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HCV Training Workshop. Alan Franciscus Executive Director, Hepatitis C Support Project Editor-in-Chief, HCV Advocate Website www.Hepatitistattoos.org Join me on Twitter & Facebook – HCVAdvocate BLOG: hcvadvocate.blogspot.com/. HCSP STAFF. Irina Gavrilova Clara Maltras Aidan Coffino
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HCV Training Workshop Alan Franciscus Executive Director, Hepatitis C Support Project Editor-in-Chief, HCV Advocate Website www.Hepatitistattoos.org Join me on Twitter & Facebook – HCVAdvocate BLOG: hcvadvocate.blogspot.com/ www.hcvadvocate.org
HCSP STAFF • Irina Gavrilova • Clara Maltras • Aidan Coffino • TorinCoffino • C.D. Mazoff • Lucinda Porter • Rose Christensen • Liz Highleyman • Leslie Hoex • Kate Frye
Numbers Web site average : Average 500,000 hits/week Educational Materials: 300,000 pieces Not counting web site downloads Fact Sheets – 400-500 downloads weekly www.hcvadvocate.org
Effect on HCV Community HCSP Educators: more than 10,000 50 people: In one year outcome is 500,000 people Ultimate goal: Improved education, support and services www.hcvadvocate.org
The Liver www.hcvadvocate.org
About 3 lbs (men) –size of a football • Located in the upper right side – beneath the rib cage • 1.5 quarts of blood flow through it every minute • Chemical factory > 500 functions • Bile-regulates hormones- immune system cells THE LIVER www.hcvadvocate.org
Liver Functions - continued Sugar & fat metabolism & Nutrient storage Stores some vitamins & minerals Fat soluble vitamins: A,D,E, & K Minerals: copper & iron Clotting factors: makes proteins to help the blood clot Filters – breathed in the air, absorbed through the skin and taken by mouth *** Regenerates—grow or shrink*** www.hcvadvocate.org
Healthy People: Healthy people—no more than: 2 alcoholic drinks a day for men; 1 alcoholic drink a day for women HCV – NO ALCOHOL Be cautious about mixing drugs especially with alcohol— acetaminophen (Tylenol) – 600 products Over 56,000 emergency room visits & 500 deaths a year Eat a healthy, balanced diet: www.choosemyplate.gov www.hcvadvocate.org
HEPATITIS Means: Inflammation of the liver Causes: Viruses, toxins, genetic disorders, bacteria and parasites www.hcvadvocate.org
Hepatitis A (HAV) US—New infections: 22,000 (US – 2008) 180, 000 in 1997 Vaccine available since 1995 –2 doses (0 & 6 mos) Estimated 33% have been infected with HAV Resolves (not chronic) Transmission: fecal/oral www.hcvadvocate.org
HEPATITIS B (HBV) US - 38,000 new infections (CDC – 2008) Vaccine available since 1982 - 3 doses (0,1, & 6 months) US chronic: 800,000 –1.4 MILLION Worldwide: 350-400 million US - 3,000 deaths a year Worldwide 660,000 annual deaths www.hcvadvocate.org
HBV Transmission Blood borne –can live outside the body for at least 7 days Highly infectious in semen and vaginal secretions-50% - sexual transmission Sharing needles to inject drugs Needle stick and blood exposure accidents Sharing personal items Mother-to-child transmission www.hcvadvocate.org
HBV Prevention Get vaccinated Do not share needles or works Safer sex Standard safety precautions Do not share personal items HBV infected mother to child intervention www.hcvadvocate.org
Chronic HBV Chronic ~5-6% Adults----90% Infants *These drugs are recommended as first line of treatment www.hcvadvocate.org
HCV Transmission / Prevention The hepatitis C virus lives for at least 16 hours, but no longer than 4 days outside the body In syringes up to 63 days www.hcvadvocate.org
Transmission/Prevention Sharing needles and drug preparation tools Blood products & solid organ transplantation before 1992 Clotting factors before inactivation in 1987 Sexual transmission (0-3%) Mother-to-child (~4-5%) Healthcare workers (~2%) Hemodialysis www.hcvadvocate.org
Possible Transmission Routes • Tattoo & piercing* • Personal care salons • Shared household (hygiene) items • Coke/crank straws & crack pipes • 10% of routes can not be identified * Higher in unsafe non-commercial settings: prisons/mental institutions/on the streets/home grown
Little or no data……. • Dental and other procedure before universal precautions • Jet gun injections • Transgender people • Sharing needles and operations
HCV is Not Spread by: Breast feeding Food or water Sharing eating utensils or drinking glasses Sneezing Hugging *Not spread by casual contact* www.hcvadvocate.org
Prevention: Do not share anything: Needles, cookers, cotton, tourniquets, water, etc – Wash hands www.hcvadvocate.org
Prevention - more • Do not share non-injection drug equipment • Coke/crank straws • Crack pipes • Tattoo / Piercing • Sterilization, autoclave, separate ink pot, new needles
Prevention - more Sexual: 0-3%-monogamous partners– counsel Safer sex – additional risk through sex: Multiple partners Coinfection with HIV or HBV Having herpes, lesions, sores, open cuts, wounds Sexually transmitted diseases Mother-to-child www.hcvadvocate.org
More Prevention • Health care workers • blood borne pathogen protection • Razors / toothbrushes covered • Cover all wounds • Transfusions – estimated that less than one per 2 million transfused units of blood tainted with HCV • People with HCV: Do not donate blood, sperm, eggs or organs – EXCEPTIONS…..
