Readers remember the early years of AIDS

Those touched by the virus share memories of the struggle and the stigma

Visit www.msnbc.msn.com/id/13148911/from/ET/for the whole article.

Behind every AIDS death is a story. Behind each statistic is a person who is loved, who was someone's brother, mother, father, sister, aunt, uncle, friend, grandparent or lover.

On the 25th anniversary of AIDS, readers share their memories. Some have survived being HIV positive for decades and recall the fear born of ignorance by those around them.

Others are left to remember those who died, from young men taken by a disease then called GRID (Gay Related Immune Deficiency) to a 58-year-old grandmother who died following heart surgery, to a daughter wondering what life might have been like if her father had lived to see her into adulthood...

Here are their memories, in their words:

This is my 25th year living with HIV/AIDS. Those early years were like living in a one-man concentration camp, with my own body as the jailer and executioner. I have held 16 men in my arms as they took their last breaths, I have been told six times that I would not live 6 months.

How do I put into words the devastation that this pandemic has racked through my life? I have been through all of the regimes of medicine, sometimes the treatment was much worse than the disease. Many of my friends have come to say goodbye to me several times. Yet I'm still alive and live well today. I have literally had to change every thought I've ever had about everything to survive. There is not enough space here to share all that HIV/AIDS has brought into my life, from the deepest grief and depression to the highest expression of my personal faith.

— Everett, Santa Monica, Calif.

As a nurse, AIDS has had a huge impact on my life. During the early years, I lost a lot of patients. I was terrified of the disease, the unknown. Over the years, I went to AIDS conferences and got a lot of education about the disease. I became an AIDS counselor and realized just how devastating and horrible this disease is.

A few years ago, a patient I had counseled who was HIV positive came into my office, shut the door and sobbed like a baby. He couldn't breathe well and he was afraid. All of a sudden, as I held him, I realized this was the worst disease the world has ever known. He has since died.

— Trunell, Amarillo, Texas

My dad was a hemophiliac who contracted HIV/AIDS through the blood products that he used to stop his bleeding. He was devastated. At that time, it was a death sentence. When he disclosed it to his co-workers he was treated like a leper. Our neighbor was so afraid of him, she had to get counseling. (She made sure to let us know this.) She came over to our house one time, stating it was an assignment from her therapist to "confront her fear," and asked me to hug and kiss my dad in front of her to prove I wasn't afraid of him. I was so angry at her and others in our community for prioritizing their fears without trying to understand our fears. My dad lived with HIV/AIDS for 12 years, and his mission was to educate people that they needn't be afraid of him. In fact, he was more afraid of them — afraid of catching colds or infections from them that could literally kill him. He passed away in 1998.

— TJ

My mother was a nurse at an Alameda County (Calif.) Hospital that had an AIDS ward in the early '80s. I was 12 when I met an AIDS patient. He came up from behind me and said, "excuse me" in a deep voice, when I turned around, I saw a very tall skeleton. This prompted a series of very open discussions on AIDS (some were still calling it GRID) and safe-sex practices. My mother told me way back then that not only gay people get AIDS like everyone was saying, that AIDS is in the blood, so anyone can get it.

Soon after, the first heterosexual came to the AIDS ward, she was a wife and a mother. The AIDS infected her brain or nervous system, something like that, and I remembering talking to her once. She kind of broke down, crying and telling me about her regrets. It was very sad and a lot for 12 or 13-year-old to take in. However, these experiences and my mothers openness insured my condom use throughout my teen years and early 20s up until I got married.

— Rick, Sisseton, S.D.

I remember the fear. My beloved cousin had come out of the closet and moved to Houston, where he contracted AIDS. At his funeral, there was a beautiful black man with blue eyes standing in the foyer with tears dripping down his face. I introduced myself and asked if he was all right. His reply? "I'm just so tired of going to funerals." I understood, a little better anyway, of the personal toll this damned disease takes on everyone who has a soul.

— Claire, Beeville, Texas

When I was 13 years old, in 1993, my father died of AIDS. This year I have lived 13 years of my life without him. I often wonder what my relationship with him would be like now, as an adult, but the memories from my childhood years with him are good ones. I told him before he died that I thought he was the bravest man I would ever know because of what he suffered. He still is.

