The United States Positive Women's Network

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November 2009:  PWN Testifies before UN Special Rapporteur on Housing

The U.S. Positive Women’s Network was invited to testify at Georgetown University Law Center on November 8, 2009, before the United Nation’s Special Rapporteur on the Right to Adequate Housing – Raquel Rolnik– on the last day of her first official mission to the United States.  Brook Kelly, our HIV Human Rights Attorney, testified to the intersecting challenges faced by positive women and affected communities when affordable, safe housing is in short supply, and made recommendations to improve positive women’s human right to adequate housing.  The PWN also submitted written testimony to be included in a compilation of U.S. testimonies on adequate housing for the United Nation’s Special Rapporteur’s official report on the state of adequate housing in the United States and the government’s responsibility to ensure all people’s human right to housing.

The opportunity to participate in the National Forum on the Human Right to Housing was made possible by the hard work and organizing of the staff and volunteers at the National Law Center on Homelessness and Poverty, the U.S. Human Rights Network, National AIDS Housing Coalition, and National Fair Housing Alliance, National Alliance of HUD Tenants.  Read Brook's testimony here.

October 1, 2009

The Office of National AIDS Policy (ONAP) is hosting 14 regional community discussions to inform the National HIV/AIDS Strategy.  Download a worksheet to help give effective testimony here.

July 9, 2009:
U.S. Organizations Speak Out on Women and HIV to Inform Health Policy and
National AIDS Strategy

(Washington, D.C.)—Fourteen U.S. organizations working on issues related to human rights, women, and HIV/AIDS submitted a series of policy recommendations to guide the Office of National AIDS Policy (ONAP) and related agencies in their efforts to achieve better outcomes for women living with and affected by HIV.  The report, entitled “Critical Issues for Women and HIV: Health Policy and the Development of a National AIDS Strategy” calls attention to the factors contributing to disproportionate rates of HIV among low-income women and women of color, as well as poor health outcomes for women living with HIV – and proposes concrete solutions that integrate systems of prevention and delivery of care.

“The face of the HIV epidemic is increasingly that of a minority woman living in poverty,” said Gina Brown, Medical Case Manager of the NO/AIDS Taskforce. “Health care systems have largely neglected the complex medical, economic, and social realities of HIV-positive women.”

The working group identified six key areas of focus for better policy and practices: Meaningful involvement by HIV-positive women in development of policy and monitoring and evaluation of programs; greater consideration of HIV-positive people’s civil and human rights; health disparities in the U.S. South and rural areas; health care access; integration of sexual and reproductive health services with HIV testing, prevention and care; and HIV prevention. The report articulates specific policy recommendations that seek to improve the outcomes of women living with or vulnerable to HIV. 

“Involving the expertise of HIV-positive people and those working on the frontlines of service delivery is critical to improve prevention and care outcomes for communities impacted by HIV. We must use a human rights framework as we reform health policy and develop a National AIDS Strategy that will truly reduce HIV incidence and increase access to care for women,” said Naina Khanna, Coordinator of the U.S. Positive Women's Network and Director of Policy and Community Organizing at WORLD.

Representatives from these organizations plan to meet with Jeff Crowley, Director of ONAP, and other key White House officials in the upcoming months to discuss their recommendations and the development of a National AIDS strategy.

The organizations that authored the report are African Services Committee; AIDS Alabama; Alliance of AIDS Services-Carolina; Center for HIV Law & Policy; Community HIV/AIDS Mobilization Project (CHAMP); Center for Health and Gender Equity (CHANGE); HIV Law Project; International Community of Women Living with HIV/AIDS (ICW); National AIDS Fund; National Women and AIDS Collective (NWAC); Sisterlove, Inc.; The U.S. Positive Women’s Network (PWN); The Women’s Collective; and Women Organized to Respond to Life-threatening Disease (WORLD).

The full text of the report can be accessed here.

July 6, 2009:  HEALTH CARE REFORM NEEDS YOUR VOICE NOW!!! 

FAX AND CALL-IN WEEK OF ACTION FOR PEOPLE AFFECTED BY HIV

50% of people living with HIV in the U.S. do not have regular health care and women with HIV are disproportionately out of care.  The health care reform process is moving FAST, and this is a moment of  opportunity to expand coverage for all low income people and particularly women living with and vulnerable to HIV. We need all hands on deck NOW to keep key components of proposed legislation that will protect us. 

Your members of Congress are back in their D.C. offices today after a legislative recess last week, and they are primed to move forward on health care reform.  As they finalize their proposals on health care reform, they need to hear from you today!

What to do THIS WEEK:

I.  Find your members of Congress and their contact information by going to www.congress.org and type in your zip code.  Then click on their names to get all contact information - phone numbers and fax numbers. 

