Welcome
CHLP's Executive Director welcomes you to its inaugural Briefing Paper, highlighting ongoing efforts and new initiatives
As I write this, we are beginning the winter holiday season and the Center for HIV Law and Policy is almost three years old. With the launch of our newsletter, we hope to keep you informed of our progress as we build the Center by continuing to add to the resources and strategies that support needed advocacy nationwide.
I am proud of our small staff and what we have accomplished in such a short period of time. Creation of the Center for HIV Law and Policy reflects belief in the need for a national center that would collect and feature the work of many advocates and organizations, and democratize access to the best of existing legal and policy resources. We have launched not only a multi-issue resource bank but a variety of advocacy initiatives that build on and support the needs and talents of local leaders and advocates from multiple disciplines and perspectives.
You can read about several of our exciting new initiatives in these pages. Teen SENSE—a project that will make comprehensive sexual health and HIV services a core part of basic health services provided to youth in detention and foster care facilities—is the first national effort of its kind. It has fostered an impressive cross-disciplinary team of collaborators and supporters that includes the leadership of the New Jersey Child Advocate and the Dean of the New Jersey Medical School. Our work to support activists in holding the BBC accountable for its broadcast of a factually and scientifically unsupported “documentary” that painted pediatric AIDS doctors and researchers as murderers is central to our mission to ensure that vulnerable patients have access both to care that reflects the highest standards and the accurate information necessary to allow informed decision-making.
We have conducted dozens of trainings for doctors, nurses and other health and human service workers on HIV confidentiality, testing, the rights of HIV-positive women and adolescents, and the legal issues implicated by internet-based HIV prevention and outreach efforts. Our staff has supported and strategized with community organizations on advocacy trainings for people with HIV that give them the confidence to raise their own voices for sensible policies and fair treatment. We have provided resources and strategy suggestions to folks ranging from community activists to state legislative and executive branch staff.
One particularly hot topic on which CHLP has been significantly involved is the movement to change HIV-specific testing and consent laws that safeguard people with HIV and their right to informed, consensual diagnosis and care. We have worked with advocates from New Jersey to California battling HIV testing bills that would turn back the clock on basic patient rights to information and true consent. Our proposal for a set of national HIV testing principles brought together co-authors from the AIDS Foundation of Chicago and Lambda Legal, and the contribution and endorsement of more than 70 AIDS service, medical, religious and legal organizations guidelines that reflect broad consensus among people with HIV and their advocates and care providers on the role of human rights in achieving public health goals.
We have worked with the Columbia University’s Center on Medicine as a Profession and the New York Academy of Medicine in developing a policy paper in response to New York City Department of Health Proposals to increase data collection for people with HIV while diluting explicit protections for consent, informed decision-making and privacy. All of our work reflects CHLP’s emphasis on collaboration, both among established AIDS community stakeholders and with natural allies outside this community, to make an impact on policies that matter to those living with HIV.
CHLP has worked hard to equalize access to useful legal and policy information, and increasingly we see our analysis of current legal issues featured in the mainstream media, as well as national internet podcasts, websites, newsletters, and in a peer-reviewed journal, Clinical Infectious Disease. It is no exaggeration to say that none of this would be possible without you. The support of our individual, corporate and foundation donors is the fuel that keeps the lean machine of CHLP moving forward.
I look forward to your continued input as we work to eliminate the inequalities and injustice—and simple lack of accurate information—that perpetuate the HIV epidemic and the stigma that continues to infuse it.
Sincerely,
Catherine Hanssens
Executive Director
CHLP Wins BBC Apology
BBC Apologizes for Bias and False Allegations,
Admits that Video about NYC Drug Trials is Wrong
and Misleading
The British Broadcasting Corporation has investigated and affirmed major complaints brought by the Center for HIV Law and Policy and AIDStruth.org that “Guinea Pig Kids,” an independent video aired on the BBC in 2004, made false and misleading claims about pediatric clinical trials of AIDS medicines that included foster children with HIV/AIDS living at New York City’s Incarnation Children’s Center (ICC).
