1. Transplant Ethics Meeting 7/28/01 1 Ethics of Advertising and Outreach: Liver Transplants in HCV/HIV TWO QUESTIONS: 1. How do we both provide information and access to the public and deliver a balanced message about the unknowns and risks associated with this experimental intervention? 2. How do we control outreach and referrals so individual centers are not overwhelmed?

2. Transplant Ethics Meeting 7/28/01 2 Who is NATAP ?? NATAP (the National AIDS Treatment Advocacy Project) is a non-profit based in NYC Mission is to provide comprehensive & timely treatment education to affected communities (patients & care providers) globally including P.R. and NYC HCV & HIV education in English & Spanish to 50+ ASOs, forums, web site, radio show, NATAP Reports newsletter, printed materials (fact sheets), HCV and HCV/HIV Handbooks, individual case mgmt, Email Reports HCV Coinfection education and advocacy has been a major focus

3. Transplant Ethics Meeting 7/28/01 3 Personal Community Response I’m not sure it’s ethical or appropriate to exercise control over how many people hear about the program, so the sites don’t get overwhelmed as you say. I think the community & public need to know about the program; they have a right; I’m not convinced inquiries will be overwhelming anyway The sites ought to come up with a way to handle inquiries & requests for information The program offers an opportunity to raise awareness about risks & benefits of transplants, and about the urgent need for donors

4. Transplant Ethics Meeting 7/28/01 4 Personal Community Response (2) This is an opportunity to educate & raise awareness of public about organ transplants And, about issues related to HCV/HIV coinfection treatment, and kidney & HIV health issues Perhaps local community based organizations can partner with the site: become educated about issues and make themselves available for inquiries: --each site can educate local CBOs --sites can jump-off program by holding community education symposiums for local CBOs and patient community --each site should consider a CAB