II.  Get yourself and everyone in your organization - staff, clients, friends and family to make three phone calls--> 2 to U.S. Senators and 1 to your U.S. Representative.  Call them in their Washington, DC office today using the sample call script below. 

III.  Send a fax or letter to the same three offices.  Fax numbers and mailing addresses can be found on the same page as the phone numbers.   Use sample fax/letter language below.

IV.  Get five other people to do the same.  Track the names, phone numbers, emails and mailing address of folks you have calling or sending faxes.

V.  Send an email to pwn@womenhiv.org letting us know how many calls and faxes you organized!

VI.  BONUS POINTS:  Organize a legislative visit with the district staff of your Congressmembers.  See the PWN Guide to Legislative Visits at the bottom of this page for tips.

Sample Call Script:

I'm calling to make sure that Senator/Representative _____ knows that we need real health care reform in 2009 that will meet the needs of women and families affected by HIV. 

Please tell Senator/Representative ___________to support legislation that:

1) Includes a strong public plan option to help provide affordable access to comprehensive care for people living with HIV

2) Expand Medicaid for ALL low-income people, including childless adults. 

3) Prohibits private insurance companies from unfair rating practices and exclusions based on gender and health status.

Sample fax or letter:

Dear Senator/Representative__________,

I'm writing to make sure that Senator/Representative _____ knows that we need real health care reform in 2009 that will meet the needs of women and families affected by HIV. 

As a [person concerned about how HIV is impacting my community], I believe we need legislation that:

1) Includes a strong public plan option to help provide affordable access to comprehensive care for people living with HIV

2) Expand Medicaid for ALL low-income people, including childless adults. 

3) Prohibits private insurance companies from unfair rating practices and exclusions based on gender and health status.

WHY ARE THESE THREE ISSUES IMPORTANT FOR WOMEN AFFECTED BY HIV?

·  Expanding Medicaid for all low-income people, including childless adults, by eliminating the current requirements that tie Medicaid to disability status, would give approximately 42% of all people living with HIV who are currently uninsured immediate access to health care through Medicaid. 

· A strong public plan option will help provide affordable access to comprehensive care for people with HIV - nearly 30 percent of whom have no insurance. This would offer a national standard for coverage and greater dependability, consistency and security for people with HIV than private plans, which can charge higher prices and/or close, merge or change benefits at will.

·  Current insurance rating and premium-setting practices disproportionately impact women and especially those previously diagnosed with any chronic condition, including HIV.  Currently premiums may vary widely and women typically are charged more than men for the same health coverage. According to a report released by the National Women's Law Center, insurers using gender rating charged women anywhere from 4% to 45% more than men for an identical plan (see www.nwlc.org for report).

All three of these priorities are crucial to ensure the best possible expansion of care and treatment for women with HIV/AIDS and must be part of any final health care reform package.

Decisions are being made quickly and Congress needs to hear directly from people who are most impacted by this legislation.

If you have questions and/or are interested in organizing a delegation of women and HIV advocates to meet with legislators or a call-in day on health care reform, we can help you!!!  Contact pwn@womenhiv.org 

Sisters With Solutions:  3 Leading National Groups Unite to Address HIV among Women

In honor of National Women & Girls HIV/AIDS Awareness Day, U.S. Positive Women's Network, National Women & AIDS Collective, and the National Black Women's HIV/AIDS Network Launch Working Group on Women, HIV and Health Care Reform

Tuesday, March 10 - In an unprecedented move, three U.S. groups addressing HIV among women have launched a Working Group on Women, HIV and Health Care Reform to develop more effective models for HIV prevention and care.  The launch commemorates National Women and Girls HIV/AIDS Awareness Day, a day of action that raises awareness on the increasing impact of HIV/AIDS on women and girls.

Recent numbers from the Centers for Disease Control and Prevention (CDC) show that women continue to represent over one-quarter of HIV cases in the United States.  Yet HIV-positive women and women-focused HIV organizations feel that many programs and policies were not designed to reflect the current realities of women's lives, particularly as HIV has shifted over the years from a death sentence to a chronic manageable condition. People with HIV who have access to appropriate treatment and care now enjoy normal life expectancy, and women often stay in the workforce and have children.

"Our national political leadership is in the process of implementing a bold plan that will profoundly change many of the policies which have served as barriers to accessing health care and other services in this country," said Vanessa Johnson, of the National Black Women's HIV/AIDS Network (NBWHAN).  "HIV-positive women and HIV organizations by, for and about women must be present in local, state and national decision-making - so that policies are grounded in reality."

Advocates point out that many aspects of HIV prevention, testing and care systems do not meet women's needs.  "The HIV epidemic among women is driven less by behavior than social, economic and ecological vulnerability," said Naina Khanna of the U.S. Positive Women's Network.  "Women living with poverty are far more likely to test positive for HIV and to experience poor health outcomes once diagnosed.  Yet HIV prevention and testing efforts continue to focus on people changing their behavior, rather than lifting people out of poverty.  We need to rethink our models."

