Organizing Drug Users for Public Health Policy Changes 17 th International Conference on the Reduction of Drug Related Harm Jason Farrell, Executive Director - Positive Health Project, Inc. 301 West 37 th Street, New York, NY USA

PHP History and Mission Founded in 1993 Primary mission is to reduce HIV/HCV infection among IDU’s and substance users by providing a range of health, education and prevention services. Services are provided based on clients needs, trends in drug use, and upon participant advisory committee recommendations. One Stop Shop Harm Reduction Model

HIV Infections in NYC New York City has 20% of the nation's HIV cases and AIDS deaths, highest rates in the US. PHP is located, in the Chelsea/Clinton community, where cumulative AIDS case rates are 3.3 times higher than all of NYC; 413 times the national rate.

Milestones 1999: Designed HBV vaccination study for IDU’s with Don Des Jarlais. 2001: Developed safe injection equipment and study with Yale School of Public Health. 2002: First medical center for IDU’s in a needle exchange program. 2003: Free HIV/HCV Testing and Hepatitis A & B vaccination program. 2003: Published first utilization study of a Safe Injection Room in New York City 2004: Hired physician to distribute syringes in neighborhoods with high HIV/HCV infection rates via ESAP law

Integrated Services Outreach Services Client Intake/Triage Needle Exchange Medical Care/Dental Prevention Case Management Prevention with Positives Group Level Interventions Mental Health Services

HIV Among IDU’s in NYC

Outcomes and Success There has been an 80% reduction in HIV transmission. NYC 1992: 50% of IDUs were HIV positive, 4% infected per year NYC 2002: as few as 18% of IDUs are HIV positive, 1% infected per year

User Unions Dutch Model Australian Model Canadian Model

Mission and Purpose The purpose of the New York User Union now known as Voices of Community Advocates and Leaders (VOCAL) is to increase the scope of consumer input by involving IDU’s from all New York syringe exchange programs in the development of policies and services that directly affect their lives. VOCAL addresses the current lack of meaningful input that drug injectors mono and co-infected have in the formation, accountability, and implementation of services. Although harm reduction has become widely accepted as an approach to preventing the transmission of blood borne infections, drug users continue to be excluded from policy debates and program implementation, in contrast to consumers of traditional AIDS prevention programs.

Advisory Committees National HCAP National Viral Hepatitis Round Table National HIV/HCV Co- Infection Coalition Care Coalition Pharmaceutical Community Meetings State/City HIV Prevention Planning Group – City and State New York City Ryan White Planning Council New York Hepatitis Network New York State Viral Hepatitis Planning Committee IDUHA

Advisory Committees National HCAP National Viral Hepatitis Round Table National HIV/HCV Co- Infection Coalition Care Coalition Pharmaceutical Community Meetings State/City HIV Prevention Planning Group – City and State New York City Ryan White Planning Council New York Hepatitis Network New York State Viral Hepatitis Planning Committee IDUHA

User Organizing Trusting relationship with consumers/drug injectors Involvement with other advisory and planning bodies Network with other agencies that serve drug injectors Resources for transportation and food Facilitate IDU leadership Flexibility in meeting days and times Provision of advocacy training Access to current HCV/HIV medical information

User Organizing 22 members from all of New York City syringe exchange programs Committees: Housing; Health Care Access; and Prison Health Full member meetings monthly 4 th Friday of every month User organizing meetings are held every 2 nd and 4 th of the month HCV user support group every 1 st and 3 rd Thursday First user ESAP every Thursday 1pm to 4 pm Monday, Wednesday and Friday drop in lounge

Desired Outcomes Changes to medical procedures which encourage IDU's to access biopsies HCV care network to ensure citywide continuum of care Policy and service delivery changes to accommodate IDU needs regarding treatment care, adherence and support services Training for IDU's to become better advocates Participation and placement on committees that allow IDU's to monitor and develop prevention messages and service provision

Desired Outcomes Have an User Union committee member on the PPG and HIV Planning Council to monitor city funded prevention, support and medical care services and reviewing funding applications The New York User Union represents drug injectors living with HIV/HCV who are organized to facilitate change according to the needs of this population. The resulting effects for member of this committee includes a redeemed self-esteem, a found self respect and an inherent sense of self improvement.

PHP Contact Info For more information about New York User Union/VOCAL or Positive Health Project, Inc. please contact: Louis Jones, Lead Organizer & Director (917) Jason Farrell, Executive Director (212) extension 32