Community Led and Directed Approaches to Advancing Harm

ReductionLouise Vincent MPH

Executive Director, Leadership TeamNC Survivors Union, Urban Survivors Union

Urban Survivors Union National NC Survivors Union

A public health and community organizing model for change.

Theory of Change: USU is a community organizing group. We sometimes call ourselves radical service providers because we provide direct services in areas where programs are illegal or newly legal because we cannot have robust organizing when drug users are denied the most basic lifesaving services.

Faculty Disclosure

• No Disclosures

Educational Need/Practice Gap

Educational Need: Harm Reduction Organizations are too often run by people without lived experience. Harm Reduction is being professionalized and is losing the spirit of community resilanceliance.

Practice: Drug user unions should lead and direct harm reduction initiatives to ensure they stay true to their core values.

Upon completion of this educational activity, you will be able to:• Explain how defining harm reduction as a public health

intervention undermines the power of community led harm reduction approaches directed and carried out by PWID.

• Describe Drug Life Balance and other strategies to work more effectively with PWUD

• Describe Onboarding as a strategy for working with government and formal harm reduction groups to effectively develop meaningful engagement.

• Discuss the role and history of peer led movements in the US

• Discuss the importance of MAT REFORM

• Develop a low threshold employment model/ policy for harm reduction groups.

Expected Outcomes

• Understand the importance of involving people who use drugs in the planning, commissioning, delivery and review of harm reduction and drug treatment services.

• A meaningful participation includes drug users being paid for their time and values for their expertise.

USER RUN- USER LED:Its hard to turn off your work when your work is your life and your participants are your community

The History of Drug User Organizing

Grassroots Organizing:

● Reactive, pragmatic and highly purposeful

● Members of the active drug scene are engaged, organized and mobilized through active drug user networks.

● Independent, often unpaid and volunteer run (USU is moving away from this model)

● Address situations that arise within drug using communities

Urban Survivors Union Resources

https://drive.google.com/drive/folders/1ki9SiJdliBNTvfM8eIRmQHurY6vmP2zr?usp=sharing

Pyramid of Involvement*

*International HIV/AIDS Alliance, 2015

We are the experts so include us in a meaningful way

As people who use drugs, we are the ones who are in the best position to talk about our reality and find answers adapted to our needs. If you want us to participate in your discussions and decisions on services and other concerns, you have to allow us to do so.

Adapt your programs to our needs!

Do’s and Don’ts Don’t only invite people who formerly used drugs

Do invite people who formerly used drugs, in addition to people who actively use drugs

Do listen to and integrate our answers

Do make sure that you provide a real path from passive service recipient to active organizer and service provider

Do be honest about what you can and can’t do

Don’t overpromise

Don’t set people up to fail

Compensate people for their time--with money.

Treatment Advocacy Groups

1970’s - Committee of Concerned Methadone Patients

1988 - National Alliance of Methadone Advocates

Current - National Association of Medication Assisted Treatment

MAT REFORM NOW!

People Who Use DrugsHave A Right To Receive Treatment That is Neither Cruel nor Degrading

Abstinence Based Treatment

The number one outcome for drug treatment is relapse.

MAT is the Gold Standard but there are so many barriers that it is difficult to get people on methadone.

The cost of suboxone, methadone, etc.

We are not delivering better outcomes than we were 25 years ago.

Methadone Reform

The pandemic sparks a national movement within the Union to reform methadone treatment and poor clinic practices including the treatment by staff of clinic patients.

Community Organizing for Change

In response to COVID-19 the national union saw the massive need for a reform of methadone after seeing and experiencing a lack of safety standards being followed in clinics, even after a document released by SAMHSA outlining exceptions and changes for methadone during the pandemic.

Members of the Union collaborated as a single voice to write a demand letter outlining specifics for treatment reform during the pandemic.

Over 100 different organizations, professionals, and individuals signed on to the letter supporting the Union’s demands for methadone reform.

Media mentioned the letter in multiple online articles related to the poor protocol of clinics during the pandemic.