— Lindsay
(more testimonies available in the full article)

HIV-Positive Women Activists in Latin America Stand Tall

by Diego Cevallos
MEXICO CITY, May 11 (IPS) - Patricia Pérez, an activist from Argentina who was diagnosed HIV-positive in 1986, has been nominated for the 2007 Nobel Peace Prize for her activism on behalf of women living with the AIDS virus. But her case is an exception to the rule.

Most Latin American women who contract HIV hide their status for fear of rejection, or experience veiled or open discrimination. And the number of HIV-positive women is rising sharply.

According to the United Nations Population Fund (UNFPA), three years ago there were seven or eight men with HIV/AIDS in Latin America for every woman with the virus. But today the ratio is three to one.

Pérez, the regional representative of the non-governmental International Community of Women Living with HIV/AIDS in Latin America (ICW Latina), has raised her voice, like other activists, to warn about the increasing feminisation of the AIDS pandemic.

But above all these women advocate the right of women living with HIV/AIDS to speak out freely and without fear.

"I never thought that 20 years after being diagnosed with HIV, I would be nominated for the Nobel Peace Prize. But this is a recognition of the work of all of us," said Pérez in Mexico, before a mainly female audience who applauded enthusiastically.

Pérez, who is on familiar terms with government authorities and United Nations officials, is taking part in a meeting of 25 leaders and HIV-positive women activists from several countries being held in Mexico from Tuesday to Friday.

The participants are discussing possible strategies for the 17th International AIDS Conference, which will be held in Mexico in August 2008...

Read the rest of this article at www.ipsnews.net/news.asp?idnews=37705

Tired and Alone

from http://stillarriving.blogspot.com/ - a blog about living as a young hiv positive male

Alright well I am sure you are waiting for the updates I promised you on Monday. Here they are. My viral load fell from 44,000 to 6,000 (ish) that is awesome news! On the other hand my CD4 count also fell and is holding in the low 500’s. Hopefully we will see them continue to improve over the next few months. I have to go on blood pressure medication as well. My BP was 158/90.

In Orthopedic news they are treating me for a shin splint. No leukemia. My doc does have me out of work for the month to make sure I have the full potential for recovery. Thanks to everyone who sent out happy thoughts.

Psychologically I am exhausted. I had a breakdown this morning. I am going to give you, my readers, a rare glimpse into something that I rarely show anyone (family and close friends included). I am going to give you my unedited feelings. I have a VERY VERY VERY small core group of friends. They are the one’s that kick my ass when it needs to be kicked, come and visit me when I am sick and call me to make sure that I am doing alright on a regular basis. In addition to that my Mom and I are very close as well. So for the life of me I cannot figure out why I feel alone. At this point I feel like I don’t really belong anywhere. A part of that has to do with my medical conditions I think. I am in my early (almost mid) 30’s and I have AIDS, high blood pressure, arthritis, chronic bronchitis, a shin splint, two time cancer survivor and I have almost no sex drive. I think it bothers me tremendously that I absolutely cannot relate to 99% of the people my age. I am truly scared. I hide that from everyone. Not because I am afraid of being weak but because I have always perceived as being the strong one. I have always been the caretaker and have always been the one saying that everything will be alright. I am to the point to where I almost don’t believe that anymore. At this point the only comfort I have is in the fact that I know while scared I don’t let that emotion control my life. Without regards to fear I feel that I do still continue on with my life as best as I can.

For the next two weeks my pill burden has shot up to 24 per day. After the two weeks is over it will go down to 23. I am tired of fighting. It seems all I have done for the last year and a half is continually fight this virus and between it and me, eventually it is going to win. It has come to the point to where I have to practically overdose on uppers some days to even get out of bed. Somewhere there is going to have to be a braking point because while a fighter I can only fight and do so much before I give out. I have very seriously considered just quitting taking my anti-AIDS meds and letting things take its natural course. If that meant I had 2 weeks or 20 years then so be it. I decided against that because while I am tired of fighting I love the very essences of life.

I wish you all could have known me prior to getting sick. I was a total riot. I ALWAYS had a bountiful supply of energy (natural not the kind you take), and I loved playing sports and walking in the park. Now only a small glimmer of who I was remains. On rare occasions when I look into the mirror I catch a glimpse of him. While not all, I have lost a lot of who I was. I would do anything to have my life and my body back. I am tired or being tired, tired of being sick, tired of being scared and certainly I am tired of feeling alone for no apparent reason.

