HIV-Positive Women Making National Policy Change

April 9th, 2009

GreetingsGreetings

Sara Gould, President and CEO, Ms. Foundation for Women

Desiree Flores, Program Officer, Health Programs, Ms. Foundation for Women

Rona Taylor, Organizer, National Women and AIDS Collective (NWAC), a project of the Ms. Foundation for Women

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BackgroundBackgroundLiz Brosnan, Christie’s Place, San Diego, CA

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1996 – Ms. Foundation for Women created the Women and AIDS Fund (WAF), the first and only national fund solely dedicated to supporting community organizing and policy advocacy of, by and for women living with HIV/AIDS.

WAF Mission– To improve the lives of HIV-positive women by supporting local grassroots organizations that advocate for policies and services to meet their needs.

2005 – The birth of National Women and AIDS Collective (NWAC) – current and past WAF grantees form NWAC as a vehicle for concrete policy change at the national level.

NWAC is the only national network that advocates for women-led and women-serving organizations.

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National Women and AIDS Collective National Women and AIDS Collective (NWAC): Who we are(NWAC): Who we are

NWAC represents a total of twenty five (25) organizations in fifteen (15) states including California, Nevada, Louisiana, Atlanta, Vermont, Minnesota and New York. It also includes the U.S. Virgin Islands.

These organizations are predominantly led by and for HIV+ women and are oftentimes the first place that women go to seek help when diagnosed.

These organizations are predominantly community based organizations with an average staff of five (5) people and budgets ranging from $50,000 - $800,000.

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Our Vision:Our Vision:

A world where testing, prevention, care and treatment is adequately resourced in order to better target and support the needs of women living with HIV/AIDS.

We aim to achieve this by focusing on the following : Advocate for better surveillance outcomes for women, to more accurately

reflect the disease within the U.S. HIV/AIDS data which has implications for resource allocation.

Advocate for reauthorization of the Ryan White CARE Act to include support services and medical services to better meet the needs of women and their families.

Collaborate with other organizations and social justice movements to advance NWAC’s goals.

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Notable Achievements: Notable Achievements:

Created and distributed our first-ever women and AIDS national policy paper, which outlined the importance of the re-authorization of the Ryan White Act and how services for the engagement care, treatment, and support of women must be properly supported (May 2005)

Held a congressional briefing on Women and AIDS and presented our policy position paper entitled, Change the CDC HIV Surveillance System to More Accurately Reflect the Reality of the HIV Epidemic and the HIV Prevention Needs of Women Living in the United States (Oct. 2007)

Distributed a National HIV Testing Day survey (annually since 2007)

Published and distributed a National AIDS Strategy for Women (2008)

Partnered with the U.S. Positive Women’s Network and National Black Women’s HIV/AIDS Network to form the Women, Health, and HIV Working Group (2009)

Met with Dr. Kevin Fenton, Director of the National Center of HIV/AIDS, STDs, Viral Hepatitis, and TB Prevention, and Jeff Crowley, Director of the Office of National AIDS Policy, to present concrete, tangible recommendations to influence their decision making process.

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The Inclusion of Women as a Priority The Inclusion of Women as a Priority Population: Why and What does is Population: Why and What does is

mean?mean?Vanessa Johnson, National Association of People with AIDS,

Silver Spring, MD

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Women at risk for and living with HIV have unique needs:

Biological difference Family structure considerations Gender inequality Socioeconomic circumstances

Without an approach to prevention that takes into account the realities of women’s lives, there will never be a halt to this

epidemic.

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The Inclusion of Women as a The Inclusion of Women as a Priority Population meansPriority Population means

When you have the power to do so:

1. Supporting their participation and leadership in policy development and implementation.

2. Supporting the creation of best practices of, by and for women living with HIV/AIDS.

3. Supporting the infrastructure of a national network of women living with and affected by HIV/AIDS.

4. Acknowledging the socioeconomic, biomedical, and behavioral factors that lead to HIV vulnerability in women.

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1. Supporting the Participation and 1. Supporting the Participation and Leadership in Policy Development and Leadership in Policy Development and

ImplementationImplementation

Advance the participation and leadership to include women doing the work and women infected/affected by HIV.

NWAC is a unique national network that is modeling this.

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2. Supporting the creation of best practices for 2. Supporting the creation of best practices for recognizing and supporting the capacity of recognizing and supporting the capacity of

women-focused HIV organizations in the U.S. women-focused HIV organizations in the U.S.

