About Clinical Trials

For a brief introduction to clinical trials, see AIDS InfoNet’s Participating in a Clinical Trial and How HIV Drugs Get Approved.

For a video introduction, see Clinical Trials Part 1 and Part 2 from the AIDS Library’s YouTube page (created and narrated by Val Sowell for Frontline TEACH!).

To better understand clinical trials, the National Institutes of Health (NIH) publishes a lot of useful Background Information, including:

• Understanding Clinical Trials
• A Glossary of Clinical Trials Terms

For news about clinical trials, see the NIH’s Clinical Trials News page and their What’s New page, with updates of recently added or modified studies.

To learn more about the major organizations sponsoring HIV clinical trials, see the University of California San Francisco’s HIV Research Groups and Organizations webpage.

To see a map of federal HIV/AIDS research centers, with links to each hosting organization’s website, see the National Institute of Allergy and Infectious Diseases’s Centers for AIDS Research (CFAR) map.

For a brief history of clinical trials (not HIV-specific) see the Canadian Medical Association’s A Short History of the Clinical Trial.

How to Get Involved in Clinical Trials

People considering joining a clinical trial, may want to first read the AIDS Community Research Initiative of America’s Should I Join a Clinical Trial?

For a longer consideration of these issues, see the San Francisco AIDS Foundation’s A Guide to Clinical Trials, Part 1 and Part 2.

To find out about current clinical trials, and to learn how to participate in these trials, see the NIH’s webpages:

• Search for HIV/AIDS Clinical Trials
• ClinicalTrials.gov – not HIV-specific

At both sites, you can customize your search based on age, population, type and stage of research and more.  At the ClinicalTrials.gov site, there is a Map of All Studies   where you can browse where clinical trials are taken place all over the country and the world.

The NIH also publishes Animated Tutorials on how to search for clinical trials.

The Body.com also collects several other clinical trial databases, at their webpage on Open Clinical Trials.

Anyone participating in a clinical trial must sign informed consent documents.  For more on informed consent, see:

• The National Cancer Institute’s A Guide to Understanding Informed Consent – not HIV-focused, but relevant and more readable than the next two links
• The U.S. Department of Health & Human Services Informed Consent FAQs
• The FDA’s Guide to Informed Consent – Information Sheet: Guidance for Institutional Review Boards and Clinical Investigators – aimed at researchers not participants, but useful if you want to know what expectations the researchers have for themselves

Concerns About Clinical Trials

Clinical trials are medical experiments on humans, so there is reason for folks to be concerned about them.  For government statements about clinical trial concerns, see the FDA’s page on Participating in Clinical Trials, including information on:

• Clinical Trials of Medical Treatments: Why Volunteer?
• Informed Consent Regulations
• Role of HIV Drug Resistance Testing in Antiretroviral Drug Development

For more information on the ethical concerns about HIV clinical trials and about experimenting on humans, see:

• The World Health Organization’s Ethical issues raised by the HIV/AIDS epidemic
• The NIH’s Office of Human Subjects Research Regulations and Ethical Guidelines and Information Sheets and Forms
• The University of California San Francisco’s Ethical Dimensions of HIV/AIDS: Research Ethics (with full citations to scholarly articles about this subject)
• The University of Pennsylvania’s Center for Bioethics webpage Logistical and Ethical Considerations in HIV Vaccine Clinical Trials

A lot of concern about human experimentation comes from the history of the Tuskegee Syphilis Study.  To learn about that study see:

• The U.S. Centers for Disease Control and Prevention’s U.S. Public Health Service Syphilis Study at Tuskegee
• National Public Radio’s Remembering Tuskegee
• The Body Positive’s The Legacy of Tuskegee: AIDS and African-Americans
• The National Academy of Engineering’s Tuskegee Syphilis Study case study
• The book Bad Blood by James H. Jones, a history of the study, available in the AIDS Library!

Introductions

For an introduction to the latest developments in the search for a cure, see Project Inform’s A Primer on What’s Up With Cure Research.

For introductions from an activist perspective, see:

• AIDS Policy Project’s It’s Time for a Cure factsheets (in English and Spanish), as well as the longer AIDS Cure Research for Everyone: A Beginner’s Guide to How It’s Going and Who’s Paying for It
• Treatment Action Group’s What We Need to Cure AIDS, as well as the longer Report and Commentary from the Fifth International Workshop on HIV Persistence during Therapy

For recent mainstream media coverage of the search for a cure, see the New York Times’s New Hope of a Cure for HIV.

For more news stories, regularly updated, see Treatment Action Group’s Cure Resources page, with news reports from community-based organizations, the mainstream media, and scientific publications.

For more about the Berlin Patient, see:

• The website of Timothy Brown (a.k.a. the “Berlin Patient” himself)
• New York Magazine’s The Man Who Had HIV and Now Does Not

• TheBody.com’s The “Berlin Patient” and a Cure for HIV: Advocates, HIVers and Community Members Weigh In
• The New England Journal of Medicine’s report on Brown (very technical) Long-Term Control of HIV by CCR5 Delta32/Delta32 Stem-Cell Transplantation

Cure Research

For a detailed report on the state of cure research, see the HIV-Cure Related Clinical Research Workshop report, prepared by the AIDS Policy Project, the Foundation for AIDS Research (amfAR), Project Inform, and the Treatment Action Group.

