The world was in turmoil. Bob was eighteen years old and eager to defend peace for this country during a time of war. He joined the service in 1975, excited about the career that he was about to embark on, one of the best in the world, protecting our country in the U.S. Army.

During Bob’s service he was injured in a jeep explosion while he was transporting ammunition. He remembers yanking himself out of the burning jeep, not knowing if he had his legs with him. There were many surgeries. During the first surgery, Bob received a blood transfusion as a result of the loss of blood during the life threatening accident. He was hospitalized for several months and was originally told that he would not walk again on his leg. Born with stubborn determination, he slowly walked out of the hospital several months later.

Bob has spent several years fighting nightmares and irritability, as well as other issues, along with constant pain from the pins in his hip, back deformities and a missing knee cap. Unknown to him, he was suffering from undiagnosed PTSD from the accident. Twenty-four years after the accident, he was diagnosed but not by the VA. He was pleased to know that there was a reason for the symptoms that he was experiencing. Though he felt that he had a new future with the diagnosis, he was experiencing extreme fatigue, pain in his upper abdomen, nausea, periods of vomiting and a general feeling that all was not well within his body.

He went to the VA Togus hospital in Maine for this. They ran blood tests and said that he had elevated liver levels. Dr. Greenleaf said that, “The liver levels are high but only need to be monitored.” Medical records from the VA later revealed that Dr. Greenleaf received notification from the lab that Bob was HCV positive. The VA notified the state of Maine about this because it is protocol to notify the state with communicable disease. Bob was not notified. Each VA hospital receives $42,000 per year for each Veteran with Hepatitis C. This is to offset their medication costs. Since Bob’s diagnosis was in the VA system, the Togus VA received $42,000/year for the care he wasn’t receiving.

In late 2002, Bob had a kidney stone attack and his wife brought him to the local Emergency room. It was here that the ER doctor asked him if he had been tested for Hepatitis C because he had elevated liver levels. He responded by telling the ER Doctor that he knew he elevated liver levels and they were nothing to worry about according to the VA. The Doctor asked him again to undergo a Hepatitis C test. Bob said that if there was something wrong that he would have known because the service has always taken care of him. It was this statement that suddenly made his wife feel very uncomfortable. She asked the doctor to please run the test. The results were positive for Hepatitis C. With the test positive and his other symptoms, he was scheduled for a liver biopsy. The biopsy revealed that Bob had Cirrhosis. The last stage of liver disease.

A couple of weeks later Bob and his wife returned to the VA in Togus to get his records. They quietly stepped into a room that was the size of a shoebox. The woman handed Bob his records and they stepped into the hall. His wife slowly opened the manila envelope. A few pages into the many, they found the report. A single page showing the positive test for Hepatitis C and the date that it was entered into the VISN system. Over two years prior to that very moment. The shock was overwhelming. Bob believed the VA. They were there to help the people that served their country. How had this happened? How could the central VISN network be giving Togus so much money for his care and he wasn’t even notified that he had the disease? How was it that the State of Maine was notified of his disease and he was not?

He applied for his service connected compensation. His liver disease was the result of Hepatitis C which was contracted from his transfusion. The VA denied his claim. This went back and forth for some time. Congressman Michaud’s office stepped in. Because of the efforts of one woman in that office, Barbara Hayslett, Bob’s claim was approved. Though approved, they granted him the lowest rating possible for his combined conditions. Bob was told that although he qualified for more compensation, it was never granted to anyone. This has not changed.

Bob went on the peg-interferon and ribavirin treatment. It caused him to become violently ill and be hospitalized many times during this treatment. In May of that year, while on treatment and in the hospital for pneumonia, Scott Kazewski, from the VA office, phoned him in the hospital about his claim. Scott explained to Bob that although he was in the final stages of liver disease, his claim was being denied again. “It’s not like you’re missing a limb.” he told Bob. He could live without a limb, but not without his liver. Bob suggested to Scott that they take a limb and replace it with a liver. Bob and his family were devastated.