The video, the BBC agreed, wrongly implied that the HIV-related medications that were being studied were futile and dangerous, and it intentionally ignored their life-saving efficacy. The BBC further acknowledged that the video was fundamentally biased towards the views of “HIV denialists,” who don’t accept the scientific evidence that HIV exists and that it causes AIDS. Fraser Steel, the Head of Editorial Complaints, concluded that these are serious breaches of the standards set out in the BBC’s Editorial Guidelines concerning accuracy and impartiality, and he extended an apology for the deficiencies in the program and the associated website material. The affirmation of the complaint is very important because the credibility of the BBC had lent undeserved legitimacy to false accusations against ICC and to the disinformation about HIV/AIDS, clinical trials and antiretroviral treatments that is spread by HIV denialists.
The BBC’s retraction and apology followed months of intensive investigation in response to repeated complaints filed by AIDS scientists, doctors and activists, who denounced the video’s attack on Incarnation Children’s Center as a hoax designed to mislead vulnerable communities about HIV/AIDS. The film and the associated web pages alleged that healthy African-American and Latino children at ICC, a specialized care facility for children with HIV/AIDS in New York City, were harmed and even killed by bizarre and unjustified medical experiments involving lethal drugs, and that if their parents or guardians objected to the experiments they lost custody of their children. The makers of the film invented these charges against ICC, and exploited African-Americans’ real and historically-based fears of abuse by medical research and bullying by child welfare agencies. The false allegations about sinister medical experiments on foster children were constructed to take advantage of those real concerns in order to spread deadly misinformation about HIV in the communities most devastated by AIDS. These allegations about ICC have become something of an “urban legend,” untrue but widely believed, mainly because people trusted the BBC. In fact, ICC and the more than 30 other agencies in New York that took part in the trials used the clinical trials framework to make life-saving medications, already approved for adults, available to children with HIV who otherwise would have died.
The film was written by, produced by, and featured interviews with HIV “denialists,” but it never identified them as people whose beliefs and claims contradict evidence and knowledge that scientists, doctors, and the communities most affected by AIDS have acquired about HIV and its treatment over the last 25 years. The AIDS drugs at issue, which were already approved for adults or for non-AIDS pediatric uses, were being tested to determine the safest and most effective dosages for children living with HIV. Some ICC patients were among those enrolled in the trials as the only way to get these potentially life-saving medications.
CHLP is committed to equal access to treatment, including through clinical trials, for all children and adults with HIV, and to ensuring that participants in clinical trials are fully informed and protected.
Read the BBC’s 12-page letter.
A Vital Resource
CHLP’s on-line Resource Bank provides virtual file cabinet of essential resources on dozens of issues for easy research and use
As many of you know, the Center for HIV Law & Policy (CHLP) is continuing to build its Resource Bank of pleadings, briefs, policy recommendations, sample legislation, analyses of medical and scientific research, and other types of materials on dozens of issue areas. The Resource Bank is set up much like a virtual file cabinet—no fuss, no muss and no distracting graphics—for you to electronically reach in and pull out what you need when you need it. Posted materials have been reviewed, synopsized and contextualized for easier research and use. This summer, CHLP has added materials to almost every category of our Resource Bank, including:
- Employment
- Human Rights
- Public Benefits Access
- Prevention & Sexual Health
- Prisons & Jails
- Testing
You will find materials such as sample complaints for denial of medical care and termination of employment on the basis of HIV status; briefs and court decisions on the need to consider AIDS medication side effects and resistance in determining HIV/AIDS disability benefits eligibility; and essential forms for Social Security disability benefits applications on the basis of HIV-related disability. We also have a wealth of materials on current issues such as the ongoing debate about HIV testing laws and policy.
Please check out the Resource Bank at www.hivlawandpolicy.org/resources. Tell us what you think, including what you think might make it better. Tell us what else you would like to see in your on-line file cabinet.
Have something you are willing to share and want to be listed as a contributor on our website? If you have briefs, pleadings, legislative testimony, policy analysis or articles you think others should know about, please contact us at info@hivlawandpolicy.org.