The International AIDS Society has a webpage called Towards an HIV Cure: Global Scientific Strategy with:

• Info on the International Working Group for a cure
• The Rome Statement for an HIV Cure, which anyone can sign
• Conference information, calls for papers, grant information, and more

Other organizations working on the cure and their relevant websites are:

• The U.S. National Institute of Allergy and Infectious Diseases (NIAID) – HIV/AIDS Cure
• amFAR’s page – Research Consortium on HIV Eradication
• AIDS Research Alliance page – Cure Research
• Conference on Retroviruses and Opportunistic Infections (CROI)’s page –  Webcasts and Podcasts
• The Delaney Cell and Genome Engineering Initiative (defeatHIV)’s Research Endeavors page

For regularly updated news, reports, conference papers, and more, see TheBody.com’s HIV/AIDS Cure: Research page.

Cure Conspiracy Theories

It’s an exciting time for cure research, but unfortunately belief in fake cures persists.

For some AIDS cure myths, along with explanations of why these cures are false, see:

• AVERT’s A Cure for AIDS page, which debunks 21 fake cures, with some good information on the origin of these myths
• AIDS.gov’s Cure Myths page, which debunks 4 cure myths, with links to examples of these mistaken beliefs
• TheBody.com’s page addressing false beliefs around access to a real cure, Isn’t it true that drug companies are withholding the cure to make money?

For more about HIV/AIDS myths (with the truths to counter the myths!), see the AIDS Library’s HIV Myths page.

Poetry & Creative Writing In the AIDS Library

Here are some of the books of poetry and short-form creative writing available for check-out in the AIDS Library.

• Americano, by Emanuel Xavier – A collection of poems by a gay Latino poet
• Angels In America, Parts One and Two, by Tony Kushner – An epic “gay fantasia on national themes”
• Beyond Definition: New Writing from Gay and Lesbian San Francisco, edited by Marci Blackman and Trebor Healey – A collection of poems, stories, and other literary offerings concerning lesbian and gay experiences
• Blood Whispers: L.A. Writers on AIDS, edited by Terry Wolverton – An anthology of stories and poetry by writers who have been affected by HIV/AIDS
• Brother to Brother, edited by Essex Hemphill and conceived by Joseph Beam – Stories and poetry by Black Gay men
• City Lights Review, edited by Lawrence Ferlinghetti and Nancy J. Peters – A collection of varied literary works with a portion specifically addressing the cultural response to AIDS
• Confronting AIDS through Literature: The Responsibilities of Representation, edited by Judith Laurence Pastore – Part 2 of this book contains literature, including poetry, regarding AIDS
• Does Your House Have Lions?, By Sonia Sanchez – An epic poem on a family affected by the death of a brother from AIDS
• An Immediate Desire to Survive, by Bill Becker – An 18^th-month diary in verse beginning with the author’s first suspicions he has contracted AIDS
• In the Life, edited by Joseph Beam – The groundbreaking collection of fiction, poetry, and theater on being black and gay in America
• Las Marcas/The Markers, by John Michael Irwin – Poems about grief and life in the age of AIDS
• Poets for Life, edited by Michael Klein – A selection of poetry about AIDS, its effects and people’s responses
• Persistent Voices, edited by Philip Clark and David Groff – A collection of poetry from 45 celebrated poets lost to AIDS
• Rent, by Jonathan Larson – The complete book and lyrics of the Broadway musical about bohemians in Lower East Side NYC
• Unending Dialogue: Voices from an AIDS Poetry Workshop, by Rachel Hadas – Essays, prose and poetry in response to AIDS, mostly written during a poetry workshop given at Gay Men’s Health Crisis in New York City

Poetry & Creative Writing in Philadelphia

There are many places in Philadelphia where poets and writers have get their work read.  These are some organizations that run creative writing events or collect information about such events.  Note that none are HIV/AIDS-specific.  Click on the links for locations, times, and other details.

The William Way Center hosts a free “Queer Writers’ Collective” on the 4th Saturday of every month at 4pm.

The website of the organization First Person Arts has information about

• Adult Education Courses on “memoir art”
• A Community Writing Project
• Monthly Story Slams
• And a Calendar of upcoming events

The Philadelphia Poetry Collective’s News Page has info on open mic events and other readings.

The Philadelphia Youth Poetry Movement’s Events Page has readings, workshops, and poetry slams.

The Free Library of Philadelphia’s Monday Poets Series includes some open mic events along with readings from talented local and regional poets.

PhillyPoetry.com Calendar lists upcoming events in the greater Philadelphia area.

Poetry & Creative Writing About HIV/AIDS Online

These are websites where you can read poetry and creative writing related to HIV/AIDS, and some where readers can submit writing to be published online.