The medication didn’t work. The Hepatitis C was too strong by this time. Every moment that it is in a person’s body, the disease gets stronger. How much of a better chance would the medication have had at working if it had been given to Bob when he was diagnosed with the disease? Bob was denied the chance to find out.

Bob has been through tests and then more tests. He was granted Fee Based Services thanks to Barbara at Congressman Michaud’s office. This allowed him to seek treatment outside the VA. He could at least get care from someone that he trusted. After several months of trial and error, pain and tests, Bob finally met with a group of Doctor’s at Beth Israel Hospital in Boston. They believe that they are there to help people. It was a blessing. Bob began the lengthy process of testing for a liver transplant. His wife sent in the paperwork to the VA. Suddenly they stopped paying and said that he no longer had Fee based Services and they sent a letter stating that they would not pay for a transplant or any of the tests that went along with it. When Bob’s wife called, the response was, “It’s not cost-effective for us to grant this.” So, once again, Bob was reduced to a dollar sign on a piece of paper.

After this, Bob did receive a letter stating that he had an appointment with the VA Togus for a nurse’s clinic. They want him to drive two and a half hours in each direction to be weighed, have his blood pressure taken and have blood drawn. They do not feel that his situation warrants anything else. (One of the major side effects of the disease is that Bob sleeps up to 16 hours per day.) Experts in the field have said that Bob has critical issues caused from the Cirrhosis resulting from the Chronic Hepatitis C.

Now Bob waits, like a tattered American flag flying in a hurricane. He still declares that he’s proud to be an American. He believes that this is the best country in the world. He firmly believes that his service career benefited the rights, freedoms and liberties of American citizens. He is confused and bewildered by the treatment that he has received from the VA. Bob and his family have decided to focus on his health, regardless of what the VA says. The Hepatitis C has left him with esophageal variceis, watermelon stomach, hepatic encephalopathy, extreme fatigue, and a variety of other disabling conditions. He is now faced with astronomical expenses to pay for his liver transplant, all additional surgeries and a lifetime of medications. His wife and children are always wondering how long he will be with them. They are much too young to have lived through this already. Katie, 14, is trying to raise funds to find a cure. Matthew, age 9, can’t wait for Dad to have more energy after a transplant. Becca, age 7, and wise beyond her years, doesn’t want dad to have to go “far, far away.”

A person joins the service, does his or her job to defend our freedom. Avoiding death or injury, he or she returns safely home to a hero’s welcome. On the other extreme, a serviceman or woman who dies in battle is brought home for burial and honored as a hero. But what of a man or woman who does their job for our country but becomes permanently disabled? That person has become a liability. Even the insurance that their family receives is suddenly different. That person has then begun the real fight of their lives against the very people that vowed to take care of them. Bob is only one of thousands of veterans who are not being treated for this deadly disease.

In January of 2006, Bob was placed on the liver transplant list. Current statistics for long term survival are encouraging. You can help Bob’s family and other service men and women with this disease in several ways:

1. Forward this website to everyone on your distribution list. This needs to be a grassroots effort to get this information to everyone in our country. The veterans need your support. They joined the service to protect this country, now the people of this country are needed to protect them.
2. Donate towards Bob’s liver transplant.
3. Join us for the race. York is beautiful in May. The funds from the race will go for research to find a cure.
4. If you can’t be here for the 6K, send a donation for the research that is necessary to develop the medication that will kill this virus.
5. Send a message to all your senators and congressmen. They need to make sure that the Veterans Administration is not denying life saving medical procedures to our veterans. You vote for them. They need to know where you stand. Every letter and phone call will make a difference.
6. Be in Washington on Memorial Day (2006) to support the veterans with Hepatitis C who are demonstrating for the benefits they deserve. See the links section to view the activities that are planned in Washington.