Jules Levin Founded NATAP in 1995 and remains the Executive Director. NATAP has been a leader in providing HIV and hepatitis C and B education and information, HIV & Aging, and in policy/advocacy since 1995 in HIV and aging and Hepatitis C.
NATAP pioneered large-scale national community HIV and hepatitis C treatment education programs starting in 1996, and pioneered online HIV conference coverage starting in 1996 adding hepatitis C and B 2 years later. NATAP held the first large-scale HIV community-based treatment education forums in 1996 when HIV protease inhibitors were initially marketed, and these 2 events in NYC and LA were attended by 800 people at each event, with over 1000 registrants for each event, and speakers included the discovery teams from each company including Emilio Emini from Merck, John Leonard from Abbott, Marty St Clair from GSK, Wiquen Hsue from Roche. Hepatitis C care and treatment education was added to the agenda 2 years later. This program pioneered treatment education for communities of color in 1998 by focusing this program in 1998 on targeting the education program for marginalized patient communities, that is, communities of color, African-Americas, Latinos and women of color. Since then the program has always focused on these same marginalized communities of color. Over these years over 30,000 individuals have attended the events. The NATAP National Treatment Education Program has been ongoing ever since, continues today, with over 310 large community-based forums and small workshops having been held in over 15 major cities, in English and Spanish language, including in the Caribbean and Puerto Rico, speakers include leading researchers/clinicians.
The NATAP website was the first to receive press credentials to CROI and to provide CROI coverage online. The website traffic is high, it receives 4 million hits monthly and over 50,000 people receive the daily emails, globally. It is a leading internet resource for HIV, HCV and HBV conference coverage including in 'real-time', treatment and care updates, news and policy, related journal publications, and information and education related to 'HIV & Aging' and HIV Bone Disease.
Policy: HIV; Hepatitis C; Aging in HIV
In 1994 Jules launched what turned out to be a large-scale effort to accelerate & facilitate access to the 1st new HIV protease inhibitors. Drug makers Abbott & Merck refused to provide Early Access Programs (EAP). Jules met with federal officials, formed a national coalition, and worked closely with the FDA to design the public FDA hearing on access and EAPs for ritonavir and indinavir. As a result, both Abbvie and Merck provided EAPs before FDA approval. Jules continued working with the FDA to insure accelerated approval for the first protease inhibtors.
I have over the years sat on numerous advisory boards in HIV and HCV, and sat on and advised many FDA Antiviral Advisory Board Meetings in HIV and HCV.
In the policy/advocacy arena NATAP also pioneered a few additional key areas of clinical importance for patients. Jules was a member of the ACTG Research Agenda Committee (RAC) for 5 years from 1999-2004. Jules Levin and NATAP have been active in HCV Federal policy and in New York City and New York State since 1998, and launched and led the effort to put HCV language into the 2006 reauthorized Ryan White Care Act, following a 5-year advocacy project in Washington DC and in NY State. Jules and NATAP held the first HCV Briefings in Congress and met with White House, HHS and Administration officials over the course of the next 6 years. Jules along with key Congress leaders wrote the HCV & HBV language that was placed for the first time in the 2006 reauthorized Ryan White Care Act, and the language remained it subsequent reauthorizations and was in fact expanded. As a result Ryan White Care Act funds were made available to Ryan White Care Act Regions throughout the USA. In NYS Ryan White Care Act funds have been recently used to fund NYS-funded HCV projects.
In 1998 Jules was the first to raise awareness about HCV in HIV, and was the first to meet in 1998 with NYS Dept of Health officials & the Ryan White Care Act Council in NYC. After a series of meetings and presentations to the Ryan White Council & to the Health Committee and Dept of Health officials, the first 9 coinfection clinics were opened at NYC public hospitals throughout NYC. As well, over $1 million was budgeted for HCV/HIV Coinfection in the Ryan White Council annual budget for spending in NYC which persisted for several years.
Jules realized the impact of Aging in HIV 9 years ago, when no one was paying any attention, after experiencing a wrist fracture. Jules started to galvanize the community, by initially organizing an ACTG Aging/HIV Educational Symposium at the ACTG. Speakers included leading ACTG researchers who specialized in bone disease and other comorbidities. Out of that emerged Jules' recommendation to form the first ACTG Bone Subcommittee. Jules began education on care/treatment & policy on HIV aging for all affected stakeholder communities: patients, advocates, clinicians, providers, researchers, the NIH, OAR, etc, through the NATAP website & listserve. It took several years but finally people started to listen. About 5 years ago I approached the OAR along with community advocates with the request for a commitment to aging. Out of that came a one-year panel brought together by the OAR that included a large group og key HIV & ACTG researchers who focused on comorbidities, and I was included in the panel. After 1 year of meetings we finalized a research recommendation paper, which was published in JID. I asked the OAR to help provide large scale funding for Aging/HIV research through the NIH and they did that. Since then over $50 million in RFPs have been provided from the NIH to aging/HIV researchers.
NATAP & Jules continue to be dedicated to the unmet needs in HIV and Aging, and in HCV.
Hepatitis C screening is a major focus for a large NYC project by NATAP & Jules. This is the most important area that needs attention in HCV except of course for new drug development. NATAP/Jules very active with government, community & private HCV advisory panels & boards, and in interacting with federal and local governments on HCV & screening projects. Jules designed the concept for The Check Hep C Project about 4 years ago, it was not only a screening program, it was the 'HCV Urban Plan, the HCV Ryan White Care Act", if you will. It incorporated the needed key components: awareness & advertising, rapid HCV test screening, linkage to care with specially training patient navigators, community based care, and weekly internet based HCV treatment education & case studies which serves to expand the treater pool. This program can & should be duplicated in cities throughout the USA. Although the program targets disenfranchised patient communities that is because the funding was too limited to conduct a more expanded project that can include all affected communities, and is what can be implemented in other cities, with adequate resources.
NATAP's weekly radio show in NYC "Living Well With HIV and Hepatitis" was on WOR-AM for 2 years from 2001 to 2003, a 1-hour interview format produced and moderated and produced by Jules Levin, with over 30,000 listeners per week at its peak. Guests were leading HIV and HCV/HBV clinicians and researchers. The weekly discussions focused on HIV and hepatitis care and treatment, translating new research findings into care and treatment, and discussing conference proceedings in real-time.
NATAP and Jules remain active in HIV/aging and HCV policy and research issues. The outcome so far has been 10s of millions of dollars from the NIH to fund HIV Aging research, and clinicians & patients being educated about these concerns. Still, globally and in the USA there remain many unmet needs regarding HIV & Aging and of course regarding hepatitis C as well.
Jules has been HIV-infected for 35 years. Jules had HCV but was the first coinfection cure back in 2001 with a 2 year course of Pegasys & ribavirin.
Continuing the NATAP.org website's leading conference coverage in HIV, HCV & HBV, and reporting published studies of relevance, related news and policy.
Expanding the 'HCV Urban Ryan White Care Act' model nationally and globally.
Expanding HCV treatment and care education for clinicians, patients, service providers and care providers in NYC, nationally within the USA and globally.
Remaining active in HCV policy in NYC and in Washington DC.
Remaining active in leading the way in HIV & Aging policy and care education for clinicians, researchers, government, patients and providers.