March 17, 2006

This Week in Washington
1. NORA Coalition Discusses the Administration’s Prevention Policies
2. HHS Commemorates National Women and Girls HIV/AIDS Awareness Day

Announcements
1. NAPWA To Hold AIDSWatch 2006 from May 8 - 10

This Week in Washington
1. NORA Coalition Discusses the Administration’s Prevention Policies
On Monday, March 13, the National Organizations Responding to AIDS (NORA) coalition, for which AIDS Action serves as the convener, held its bi-monthly meeting. The featured speaker was Christopher Bates, acting director of the Office of HIV/AIDS Policy at the U.S. Department of Health and Human Services (HHS).

Mr. Bates began his presentation by announcing that he had a new “boss” at HHS: Dr. John Agwunobi. Dr. Agwunobi is the new assistant secretary for Health, an agency that oversees the Office of HIV Policy among others. He came to HHS from the Florida Department of Health, Mr. Bates noted. He added that Dr. Agwunobi is very excited to be working on HIV at the federal level after participating in a state response to HIV that has accomplished so much. Florida, Mr. Bates explained, is making excellent progress in decreasing the number of new HIV infections occurring in the state, particularly among African American women and men who have sex with men (MSM).

Mr. Bates went on to discuss the President’s recommended budget for fiscal year (FY) 2007. He said that he’s “excited” about the new money proposed for the Centers for Disease Control and Prevention (CDC), $93 million total. He reminded everyone, however, that the President’s budget is just a proposal and certainly not finalized in anyway. However, if Congress fulfills this request, the plan is to direct the funding to the states as well as to the six cities that are directly funded by the CDC (Chicago, Houston, Los Angeles, New York, Philadelphia, and San Francisco). It will be for “mostly testing,” which Mr. Bates identified as a “good thing.” In addition, some of the money will be used to fund more programs for substance users and prisoners. Mr. Bates said that he’s looking forward to focusing much more attention on the HIV prevention and care work in correctional facilities.

During a question and answer period that followed Mr. Bates’ remarks, one NORA member asked about the CDC’s recently proposed guidelines for HIV testing in health care settings (these guidelines are not final and are currently open for public comment). The proposed guidelines recommend an opt-out testing procedure, where individuals would be tested for HIV unless they said they did not want the test. The NORA member asked whether testers would be advised to inform people of their right to opt out of the HIV test. In reply, Mr. Bates said that the CDC is developing curricula to bring into health care settings to teach providers how to better handle the opt-out process.

Following the question and answer period, Mr. Bates urged AIDS service organizations in states and localities to invite their federal legislators to visit their clinics. He said that many Members of Congress and their staffs do not have a “personal connection” to HIV. They are not acquainted with the effects of the HIV epidemic in their states and/or districts. In order to remedy this situation, he said, Members and their staffs need to be exposed to HIV programs being administered by their constituents, as well as to constituents living with HIV. In this way, he said, they will be more likely to advocate on behalf of these programs.

In closing, Mr. Bates announced the first national HIV conference for North America’s native populations: “Embracing Our Traditions, Values, and Teachings: Native Peoples of North America HIV/AIDS Conference.” The conference will be held May 2 - 6 in Anchorage, Alaska. For more information on the conference, go to: http://www.embracingourtraditions.org/home.asp?flash=true.

2. HHS Commemorates National Women and Girls HIV/AIDS Awareness Day
Last Friday, March 10, 2006, marked the launch of the first National Women and Girls HIV/AIDS Awareness Day. Sponsored by the HHS, this day of observance aimed to draw attention to the significant and growing impact of the HIV epidemic on women and girls in the United States, particularly women of color. With the theme “Saving Ourselves, Saving Our Families, and Saving Our Future,” the observance also aimed to encourage women of all ages to learn more about HIV infection, to get tested, and to maintain or adopt healthy behaviors.

