Showing posts with label AIDS. Show all posts
Showing posts with label AIDS. Show all posts

September 18, 2017

Analysis: WE Must Better Address The Needs of LGBT People with Disabilities


LGBT people with physical disabilities face unique challenges as compared to their able-bodied peers. Throughout their lives, these individuals are subjected to increased rates of childhood bullying, a lack of proper sexual education as teenagers and difficulties in receiving proper medical care as adults.

Childhood Bullying

“Homophobic, biphobic or transphobic (HBT) bullying is any form of bullying directed toward a person because of their real or perceived sexual orientation or gender identity, or because of their association with people who are LGBT,” according to the UK-based Anti-Bullying Alliance.

In a guide for school personnel regarding HBT bullying targeted toward disabled children and kids with special needs, the Anti-Bullying Alliance notes that this population is at an increased risk of HBT bullying compared to their able-bodied peers: two-thirds of children with disabilities and special needs have experienced homophobic bullying, for example, compared to 55 percent of the general population. The organization also points to additional research corroborating that a real or perceived physical disability is a frequent reason for HBT bullying.

Sexual Education

The Anti-Bullying Alliance also points to the lack of sexual education in a school directed toward LGBT individuals, and it gets even worse in the case of LGBT individuals with a physical disability.

Dr. Susan Gray, an assistant professor of pediatrics at Harvard Medical School, said it’s important that parents of adolescents with physical disabilities make sure their child is receiving the proper sexual education.

“Too often adolescents with physical disabilities are told they don’t need to be in sex ed, that it doesn’t apply to them, but everyone needs that information, and parents need to make sure their kids get that education,” Dr. Gray said in a video posted to the Cerebral Palsy Foundation’s website.

Not having this conversation in school is a lost opportunity to normalize LGBT behavior, which could prevent or minimize HBT bullying. According to the Anti-Bullying Alliance, “bullying is often directed at the real or perceived differences,” therefore we should do everything we can to minimize what is perceived as different. Sexual Education should be for all, with no discrimination of gender, sexual preference or physical ability.

A Focus on Cerebral Palsy

Though much of this analysis is relevant to LGBT people with a range of physical disabilities, some of it pertains specifically to LGBT people with cerebral palsy (CP). CP is primarily associated with childhood — and is the most common motor disability found in children — however, there are increasing numbers of individuals with CP surviving longer into adulthood. There is an estimation of at least 500,000 adults with CP in the U.S. alone.

“Cerebral Palsy is a non-progressive disorder resulting from a malformation or injury to a child's brain typically before age four. This results in an imbalance of muscle forces leading to joint contractures, deformities, and abnormal movements,” Joseph Dutkowsky, M.D., former president of the American Academy of Cerebral Palsy and Developmental Medicine, explained.

Developing Social and Romantic Relationships

A Dutch study among adolescents with CP ranging from 16 to 20 years old revealed that they had significantly less experience in dating and intimate relationships than their age mates. This finding is corroborated by other studies and suggests that individuals with CP may be “late bloomers” when it comes to relationships, but they are surely interested in having relationships just as much as anyone else.

Interestingly, this study also reported that adolescents with CP are less likely to identify as heterosexual than their age mates without CP (90 percent vs. 97 percent in age mates), and were also more likely to explicitly say that they were not sure of their sexual preference (4 percent vs. 1 percent in age mates).

Another Dutch study showed that establishing a healthy network of friends is an important pathway for individuals with disabilities to develop romantic relationships. According to Dr. Dutkowsky, one way to develop this network is by helping people with Cerebral Palsy to participate in arts, also as a way to “give them the opportunity to fully express themselves and grow into their own life”.

Another challenge that individuals with CP face are finding specialized medical care, particularly as adults, as many health professionals specialized in CP focus on treating only children. The Weinberg Family Cerebral Palsy Center is one of the few clinical facilities to provide specialized health care throughout the entire lifespan for individuals with CP. Tracy Pickar is a social worker at the Weinberg Center and echoes some of the concerns elicited by these studies.

“I’ve heard from some our patients that due to the social isolation they may have delayed sexual experiences," Pickar said. She also noted that general medical providers “are so focused on medical issues that no one talks to the patients about their sexual health needs.”


Given the increasing number of individuals with physical disabilities living into adulthood, issues associated with growing up, such as establishing healthy relationships, are becoming more prominent. As practitioners, it is important for us to work with young adults with physical disabilities to help them develop healthy pathways for relationships.

While arts-related activities have always been a safe haven for the LGBT community, it might be even more important for individuals who also have a physical disability, in order to help them establish healthy relationships and to be able to fully express themselves. Encouraging their participation in arts might be one of the best long-term interventions for their mental health that families and friends could ever do.

It is also imperative that LGBT individuals with physical disabilities receive the proper sexual education while in school just as anyone else. Sex is a reality for everyone, regardless of gender, sexual orientation or physical ability, therefore everyone deserves to be well educated about this topic.