HCV Diagnostic Tools Hcv Identified in 1989 Important: Interpretation of test results and decisions about healthcare are a collaboration between a medical provider and a patient www.hcvadvocate.org
Lifecycle • Single stranded RNA virus • Mainly infects liver cells—but also found in other cells of the body • Difficult to culture—complete lifecycle is unknown
Baby Boomers Account for the Majority of HCV Cases in United States Estimated Prevalence by Age Group 1.6 Number With Chronic HCV Infection (millions) 1.4 1.2 1.0 0.8 0.6 0.4 0.2 0 1990+ 1980s <1920 1920s 1970s 1940s 1950s 1930s 1960s Birth Year Group www.hcvadvocate.org
Increased Diagnosis and Treatment The Tipping Point? OraQuick HCV Antibody Test New Antivirals Aged-Based Testing Templates • Finger Prick • Whole Blood Draw • Oral Swab • Results available within 20 minutes • More testing within clinics and mobile sites can lead to increased consultations about care, management and treatment • New HCV Treatments • An HCV protease inhibitor combined with pegylated interferon, plus ribavirin increases the cure rates up to 79% • Higher cure rates will mean more treatment naive and prior non-responders will seek treatment • .Test everyone of a certain age. Pilot programs are being planned in: • New York, • Detroit, MI, • Houston, TX, • Birmingham, AL Your own footer Your Logo
HCV Antibody Tests HCV Elisa III (EIA), CIA: Detects antibodies Signal to cut off ratio = 95% chance true antibody positive Home Access test kit Window period – 2-26 weeks www.hcvadvocate.org
HCV RNA – Viral Load • PCR (polymerase chain reaction) –lowest range • TMA (transcription mediated amplification)—lowest range • DNA (bDNA) assay – highest range • Amount of virus per milliliter of blood • International units • Low – less than 800,000 IU/mL • High –more than 800,000 IU/mL
How is Viral Load Used? Confirm active infection Soft predictor of treatment response Confirm HCV medications are working and dictate treatment duration ***Does Not Correlate with Disease Progression*** www.hcvadvocate.org
Genotype & Quasi-species • Six major genotypes (plus sub-types) • Genotypes numbered 1,2,3,4,5,6, (1a, 1b, etc) • Genotype 1 – 70% of US population with HCV • Genotype 2,3 – 30% of US population with HCV • Quasi-species • High error prone virus – mutates quickly
Liver Tests ALT: a non-specific marker of liver inflammation Not a good test to monitor people with HCV AST, AP, GGT, Bilirubin, platelet, prothrombin time (PT) www.hcvadvocate.org
Liver Biopsy *Measures liver health *Treatment decisions *Benchmark Metavir Scoring System – 0, 1, 2, 3, 4 No activity Severe activity www.hcvadvocate.org
HCV Symptoms, Disease Progression & Management “Living with hcv is often easy, often difficult and sometimes impossible” Peter Mare Latham www.hcvadvocate.org
Future Disease Burden • *Institute of Medicine (IOM) Report – 2010 • **Milliman Report-Annual cost of advanced liver disease to $85 billion in the next two decades and Medicare costs will increase 500%, from $5 billion to $30 billion • ***Aging of the Hepatitis C Virus-Infected Persons in the United States: A Multiple Cohort Model of HCV Prevalence and Disease Progression --Progression to cirrhosis will peak at 1.0 million in 2020 *http://www.iom.edu/Reports/2010/Hepatitis-and-Liver-Cancer-A-National-Strategy-for-Prevention-and-Control-of-Hepatitis-B-and-C.aspx **http://www.milliman.com/expertise/healthcare/publications/rr/pdfs/consequences-hepatitis-c-virus-RR05-18-09.pdf ***GL Davis and colleagues; PMID: 19861128 [PubMed - as supplied by publisher]
Drug Based Therapies Social Stigma Health Policies Housing Support HCV Positive Health Access Mental Health Addiction HAV & HBV Vaccine What may be needed even before considering treatment CAM Ann Shindo www.hcvadvocate.org
Liver Specialists GASTROENTEROLOGIST HEPATOLOGIST THE FUTURE? Primary care, infectious disease specialists and others www.hcvadvocate.org
Acute HCV • Initial or acute infection • Many people have no symptoms • Flu-like—fatigue, nausea, fever, indigestion, loss of appetite, night sweats, jaundice • Lasts up to 6 months • Spontaneous (natural) clearing by gender: • Women ~40% • Men ~19% • Treatment of acute HCV—the majority of people with acute HCV can clear the virus with interferon monotherapy.