To commemorate this launch, HHS hosted a press conference, moderated by Cristina Beato, principal deputy assistant secretary for Health, in the Great Hall of the Hubert Humphrey Building where the department is located. AIDS Action staff attended.

The program for this two-hour event included remarks by a number of notable speakers as well as three panels. This report provides coverage of the first and final speakers, listed below, as well as one of the panels, entitled Perspectives of Women/Girls Living With HIV/AIDS. The speakers covered are as follows:

• Vickie Mays, PhD, MSPH, professor of Health Services for the School of Public Health at the University of California, Los Angeles and director of the research center Black Community AIDS Research and Education Project; and
  
• Dr. Dorothy Height, chair and president emerita of the National Council of Negro Women, Inc.

Remarks by Dr. Vickie Mays
Dr. Mays called the first National Women and Girls HIV/AIDS Awareness Day an “important marker.” It is a day, she said, to increase awareness and knowledge of women’s herstory. Through the sharing of anecdotes and experiences, women can draw strength, lessons, and inspiration to support their own efforts to care for themselves, their families, and their communities.

In addition, Dr. Hays observed that the HIV epidemic was disproportionately affecting all people of color. Drawing a comparison between whites and African Americans, she reported that one in 3,000 whites is HIV positive, whereas the ration for African Americans is one in 160. Continuing, she emphasized that women of color are particularly affected by the “burden” of HIV. “We must ask how and why this must be” and, she added, “We have to understand how we handle that burden.”

In closing, she called for recognition of “the fierce urgency of now.” It is time, she said, to open the doors of opportunity to ensure that all Americans have access to the information and health and social services that will keep them healthy.

Perspectives of Women Living With HIV
The first panel of the press conference was dedicated to the kind of story telling that Dr. Hays encouraged: real woman speaking with honesty and candor about their own experience within the context of a national HIV epidemic. In this case, the four story tellers were all women living with HIV.

• Patricia Nalls
Patricia Nalls, a resident of the District of Columbia, is a community activist and the founder of the Women’s Collective, whose mission is to provide service, support, and hope to HIV positive women and their families.

In 1986, Ms. Nalls, the mother of three children, watched as her husband, Lenny, became gravely ill. The family soon learned through an AIDS diagnosis that Lenny was HIV positive. Ms. Nalls and her three children were then tested for the virus. While her two older children were found to be HIV negative, she and her three year-old daughter, Tiffany, were both positive. “Within six months,” she said, “both my husband and daughter were dead.”

Faced with the triple challenge of coping with her grief, raising two children on her own, and preserving her health, Ms. Nalls retreated from the world, “living life in isolation.” The few occasions that she attempted to reach out to others did not meet with success. As an example, she recalled her decision to participate in a support group. However, the only one she could find was “all men talking about spending the rest of their lives traveling and eating off fine china.” She couldn’t relate, she admitted.

Recognizing the lack of services for HIV positive women, Ms. Nalls founded the Women’s Collective. Initially a support group, the Women’s Collective is now an organizations serving over 600 HIV positive women and educating thousands of women on primary and secondary prevention. In discussing her work with the Collective, Ms. Nalls said that her clients are confronted with many “competing priorities,” including hunger, homelessness, child molestation, depression, breast cancer, cervical cancer, and mental illness. As a result, they do not seek help for themselves. She said it’s not uncommon for a woman to arrive at the Collective and say, “By the way, I’m HIV positive, but let’s not talk about that right now.”

• Jane Fowler
In 1974, Jane Fowler recalled, she sat in the Rockefeller Center office of Barbara Walters. Ms. Fowler was a 38 year-old journalist on assignment to interview the promising new co-host of NBC’s Today Show.

Fast-forward to 1998. Ms. Fowler is watching and listening to Barbara Walters on the news show 20/20 as she delivers a report in which Ms. Fowler appears. The report’s topic is “safe sex and seniors,” and Ms. Fowler is sharing her story of living a “traditional, conventional life”—and being infected with HIV nevertheless.