Daniel Linhares, M.D., is an assistant professor of psychiatry at Columbia University Medical Center and is specialized in providing holistic psychiatric care to medically complex patients. Dr. Linhares’ expertise is in psychiatric care of the medically ill, LGBT psychiatry and psychodynamic psychotherapy

May 24, 2017

Trump's FY18 Budget Puts LGBT Lives in Jeopardy

GLAAD Condemns Drastic Proposed Cuts to Ryan White HIV/AIDS Program, CDC, and Planned Parenthood 
NEW YORK – GLAAD, the world’s largest LGBTQ media advocacy organization, responded after President Donald Trump released the administration’s 2018 fiscal year budget, which highlights their key objectives and priorities in the upcoming fiscal year. The budget includes proposed slashes to programs and departments critical to the LGBTQ community, including Medicaid, Planned Parenthood, and the Center of Disease Control’s HIV and AIDS programs.
Further, the Trump Administration proposed additional cuts in the FY 2018 Budget that could also endanger policies geared to assist transgender women of color and their access to quality HIV-related health care.
“This budget would pull the rug from under some of America’s most marginalized communities, including transgender women of color, at a time when they need our help the most,” said Sarah Kate Ellis, President and CEO of GLAAD. “President Trump’s budget is heartless and the latest example of the Administration working to systematically erase LGBTQ Americans from the fabric of this nation.”
Moreover, the proposed budget also slashes dollars to the Health and Human Services’ Office of Civil Rights. This office is charged with helping marginalized communities, including LGBTQ Americans, gain access to health care and human services providers without discrimination. Roger Severino, who has a long history of anti-LGBTQ activism and remarks, was appointed to lead the Office of Civil Rights earlier this year.
GLAAD has been documenting the administration’s systematic erasure of the LGBTQ community and policies intended to support LGBTQ Americans. Click here to visit GLAAD’s Trump Accountability Project.
BACKGROUND INFORMATION: How the Trump Administration’s Proposed Budget Harms LGBTQ Americans
Health and Human Services Cuts to LGBTQ Health Care Access
Eliminates $59 million from the Ryan White HIV/AIDS Program. [Health and Human Services FY 2018 Budget, Page 24]
Proposed discontinuing the Ryan White HIV/AIDS Part F AIDS Education and Training Programs and Special Projects of National Significance. [Health and Human Services FY 2018 Budget, Page 24]
The Special Projects of National Significance features a program geared toward transgender women of color

Cuts $186 million in HIV/AIDS, Viral Hepatitis, STIs, and TB prevention CDC funding [Health and Human Services FY 2018 Budget, Page 28]

Drops $6 million in funding for HHS Office of Civil Rights [Health and Human Services FY 2018 Budget, Page 95]
Cutting Medicaid Harms People with HIV and AIDS
Advocate: Trumpcare Could Bring HIV Roaring Back: By gutting Medicaid expansion and other benefits, the proposal could complicate PrEP access and promotion in the states that adopted Medicaid expansion. If passed, the new bill will begin to eliminate money for Medical expansion in 2020, potentially blocking new applicants and access to critical medication…
WGBH News: Trumpcare Would Harm LGBT People And Those Living With HIV: “Changes to Medicaid proposed by the AHCA would put many people with HIV at risk of losing access to life-saving medicines and treatment” […] Trumpcare would also reverse ACA-related changes to Medicaid eligibility that have benefitted LGBT people. Previously, only low-income adults with dependent children or low-income adults with a disability were eligible for Medicaid. Now people are eligible for Medicaid on the basis of income alone. Since many LGBT people do not have children, this change has made it easier for them to enroll in Medicaid.”
Defunding Planned Parenthood Harms Trans Americans
HEADLINE: Trump’s Budget Proposes Kicking Planned Parenthood Out of All Federal Programs [New York Magazine, 5.23.17]
Daily Beast: The Attack on Planned Parenthood Hurts Transgender People, Too: “But a lesser-known consequence of the attack on Planned Parenthood is its potential impact on transgender people like Burns who rely on the organization for transition-related medical care. Elizabeth Clark, Planned Parenthood’s director of health media, told The Daily Beast that health centers in 16 states—including California, Florida, New York, and Illinois—currently offer hormone therapy to transgender patients. From 2013 to 2015, she added, there was an 80 percent increase in affiliates that reported offering that treatment.”
The Guardian: How defunding Planned Parenthood could wipe out transgender healthcare; “Unbeknown to many, Planned Parenthood is one of the largest sources in the US of transgender healthcare. The embattled provider offers hormone replacement therapy, which helps a person’s body appear more masculine or feminine, at dozens of its locations, and a growing share of its staff are trained to perform routine sexual health exams for trans patients.
Planned Parenthood in recent years has sought to address that problem. And it has made its clinics a magnet for thousands with few other options. Starting with Planned Parenthood of the Southern Finger Lakes, in upstate New York, a growing number of its health centers have become places where trans people can begin to transition medically, as well as get basic reproductive services. Its centers use a newer model for gender transitioning that gives the patient input on whether to start their transition, rather than turning the decision over entirely to a psychiatrist. Some clinics have staff with detailed knowledge of how to update driver’s licenses, passports and social security cards to reflect someone’s name and gender.”