As with almost any topic, The Body.com has a wealth of resources, including:

• A Collection of HIV/AIDS-Related Poetry from around the web
• HIV/AIDS related poems from Poetry Month 2010
• Archived Work of The AIDS Poetry Project
• Archived work from Body Positive’s Poetry of HIV project

United Methodist Global Ministries publishes a collection of scripture, poems, prayers, reflections, journal excerpts, and other devotional resources that relate to HIV/AIDS ministry.

The Official AIDS Awareness Poets website features poetry about HIV/AIDS, and accepts submissions to be published on the website.

All Poetry is a website that allows users to submit poetry about any topic including HIV/AIDS, and includes an active community of users giving feedback on each other’s poems.  To sign up and submit poetry click here.

Online Info About Getting Published

The following websites are not HIV/AIDS-specific or Philadelphia-specific.  They are meant to be places to start for anyone interested in getting their writing published.

A general search on the web for tips on getting writing published will result in many commercial sites.  Here are a few publishing advice websites that aren’t trying to make money off users:

• eHow.com’s Get Your Writing Published
• First Writer.com
• Writer Magazine
• Writer’s Digest

To find a writing program or workshop, see the website of The Association of Writers & Writing Programs.

There are many books on creative writing and on getting published.  This is outside the realm of the AIDS Library’s collection, but click here to see Some Highlights of the Free Library of Philadelphia’s Collection.

The PEN American Center has a Prison Writing Program with details on:

• Its Annual Prison Writing Contest
• Words Over Walls: Starting a Writing Workshop in Prison, which can be downloaded free
• The Handbook for Writers in Prison, which can be ordered by or sent to any incarcerated person free

This blog post was written in the period following the IAC.  Some of the news stories and round-ups below may be removed or altered.  Please contact the AIDS Library if you need assistance.

The AIDS Library has many publications brought back from the International AIDS Conference 2012.  These cover a broad range: comprehensive reports from global organizations, focused reports on new prevention and treatment techniques, studies of drug policy in specific countries, special HIV/AIDS issues of academic journals, and much more.

We have compiled a complete list of Materials from AIDS 2012 in the AIDS Library (click that link for a PDF listing these materials by subject).  Anyone interested in global AIDS policy should have a look, as many of these publications are not available anywhere else in Philadelphia.

Highlights of these materials are currently in a special display in the AIDS Library.  The rest are available to be viewed in the Library.

For webcasts of all opening plenaries and many important workshops, see the Kaiser Family Foundation’s AIDS 2012 Wrap-Up.

For a general report, see the International AIDS Society’s:

• photo gallery
• YouTube page – including interviews with many of the major speakers
• daily bulletins with highlights of each days events

For a report on clinical research, see NAM AIDSmap’s extensive conference bulletins (available in English, Spanish, French, Portuguese, Russian, and Italian!)

For reports from U.S. government agencies, see AIDS.gov and the AIDS.gov YouTube page, including the video of speeches from Hillary Clinton, Anthony Fauci, Eric Goosby, and more.

There are a many other reports on the conference.  Here are some that might be of interest:

• Many voices from TheBody.com
• Many voices from the Prevention Justice Alliance
• Kevin Fenton and Akiba Solomon at The Root
• Local coverage from The Washington Post
• Legal coverage from TrustLaw
• Opinions from Health Affairs magazine
• Radio reports from Democracy Now

For reports on the We Can End AIDS mobilization that took place during the week of the conference, see:

• The Inquirer’s covereage
• A slideshow from TheBody.com and another from The Washington Blade

In the AIDS Library

The AIDS Library has a large collection of personal stories of folks living with HIV – and some not about HIV, but about related issues: coming out, addiction, incarceration, etc.  I’ve listed some highlights below.

After each listing, I made a demographic note about the author or subject, unless it was obvious from the title (and insofar as I could discern it – I’m not going to claim that I’ve read all these books myself).  I did this on the grounds that people are often interested in reading the stories of people with whom they identify personally.  This is of course not intended to pigeonhole any of the books below, or to assume that our clients have self-centered reading interests.  Rather it’s to help people get efficiently to the information they want.

*Indicates the book is new to the AIDS Library collection.

Autobiographies & Memoirs

• Blood Brothers, by Nancy Shaw – a mother and her HIV+ child
• Borrowed Time: An AIDS Memoir, by Paul Monette – a gay male couple
• City Boy: My Life in New York During the 1960’s and ‘70s, by Edmund White – a gay man
• Dancing in  Wheelchair: One Family Faces HIV/AIDS, by Fritz Mutti and Etta Mae Mutti
• *Days of Grace: a Memoir, by Arthur Ashe – an autobiography of the famous tennis player
• Eighty-Sixed, by David B. Feinberg – a gay man
• In the Absence of Angels, by Elizabeth Glaser – a transfusion-infected mother and her perinatally exposed child
• *I Have Something to Tell You: A Memoir, by Regan Hofmann – a straight woman (the editor of POZ magazine)
• *I Was Born This Way: A Gay Preacher’s Journey Through Gospel Music, Disco Stardom, and a Ministry in Christ, by Archbishop Carl Bean
• Living and Dying in 4/4 Time, by Paul Gallotta – a gay man
• My Unicorn Has Gone Away: Life Death, Grief and Living in the Years of AIDS, by Robert J.L. Publicover – a gay man
• One Boy at War: My Life in the AIDS Underground, by Paul A. Sergios – a gay man
• Penitent, with Roses: An HIV+ Mother Reflects, by Paula W. Peterson
• Remember to Breathe, by Dawn Breadon – a straight African-American woman
• Ryan White: My Own Story, by Ryan White – a transfusion-infected boy
• Sing Me to Heaven: The Story of  Marriage, by Margaret Kim Peterson – a serodiscordant straight couple
• To All the Girls I’ve Loved Before: An AIDS Diary, by J. W. Money – a straight man
• Tweeds, by Clayton R. Graham – a gay man
• You Get Past the Tears, by Patrcia and Hydeia Broadbent – an African-American mother and her HIV+ child