A virgin on her wedding night, Ms. Fowler was monogamous during her marriage, which lasted 23 years. In the early 1980s, however, her marriage ended in divorce—a divorce, she states emphatically, that “I did not want.” Over time, she began to date again.

According to Ms. Fowler, of the few men she dated, none was a stranger, and she was not promiscuous. But she was naive, knowing little about HIV and seeing no need for condoms since she, as an older woman, couldn’t become pregnant.

When she learned of her infection in 1991, Ms. Fowler’s immediate response was to “retreat from journalism,” a career she had loved, fearing discrimination and hostility. “Older women with HIV are fearful,” she stated. “We face the double stigma of having a sexually transmitted disease and ageism.” For this reason, she now works to dispel the myth that older women are neither sexually active nor HIV positive. She does this work as the director of an organization she founded in 2002: HIV Wisdom for Older Women. In addition to correcting misconceptions about older women and HIV, Ms. Fowler also urges older women to use condoms. “You don’t know anyone’s sexual history but your own,” she cautioned.

• Nancy Soto
In the late 1990s, Nancy Soto was working in New Jersey as a medical administrator in internal medicine in New Jersey. Balancing her demanding job with caring for her two young children, she was stranger to stress. But then, she began to experience memory lapses. Information that was once simple for her to retain—her children’s school assignments, comments that colleagues had offered just minutes before—began to slip from her memory. To compensate, she began to write everything down—a technique that helped her overcome these surprising moments forgetfulness. However, as a woman living with HIV, she knew that her memory losses could not be ignored. In consultation with her doctor, she learned that her disabling cognitive problems were the result of HIV disease

For Ms. Soto, this news may have been emblematic of the way HIV infection and the side effects of treatment can reduce quality of life, but it wasn’t the only example. In 1991, when she was diagnosed with HIV, her then husband wanted nothing to do with her and began to withdraw from the relationship. While at home together, “he wouldn’t even talk to me,” she said, adding, “In my case, I was a disease.”

Although Ms. Soto was hurt and disturbed by her husband’s retreat, her parents urged her to remain in the marriage. Ms. Soto, a Latina, revealed that in her culture, “if your husband doesn’t hit you and provides,” you shouldn’t divorce. Eventually, though, she decided otherwise.

During her divorce hearings, recalled Ms. Soto, she had fronted a serious lack of HIV knowledge in “both smart and educated people,” including the presiding judge. When it came to custody of her children, for example, the judge ruled in her husband’s favor—believing Ms. Soto’s HIV infection would compromise her ability to be “a responsible parent.”

Ms. Soto also remarked on the pain a woman can feel as she observes the physical deterioration of her own body. She said that in many women HIV medications can create distortions, such as “sunken eyes, a big belly, or—for the really lucky ones—a hump on the back.” She then stated, “I often say were Sponge-Bob look-alikes, with thick middles and thin arms.”

Despite it all, she encouraged women living with HIV to “always keep your head held high.” Standing in the Department of Health and Human Services, she called for more research on the dosing requirements of small women and the most effective strategies for helping women stay compliant with difficult treatment regimens.

• Lisa Tiger
As an adolescent, Lisa Tiger led a charmed life. A member of the Muscogee Nation, Ms. Tiger comes from a family of nationally acclaimed American Indian artists. Her father, uncle, late brother, and sister were all gifted painters. In high school, Lisa also showed great promise, participating in sports, cheerleading, and being voted Homecoming Queen. And, she noted, “I graduated a virgin.”

After graduating, Ms. Tiger began a three-year relationship with a man. During this time, she faced the loss of her brother, who was killed in a car accident—a tragedy that devastated her. Her boyfriend responded to her grief with impatience, not understanding why, after six months, she couldn’t just “get over it.” As a result of this insensitivity, Ms. Tiger ended her relationship, and did not see her former boyfriend for almost two years.

