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

2. Maxime Journiac : ANRS-ISVHLD Paris July 5 20062 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 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 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 End Stage Liver Disease is the first cause of death amongst co-infected French patients

3. Maxime Journiac : ANRS-ISVHLD Paris July 5 20063 Obstacles to a first treatment Obstacles to a first treatment Lack of Information about the treatment, the adverse events Lack of Information about the treatment, the adverse events Lack of testing Lack of testing Fear of liver biopsy Fear of liver biopsy Long delay to access a specialist Long delay to access a specialist Negative representation of Hep C treatment Negative representation of Hep C treatment Population with different priorities and special needs (Alcohol and dug users, Prisonners, Homeless People, Undocumented workers and Migrants) Population with different priorities and special needs (Alcohol and dug users, Prisonners, Homeless People, Undocumented workers and Migrants)

4. Maxime Journiac : ANRS-ISVHLD Paris July 5 20064 Obstacles to a 2nd or more treatment (1) 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,…) 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 Unsufficient global care Poor tolerance to treatment (poor quality of life…) Poor tolerance to treatment (poor quality of life…) Poor adverse events management Poor adverse events management Psycho social difficulties (lack of governemental social programmes) Psycho social difficulties (lack of governemental social programmes)

5. Maxime Journiac : ANRS-ISVHLD Paris July 5 20065 Obstacles to a 2nd or more treatment (2) Obstacles to a 2nd or more treatment (2) All treatments include Peg IFN and Ribavirine which are particularly toxic to co-infected patients All treatments include Peg IFN and Ribavirine which are particularly toxic to co-infected patients Development of complications over time Development of complications over time In spite of viral clearance, cirrhosis may continue to develop In spite of viral clearance, cirrhosis may continue to develop Poor results at a high cost Poor results at a high cost

6. Maxime Journiac : ANRS-ISVHLD Paris July 5 20066 What we need Better Information Better Information Validated Non Invasive Tests Validated Non Invasive Tests Easy to use injecting devices Easy to use injecting devices Less toxic drugs (Ribavirine) Less toxic drugs (Ribavirine) Access to Epoetin and G-CSF to patients in need Access to Epoetin and G-CSF to patients in need All co-infected patients (>F2) should be seen by an infectiologist and an hepatologist 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 A better global care including medical and psycho social care, support and management of adverse events Quicker referral to the transplantation lists Quicker referral to the transplantation lists

7. Maxime Journiac : ANRS-ISVHLD Paris July 5 20067 Conclusion (1) Conclusion (1) We need a real pluridisciplinary and global care 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 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 New Molecules and new strategies An anti Hep C vaccine An anti Hep C vaccine We have to come up with strategies of treatment for non responding patients We have to come up with strategies of treatment for non responding patients

8. Maxime Journiac : ANRS-ISVHLD Paris July 5 20068 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. Remember that you are not only treating a virus and an organ but a whole person with his/her own needs, priorities and specificities.

9. Maxime Journiac : ANRS-ISVHLD Paris July 5 20069 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 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 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) Last but not least I want to thank my doctor (she knows who she is)