Thanks from your colleagues at CHLP.
Making Sense for Teens
Advocating for access to comprehensive sexual health care and quality HIV prevention for youth in foster care and the juvenile justice system
Most adolescents who are confined in foster care and juvenile justice facilities are from the vulnerable communities and populations most affected by HIV/AIDS. They are poor, Black and Latino, and survivors of gender-based violence. These youth, wherever they are on the spectrum of sexual orientation and gender, are at great risk of HIV and other STIs, and yet they are systematically denied access to appropriate and effective HIV prevention, sexual health education and sexual and reproductive health care. To ensure that these youth have consistent access to quality sexual health education and HIV prevention information, policymakers must recognize that youth in state custody are legally entitled to these services and that failure to provide them has serious public health consequences.
All youth in state custody have the right to comprehensive sexual health care that includes both medical services and scientifically-sound sex education and HIV prevention counseling. United States federal courts long have recognized a constitutional requirement that state officials provide services for the health, safety and well-being of children in their custody.
The right of juveniles to comprehensive sexual health care and education also is central to their right to make decisions about and conduct intimate personal relationships. Federal case law also is clear that especially in the areas of reproductive health—pregnancy, abortion and sexually-transmitted disease prevention—juveniles hold fundamental privacy rights to choose their care despite their age.
Nonetheless these and other legal protections for children in state custody have not translated into specific, uniform policies and guidelines needed to ensure that these rights are a reality. To the contrary, sexual health care programs exist only in a very limited fashion in a relative handful of facilities. In most cases they exist at all only through the intercession of concerned individuals working outside of these institutions.
The Center for HIV Law and Policy’s Teen SENSE initiative advances the principle that respect and accommodation for all gender expression and sexual orientation is central to HIV prevention and sexual health. Comprehensive sexual health care for juveniles in state custody preserves health, reduces HIV and STI transmission risk, and increases the odds that severely at-risk youth will secure the essential skills and understanding that enhance self-respect and tolerance of difference, and encourage ongoing HIV/STI testing and care.
Teen SENSE is a multidisciplinary project that has engaged experts in adolescent medicine, sex education, foster care and juvenile justice to develop a complete advocacy model and then coordinate its implementation. We have developed a legal “roadmap” and model guidelines for comprehensive sexual health care and HIV prevention to support local leaders in bringing this central part of health care to youth detention programs in their communities.
Teen SENSE establishes a powerful legal and human rights framework and the on-the-ground alliances that we believe eventually will make meaningful, appropriate, non-judgmental sexual health care and real HIV prevention a mandated service for youth in confinement around the country.
WARC: Expanding CHLP’s Resource Bank
Response to an increasing need for advocacy models to enhance options and rights for women with HIV/AIDS, who represent the majority of new AIDS cases
The heart of CHLP’s work is the development of its national legal and policy resource bank and advocacy strategies for use by people with HIV and their advocates. A new focus in this work is the creation of a Women’s Advocacy Resource Collection (WARC). Our goal is to build the capacity of women with HIV and their representatives for effective advocacy, wherever they are in the United States. We will do this by amassing in one web-based, accessible location a broad array of materials—model legislation, case law and legal analysis, public health policy, and analyses of the science and medicine informing it all—that affect women living with HIV at local, state and national levels. We expect that these resources will enable advocates and activists nationwide and, potentially, around the world to advance the rights and health of women living with HIV/AIDS.
Women of color represent the majority of new AIDS cases, have been affected disproportionately by the epidemic, and fare more poorly than men on several important health care access and quality measures. For example, women are less likely to be hospitalized when they are seriously ill or to receive combination antiretroviral therapy. Women with HIV/AIDS also face significant social and financial barriers in getting care, and are far more likely than men to postpone their own medical care due to sickness, child care demands or lack of transportation. Studies show that many HIV affected women also avoid health care due to misinformation about both HIV and the drugs used to treat it, denial about the importance of health care, distrust of government agencies that sponsor health and service programs for those in need, and intense community-level HIV-related stigma. Racial disparities in AIDS care have actually widened since the introduction of effective drug therapies in 1996, with the greatest disparities found among women of color.