Very few HIV/AIDS organizations or programs focus solely on the unique needs of women. Those that do are often not adequately resourced restricting their ability to move beyond direct service work to focus on long lasting systems change in a more impactful way.

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3. Supporting the infrastructure of a 3. Supporting the infrastructure of a national network of women living with and national network of women living with and affected by HIV/AIDS.affected by HIV/AIDS.

It is imperative that HIV-positive women and the organizations they lead are networked and connected in order to leverage power, learn from each other and decrease isolation.

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4. Acknowledging the socioeconomic, 4. Acknowledging the socioeconomic, biomedical, and behavioral factors that lead biomedical, and behavioral factors that lead

to HIV vulnerability among women. to HIV vulnerability among women.

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Again, Making Women a Priority Means:Again, Making Women a Priority Means:Naina Khanna, Positive Women’s Network & WORLD, Oakland, CA

1. Supporting their participation and leadership in policy development and implementation

2. Supporting the creation of best practices by, for and about women living with HIV/AIDS.

3. Supporting the infrastructure of a national network of women living with and affected by HIV/AIDS.

4. Acknowledging socioeconomic, biomedical, and behavioral factors that lead to HIV vulnerability in women.

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HIV Surveillance SystemHIV Surveillance SystemCarrie Broadus, Women Alive Coalition, Los Angeles, CA

&Precious Jackson, Center for Health Justice, West Hollywood, CA

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The Current System:The Current System:

Does not accurately report why rates among women are rising.

Suffers from a serious flaw that may contribute to women being unaware or choosing not to believe their risk for infection.

Requires women to know the exposure/risk category of her male partner.

Early studies of HIV/AIDS focus on individual characteristics and behaviors in determining HIV risk – “biomedical individualism” coined by researchers Fee and Krieger.

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The Current System:The Current System:

Hierarchal Transmission (Risk) Categories:

Men who have sex with men (MSM) MSM/Intravenous Drug Users (MSM/IDU) Intravenous Drug Users (IDU) High-risk Heterosexual Contact** Non-Identified Risk (NIR)

*NIR cases has increased over time by 20% in 1994 and 35% in 2004

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The Reality:The Reality:

Women are contracting HIV because they either:

a) believe they are in a monogamous relationship or,

b) do not know the sexual or drug using history of their male partner.

These women do not fit into a exposure/risk category identified by the CDC; therefore, they are “non-identified risk”.

47% of all women testing positive in US are assigned to the

“non- identified risk” group.

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Non-Identified Risk/No Reported Risk (NIR/NRR)

Because a larger proportion of AIDS cases were reported with non-identified risk (NIR) in recent years, the AIDS incidence among some exposure categories may be underestimated unless an adjustment is done. The CDC developed a method to redistribute these NIR cases into other valid exposure categories based on the sex, and race specific distribution of the cases reported from 1993 to 2002.

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The Impact of Risk Categories:The Impact of Risk Categories:

Risk Categories are created based on how information is collected… “if you go looking for apples in the apple orchard, you’ll find apples.”

These categories not only impact testing practices, they impact:◦ Allocation of resources/funding*

◦ Monitoring trends

◦ Planning Prevention

◦ Evaluation of HIV programs

◦ Identification of new or unusual cases

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What do we need?What do we need?

• Focus on the role of social factors in infectious disease transmission, progression and exposure.

• Focus on analysis of social conditions that causes exposure to HIV.

• An acquisition category focusing on women who lack knowledge of their male sexual partner’s HIV behavior risk factors.

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Goals to Decrease the Rates Among Goals to Decrease the Rates Among WomenWomen

Implement a heuristic surveillance model that enhances the current hierarchal biomedical and individual behavioral surveillance model in order to accurately reflect gender, socioeconomic, racial and ethnic determinants of health.

Adopt the female presumed heterosexual category (FPH).

Address the disincentive of testing those who are categorized as “low risk” (e.g., NIR), yet they are testing HIV+.*

Develop acquisition category focusing on women who lack knowledge of their male sexual partner’s HIV status and behavior risk factors (DPM).

Increase resources for surveillance.

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Putting Our Analysis Into Putting Our Analysis Into ActionAction

Rona Taylor, NWAC, Brooklyn, NY

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Model City

Still in conceptual phase.

Intended to provide a concrete example of our analysis.