Chronic Infection Longer than 6 months Does not mean severe disease progression 55 to 85% become chronic 10 to 25% have serious disease progression over a 10 to 40 year period--disease progression is not linear Fibrosis / Cirrhosis / Steatosis www.hcvadvocate.org
Chronic Symptoms • Fatigue – mild to severe • “Brain Fog” • Flu-like symptoms • Depression • Liver pain • Loss of appetite • Headaches • Gastro problems • And more…. Symptoms don’t necessarily correlate with disease progression with the exception of end-stage liver disease. www.hcvadvocate.org
HCV Infection: Extrahepatic Manifestations • Hematologic • Mixed cryoglobulinemia • Aplastic anemia • Thrombocytopenia • • Non-Hodgkin’s b-cell lymphoma • Salivary • Sialadenitis • Ocular • Corneal ulcer • Uveitis • Dermatologic • Porphyria cutanea tarda • Lichen planus • Cutaneous necrotizing vasculitis • Vascular • Necrotizing vasculitis • Polyarteritis nodosa • Neuromuscular • Weakness/myalgia • Peripheral neuropathy • Arthritis/arthralgia • Renal • Glomerulonephritis • Nephrotic syndrome • Endocrine • Anti-thyroid antibodies • Diabetes mellitus • Autoimmune • Phenomena • CREST syndrome Hadziyannis SJ. J Eur Acad Dermatol Venereol. 1998;10:12-21.
U. S. Statistics: CDC New (acute) infections: 18,000 Total chronic infections: UP TO 3. 9million *Not factored into above: Prisoners, homeless, people in mental institutions www.hcvadvocate.org
Disease Progression • Compensated—extensive scarring, but liver is still working fairly well • Decompensated—very extensive scarring and liver function has become severely compromised • Conditions • Portal Hypertension / Ascites & Edema / Varices / Encephalopathy • Liver Cancer • 3% to 5% of people with chronic HCV will develop liver cancer - after severe fibrosis or cirrhosis • Transplantation: 250,000 to $314,000 – up to $500,000--Annual costs of medications: ~$21,900
Disease Management Lifestyle Changes Avoid alcohol Lowers immune response & HCV treatment response Helps HCV to replicate and mutate Increases level of iron and fat in the liver Avoid or reduce: Cigarette smoking, drugs or any substance that can harm the liver Eat a healthy well balanced diet www.choosemyplate.gov www.hcvadvocate.org
Disease Management Hepatitis A & hepatitis B vaccine Avoid raw & undercooked shellfish HAV / Vibrio vulnificus Exercise Moderation—balance activity with rest www.hcvadvocate.org
SUPPLEMENTS • Avoid high doses of vitamins and supplements • General recommendations: • Vitamin supplement (daily requirements with no iron) • Always check-in with a medical provider
Discrimination & Stigma • Americans with Disabilities Act—allows for certain protections • Call the ADA (800-949-4232) • Social Security Disability • The effect of stigma
Support Groups Informational & emotional One of the few places where people with HCV can connect, advocate, support and learns from peers HCSP support group in a bag Support group manual on web site www.hcvadvocate.org