South Korean Soap Opera Aims To Reduce Discrimination, Stigma Surrounding HIV

May 04, 2007
A South Korean television soap opera that aims to reduce the stigma and discrimination associated with HIV/AIDS by portraying the story of an eight-year-old, HIV-positive girl has been receiving top ratings in its time slot, the AP/San Francisco Chronicle reports. According to the AP/Chronicle, the program’s audience has been steadily increasing since its premiere in March, and last week it reached 18.5% of television viewers during its time slot, according to AGB Nielsen Media Research.

In the show, which is called “Thank You,” the girl, Lee Bom, becomes HIV-positive through a blood transfusion. When villagers discover she is HIV-positive, they pressure her, her mother and her great-grandfather to leave the village out of fear they will contract the virus. The program’s producers have said that they aim to tell the “story of violence that rises from prejudice, discrimination and stereotype.”

According to Kim Hoon-soo, executive director of the Korea Confederation for HIV/AIDS Prevention, knowledge about HIV/AIDS in the country has increased, but “discrimination and prejudice” against people living with the disease is “still very strong and widespread.” Nam Jeong-gu, a researcher at South Korea’s Centers for Disease Control and Prevention, said the program “will help greatly to improve the public’s perception of the disease.”

Many South Koreans are reluctant to receive an HIV test because of the stigma surrounding the virus, the AP/Chronicle reports. A 2005 survey conducted among 2,022 South Koreans found that 52% of respondents would not send their children to school if another student was known to be HIV-positive. The survey also found that 40% of respondents said that HIV-positive people should be quarantined in special facilities. About 3,891 South Koreans are HIV-positive, according to government statistics. According to United Nations estimates, the number could be as high as 13,000. The country in 2006 recorded 751 new HIV cases, up from 327 new cases in 2001, the AP/Chronicle reports (Bo-Mi, AP/San Francisco Chronicle, 5/2).

You should know about Thembi Ngubane

“My name is Thembi Ngubane and I come from a township outside of Cape Town in South Africa called Khayelitsha. I look taller in these pictures than I really am. I am currently doing a tour of my country speaking about what it is like to live with HIV and AIDS. This all started with an audio diary that I began to keep in 2004 to be broadcast on National Public Radio in the United States. At first I wanted to keep my identity anonymous. But I began to love the diary and it became part of me. At the same time people around me were dying of HIV and AIDS so I felt that I had to disclose. I was invited on a five city speaking tour in the US in 2006 presenting to high schools, colleges, community centers and even for places like CNN and MTV. At this point I saw people’’s positive response and I decided that this documentary must also reach people South Africa. Reaching people with my story in South Africa is the most important thing I have done. This is because in my country everyone is either infected or affected by this disease. This blog is a recollection of this two week tour of my country.” Click here for Thembi’s Blog

Young African American Women and HIV

from http://www.advocatesforyouth.org

Also available in [PDF] format.

The HIV and AIDS epidemic has disproportionately affected the African American community across time, although rates of HIV infection and AIDS were relatively rare among black women in the early years of the epidemic.[1] Now however, HIV and AIDS disproportionately affect black women, especially young black women.[1] This document looks at some of the factors—behavioral and non-behavioral—that put young black women at disproportionate risk of HIV. It also recommends policies and programs to assist young black women to protect their health and save their lives.

Biological Factors Affect Young Women’s Risk for HIV Infection

Women’s reproductive biology puts them at greater risk of HIV compared to men. For purely biological reasons, a woman is about twice as likely as a man to contract HIV infection during unprotected vaginal intercourse with an infected partner.[1] Moreover, a young woman is even more vulnerable to infection, due to her less mature reproductive tract.[2]

The same biological factors heighten women’s susceptibility to sexually transmitted infections (STIs) other than HIV, including those that cause genital lesions,[3] and teenage women have much higher rates of some STIs than do teenage males. For example in 2004, the gonorrhea rate among 15- to 19-year-old females was 700 cases per 100,000 compared to 321 cases per 100,000 teenage males.[4] Moreover, women’s reproductive biology also means that STIs are more likely to remain undiagnosed in women than in men. Delayed diagnosis and treatment increase young women’s risk of HIV by three to five times over the risk associated with prompt diagnosis and treatment.[2,3]