While there is great diversity of background and experience among women with HIV across the country, statistically they are more likely to be poor and women of color. There also are common denominators of experience for many women with HIV. For example, one recent study found that women’s immediate reactions upon learning that they are infected with HIV typically are devastation, shock, and indignation, and that for many women long-term responses included depression, escalated drug and alcohol use, and vulnerability to suicide. For the women in this study, it typically took many months, even years, before women could move beyond these response patterns.
The WARC initiative is our response to an increasing need for advocacy models that help to alter these patterns by clarifying and extending women’s options and rights. Our experience tells us that it is particularly important to address the needs and rights of women who are pregnant or are mothers, who are incarcerated or who have a history of substance abuse. Their need for appropriate and comprehensive access to care, for full and accurate information about their HIV diagnosis and treatment options, and for protection of rights to autonomy in personal and parental health treatment decision-making, frequently goes unaddressed.
For more information about WARC—or to talk about how you might get involved—please contact Ashley Burczak at aburczak@hivlawandpolicy.org.
Prevention Justice Mobilization
Because HIV is not just a disease. It’s proof positive
of injustice!
CHLP has been very active with the coalition that is organizing the Prevention Justice Mobilization. The PJM is a series of HIV-related prevention events and actions around the country from November 1 through December 15, 2007, that are designed to highlight the complex grounding of the HIV epidemic in systems of social and economic injustice. Prevention Justice calls for HIV prevention strategies that don’t just target individual behaviors or specific high-risk groups, but also address the underlying issues and structures that put people at risk and limit their ability to protect themselves and their communities. These include homelessness, federal and state policies that deny people access to clean needles and condoms, mandatory sentencing laws, ideologically-driven abstinence-only curricula, poverty, misinformation about the cause and treatment of HIV, racism, gender inequality, punitive testing and surveillance policies, and the stigma associated with same-gender sexual contact.
Prevention justice activists believe that the best way to prevent HIV/AIDS is to ensure that all people have the economic, social, and political power and resources to make healthy decisions about their lives and sexuality for themselves.
The events and actions to date have ranged from local events around the country across the range of prevention justice issues, including those on World AIDS Day (December 1), to events at the National HIV Prevention Conference in Atlanta on December 2-5. Please see www.preventionjustice.org for more information and to endorse the PJM.
Testing Principles
CHLP leads the call for clarity
The Center for HIV Law and Policy leads the way in calling for a clear set of principles to guide discussions and implementation of expanded HIV testing programs. The result: Expanding the Availability and Acceptance of Voluntary HIV Testing: Fundamental Principles to Guide Implementation.
Earlier this year, in the middle of community discussions about recent federal proposals to scale back patient rights to information and consent to HIV testing, CHLP decided that we needed more than criticism—we needed an affirmative statement of central principles to guide proposals to expand HIV testing in this country. The resulting 15 principles, drafted by the AIDS Foundation of Chicago, the Center for HIV Law and Policy, and Lambda Legal, and endorsed by a coalition of human rights, medical, HIV service, and related organizations from across the country, are meant to inform communities and policy makers working on expanded testing. They are a tool to help stimulate conversations, planning, and community input. We hope that they will guide implementation discussions, and call on stakeholders to consider treatment and care issues that should be linked to testing. They were conceived in the belief that everyone—consumers, community leaders, ASOs, physicians, nurses, public health, etc—has a stake in achieving an expanded testing paradigm in a thoughtful and meaningful way that produces long-term benefits for those with HIV. The fundamental elements—that HIV testing must always be informed, voluntary, confidential, and supported by health care and other services, and that it is always most effective when offered by someone trusted and trustworthy—apply to all persons, including pregnant women, youth and the incarcerated.
CHLP believes that HIV testing is a medical diagnostic tool that should be fully informed, fully consensual, and full funded. To review the testing principles and the more than 70 organizations and individuals who have endorsed them, please visit our dedicated website, www.hivtestingprinciples.org.
