Veterans With Hepatitis C
HEPATITIS C: ARE YOU CONFUSED?
Understanding the terms related to Hepatitis C can be complex. Here are some of the more common terms that are used to discuss Hepatitis C infection:
ALT: (Alanine aminotransferase) an enzyme released from liver cells. A blood test that reveals ALT levels above normal may indicate liver damage.
ANTI-HCV: (antibody to hepatitis C virus) The antibody directed against the Hepatitus C virus (HCV). Its presence in the bloodstream often indicates HCV infection. This antibody has not been shown to protect people against Hepatitis C.
CIRRHOSIS: The result of long-standing inflammation and damage in the liver, which can be caused by Hepatitis C infection or alcoholism. It is characterized by excess formation of scar tissue, also called fibrosis, and results in the losss of liver cells and decreased flow of blood through the liver.
GENOTYPE: A pattern of genetic information that is unique to a group of organisms or viruses. If you have Hepatitis C, knowing your genotype will help your doctor decide on the best approach to treatment.
HEPATITIS: Inflammation of the liver caused by infection or toxic agents.
HAV: Hepatitis A is a disease caused by the Hepatitis A virus (HAV) that is usually transmitted through contact with an infected person, eating raw shellfish (clams) or through feces when changing diapers or having sex. If you have Hepatitis C - get vaccinated against HAV.
HBV: Hepatitis B is a disease caused by the Hepatitis B virus (HBV), which is transmitted by contact with infected blood or other infected bodily fluids (as during sexual intercourse). Hepatitis B may progress to chronic hepatitis and can be fatal. If you have Hepatitis C - get vaccinated against HBV.
HCV: Hepatitis C is a disease caused by the Hepatitis C virus (HCV) that is usually trasmitted by sharing needles to inject drugs, blood transfusion, or exposure to blood or blood products. Hepatitis C was previously known as non-A, non-B Hepatitis. In 75-85% of the case, Hepatitis C may progress to chronic hepatitis and can be fatal.
HCV RNA: (hepatitis C virus ribonucleic acid): A fragment of the Hepatitis C virus (HCV). These can be detected using "bDNA assay" and "PCR" tests to determine the level of Hepatitis C virus present in the blood. See viral load.
HCC: (hepatocellular carcinoma) A malignant tumor of the liver or liver cancer.
INTERFERON: A protein that is in the body to protect against infection. Many different cells, including liver cells, produce natural interferon. Interferon also can be produced artificially through biotechnology.
LIVER: The largest organ in the body. The liver has many fuctions: production of protein and bile, storing sugar, and breaking down and excreting toxins and medications.
LIVER BIOPSY: The removal of a small piece of tissue from the liver using a special needle. The tissue is examined under the microscope to look for the presence of liver damage or inflammation.
PLATELETS: Circulating cells derived from the bone marrow and essential for blood clotting. A low or high count may indicate liver damage.
RISK FACTORS: Certain behaviors such as injection drug use or blood transfusions, which can lead to infection with the Hepatitis C.
REMISSION: Partial or complete disappearance of the symptoms of the disease. Remission may happen independantly or occur as a result of a medical treatment.
VIRAL LOAD or VIRAL LOAD TEST: The measurement of the amount of a given virus in the bloodstream. The amount of HCV RNA is measured. The goal of Hepatitus C treatment is to lower a patient's viral load to undetectable levels.
--Marian Kerbleski, RNHepatitus C Coordinator, San Francisco VA Medical Center
SUPPORT FOR VETERANS WITH HEPATITIS C
Hepatitis C has affected over 4 million people in the United States and impacts countless family members, friends and relatives. Support groups play an integral and increasingly important role in the overall treatment and care of those affected by this disease. Support group participants gain knowledge from speakers, facilitators and other patients. They develop and improve coping skills. They gain increased confidence and acceptance of their disease through the knowledge that they share a common struggle. Finally, patients and their families gain support.
Because of the stigma attached to some liver diseases, patients may feel isolated and reluctant to disclose their health status to those around them. Support groups provide a "safe" and supportive environment for patients and families to deal with the impact of their liver disease.
Support groups are often tailored to meet specific needs of the group's participants. Generally, the groupsfocus on a specific liver disease such as Hepatitis C, or are for those dealing with issues surrounding liver transplantation. The benefit of attending such a defined group is that it ensures that you will be among people who are dealing with similar issues. Having the common connection between the support group members can increase the comfort levels, and foster an environment for sharing and expressing concerns.
The emotional support and connections found by attending a support group can be a viral part of disease management.
Veterans are also a specialized group. Support groups geared specifically for veterans can address the unique issues that they regularly face, whether it's military experience, employment issues, medical care at the Veterans Administration or at private health care providers.
