to United States House Of Representatives:
to United States Senate:
of State Hepatitis C Coordinators
Tips – Letters of Support
Writing a letter of support is relatively simple. It is important
to remember that legislative assistants receive thousands
of letters and only have a fraction of time to read them,
so it is very important that the letter is clear, concise
and to the point.
A sample Media Kit that we have put together to help you make your community more aware about hepatitis C
Download a sample letter to help you get started.
Action Alert: Make Hepatitis The Priority in Congress!
Action Alert: Take Two Actions to Support the Viral Hepatitis Testing Act!
Action Alert: Urge Your Senator to Ensure Our Nation Is Properly Funding Viral Hepatitis Programs
Action Alert: Urge Your House Representative To Sign Important Dear Colleague Letter
Action Alert: Senate hearing scheduled for the new Maryland Hepatitis C testing bill – Feb 26, 2014
Action Alert: AHF: Gilead's $1,000 Hepatitis C Pill Target of SF, NYC Protests Feb.12th
Sample Media Kit
Below is a sample Media Kit that we have put together to help you make your community more aware about hepatitis C. There are also links below to actual press releases so you can see what they look like and use them as guidelines for your own.
All you need to is replace the content of the advisory (press releases) with your information. You may use our Factsheet and Glossary, or replace them with information you feel is more relevant to your purposes.
In the samples there are some important elements:
1. Banner: Media Advisory
2. Date of Media Release
4. The Advisory Itself, for example a Newspaper Release, with a title, and a subtitle
5. Note that you may wish to bold the why, where, when, and who sections to make them stand out
We included the Factsheet and the Glossary because the general public has not been educated about hepatitis C.
Here is an example of an Event Listing
March 26, 2013
||HCV Training Workshop: Houston, TX
||Kashmere Multi-Service Center Auditorium 4802 Lockwood Drive Houston, Texas 77026
||For more information on registration click here
Here are some examples of actual press releases:
Action Alert - Urge the USPSTF to Change Its Hepatitis C Testing Recommendation A Step-By-Step Guide to Making Public Comment
Dec 5, 2012
Action Alert - Screening for Hepatitis C Virus Infection in Adults: U.S. Preventive Services Task Force Recommendation Statement
Nov 26, 2012
FACT SHEET: HEPATITIS C
• Hepatitis C (HCV) is a potentially life-threatening infection of the liver transmitted by blood-to-blood contact with infected blood and blood products. The U.S. Government estimates that approximately 4 million Americans were infected with HCV of whom 3.2 million are chronically infected.
• An estimated 15,000 Americans die annually from complications related to HCV.
• HCV is the leading reason for liver transplants in the U.S. It is estimated that 5% of Americans infected with hepatitis C will experience liver disease serious enough to require a liver transplant.
• Hepatitis C is often described as a “silent epidemic” because people infected with hepatitis C usually show no symptoms, although they can still be infected and transmit the virus to others. It is estimated that only 25% of hepatitis C cases have been diagnosed. When symptoms are present they can include fatigue, flu-like symptoms, muscle and joint pain and, rarely, jaundice.
• The window period (the period of time between initial exposure and the development of symptoms) of hepatitis C is 2 – 26 weeks.
• There are many strains of hepatitis C, called genotypes. The most common genotypes in the U.S. are genotype 1 (70%) followed by genotypes 2 and 3 (30%). Genotype information is important because it dictates how long to be treated with current HCV medications and what medications to use.
• Hepatitis C infection is characterized by inflammation of the liver and may lead to progressive liver disease resulting in cirrhosis, liver cancer and death. The most common symptoms include fatigue, weakness, loss of appetite, and nausea.
• The most common transmission routes are sharing HCV-infected needles and drug preparation tools, and receiving blood or blood products prior to 1992. Sexual transmission is uncommon between stable monogamous sexual partners. Mother-to-child transmission occurs ~4-5% of the time. Less common but possible transmission routes include tattooing, piercing and sharing during nasal cocaine/crank use.
• For about 1 in 10 people with hepatitis C, it is not known how they became infected.
• Hepatitis C can be identified through blood tests that detect the presence of antibodies to hepatitis C. If these tests are positive a hepatitis C viral load test is given to confirm the presence of hepatitis C in the blood.
• There is no vaccine for hepatitis C.
• The current standard of care for treating hepatitis C is a combination of pegylated interferon and ribavirin for genotypes 2 and 3 and pegylated interferon, ribavirin and an HCV protease inhibitor for people with genotype 1. The goals of anti-HCV therapy are viral elimination (viral cure), improved liver health, slowing down or stopping of disease progression, and improvement in symptoms and quality of life.
• Current HCV medications can eliminate the virus—called a viral cure—in up to about 80% of people treated with hepatitis C medications.
Hepatitis C Glossary
ACUTE: a rapid-onset, short-term initial stage of a disease.
ACUTE HEPATITIS: the initial stage of viral hepatitis following infection. In HCV, acute hepatitis refers to the first six months of infection.