According to Rona Taylor of the National Women and AIDS Collective, "We need to bring a gender lens to the work being done around the reauthorization of Ryan White funding.  Many women rely on non-medical benefits to get themselves and their dependents to and from medical appointments."

The Ryan White Treatment Modernization Act is the major national funding stream for HIV/ AIDS services in the United States and is slated to sunset in September 2009. According to one study, over three-quarters of women living with HIV have at least one child under 18 in their homes. Advocates for women suggest that policies shaping care and support programs must take into account the needs of dependent children and HIV-affected families.

The Working Group will assess Ryan White and other major systems of HIV service delivery to make recommendations for a National AIDS Strategy and Health Care Reform.  "We are here as a resource to the Office of National AIDS Policy and the CDC to ensure that programs and policies really work for the individuals they intend to serve," said Vanessa Johnson.

For more information on the Working Group please contact:

Naina Khanna
Director of Policy and Community Organizing
WORLD (Women Organized to Respond to Life-threatening Diseases) & Positive Women's Network USA
www.womenhiv.org
Office: +1 510.986.0340 ext 316
Mobile: +1 510.681.1169

Why Women & Girls HIV/AIDS Awareness Day Matters: 
Voices of Positive Women

by Naina Khanna, U.S. Positive Women's Network Coordinator

Here in the United States, women comprise about 27% of HIV infections, up from about 8% in 1984.    In many countries around the world, women already represent over 50% of HIV infections.  Rates of sexually transmitted infections among youth and teenage pregnancy have risen over the last several years – both indicators that we may soon see a corresponding rise in HIV infections among both young women and men.  And, although generally considered a chronic manageable condition in the U.S., HIV continues to be the leading cause of death among African American women aged 25 to 34 years old.  

Yet most of the general public in the U.S. think of HIV as a men's disease and some members of the HIV advocacy/policy community have gone so far as to say "HIV/AIDS in this country is a men's disease".

The U.S. Positive Women's Network believes we urgently need a comprehensive, outcomes-oriented National AIDS Strategy that addresses homophobia, HIV stigma, and racial and gender disparities in access to awareness, prevention, testing, treatment, and care.

This Women & Girls HIV/AIDS Awareness Day, I spoke to several HIV-positive women leaders around the U.S. to hear their perspectives on why HIV matters, in their own words.  Read more here

World AIDS Day 2008 Statement from the U.S. Positive Women's Network, a project of WORLD.

U.S. Positive Women's Network
Strengthening the Strategic Power of Women with HIV

FOR IMMEDIATE RELEASE

Contact:  Naina Khanna
                510-681-1169
                nkhanna(at)womenhiv.org

 HIV-Positive Women Call for Renewed Leadership on U.S. AIDS Epidemic

On World AIDS Day 2008, women living with HIV call on President-Elect Barack Obama to fulfill his campaign promise of leadership on the domestic and global HIV epidemic.

 Oakland, CA, Monday December 1 - On the 20th anniversary of World AIDS Day, women living with HIV across the United States pause to remember those who have lost their lives to AIDS, to remember those women who are still fearful and ashamed of an HIV diagnosis, and to applaud women living with HIV/AIDS who give their time, money and effort to ensure that all people living with HIV/AIDS have a brighter tomorrow.
 
World AIDS Day 2008 comes just a few months after the Centers for Disease Control and Prevention (CDC) revised their estimate of HIV infections in the U.S. upwards by about 40% -- from 40,000 new infections to 56,000 new infections annually.  Many people living with HIV feel the U.S. could be doing more both to halt the spread of HIV and to provide better care and treatment for those living with HIV/AIDS.  

"28 years into the United States HIV epidemic, the U.S. still has no overarching national strategy to address the root factors driving this epidemic - poverty, homophobia, our failing health care system, and a lack of institutionalized commitment to scientifically sound HIV prevention - and the factors preventing people from accessing appropriate care once diagnosed with HIV.  We need a plan, not a patchwork - a comprehensive National AIDS Strategy," says Naina Khanna, coordinator of the U.S. Positive Women's Network.

Inspired by similar networks of women in India and South Africa, the U.S. Positive Women's Network (PWN), was founded as a national membership body led by and for women living with HIV in the United States.  The PWN is concerned about the HIV rates among women of color and the lack of care available to women living with HIV in the U.S.

"Every person living with an HIV diagnosis in the United States deserves access to the medication, care, and compassion she needs to live a quality life.  Yet that is not the case, especially in Southern and Rural States," says Linda H. Scruggs, Director of Programs at AIDS Alliance for Children, Youth and Families and founding member of the PWN.  The Ryan White Program, the largest HIV-specific discretionary grant program in the U.S., has been level-funded for the past several years, though the number of people living with HIV in the U.S continues to rise.   