Biographies & Profiles

• Chicken Soup for the Prisoner’s Soul: 101 Stories, by Jack Canfield, Mark Victor Hansen, and Tom Lagana
• Common Heroes: Facing a Life Threatening Illness, by Eric Blau – a wide range of people, but each story separate
• *Dangerous Intimacies: Ten African American Men With HIV, by Christopher Lance Coleman and Christopher A. Brooks
• A Dance Against Time: The Brief, Brilliant Life of a Joffrey Dancer, by Diane Solway – a bisexual man
• *Fela: From West Africa to West Broadway, by Trevor Shoonmaker – a biography of the famous musician
• I Will Survive: The Story of 3 HIV-Infected Children, Their Families, and the Stigmatization They Faced, by Apichat Jariyavilas and others
• *Mapplethorpe: A biography, by Patricia Morrisroe – a biography of the famous photographer
• My Own Country: A Doctor’s Story of  Town and Its People in the Age of AIDS, by Abraham Verghese – many PWAs from one Tennessee town
• Our Stories, Our Songs: African Children Talk About AIDS, by Deborah Ellis
• *Pedro & Me: Friendship, Loss, and What I Learned, by Judd Winick – a profile of Pedro Zemora by one of his MTV Real World housemates
• *SistahFaith: Real Stories of Pain, Truth, and Triumph, by Marilyn Griffith
• Surviving AIDS, by Michael Callen – profiles of a range of people living with HIV/AIDS
• They Conquered AIDS: True Life Adventurers, by Scott Gregory and Bianca Leonardo – profiles of many PWAs
• *We Are All the Same: A Story of  a Boy’s Courage and a Mother’s Love, by Jim Wooten

Fiction

• Any Way the Wind Blows, by E. Lynn Harris – a straight African-American couple
• Beyond the Wind, by Rob N. Hood – a gay youth
• Bloodstream, by Joel Redon – a young straight PWA dealing with death
• Blue Pills: a Positive Love Story, by Frederik Peters – a serodiscordant gay couple
• *Christ Like, by Emanuel Xavier – a gay Latino man
• Closing Distance, by Jim Oliver – a gay man
• Facing It: A Novel of AIDS, by Paul Reed – a young gay man at the beginning of the epidemic
• Half-Way Home, by Paul Monette – “two brothers, one gay, one straight, one facing AIDS, the other on the run from his life”
• Love, Debra, by Fritz Hamilton – a child with an HIV+ parent
• *No More Tomorrows: Two Lives, Two Stories, One Love, by Rodney Lofton – a gay couple
• *Push, by Sapphire – an African-American teen girl (the inspiration for the movie Precious)
• *Snow White: A Survival Story, by Anna J. – a straight African-American girl (in Southwest Philly!)
• When Heroes Die, by Penny Raife Durant – a child and his HIV+ uncle

DVDs

Many of our movies have personal stories weaved in to their larger narratives, but these are a few that seem like they might be particularly inspirational.

• Amanda’s Story: What If You’re 15 and HIV-Positive – a short profile of an African-American Philadelphia teen
• The Cure – the friendship between two boys, one perinatally infected with HIV
• An Early Frost – a white gay man and his family
• Homeless to Harvard – based on a true story of a child of HIV+ drug addicts who a scholarship to Harvard
• Life Support – based on a true story of an African-American HIV+ woman
• One + One – “Two couples of mixed HIV status choosing to love in spite of fear”
• *Pedro – a biopic of gay HIV+ MTV Real World star Pedro Zemora
• *Peter Allen: The Boy From Oz – a biopic of gay HIV+ songwriter Peter Allen
• The Smith Family: One Family’s Uncommon Struggle to Keep Faith and Family – a Mormon family dealing with the HIV diagnoses of both father and mother
• Three Needles –  “a portrait of people around the world facing the harsh realities of the AIDS crisis”

The Library also has a binder of Role Model Stories collected by PHMC.  These are 1-2 page personal narratives about topics like HIV/AIDS, addiction, condom negotiation, pregnancy, and more.  They are housed in a binder that sits on the back desk of the library.