Media Response and Attention

https://filtermag.org/buprenorphine-methadone-reform-coronavirus/amp/

https://www.wsj.com/articles/coronaviruspandemic-complicates-opioidtreatment-11586262903

https://theappeal.org/methadone-rules-requiring-in-person-visits-are-putting-patients-at-risk-of-coronavirus/?fbclid=IwAR2ft_431LKNVUPHNsTGPiVTAykWrqZkHlO_4QjC0LCKZVpdTsMkUcpvZTw

https://www.vice.com/en_us/article/9397az/addicts -on-methadone -have-a-dangerous -choice-risk-relapsing -or-expose-themselves -to-coronavirus?utm_campaign=sharebutton

https://www.rstreet.org/2020/04/10/nations-leading-drug-policy-experts-demand-medication-assisted-treatment-and-covid-19-treatment-reforms/?fbclid=IwAR0lei67gAPYSv83BM4vK1OcAz2Y7u_vav9pWv3yQ0zaMQ80XW1pknWh-Mg

https://www.hepmag.com/article/methadone-clinics-following-social-distancing-guidelines

Methadone Monday

Methadone Monday calls are continued as the discussion for methadone reform is fueled by the loss of takehomes extended by clinics during the pandemic.

Webinar Turning Patients into Advocates

Union members begin to meet during weekly calls held every Monday night, and as the Monday night call and the call for methadone reform pick up attention through social media and word of mouth people from outside the union begin to join in as well.

The success of the Methadone Monday call led to a methadone webinar.

The methadone group is currently working on putting together a white paper to publish their data collected from a nationwide internet survey about clinic practices before and during the pandemic.

Why are User Unions Essential

Drug Policy

User Unions can influence drug policy---they are the voice of the drug user. You cannot make good policy without directly impacted people at the table.

Public Health

The health of drug users affects the health of society. No one wants to be unhealthy. No one wants to have HIV and /HCV. Given the tools and education people that use drugs protect themselves from disease

Social & Community Health

Drug User Unions reduce crime and improve the lives of individuals by providing support, health and wellness services, and opportunities to love and serve their fellow man.

1980’s Public Health Model For Drug User Organizing

VANDU - Vancouver Area Network of Drug Users

Lee’s Rig Hub

New England User Union

Urban Survivors Union

Chicago Drug User Union

San Francisco Drug User Union

With the emergence of HIV and Hepatitis C much like European Models such as Australian IV and Illicit Drug Users League the US Began to See Drug User Unions Pop Up.

These groups participate in Advocacy, Radical Service Provision, Social Marketing Campaigns, Produce Drug User Magazines and Information Blogs, Peer Based/User Run Programs

UNDERGROUND SERVICE PROVIDERS! UNDERGROUND TREATMENT!

INSTRUMENTAL IN THE FIGHT FOR LEGAL SYRINGE ACCESSNOTED FOR REDUCING THE RATES OF HIV, HCV and OVERDOSE

The Human Rights & Health of People are Connected

● Teaching drug users about their legal rights on being stopped, searched and arrested.

● Educating drug users about their human rights, what they are and how they are being violated.

● Providing legal advice and advocacy within peer networks within links to free legal services.

● Documenting Human Rights Abuse● More than Tested, Empowered (This is a human

rights framework)

“THE OFFICIAL US POSITION ON IDU’s IS ONE IF INCOMPETENCE AS WELL AS PATHOLOGICAL AND IN NEED OF INTERVENTION AS OPPOSED TO ALLIES AND PARTICIPANTS IN THEIR OWN AND COLLECTIVE HEALTH”

Developing a Statement that moves us beyond a public health interventionA Harm Reduction Politic - Race and the Drug War Webinar

Will be held:

Drug User Organizing

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USU Model of Organizing: Organizing through Direct Service Provision

We operated for 10 years before syringe exchange was legal.

Provided syringes and naloxone.

We fought for legal syringe exchange- Won 2016

Fought for Good Samaritan- Won

Fought for naloxone access-Won

NCSU is a Community Led Drug User UnionWe are made up of directly impacted people. We are in the process of learning as we go.1. There is a difference between a person who uses drugs and a chaotic drug user. Work

can move people out of chaos and assist in positive change.2. There are jobs for people who are in chaotic use and jobs for people who are able to

display consistency and dedication. Don’t set people up to fail.3. We don’t hire people because they use drugs, we hire people because they have

experiences and are dedicated and looking for an opportunity.4. There is nothing easy about working with people who are stigmatized, discriminated

against, living day-to-day and check-to-check. NOT EASY5. Team based systems and accountability partnerships make a huge difference.

