Obstacles to Hep C TREATMENT: The patient’s point of view

1. Obstacles to Hep C TREATMENT: The patient’s point of view Maxime Journiac : ANRS-ISVHLD Paris July 5 2006

2. Background • 30 to 35% of HIV French Positive patients are also co-infected with Hep C and/or Hep B/Delta which represent 35 to 40 000 persons • More than 40% of French co-infected patients seen in hospital are F3 or F4 and a growing number is developping a severe cirhosis and /or liver cancer • End Stage Liver Disease is the first cause of death amongst co-infected French patients Maxime Journiac : ANRS-ISVHLD Paris July 5 2006

3. Obstacles to a first treatment • Lack of Information about the treatment, the adverse events • Lack of testing • Fear of liver biopsy • Long delay to access a specialist • Negative representation of Hep C treatment • Population with differentpriorities and special needs (Alcohol and dug users, Prisonners, Homeless People, Undocumented workers and Migrants) Maxime Journiac : ANRS-ISVHLD Paris July 5 2006

4. Obstacles to a 2nd or more treatment (1) • Difficult experience with the first treatment (fatigue, depression, irritability, lack of concentration, skin and mucosal problems, weight loss, sexual problems, blood and other abnormalities,…) • Unsufficient global care • Poor tolerance to treatment (poor quality of life…) • Poor adverse events management • Psycho social difficulties (lack of governementalsocial programmes) Maxime Journiac : ANRS-ISVHLD Paris July 5 2006

5. Obstacles to a 2nd or more treatment (2) • All treatments include Peg IFN and Ribavirine which are particularly toxic to co-infected patients • Development of complications over time • In spite of viral clearance, cirrhosis may continue to develop • Poor results at a high cost Maxime Journiac : ANRS-ISVHLD Paris July 5 2006

6. What we need • Better Information • Validated Non Invasive Tests • Easy to use injecting devices • Less toxic drugs (Ribavirine) • Access to Epoetin and G-CSF to patients in need • All co-infected patients (>F2) should be seen by an infectiologist and an hepatologist • A better global care including medical and psycho social care, support and management of adverse events • Quicker referral to the transplantation lists Maxime Journiac : ANRS-ISVHLD Paris July 5 2006

7. Conclusion (1) • We need a real pluridisciplinary and global care • Doctors have to stop wondering if they use EPO and G-CSF and start finding the right doses for a better benefit/risk ratio for the patients • New Molecules and new strategies • An anti Hep C vaccine • We have to come up with strategies of treatment for non responding patients Maxime Journiac : ANRS-ISVHLD Paris July 5 2006

8. Conclusion (2) • Remember that you are not only treating a virus and an organ but a whole person with his/her own needs, priorities and specificities. Maxime Journiac : ANRS-ISVHLD Paris July 5 2006

9. Aknowledgements • I want to thank my colleagues from CHV, TRT-5, EATG and all the co-infected patients that I have met over the years who’ve help me gather all these informations • I also want to thank all the dedicated ANRS infectiologists and hepatologists from the AC 24 (hepatitis group) and co-infection group who do their best to fight for a better care for us • Last but not least I want to thank my doctor (she knows who she is) Maxime Journiac : ANRS-ISVHLD Paris July 5 2006