Personal Stories on the Web

The Body.com has a series of webpages collecting Inspiring Stories of People Affected by HIV/AIDS from all over the web.  It’s sorted by population:

• Women
• Men (sorted by sexual preference)
• Transgender People
• Young People
• Older People
• Families & Loved Ones

The Body.com also hosts

• This Positive Life, their own series of longer interviews (20-40 minutes) with people living HIV/AIDS
• From Me to You: Tips on Dealing With an HIV/AIDS Diagnosis, several dozen audio files of folks sharing their experience and offering advice about being diagnosed with HIV

POZ.com has a page of personal stories about being diagnosed with HIV, Think Positive, and a Spanish version, Piensa Positivo.

The website The Positive Project is a great collection of shorter video clips of people infected and  affected by HIV.  It has multiple videos of 85 separate people (and counting).  Users can sort by population, but also by topics such as “finding out,” “medical care,” “disclosure,” and “social life.”  If you wanted, say, videos of HIV+ African-American women talking about parenting issues, you would find 23 clips from 9 separate women!

There are many other websites with personal stories about living with HIV/AIDS.  Here are links directly to stories from:

• AVERT
• Guide4Living
• Revolution Health
• NAM Life
• Ecumenical Advocacy Alliance (personal stories of children living with HIV)
• AIDSvideos.org
• Experience Project
• AOL Health

Tell Your Story

Over the summer of 2010, the AIDS Library offered a pilot program of a class that we’re planning to offer in 2011: Digital Storytelling.  Five people told a piece of their personal stories using words and pictures.  You can see the results at the AIDS Library YouTube page.  If folks would like to get on a list to be included in these classes, they should can contact the Library (215-985-4851) and fill out a registration form.  They’ll be contacted as soon as the class is available.

The following websites allow people to submit their story for publication.  Each organization has its own requirements, though, so folks should check these links to see what needs to be done to get published.

• AVERT
• NAM Life
• Revolution Health
• Experience Project

A few Philadelphia FIGHT staff attended the International AIDS Conference (IAC) in Vienna last July.  They brought back a lot of interesting materials, which will be available in the AIDS Library.

They include all the official IAC materials, as well as position papers and reports by organizations all over the world working on HIV/AIDS.  Some are big books, some are short fact sheets, some are DVDs and other multimedia.

All of the material is available in the AIDS Library starting this week.  Stop by any time we’re open – Monday through Friday, 1pm to 5pm – and catch up on the global response to the epidemic.  Just be aware that the items can be viewed and copied in the Library, but that they can’t be checked out.

Below is a list of the materials, sorted by topic.  Under that are links to videos and other info about the IAC, as well as some news and opinion reports on it.

IAC Materials in the AIDS Library

CONFERENCE MATERIALS

• the conference program book
• two-volume collection of abstracts of all sessions
• booklets of program activities and program supplements
• booklet of “Key Areas of Special Interest to People Living With HIV”
• conference CD-ROM
• UNAIDS Outlook – a big magazine-style collection of articles, interviews and fantastically designed graphs
• UNAIDS Library, a CD-ROM by UNAIDS

TREATMENT

• Antiretroviral Therapy for HIV Infection in Infants and Children: Towards Universal Access, World Health Organization
• Drug Control and Access to Controlled Medicines: A Global View map, by Human Rights Watch
• TAG 2010 Pipeline Report, by Treatment Action Group

PREVENTION

• Do Well and Scale Up Comprehensive HIV Programmes: 2010, a CD-ROM by the International Federation of Red Cross and Red Crescent Societies
• Mandatory Premarital HIV Testing: An Overview by the Open Society Institute
• Woman and HIV Testing: Policies, Practices, and the Impact on Health and Human Rights, by the Open Society Institute
• Standards of Prevention in HIV Prevention Trials: Consultation Report and Recommendations, by the Global Campaign for Microbicides
• All About Condoms, an interactive CD by the UN Populations Fund
• What Works for Women and Girls: Evidence for HIV/AIDS Interventions Executive Summary, by the Open Society Institute
• Cervical Cancer Action Planner, a CD-ROM by the Program for Appropriate Technology in Health
• Avahan-The India AIDS Initiative: The Business of HIV Prevention at Scale, by the India AIDS Initiative
• Global Reach: How Trade Unions are Responding to AIDS, by the International Labour Organization and UNAIDS

MICROBICIDES

• From Promise to Product: Advancing Rectal Microbicide Research and Advocacy, by the International Rectal Microbicide Advocates
• Microbicides: Ways Forward, by the Alliance for Microbicide Development
• Hope Against HIV: Microbicide Trials in Your Community, a video by Population Council and Paw Print Productions

LIVING WITH HIV/AIDS

• More Than Just a Roof Over My Head: Housing for People Living with HIV/AIDS Around the World, by the National AIDS Housing Coalition
• Principles of Physical and Cognitive Rehabilitation in HIV Disease, by Dr. Will Chegwiggen, et al
• Growing Older with the Epidemic: HIV and Aging, by Gay Men’s Health Crisis
• Recommendations Concerning HIV and AIDS and the World of Work, by the International Labour Office
• An ILO Code of Practice on HIV/AIDS and the World of Work, by the International Labour Organization
• Heart of a Hero, a comic set in Trinidad and Tobago about HIV-related stigma
• A Silence is Broken, a book of HIV-themed poems by Gary Gumbs

SUBSTANCE USE [see also under “PRISON,” below]