Reverse Advisory BoardWe have 100% of our board as former / active drug users and 51% active drug users. We are building a reverse advisory board to assist with :

1. Transparency and legitimacy2. Skill building and support

ALL BOARD AND STAFF MEMBERS HAVE A MENTOR. This allows for continuing education and personal support.

Strategies to support people who use

drugs as employees

▪ Code of Conduct

▪ Induction training for all staff

▪ Health checks and immunization

▪ Managing chronic health conditions

▪ Staff training and professional development

▪ Managing relapse and preventing burnout

▪ Sensitivity training for non-users

PWLE - People With Lived Experience

Peers or people with past or present lived experience (PWLE) of substance use who are considered experts in the field. PWLE can provide insights into the realities of substance use and their local risk environments, and the applicability of programs and policies. Meeting attendees agreed that peers have been, and should continue to be, at the forefront of the overdose response, and are often the first responders to an overdose. Support for peers recognizes their essential contributions to sustainable solutions as well as their right to safe and equitable employment.

WHY DO IT? Are you Promoting Drug Use and Culture?

Hiring people living with HIV or HCV, hiring people who use drugs and people who have lived experience sends a clear message. It says that you support drug-using individuals and that you and your project are committed to ensuring that they have a voice in determining their own realities.

Always make sure your policies and procedures demand positive change and safe space. We are not providing a place to condone anything, we are providing a space to grow and create self efficacy, connection and support.

Building Connection: Coming in as service recipient staying as a providerWork is an important part of wellness

• Emotional - Developing skills and strategies to cope with stress

• Financial - Creating financial independence, self satisfaction, belief in ability to care for self.

• Social - Develop sense of connection and support system

• Spiritual - Search for meaning and purpose- begin to feel needed/ able to give of self

• Occupational - Personal satisfaction, enrichment• Physical - Recognizing the need for balance, sleep,

nutrition, and self care• Intellectual - Recognizing creative ability and begin to

enhance skills• Environmental - Good health by occupying

stimulating environment

Positive Change and Recovery

Recovery is a process of change through which individuals improve their health and wellness begin to live a self directed life and strive to reach their full potential

Dimensions that support recovery: Home, Health, Purpose, Community

WORK IS STRONGLY LINKED TO HEALTH, PURPOSE, and COMMUNITY

Polic

ies:

POLICY: Employees and peers may not come to work showing signs

of inebriation. All staff—including outreach workers—are

expected to perform their professional duties in a coherent,

competent, and respectful manner.

Any sign of inebriation requires the worker go home directly.

POLICY: Management may not conduct witch hunts or drug testing to

determine drug use by employees.

Drug-Life-Balance

A guide to working with people who use drugs

Hiring impacted people is a commitment. A commitment

to your agency and a commitment to the people

you serve.

1. We do not hire people because they use drugs

2. Temporary and Daily Work, i.e., positions are positions like any other entry level position

3. We judge behavior not chemical content of urine.Health Educators & Organizers - Always have a place to advance!

Supporting Active Users:This topic is tricky and there are no clear ways to handle this with perfect ease. First, it is important to remember that people experience substance use differently. Some people use substances, in fact most, without any problems at all. Others spend their entire lives trying to grapple with substance use and substance misuse.

The Balance Between Accountability and SupportAccountability vs. Support

Strengths Based

Remember, PWUD Use Drugs

Drug Dependence: A person needs a drug to function normally. Dependence can be

both physical and psychological

Addiction: Compulsory and continued use of a

drug in the face of negative conseDrug

quences

Chaotic vs. Problematic vs.

Managed Drug Use

TOOLs for Drug User Organizing

https://docs.google.com/presentation/d/1gcxb1dp3kh4fiIpi6bAR9sCItYKsZ5smzZ4dNzQvQzk/edit?usp=sharing

Union Demands For Change Adequate funding should be allocated to groups led by people who use drugs

Outside organizations should partner with organizations led by people who use drugs

Representatives from organizations of people who use drugs should be members of national and local coordinating bodies

There should be public meetings, marches or rallies held to promote the rights of people who use drugs

Word choice

COVID 19

COVID-19 COMIC

Collaboration with UNC

NCSU put out a set of harm reduction guidelines for people who use drugs to follow during the pandemic.

A section was created for both people buying and selling drugs.

Harm Reduction During a Pandemic