Young black women are at highest risk of STIs, compared to other young women. In 2004 for example, the gonorrhea rate among black women ages 15 through 19 was 14 times greater than among white females the same age (2,791 cases per 100,000 black female teens versus 202 per 100,000 white female teens). Among women ages 20 through 24, the gonorrhea rate was 12 times greater among black women than among white women (2,565 and 209 per 100,000, respectively). The rates of primary and secondary syphilis were 16 times higher among black females ages 15 through 19 than among their white peers (6.5 and 0.4 cases per 100,000, respectively). Among women ages 20 through 24, the rate was 15 times higher among black than white women (13.4 and 0.9 per 100,000, respectively).[4]

Click here for the whole report.

Life Force needs some Life Support…and you can HELP!

Life Force May No Longer Be With You
from POZ Magazine - www.poz.com

Visit www.lifeforceinc.org to donate and for more infomation about Life Force.

March 9, 2007

Life Force May No Longer Be With You

by Lucile Scott

Having weathered a decade-long drought of realistic Hollywood portrayals of AIDS in America, the AIDS community is cheering HBO’s new film about HIV, Life Support, which debuts tomorrow (March 10) at 8 pm ET. So are the critics. However, the Brooklyn AIDS Service Organization that inspired the tale, Life Force: Women Fighting AIDS, was preparing to shut down many of its counseling and peer education programs just as HBO was rolling out the red carpet for the film’s New York premiere. Guests included its star and executive producer, Oscar nominee Queen Latifah; another of its producers, Oscar winner Jamie Foxx; and other celebs.

Life Force Executive Director Gwen Carter reports that the loss of a New York City Department of Health grant has forced her to start laying off workers beginning March 15. “I am going to have to start letting our peer educators go,” Carter says. For 18 years, Life Force has recruited and trained HIV positive Brooklyn women, most of them African Americans or Latinas, to head out into the borough’s grittier neighborhoods and spread the HIV word. It also offers testing and support services for people with HIV and their families. “There is a trend toward funding larger organizations that are a one-stop shop, but don’t have people from the community,” says Carter. “We believe that people accept information from others who look and talk like them, and the majority of our educators are from the community and are HIV positive.”

The movie’s writer and director, Nelson George, based the plot on the life of his HIV positive sister, Andrea Williams, who does outreach for Life Force. The film ends with a shot of Williams herself walking the streets of Brooklyn as a voiceover states that the lady who lent her life story to the film is still out in the streets, educating people and handing out condoms. But for how much longer? “If Life Force closes its doors, the black community will be missing a face on AIDS awareness,” says comedian Tony Rock, who plays an HIV positive man in the film. “And people seem to think that if something isn’t right in their face, it doesn’t affect them.”

With all this high profile publicity, can’t the organization get funds elsewhere? Susan Nowak, a spokesperson for HBO, says, “Our goal is to educate people about the issues, not to fund-raise. We could give them millions of dollars but tomorrow they would still be in the same situation.” Actually, it would take $193,000, the amount the organization lost in city funding, to get Life Force through to the end of the year. (Carter says Queen Latifah and her charitable foundation have given the group $5,000; HBO gave it $3,500 in March of 2006.) For now, the group has enough funds from the Centers for Disease Control—slightly less than the year before—to cover testing and other basic services, but not counseling or outreach. “It’s not about if you do the work well, but if your proposal is well written,” Carter says of the grant approval process. “Smaller community-based organizations don’t have time to write the proposals and can’t pay people to do it.”

Indeed, Rachel Miller, senior deputy director of HIV Care Services at Medical and Health Research Association, which reviews grant proposals for the NYC Department of Health, says the grant decision was based on a roughly 20-page proposal answering multiple highly nuanced questions. “Sometimes the grant writing is not that strong,” she says, adding that Life Force failed to earn the 70 points necessary for a contract renewal. “We liked Life Force,” she says. “But this is what happens during the re-bid of government funding. You win some and you lose some.” She says this year NYC has decided to give fewer grants of larger sums, with the number available dropping from 70 to 39. In addition, she says, there is also less money available for AIDS organizations overall than there has been in the past.

Meanwhile, Carter reports, the peer educators are meeting and strategizing to find ways to keep putting their prevention message out in the streets. One free condom at a time.