• Drug Policy Guide, by the International Drug Policy Consortium
• International Harm Reduction Resources CD-ROM, by the International Harm Reduction Development Program
• Illegal Drugs: The Problem is Prohibition, The Solution is Control and Regulation, by the Transform Drug Policy Foundation
• After the War on Drugs: Blueprint for Regulation, by the Transform Drug Policy Foundation
• Syringe Exchange Programs Around the World: The Global Context, by Gay Men’s Health Crisis
• The Adventures of Methadone Man and Buprenophrine Babe – a comic published by the Open Society Institute
• Know Your Drug War, by the Transform Drug Policy Foundation

PRISON

• Sentenced to Stigma: Segregation of HIV-Positive Prisoners in Alabama and South Carolina, by the American Civil Liberties Union
• Advancing the Sexual and Reproductive Health and Human Rights of Prisoners Living With HIV, by the Global Network of People Living With HIV
• China: Where Darkness Knows no Limits – Incarceration, Ill Treatment and Forced Labor as Drug Rehabilitation in China, by Human Rights Watch
• An Unbreakable Cycle – Drug Dependency, Mandatory Confinement and HIV/AIDS in China’s Guangxi Province, by Human Rights Watch
• Skin on the Cable – The Illegal Arrest, Detention and Torture of People Who Use Drugs in Cambodia, by Human Rights Watch
• Barred from Treatment – Punishment of Drug Users in NY State Prisons, by Human Rights Watch

SEX WORK

• Arrest the Violence: Human Rights Abuses Against Sex Workers in Central and Eastern Europe and Central Asia, booklet and CD-ROM by Sex Workers Rights Advocacy Network
• Sex Work, HIV/AIDS and Human Rights in Central and Eastern Europe and Central Asia, by the Central and Eastern European Harm Reduction Network
• Multilanguage Information Materials for Sex Workers CD-ROM, by Tampep International Foundation: European Network for HIV/STI Prevention and Health Promotion among Migrant Sex Workers
• Sex Workers’ Rights – a magazine-style collection by International Committee on the Rights of Sex Workers in Europe
• Outlines for Multisectorial Work with Transgender Populations, Human Rights, Sex Work and HIV/AIDS, by Ximena Salazar L. & Jana Villayzan A.
• Taking Care of Yourself: A Guide for Trans Sex Workers, by the Sex Worker Education and Advocacy Task Force

LAWS & RIGHTS

• HIV/AIDS and the Rule of Law: Rights Here, Right Now, by the American Bar Association
• HIV/AIDS and Human Rights, by Human Rights Watch
• HIV/AIDS & Human Rights: A Resource Guide, by the Open Society Institute
• Toolkit: Scaling Up HIV-Related Legal Services, by UNAIDS, the International Development Law Organization, United Nations Development Programme
• The Impact of HIV-Related Restrictions on Entry, Stay, and Residence: An Annotated Bibliography, by the UNAIDS International Task Team on HIV-Related Travel Restrictions
• Human Rights & HIV/AIDS: Now More Than Ever, by UNAIDS
• “Please, Do Not Make Us Suffer Any More. . .”: Access to Pain Treatment as a Human Right, by Human Rights Watch
• Report of the International Task Team on HIV-Related Travel Restrictions, by UNAIDS

DISABILITY

• Disability and HIV/AIDS: A Short Film About the Situation of Person with Disabilities and Their Struggle Against HIV/AIDS in Uganda, by the Disabled People’s Organisations Denmark
• Disability and HIV/AIDS factsheet, by the Disabled People’s Organisations Denmark
• A Glimpse at Handicap International HIV and AIDS Initiatives, by Hadicap International

LEISURE READING [The most fun items of the whole lot, I thought]

• The ACT UP Paris 20^th Anniversary book – in French, but over half pictures.  A beautifully constructed book, brilliantly titled “We Regret to Announce the 20^th Anniversary of ACT UP Paris.”
• Mosotos News: More Talk from the Vienna AIDS Conference – an Onion-meets-Adbusters satirical critique of the IAC by the group Advocacy to Control TB Internationally

IAC Info on the Web

The IAC 2010 website has digital copies of conference programs and abstracts, info on presenting organizations, final statistics for the conference, photos, and more.

The Kaiser Family Foundation published Online Coverage of the IAC, including videos and transcripts of presentations, daily reports from Science magazine, podcasts, and more.

The Vienna Declaration on the Global War on Drugs can be read and signed online.

Many organizations and bloggers have published their thoughts on the IAC.  Here are a few:

• The International AIDS Vaccine Initiative
• The National AIDS Treatment Advocacy Project
• Project Inform
• Take a Number (in Vienna) – bloggers organized by Health GAP
• The Guardian’s Katine Chronicles Blog
• LGBT POV
• Intellectual Property Watch

Health GAP also collected Press Coverage of the IAC.