ANEMIA: reduced number of red blood cells or reduced ability of blood to carry oxygen. There are several types of anemia, all with different causes. Symptoms may include fatigue, weakness, pale skin, and difficulty breathing.
ANTIBODY: a protein produced by the immune system when a foreign substance enters the body. The presence of antibodies is an indicator of a past or possibly current infection. HCV antibodies are written as anti-HCV. The test for anti-HCV must be followed by other laboratory tests in order to confirm the diagnosis. The antibody test alone is not sufficient to make a diagnosis of chronic HCV infection.
ALANINE AMINOTRANSFERASE abbreviation for ALT: ALT is an enzyme produced inside liver cells. It is frequently elevated in people with chronic HCV infection. Serum ALT levels are measured using a common blood test.
ASYMPTOMATIC: not feeling or showing outward symptoms or signs of a disease.
BIOPSY: a procedure in which a sample of cells or tissue is taken for examination in a laboratory. In HCV, liver biopsies are used to monitor the health of the liver.
BLOOD BORNE: a pathogen that is transmitted through direct blood-to-blood contact.
CHRONIC LIVER DISEASE: a long-term or persistent liver disease that may lead to progressive destruction of the liver.
CIRRHOSIS: a type of liver damage in which normal liver cells are replaced with scar tissue. In cirrhosis, liver function is severely impaired and scar tissue interferes with normal blood flow through the liver.
COINFECTED: refers to infection with two or more different disease-causing organisms.
EFFICACY: effectiveness; the ability to achieve a desired effect.
FIBROSIS: liver damage that involves the development of fibrous scar tissue.
FULMINANT HEPATITIS: a severe, life-threatening form of hepatitis.
GASTROENTEROLOGY: the medical specialty that deals with the digestive system; a gastroenterologist treats digestive diseases.
GENOTYPE: genetic variation in the structure of HCV. There are six major genotypes, designated by the numbers 1 through 6.
HCV: acronym for the hepatitis C virus.
HCV Protease inhibitors: Boceprevir and telaprevir are the two HCV protease inhibitors used in combination with pegylated interferon and ribavirin that are approved by the Food and Drug Administration (FDA) approved to treat HCV genotype 1 infection.
HCV RNA: the genetic material of the hepatitis C virus. HCV is a single-stranded ribonucleic acid (RNA) virus.
HEMOPHILIA: a hereditary disease in which a person does not produce sufficient blood clotting factors and is prone to prolonged bleeding.
HEPATIC: relating to the liver.
HEPATITIS: inflammation of the liver. Hepatitis may have various causes, including viruses, toxins, and heavy alcohol consumption.
HEPATOCELLULAR CARCINOMA (HCC): a type of primary liver cancer seen in some people with long-term liver damage due to chronic hepatitis C or hepatitis B.
HEPATOLOGY: the medical specialty that deals with the liver; a hepatologist treats liver disease.
HEPATOTOXICITY: toxic or poisonous to the liver.
HISTOLOGICAL: refers to bodily tissue. In HCV, histological improvement means improvement in liver tissue, either reduced inflammation or reduced fibrosis.
INTERFERON: a naturally occurring protein in the human body produced by the immune system. Interferon interferes with viral replication. Genetically engineered products based on the natural protein have been developed by several pharmaceutical companies, and are approved for the treatment of chronic HCV infection.
JAUNDICE: yellowing of the skin and whites of the eyes due to high bilirubin levels in the blood. Jaundice is often a sign of liver damage or gallbladder disease.
LIVER: a large organ on the upper right side of the abdomen that plays an important role in the metabolism of sugars and fats, synthesizes several proteins, and filters toxins from the blood.
NON-NUCLEOSIDE REVERSE TRANSCRIPTASE INHIBITOR (NNRTI): an antiviral drug that suppresses viral replication by interfering with the action of the reverse transcriptase enzyme. Ribavirin is an NNRTI.
PEGYLATED INTERFERON: a form of interferon that has a long half-life in the body and can be injected less often (typically once per week). Pegylated interferon is approved for the treatment of HCV.
RIBAVIRIN: an antiviral medication that is used in combination with interferon for the treatment of chronic HCV infection.
RIBONUCLEIC ACID (RNA): a single-stranded nucleic acid that encodes genetic information. The presence of viral RNA in the blood indicates that a virus is actively replicating. Hepatitis C is an RNA virus.
SUBCUTANEOUS (SQ): underneath the skin; usually refers to a drug injected under the skin.
SUSTAINED RESPONDER (SVR): a person who maintains a long-term response to treatment. In HCV, a sustained responder has a long-term beneficial result from HCV treatment (non-detectable HCV RNA) that persists after treatment has been stopped (six months is the generally accepted time interval).
TRANSMISSION: spread of a pathogenic organism from one person to another.
TRANSPLANT: surgical transfer of an organ from one person to another.
VIRAL LOAD: the amount of virus (i.e., the HCV RNA level) that can be measured, usually in the blood.
VIRUS: a microscopic infectious particle that invades a living organism and makes copies of itself (viral replication).
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