Articles on HIV Testing Online
The newly published edition of Clinical Infectious Diseases contains a special HIV supplement on HIV diagnosis, prevention and treatment. Of interest are several articles on testing, including those contributed by CHLP, Dr. David Holtgrave and David Munar; as well as articles addressing insurance and infrastructure issues.
- Legal and Ethical Implications of Opt-Out HIV Testing
- Table of Contents, Opportunities for Improving the Diagnosis of, Prevention of, and Access to Treatment for HIV Infection in the United States
CHLP’s Executive Director Catherine Hanssens was recently interviewed by Bonnie Goldman for The Body, an HIV and AIDS resource Web site. Hanssens was featured in the October 2007 edition of This Month in HIV to address the topic of “Sex, Privacy and the Law When You’re HIV Positive.”
In addition to the generous financial and spiritual support provided by the Center for HIV Law and Policy’s many individual donors and friends, our work has been possible through the significant support of the following funders:
Arcus Foundation Gay and Lesbian Fund
Broadway Cares/Equity Fights AIDS
The Callidon Group
Ford Foundation
Fund for the City of New York
Jewish Communal Fund
Levi Strauss Foundation
M.A.C. AIDS Fund
Thomson-West Corporation
CHLP’s Resource Bank has benefited greatly from the work of the following organizations:
American Civil Liberties Union (ACLU)
AIDS Foundation of Chicago
American Bar Association, AIDS Coordinating Committee
Association of Nurses in AIDS Care (Adele Webb)
Center on Budget & Policy Priorities
Jay Dobkin, M.D.
Empire Justice Center (LJ Fisher)
Equal Employment Opportunity Commission
The Guttmacher Institute
The HIV Law Project
David Holtgrave, Ph.D.
Housing Works (Matthew Carmody)
Hyacinth AIDS Foundation
Kaiser Permanente (Michael A. Horberg, MD)
Lambda Legal (Jon Givner)
Art Leonard, J.D., Professor of Law, NY Law School & editor, Lesbian Gay Law Notes
National Coalition for Sound Sexuality Education (NCSSE)
National Senior Citizens Center (Gerry McIntyre)
Public Defender of LA County (Michael Judge, Esq.)
Open Society Institute
Whitman Walker Legal Clinic
The following individuals have completed legal internships with CHLP:
Monica Asher, Brooklyn Law School
Alex Espinoza, Fordham Law School
Chris Kibler, Brooklyn Law School
Claire Ruckert, Brooklyn Law School
Kate Chaltain, Fordham Law School
Mark Guest, St. Louis University School of Law
Elliot Turner, Brooklyn Law School
Donald Huppert earns special thanks for the considerable, ongoing, generous contribution of his talents as CHLP’s computer/web consultant and problem-solving wizard.
New York Academy of Medicine – for the important research assistance.
CHAMP – for sharing media lists and resources.
We also want to thank our Teen SENSE collaborators who are helping to translate a mode for comprehensive sexual health care into a reality in our first targeted state, New Jersey:
Robert Johnson, M.D., FAAP, Professor and Chair of Pediatrics and Paulette Stanford, M.D., FAAP, Professor of Pediatrics, Adolescent & Young Adult Medicine at UMDNJ-New Jersey Medical School
SIECUS (Sexuality Information and Education Council of the United States)
Physicians for Reproductive Choice & Health
Ronald Feinstein, M.D., FAAP, of the Society for Adolescent Medicine’s Juvenile Justice Special Interest Group and director of a long-term juvenile correction facility
Hyacinth AIDS Foundation, a NJ-based HIV service organization; the National Center for Lesbian Rights’ Equity Project
Education Training Research Associates and its Surviving Outside Program
HiTops, a New Jersey peer-led sexual education and health care provider with local recognition and credibility
Answer, part of the Center for Applied Psychology at Rutgers University, a national organization dedicated to promoting comprehensive adolescent sexuality education
Cathryn Samples, M.D., M.P.H., HIV Adolescent Medicine, at Children’s Hospital in Boston
Michael Cohen, M.D., FAAP, Medical Director, New York State, Office of Children and Families Services.