Home » You can’t do it without us! The role of peer led organisations of people who inject drugs in the HIV response

You can’t do it without us! The role of peer led organisations of people who inject drugs in the HIV response

Organized by International Network of People who Use Drugs (INPUD)

MOFA Netherlands.  Official part: funded under the BG project/?  Key population, HIV and rights perspective.  sex workers, MSM and drug users.  Principle of Netherlands that AP are involved in policy making and service provision.  Background in DP, don’t expect people like me sitting in buildings like this to come up with solutions.  We need people on the ground, who have experienced drug problems first hand.  Often local problems with local answers. 


We need you to come up with answers to the problems that exist.  We should involve affected populations in our policy development and it is easier said than done.  Do not always ask them to sit around the table.

Personal reasons is that the Netherlands was first.  Rotterdam — junkie union — started there in late 1970s.  First drug user organisation in the world — founder his neighbour.  Died of AIDS in 1992.  An example of how important drug user organisations can be.  Started needle exchange program so that drug user voices were heard.  Drug users organisations disappeared in the Netherlands but became global.  Struggle.  Not an easy job. 

Speaker from Australia.  Well understood that we are here and can speak for ourselves.  That we are at the table and not just spoken about. 

Holly Bradford.  San Francisco Drug Users Union.  100% drug users, felon, gang member, formerly incarcerated — don’t hire anyone except.  Give me something that makes me trust you. As a drug user, I can’t get a job anywhere.  In the US if you have a felony conviction you can’t get work anywhere.  I have a good resume but I can’t housing, food stamps, because I am a drug felon.  I can’t escort my grandson on field trips with his school. 

Low threshold services for drug users by drug users.  Before and after story.  Poop map — homeless people.  Tenderloin.  SF has the highest rte of illicit substance use of any metropolitan area in the US.  Roughly — lowest income area in San Francisco.  6000 homeless PWUD in San Francisco.  Tenderloin has heaviest concentration of people who use drugs in the city.

Before, a small group of well intentioned, non drug users decided to rent a nice clean space.

No services offered to drug users. Drug users got high and lay around.  Local community of Drug users were not even allowed to enter the building to use the bathroom.  No needle exchange.  No place for PWUD to get wrm, to feel community or to obtain sterile injection equipment or naloxone.

IN late 2012 taken over by drug users.  Created a strategic plan.  Started needle exchange program, naloxone distribution.  Largest fixed site NSP in the entire city.  People come because they don’t feel judged.  SFDUU has a volunteer crew that cleans the streets.  Outdoor drug market. 

Formed relationships with other drug using networks locally, nationally and internationally.  created committee to bring Supervised Injection Facility to US.  Began to offer other services.  Low threshold bathroom, HIV/HCV rapid testing, acupuncture, wound care.  Small movie on Youtube.  Started hanging out and getting to know each other.  Grieve our members when they die.  Have a ceremony.  All of a sudden our little space was full of drug users and open all the time.  USADUU US Alliance of drug users.  created by SF DUU.  Space has doubled, staff has tripled.  We should run programs for ourselves, or have a huge say in all the programming and development. 

One of the things we talk about in Australia in the world is the fact that drug users were always looking after other.  We always did that.  Easier if you have some structure around you and money to run programs and run harm reduction programs. 

National drug users union in Indonesia. Sam Nugraha. PKNI.  Indonesian Drug Users Network in HIV response.  Indicators.  Total abstinence not the only indicator.  There is no one answer — indoctrination from the system. 

•   Initiated in 2006 to address stigma, violence, discrimination and violations of human rights against people who use drugs. 
•   2009 Special Congress (by laws, addendum, new elected, structure and coordinator) 
•   Registered and structured 2010 (starting with 13 groups)
•   2011 Study visit to Australia Drug Court
•   2011 National Congress (by laws addendum, new elected structure and coordinator; 25 groups in 19 provinces)
•   Hep C study

•   Overdose awareness amongst members
•   Involved in TWG Harm reduction
•   Launch module for positive prevention
•   Developing national SOP for NSP
•   Workshop of development monitoring and evaluation tools for community based treatment
•   Technical meeting for study of young people who inject drugs
•   Initial workshop for Integrating Drug Overdoes Program with Drug Dependence Treatment and HIV Prevention, Treatment, care and services

2013 Highlights.
•   Monitoring of harm reduction implementation in 9 provinces
•   HIV, HepC, TB awareness among members
•   Revised Community based treatment guidelines
•   desk review HIV and law
•   peer paralegal assistance for drug related offences
•   Developing national work place policy related to HIV

2014 Highlights
•   Reactivate Harm reduction TWG
•   Advisory committee on rehabilitation assessment
•   Team writing for Hep C care, support and treatment
•   Qualitative study in five cities to see the implementation of right to rehab for people ho use drugs
•   National consultation meeting on Hep C
•   Dialog on 5 years drug law No. 35/2009
•   Red Ribbon award — on Human Rights
•   Study on Women and girls who inject drugs in 3 provinces

Three recommendations
•   Key factor of this intervention’s success was peer led organisation to HIV response
•   Meaningful participation and collaboration between policy makers and the drug users is necessary to deliver effective, quality based services that accommodate the community needs and concerns
•   Acknowledgement and support for best performing peer led organisation is the first step to sustainability.

