Treatment began for rheumatoid arthritis. A month later he was tested for hepatitis C. The test result came back positive. Norm Seiff was a "hepper."
"They said that's probably why my rheumatoid arthritis came out when it did,'' he said. "A lot of times hep C will bring autoimmune disease with it. The doctors are 90 percent sure that's what happened to me.''
Along with treatments for pain and the arthritis, he began interferon injections. Three times a week he gave himself shots in the stomach. Then he began rivarin in pill form. The treatments lasted 15 months. In the final three months, he relapsed, the steady decline of his viral load suddenly reversing and skyrocketing. He remembers the treatment being successful in 30-40 percent of patients, but he was not going to be one of them.
"The treatment is compared to going through chemotherapy,'' he said. "You lose hair, you have flu-like symptoms, aches and pains. If you have rheumatoid arthritis along with it, it intensifies everything. I had every symptom of the disease and every side effect of the treatment. I had some that weren't recorded, things you'd hear about at support group meetings. It seemed like at the time I was the only guy with rheumatoid arthritis, but shortly after they diagnosed me, there were two or three others in the same situation.''
Most overwhelming, he said, was the fatigue, the treatment intensifying it in an already exhausted body, the side effects of medications mirroring the disease symptoms.
"Then there's the wonderful insomnia while you have chronic fatigue,'' he said. "You're exhausted to hell and you can't sleep on top of it. Most heppers are up late at night.''
He speaks of "brain fog,'' the inability to concentrate. He cannot read, he cannot sit and watch TV. He walks into a room and forgets why.
"Your irritation level is terrible,'' he said. "I was bedridden four out of five days for two months.''
Then came the depression. It began within the first four months of his 15-month regimen. He had gone through an orientation at the hospital that addressed depression, but when he first began the treatment, no antidepressants were prescribed.
He said that later changed when it became evident that patients were "becoming suicidal.''
"The first time on treatment, I planned my own suicide,'' he said. "I just couldn't take the pain and the aches any more. I was at a point I was going to kill myself. It was only through a support group at Hines [VA Hospital in suburban Chicago] for pain management and depression that I heard a social worker make a statement: Suicide is a permanent solution to a temporary problem. I've repeated it a thousand times since I first heard it.''
He said his reception at the VA hospital was generally good. By the time he checked in to be tested, the VA had seen many veterans with hepatitis C. Seiff said he had heard "horror stories'' from other veterans about hepatitis C cases at VA facilities, but that in recent years those stories had dwindled.
"It was pretty well established by the time I got to the VA hospital,'' he said. "My doctors weren't surprised at anything I said. By the time I got there, the hospital had a good number of people being treated. They'd heard a lot of the things I was telling them.''
He began a second round of treatment in January 2002. In March, he was diagnosed as anemic. A change in medication has helped, but he has lost muscle tone and weight and strength. He had gone three years between treatments, and there were times that had it not been for the rheumatoid arthritis, he said he didn't feel like he was sick.
But the aches and pains returned. The arthritis worsened.
"Sometimes when I go to the bathroom, I don't shut the door because I don't have the strength to twist the doorknob to get out,'' he said. "It's been a very rough time - fatigue, depression - but I'm not suicidal. I just couldn't believe I was going through this all again.''
He met Tricia Lupole, Webmaster of www.hcvets.com and national coordinator of the Hepatitis C Movement for Awareness (HMA) march in an Internet chat room. As they grew to know one another, she suggested an awareness march in Washington, D.C., to bring attention to the plight of veterans with hepatitis C. Initially, they planned it for Nov. 11, but Sept. 11 changed those plans, as it did so many others. On June 23, HMA came to Washington.
"We wanted the march to be a complete solidarity for the people with hepatitis C,'' Seiff said. "I spent the better part of a year contacting veterans and hepatitis organizations. The idea was to get everybody in it together.''
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