If there isn't a support group in your area that is targeted for veterans with Hepatitis C, it is possible to start one yourself. Most often, support groups get started by one or two people coming together out of their need for support. The important thing to remember is that you don't have to go it alone. Starting a support group takes time and effort, so finding someone to help can ease the burden.
An organization meeting (or "call to action") can be held to see how many other people are interested in participating in the support group, and from there the group will determine when and how often it will meet.
The emotional support and connection to peers that is found by attending a support group is a vital part of disease management. If you would like to find a support group in your area, or start a support group, contact the American Liver Foundation at 1-888-4HEP-USA or info@liverfoundation.org for more detailed information.
You do not have to go it alone. Get the support you need.
--Jill Zarensky, Field Development ManagerAmerican Liver Foundation
Suggestions for Hepatitis C Resource Centers:
VA SUPPORT GROUPS
The Department of Veterans Affairs National Hepatitis C Program and the VA Hepatitis C Resource Centers (HCRC's) are developing a guide to assist health care staff at VA facilities, Vet Centers and other organizations to start support groups for veterans with Hepatitis C. Because the VA is such a large system, needs may differ regionally, so it is important to assess veterans' needs and get their input into what type of a group they want. The groups' needs may change over time so it is critical to remain open, in-touch with the participants, and willing to change formats, times or locations as the group grows and develops. The following suggestions were gathered from VA staff in different parts of the country and might be used when starting a support group.
- Allow up to 3 months for planning, getting the word out to potential patients, and coordinating with other efforts in which patients may participate.
- Use the first meeting to establish the importance of confidentiality and anonymity of the group and to decide if it will be open or closed to spouses, family members or friends.
- Ask support group members how they want to benefit from the group, including the format and topics. Draft a mission statement with group members to help ensure their interests and needs are met.
- Realize that support groups can assume several different formats, from unstructured discussion to hightly structured didactic sessions with designated speakers considered experts on a particular topic. One group at an HCRC, for example, announces topics for its support group in advance and facilitates the meeting by a psychologist and social worker. At another HCRC, the group cofacilitated by a social worker and a veteran with Hepatitis C.
- Be prepared to discuss a variety of topics. The groups convened by one HCRC have asked to discuss fatigue, mood, diet/nutrition, benefits, treatment approaches, lab results, and alternative and complementary medicine.
- Be flexible about logistics. Location and time of day can make a big difference in attendance, and different approaches may work in different settings. It is important to ask the members about their preferences. A support group can be held at the end of a clinic day or at lunchtime before clinic. One of the HCRC support groups indicated a preference for monthly evening meetings. Depending on where participants live, there may be a geographically central location or the location could be rotated.
- Make use of two simple interventions that can improve support group attendance: provide food and refreshments at meetings, and make reminder calls to veterans a few days prior to the group. If food is provided, it should include items consistent with dietary guidelines recommended by providers (e.g., fruit juice instead of caffeine only beverages) and soft on the palate for patients who may experience mouth tenderness from interferon treatment (e.g., bananas).
With further input from patients and new developments for managing infection, Hepatitus C support groups will continue to evolve, providing an important resource for patients and improving health care outcomes.
National Clinical Coordinator, VA National Hepatitis C Program
Legislative Update
At the beginning of the 108th Congress several bills were reintroduced that relate to veterans health care and Hepatitis C.
On January 7, 2003 Representative Rodney Frelinghuysen (R-NJ) reintroduced the Veterans Comprehensive Hepatitis C Health Care Act (HR 73). The purpose of this legislation is to establish a comprehensive program for testing and treatment of Hepatitis C, by requiring the VA to test every Vietnam era veteran, or any veteran who requests the test. For any veteran who tests positive, the bill further requires the Secretary to provide follow up tests and to provide treatment as medically appropriate. HR 73 currently has 19 cosponsors.
On January 27, 2003 Representatives Stephen Lynch (D-MA) and Jack Quinn (R-NY) reintroduced the Liver Research Enhancement Act (HR 371). The purpose of this legislation is to provide the dedicated scientific leadership necessary to create an action plan for liver disease research, and to help assure that the scientific opportunities identified by the Liver Disease Research Action Plan are adequately funded. The coordination and focus this Center will provide for liver disease research and help increase our ability to find better treatments and cures for the millions of Americans with liver diseases.
On February 13, 2003 The House and Senate completed action on the FY 2003 appropriations omnibus bill, which provided over $23.8 billion for the Veterans Health Administration Medical Care account, $2.5 billon more than the previous year, and $1.1 billion more than the Administration's request. This year, for FY 2004, the Administration has requested $25.4 billion for this account.