IN THE AIDS LIBRARY

We have a lot of good resources on Recovery in the library, including:

BOOKS

*Mindful Recovery: A Spiritual Path to Healing From Addiction, by Thomas Bien and Beverly Bien

*The Life Recovery Workbook: A Biblical Guide through the 12 Steps, by Stephen Arterburn and David Stoop

*Reclaiming Youth Life: The Gay Man’s Guide to Recovery from Abuse, Addictions, and Self-Defeating Behavior, by Rik Isensee

*The Politics of Crystal Meth: Gay Men Share Their Stories of Addiction and Recovery, by Kenneth Cimino

*How It Works: Recovering Citizens in Post-Welfare Philadelphia, by Robert Fairbanks II

DVDs

*Addiction: Why Can’t They Just Stop – a 14-part HBO series (on four discs)

*Living in Recovery: Getting Gut-Level Honest

*Understanding Addiction

*God as We Understand Him: A Film About Faith and the 12-Step Movement

GETTING IN RECOVERY

[IN PHILADELPHIA]

Individuals with Medicaid coverage can get into recovery treatment through Community Behavioral Health.  Call CBH’s Mental Health and Substance Use Crisis Referral  24/7 hotline (888) 545-2600, or see the CBH website to read more about what they offer.

Individuals with no medical coverage can get into recovery treatment through Behavioral Health Special Initiative.  Call BHSI at 215-546-1200 or 215-546-6435, or see the BHSI website to read more about what they offer.

[NOT IN PHILADELPHIA]

The U.S. Department of Health and Human Services (HHS) Substance Abuse and Mental Health Services Administration’s (SAMHSA) operates a hotline for alcohol and drug treatment referral, available in English and Spanish: 1-800-662-HELP (4357), and a Substance Abuse Facility Locator for finding treatment programs anywhere in the country.

*Click here to see all the sites SAMHSA lists in Philadelphia.

*Click here to read SAMHSA’s pamphlet on how treatment programs can help “With the Criminal Justice System” and “With the Rest of Your Life.”

Other hotlines worth having at the ready:

• a tool to Find a Meeting by city, state, or zip code
• an explanation of What Happens at an NA Meeting
• a huge amount of NA Literature, including the full “Basic Text,” many booklets, pamphlets, and group readings.  (That link is to the English texts – see also NA Literature in 38 Different Languages.)

INFORMATION FOR PEOPLE IN RECOVERY AND THEIR SUPPORTERS

The website of Narcotics Anonymous has a lot of information, including

• a tool to Find a Meeting by city, state, or zip code
  an explanation of What Happens at an NA Meeting
• a huge amount of NA Literature, including the full “Basic Text,” many booklets, pamphlets, and group readings.  (That link is to the English texts – see also NA Literature in 38 Different Languages.)

The website of Alcoholics Anonymous has lots of information, including

• A tool to Find a Meeting by zip code
• A Q&A to decide Is AA For You?
• Literature in the form of the full-text of books (including the “Big Book”) and pamphlets.

See also comparable information on the websites of:

• Heroin Anonymous
  
• Cocaine Anonymous
  
• Crystal Meth Anonymous (see also Test Positive Aware Network’s Crystal Meth Recovery guide)
  
• Pills Anonymous
  
• Marijuana Anonymous
  
• Benzodiazepine Anonymous
  
• Dual Recovery Anonymous
  
• All Addicts Anonymous

Related to the HBO series that we have in the library (mentioned above), the National Institute on Drug Abuse has partnered with HBO to create a website, Addiction, with some very readable resources and some short videos.  This resource might be good for a person new to recovery, or for their friends or family.  Points of interest on this site include:

• Short essays on What is Addiction Treatment?, What is Detox?, and How to Select a Good Treatment Provider.
• An introduction to Brief Intervention and a longer piece on CRAFT: An Alternative to Intervention
• An explanation of Drug Court, including how to access Drug Court.
• A section on Aftercare and Avoiding Relapse.
  
• Addiction and the Brain’s Pleasure Pathway: Beyond Willpower (an essay that could be used to reply to the question, “Why don’t they just quit!?”)
• A primer on Fighting Discrimination Against People in Recovery from Alcoholism and Drug Addiction (with information on relevant sections of the Americans with Disabilities Act).

The long-time addiction counselor and researcher William White has a website with an extensive Recovery Toolkit, with lots of practical short readings, checklists, reading lists, and the like.

To learn more about the relationship between substance abuse and mental health problems, see

• The National Library of Medicine’s MedlinePlus page on Dual Diagnosis
• The Depression and Bipolar Support Alliance’s page on Dual Diagnosis and Recovery (with a Q&A addressed to the person in recovery)

FOR PROVIDERS

SAMHSA publishes Evidence-Based Practices: Shaping Mental Health Services Toward Recovery

The Addiction Technology Transfer Center Network has a large library of online info about addiction and recovery, written for health professionals.  It includes subsections on Veterans, Women, Prescription Drug Abuse, Co-Occuring Disorder, and more.

The Addiction Treatment Forum reports on substance abuse and addiction therapies, research, and news, with a particular emphasis on opioids/methadone.

The UCSF’s HIVInSite website has a collection of journal articles, best practice guidelines, slide sets, and more on Substance Abuse and HIV/AIDS.