Sathi Samuha (Friends Group) A community-led NGO of people who use drugs and people living with HIV and AIDs in Nepal.

There are a total of 91,534 drug uses in Nepal (Minister of Home Affairs 2013) — mostly male
Among them 85,204 are male, 6330 female
More than 50% IDU
Large proportion fall between 15-24 years old
HIV prevalence among IDUs is decreasing.

Previous situation
Nepal started the Global Fund program in 2002
There was no involvement of PWID in policy level CCN nor in program level (sub-recipient/providers)
Harm reduction program very nominal (only 1-2 programs across the country)
Other drug related programs were focused in just community awareness of use
HIV infection ratio among PWID stood at 68% 2002-2004
Hep C infection above 90% among PWID

Users Momentum in Nepal
Drug user momentum gathered apace in 2003 in Nepal
Advocated for free treatment (rehab) for PWUD that lasted for five years and 1000 s of PWUD benefited from that program

In 2006 advocated to restart the methadone program for PWID.  Stopped in 1995 and again successful to re implement methadone program at least in 3 sites.

PLHIV also gearing up
PLHIV momentum also steered by PWID living with HIV
Government of Nepal has adopted harm reduction, risk reduction principles an deprograms within its drug policies
As of 2014 total of 31 NSPs operating in 14 districts
Six methadone sites currently running and four new sites in pipeline
Five bupenorphine sites open

HIV prevalence among PWID 65% in 1998 (?)
2014  dropped to 3%   Because of ART enrolment and outcome and harm reduction. 

31 fulltime paid employees — PWID and 7 are PLHIV.  We don’t merely believe, we work for meaningful involvement of PWID at all levels. 

Peer educators at PE training and playing games at drop in center. 

Gaps and challenges
If you stop or take out the HIV related programs and services then there is nothing left for people who inject drugs
No programs for empowerment of PWID community
We can challenge the stigma and discrimination

What will it take to achieve “Halving HIV transmission among PWID”
Focus, that HIV prevention is the key
Speed — treatment absolutely key to achieving end of AIDS epidemic

Faith that we can accomplish our goal to achieve a society where people who use drugs and living with HIV get their civil rights as well as the services they need in non-coercive and respectful ways.  We know what it’s like to overdoes, to go into treatment, shoot drugs, stigmatised or be discriminated against.  we know what it is like to save a loved one and lose a loved one.  We bring that authenticity to the work we do, the services we provide and the relationships we forge.  We know what we are talking about when we advocate for better services and quality treatment or syringe or methadone and naloxone.  We have 10 years of experience. …

Judy Mungai — Kenya Network of People who Use Drugs  (KeNPUD)

What we can do together….INPUD funding and ITPC (International Treatment and Preparedness Coalition)
Generation of evidence for programs.  Increased risky injecting and sex behaviours in drug dens.  Communicate to all harm reduction stakeholders.
KenPUD involved in PBS research development
Mobilising community to participate in research (KenPUd members were involved in the data collection — felt that they owned the research)
Results. 88 percent of PWID used a needle, needle sharing was high at 17%.  Had to do something with 12% who were not using a new syringe.  Now secondary needle syringe exchange accompanied by education even if in trusting relationships. 
Work as peer educators, outreach workers and outreach supervisors in implementing services.
Drug overdose.  Half of people who inject have experienced.  More men than women.  Training on overdose prevention and management in drug dens.  Availability of naloxone with peers.  Not in drug dens.  Available at outreach sites.  Doesn’t help users in the case of overdose.
Condom.  67% PWID used condom when had sex with paying client.  Condom use high in paying clients.
•   Safer sex education with condoms and lubricants.
•   Referral for screening and treatment of STI
•   Encourage for quarterly HIV testing, followup in care and treatment and support adherence

Experience of violence.  PWID forced sex.  Women major victims.  PWID experiencing high violence by law enforcement and rowdy groups.  More men than women experience this kind of violence. 
Challenge punitive laws and policies demonstrated through violence by convincing stakeholders through public health and peer educating.

Kenya AIDS NGOs consortium
MoH, NASCOP Team, TSU team
Harm Reduction

I represent the affected populations of people who need access to controlled substances for pain, palliative care and methadone treatment — How can we partner with you?  Harm reduction reps can work on improving access to MAT but

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