Will work with NWAC members across the country to: address the fee structure in their local health jurisdiction which will remove barriers for

testing for women,

advocate for the female presumed heterosexual category that will better capture data on women living with HIV,

implement a model through community planning groups that will take into account not only the numbers of individuals living with HIV, but the bio-psycho-social issues that place them at risk, such as the Dynamic Prioritization Model.

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Moving Forward: How NWAC has Positioned Itself Moving Forward: How NWAC has Positioned Itself Precious Jackson, Center for Health Justice, West Hollywood, CA

The National Women and AIDS Collective (NWAC) :

Has a representative on the convening group of the Coalition for a National AIDS Strategy

Has a representative on the convening group of the Federal AIDS Policy Partnership

Published and circulated its National AIDS Strategy for Women to Congress (Domestic Hearing on HIV Prevention), the Obama-Biden Transition Team, the newly appointed Director of National AIDS Policy, and Kevin Fenton, Director of the National Center of HIV/AIDS, STDs, Viral Hepatitis and TB Prevention.

We are in alignment with the Council for State and Territorial Epidemiologists and the Centers for Disease Control consultation on social determinants.

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Why NWAC?: The Need to Sustain the NetworkWhy NWAC?: The Need to Sustain the NetworkNaina Khanna, U.S. Positive Women’s Network & WORLD, Oakland, CA

NWAC is the only national network that advocates for women-led and women serving organizations.

Without an approach to prevention that takes into account the reality of women’s lives, there will never be a halt to this epidemic.

We have the power to change this by:

1. Supporting women’s participation and leadership in policy development and implementation.

2. Supporting the creation best practices of, by and for women.

3. Supporting the infrastructure of a national network of women living with and affected by HIV/AIDS.

4. Acknowledging the socioeconomic, biomedical, and behavioral factors that lead to HIV vulnerability in women.

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Sustaining NWAC as a Strong Sustaining NWAC as a Strong National NetworkNational Network

In order to sustain the network, and build the power and the position of the network, NWAC needs allies.

As an ally, you can: Provide resources, Provide technical assistance, Invite us to participate, Utilize us as experts, Help make women a priority.

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Ms. Foundation for Women, StaffMs. Foundation for Women, StaffSara Gould, President/CEOSara Gould, President/CEO

Desiree Flores, Program Officer, Health ProgramsDesiree Flores, Program Officer, Health ProgramsKira Laffe, Program Assistant, Health ProgramsKira Laffe, Program Assistant, Health Programs

Rona Taylor, Organizer, National Women and AIDS CollectiveRona Taylor, Organizer, National Women and AIDS Collective

National Women and AIDS Collective, Leadership TeamNational Women and AIDS Collective, Leadership TeamSylvia Britt-Raven, formerly of WORLD, Oakland, CA, student at Spelman College, Atlanta GASylvia Britt-Raven, formerly of WORLD, Oakland, CA, student at Spelman College, Atlanta GA

Carrie Broadus, Women Alive Coalition, Los Angeles, CACarrie Broadus, Women Alive Coalition, Los Angeles, CALiz Brosnan, Christie’s Place, San Diego, CALiz Brosnan, Christie’s Place, San Diego, CA

Precious Jackson, Center for Health Justice, North Hollywood, CAPrecious Jackson, Center for Health Justice, North Hollywood, CAVanessa Johnson, National Association of People with AIDS (NAPWA), Washington, DCVanessa Johnson, National Association of People with AIDS (NAPWA), Washington, DC

Naina Khanna, U.S. Positive Women’s Network, WORLD, Oakland, CANaina Khanna, U.S. Positive Women’s Network, WORLD, Oakland, CASylvia Lopez, Women Rising, a project of AIDS Services Austin, Austin, TXSylvia Lopez, Women Rising, a project of AIDS Services Austin, Austin, TX

Jo Schneiderman, Twin States Network, VTJo Schneiderman, Twin States Network, VTDemetra Tennison, Women Rising, a project of AIDS Services Austin, Austin, TXDemetra Tennison, Women Rising, a project of AIDS Services Austin, Austin, TX

National Women and AIDS Collective, Former Leadership Team MembersNational Women and AIDS Collective, Former Leadership Team MembersMaura Riordan, WORLD, Oakland, CAMaura Riordan, WORLD, Oakland, CAPiper Hyland, WORLD, Oakland, CAPiper Hyland, WORLD, Oakland, CA

Thank You!For more information please visit www.ms.foundation.org . You may also contact Rona

Taylor rtaylor@ms.foundation.org or Desiree Flores dflores@ms.foundation.org .

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