When they finally did encounter each other, Ms. Tiger remembered joking about his ill appearance. “What’s wrong? Do have AIDS?” she had asked. While she had not received a response right away, she learned the truth soon enough. For not long afterward, Ms. Soto had a conversation with a friend in which her friend admitted to having sex with her former boyfriend. Because her friend was male, it dawned on Ms. Soto that she knew far less about her former boyfriend than she had thought. With this new information in hand, she went for an HIV test. The result was positive.

For many people, such news would be catastrophic, Ms. Soto observed. But it wasn’t for her. “I felt like I would be with my brother someday…maybe sooner than I had thought,” she said. “When it’s time, I’ll be ready to go; I have a lot to go to.”
In the follow years, a number of events changed her life and her perceptive. She adopted four children. She also began a relationship with another man. This new relationship wasn’t without its problems, she admitted. “I didn’t like his drinking, and he did appreciate my celibacy,” she explained. Consequently, the relationship ended.

Later on, however, they met again. “He was no longer drinking, and I was no longer celibate, she noted. In 2004, they gave birth to a healthy baby.

In the past, Ms. Tiger had been prepared for death because she “had a lot to go to.” Now, she said, “I have so much to live for.”

Remarks by Dr. Dorothy Height
Dr. Height called National Women and Girls HIV/AIDS Awareness Day “a new start” that can offer new insights into the HIV epidemic. According to Dr. Height, it is also an opportunity to ask, “What is the message that we’re prepared to carry and where will we take it?”

“Information has got to get out,” she stressed, particularly to African American women. “It is tough to hear that African American women, who seem to be at the bottom of so many things, are at the top here,” she reflected.

While acknowledging the challenges faced in responding to the HIV epidemic, Dr. Height also noted, with optimism, the power of women’s influence. According to Dr. Height, women have always been at the center of social transformation. “There was a time,” she said, “when people thought segregation would be here forever, and then a little woman refused to give up her seat”—a reference to Rosa Parks’ pivotal decision, which launched the Civil Rights movement. She further stated, “If you want to get a message out, tell a woman.”

Dr. Height did not wish, however, to minimize the challenges of the epidemic. She recognized that reducing its impact will require work on many fronts.

“There is no one answer, but one big task,” she stated. “… [I]t looks difficult—it is difficult; we know it.” But the difficulty of the task should not be mistaken for impossibility. Illustrating her point, Dr. Height said, “Slavery was unbelievable in terms of a task.” Yet it did not stop Harriet Tubman, who helped 300 passengers cross over to freedom on the Underground Railroad.

“We can make it,” she said, “if we join hands on the task.”

Announcements
1. NAPWA To Hold AIDSWatch 2006 from May 8 - 10
The National Association of People With AIDS (NAPWA) will hold AIDSWatch, its annual DC-based advocacy event, from Monday, May 8 to Wednesday, May 10. Each year, NAPWA invites people living with HIV to Washington, DC, where they first participate in advocacy training sessions and then take their stories, new skills, and updated materials to Capitol Hill. While on Capitol Hill, participants meet with Members of Congress and their staffs to urge them to strengthen essential health care programs—like the Ryan White CARE Act, Housing Opportunities for Persons with AIDS, and Medicaid/Medicare—through increases in funding and improvements in legislation.

This year, AIDSWatch will also assist individuals unable to travel to Washington, DC with the scheduling of meetings closer to home, in the district offices of their Members of Congress.

Interested parties may learn more about this year’s AIDSWatch by linking to http://www.napwa.org/aidswatch.html and may register for AIDSWatch at http://www.napwa.org/register_online.html.

Individuals who have questions, cannot register online, or wish to talk their plans over may contact High Noon Communications, toll-free, at 1-866-243-7282 or by sending an email to becky@highnooncommunications.com.

The AIDS Action Weekly Update
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