According to the CDC's HIV incidence report released in August 2008, women comprise about 27% of new HIV infections in the U.S., up from about 8% in 1984.  Globally, women are about 50% of all HIV infections.  Health advocates in the U.S. are becoming increasingly concerned that some populations are vulnerable to contracting HIV, independently of personal risk behavior.  Recent studies have shown that HIV is the leading cause of death among African American women aged 25 to 34, and that African American women with one sexual partner were more likely than those with multiple sexual partners to be at risk for contracting HIV.

"As a national body representing the estimated 300,000 women living with HIV in the United States, we hope the next Administration will do everything in its power to reverse the war on sexual and reproductive health services at home and abroad which has had fatal consequences for women and girls globally.  We are so pleased that President-Elect Obama has pledged to provide our young people with comprehensive sexuality education, and that he consistently supports research on microbicides to put HIV prevention in the hands of women," says Loren Jones, Peer Advocate and PWN founding member. 

The Bush Administration linked global funding for HIV prevention with anti-abortion and abstinence-based education requirements, through the PEPFAR (President's Emergency Plan for AIDS Relief) program, a $48 billion funding stream targeted at the nations hardest-hit by the HIV pandemic. Many HIV researchers and activists believe that science, not religion, should drive U.S. public health efforts.  

"We're here to offer our expertise as HIV-positive women and leaders to the incoming Administration and Congress in their efforts to address the needs of people living with HIV.  Our policy paper outlines some of the priorities of the U.S. Positive Women's Network, " said Vanessa Johnson, Executive Vice President of the Washington, DC-based National Association of People With AIDS (NAPWA), and a founding member of the U.S. Positive Women's Network. The PWN policy paper can be viewed online at http://womenhiv.org/files/PWNExecSummNov2008.pdf

***
The U.S. Positive Women's Network is a project of WORLD (Women Organized to Respond to Life-threatening Disease) in Oakland, CA.  We are a national membership body that exists to strengthen the strategic power of women living with HIV in the United States.  

Who we are:

WE VALUE:

1. Explicitly being anetwork of self-identified WOMEN.

2.  The analysis that HIV is a symptom, not the problem, and we must address the root causes and structural inequalities that lead some communities to be disproportionately impacted by HIV – both before and after HIV infection.

3.   Changing the balance of power.

4.   Cultivating leadership that reflects the epidemic.

5.  Decision-making processes that prioritize those most impacted by the decision.

 6.  The input and contribution of well-intentioned, well-informed allies.

 7.  The meaningful inclusion of all women living with HIV.

 8.  Sustainability as a practical necessity.

 9.  Our history and lessons from the past.

 10.  Mentorship and the development of new leadership.

 11.  Accountability from ourselves and from others.

 12.  Strategic campaigns that win us victories and make the best use of our collective resources. 

How Does It Work? 

The PWN was founded by twenty-eight (28) HIV-positive women from around the U.S., representing the U.S. epidemic, in June 2008.  For a report on this first national Visioning Convening, please download the attachment.   

The PWN now has a Next Steps Team and working groups.  To join the PWN click here

pwn(at)womenhiv.org  

 +1 510 986 0340 extension 316

Communications/Policy Working Group Co-chairs:

Loren Jones and Vanessa Johnson.

To join this group send an email to pwn(at)womenhiv.org or call 510-986-0340 ext 316

Regional PWN Contact List (in formation):

Midwest:

LaTrischa Miles: Kansas City Free Health Clinic, Kansas City, MO  (816) 777-2745

South:

Patricia Kelly:  spirilgurl(at)yahoo.com  phone: (803) 747-6046

Mid-Atlantic: 

Linda H. Scruggs: phone: (202) 785-2535    lscruggs@aids-alliance.org

Vanessa Johnson:  phone: (240) 247-1016   vjohnson@napwa.org

Northeast:

Pennsylvania: Waheedah Shabazz-El:   (267) 231-2647 iamshabazz(at)yahoo.com   

New York:  Yolanda Diaz:  phone: (212) 564-3282 ext 101, atabex10(at)aol.com 

Southern California:  

Cinnamen Kubricky:  cinnamenkubricky (at) yahoo.com (619) 702-4186

Acintia Robinson: acintia_robinson(at)hotmail.com

Northern California:  

Dorothy Kleffner: dkleffner (at) earthlink.net 415-847-0770

Loren Jones:  ns27jones(at)yahoo.com (510) 704-8575 

Pacific Northwest:  

Pat Migliore, Founding member, BABES Network Seattle:  mpatmig(at)yahoo.com

Texas:

 Demetra Tennison, Peer Advocate at AIDS Services of Austin's Women Rising Project:

demetra.tennison(at)asaustin.org