To find out about drug interactions between HIV meds and recreational drugs, see

• AIDS Education and Training Center’s page on Recreational Drugs and ARTs (with a table of drug interactions)
• New York/New Jersey AIDS Education Training Center’s Recreational Drugs and HIV Antiretrovirals: A Guide to Interactions for Clinicians

OTHER

Friendly employers could read the Mid-Atlantic American’s With Disabilities Act office’s guide on Employing and Accommodating Individuals With Histories of Alcohol or Drug Abuse (excerpted at TheBody.com).

As with so many topics, The Body.com does a great job of collecting “News & Views” on Substance Use & HIV/AIDS and of organizations for Getting Help for Substance Use (many of these organizations are mentioned above).

To learn about advocating for recovering people’s rights, see the organization Faces & Voices of Recovery.  Their website includes:

• A Recovery Bill of Rights, and
  
• Publications, some written by people in recovery

HIV/AIDS Statistics by Region

PHILADELPHIA

HIV/AIDS statistics for Philadelphia are collected by the AIDS Activities Coordinating Office (AACO).  AACO’s statistics page contains:

• Graphs and maps of demographic trends

• Instructions and contact information for specialized data requests

• The most recent epidemiological report for Philadelphia – This is the most detailed information AACO publishes; scroll down to the bottom of the page to access it, or go to it directly, here.

PENNSYLVANIA

For Pennsylvania statistics, including statewide reports, regional reports, and specialized data requests, see the PA Department of Health HIV/AIDS Annual Summary & Other Reports and its Integrated Epidemiologic Profile of HIV/AIDS in Pennsylvania.

For more Pennsylvania statistics (with a particular emphasis on HIV/AIDS funding), see the Kaiser Family Foundation’s State Health Facts webpage on PA and HIV.  The State Health Facts page also allows you to compare PA to other states and to find information on other health issues.

NATIONAL

For US-wide statistics, see the U.S. Center for Disease Control and Prevention (CDC) website on HIV/AIDS Statistics and Surveillance.

You can also make data requests from the CDC, at their Contact CDC page.

For historical study of the epidemic, see Past Issues back to 1982 of the CDC Surveillance Report.

The Kaiser Family Foundation also has lots of good statistical analysis at their HIV/AIDS in the US webpage.  There isn’t one single statistics page, but if you use their “sort” tool, at the bottom of the page, you can sort by Document Type: Charts & Data and Subtopic: HIV/AIDS in the US.

GLOBAL

The Joint United Nations Programme on HIV/AIDS, UNAIDS, has a webpage on HIV Data with:

• Its most recent report, 2008 Report on the Global AIDS Epidemic (Almost all statistical accounts of the worldwide epidemic use this report for their raw data)

• The most recent AIDS Epidemic Update (which explores new findings and trends)

• Fact sheets on The Epidemic by Country

The World Health Organization (WHO) has a page of Data and Statistics.  Be aware that many reports and data sets here are identical to those of UNAIDS linked above, as WHO is a co-sponsor of UNAIDS.

The U.S. Census Bureau has its own webpage of Global HIV/AIDS Surveillance.  This includes a link to the Census Bureau’s HIV/AIDS Surveillance Database, which includes maps, summary tables, and the option to generate custom reports.

The University of California, San Francisco’s HIV InSite has a page on the epidemic by Counties and Regions. The basic data is drawn from the UNAIDS report linked above, but each page is also filled with links to reports, organizations, and other resources on that county or region.

HIV/AIDS Statistics by Population and by Risk Behavior

For U.S. statistics by age, race, and transmission category, see the Center for Disease Control and Prevention (CDC) webpage on Basic Statistics.

For more detailed reports on different populations and risk behaviors, see the CDC’s Surveillance Factsheets.

For statistics on HIV/AIDS disparities among different populations, see the Office of Minority Health & Health Disparities webpage, Eliminate Disparities in HIV and AIDS.

For collections of resources on 22 different populations, many with statistical information, see HIV Insite’s Population Links.

For a collection of reports on youth, see the CDC’s webpage on Healthy Youth: Sexual Risk Behaviors.

For populations worldwide, see the Joint United Nations Programme on HIV/AIDS’s webpage on Key Populations.

Information About HIV/AIDS Statistics

For definitions of HIV/AIDS terms and abbreviations, see the U.S. Department of Health and Human Services AIDSinfo Glossary.

For assistance reading and getting the most out of HIV/AIDS statistics, the U.S. Center for Disease Control and Prevention (CDC) has webpages on:

• The basics of HIV/AIDS Surveillance
• Technical Notes on surveillance

• Explaining the 15% Increase in HIV Diagnoses from 2004-2007

The Kaiser Family Foundation has some resources for better understanding HIV/AIDS statistics:

• A narrated slideshow on Understanding HIV/AIDS Surveillance Data in the United States
• A report on Understanding the New UNAIDS Estimates

• A narrated slideshow on The HIV/AIDS Epidemic in the United States (an introductory survey with a strong emphasis on statistics)

People sometimes have statistical questions about how likely it is to become infected with HIV from a certain behavior.  Columbia University’s Go Ask Alice! Service has a webpage, Confused About HIV Transmission Statistics that helps explain why these statistics can’t be precisely calculated.