August 16, 2014

The Advent of AIDS a helper in Gay rights

This 1986 photo of Ken Meeks – taken three days before he died of AIDS – put a human face on the ‘gay plague.’
In the early 1980s, a new disease ravaged the gay community. It had many names: gay pneumonia, gay cancer, the gay plague and the more formal gay-related immune deficiency. The symptoms were visible and immediately recognizable: a disfiguring cancer called Kaposi’s sarcoma, extreme weight loss (wasting) and suffocating pneumocystis carinii pneumonia. The deadly disease, renamed acquired immune deficiency syndrome after the virus was identified, travelled quickly through the gay community, but fear travelled even faster in mainstream society.
Gay men, even men suspected of being gay, lost their jobs – they were evicted from apartments and they were ostracized. Newspapers carried earnest stories about the risks of catching AIDS from a toilet seat in a public restroom. Funeral homes refused to handle bodies, and hospitals turned patients away, or placed them in isolation. There was talk of quarantining the sick in modern-day leper colonies and tattooing the infected to warn prospective sex partners of the danger.
“No one is safe from AIDS,” blared Time magazine, which, in the pre-Internet era, was hugely influential. Pat Buchanan, communications director for president Ronald Reagan, called AIDS “nature’s revenge on gay men.” Some far-right fundamentalist preachers called for the death penalty for homosexuals and, across the Western world, there were moves to bar gays from the classroom, from health-care jobs and more.
It was a time of stigmatization and oppression, eerily similar to what is going on again now in large parts of the developing world, but on a grander scale and with more dire consequences. At least 76 countries in Africa, Asia and the Caribbean have enacted anti-homosexual laws, and homophobia – and more disturbingly state-sanctioned homophobia and vigilantism – is on the rise. Sudan has the death penalty for anyone found to have committed “homosexual acts,” Uganda has harsh prison sentences for anyone who even dares to speak out in defence of a “known homosexual,” and Russia has labelled gay-rights groups as “enemies of the state.”
At the same time, three decades after the “gay plague” began, there is an once-unthinkable acceptance of same-sex relationships in the Western world: Gay marriage is widely accepted, human-rights protections have been extended to gays and lesbians, and events like World Pride are not only mainstream family activities, but tourist draws.
How did this happen? How did fear of pestilent homosexuals give way to acceptance of men loving men? And are the horrors that are taking place now in the developing world the last gasp of homophobes, an inevitable clash on the road to gay liberation?
“What we’re seeing today is two parallel stories: the relentless rise of lesbian, gay, bisexual, transsexual [LGBT] rights in the Western world and the rise of homophobia and the trampling of rights elsewhere, and something has to give,” says Craig McClure, a former activist with the radical AIDS group Act Up and now the chief of HIV-AIDS at Unicef.
He says a lot of activists who fought the early battles for gay rights in the West are now in positions of power and influence, and they have an obligation to speak out for and come to the aid of those who are now being jailed, beaten and threatened with death because of their sexual orientation.
“I think we need to do a lot more to support our brothers and sisters in the developing world,” Mr. McClure says. “We should be as furious today as we were in the early days of the epidemic.” And furious they were.
When AIDS came along in the early 1980s, the gay rights movement was well under way. It was born, symbolically at least, in June, 1969, when police conducted a routine raid on a New York bar called Stonewall. Angered by the harassment, members of the gay community took to the streets in what came to be known as the Stonewall riots. The scenario was repeated with raids on bathhouses and gay bars in Toronto, Montreal and elsewhere, and the community pushed back with demonstrations and lawsuits. Emboldened, the gay bathhouse subculture came out of the shadows and many embraced promiscuity as a form of revolution.
When AIDS struck, priorities changed, and quickly, from hedonism to survival. And, ironically, the advent of AIDS probably advanced gay rights more than anything else in history.
“HIV-AIDS changed public perceptions a lot: It showed a more humane side of the community,” says Ed Jackson, director of program development at Canadian AIDS Treatment Information Exchange, and a longtime activist. “It also galvanized gay men into being more active and more visible. It brought people out of the closet.”
Mr. Jackson said the large number of HIV-positive men, and the often-overlooked contributions of many lesbian women who cared for the sick, forced members of the gay community to interact with the system, instead of living on the margins. In fact, many of the early battles that mobilized the community were about seemingly mundane issues such as the right to visit partners in hospital (people were refused access because they were not considered immediate family, even if they were in long-term relationships), taking time off to be with loved ones who were sick and dying and claiming insurance benefits.
Gay rights came incrementally as these battles were waged before administrative tribunals and the courts and, in the process, gay and lesbian couples became more mainstream.
“We went from being marginalized as sick people to being normalized,” Mr. Jackson says. “Along the way, a lot of desires became mainstreamed; we wanted to be like everybody else, which is why you saw a push for things like gay marriage.
“We chose the straight path, if you will,” he adds with a smile.
Africa’s response was radically different
AIDS hit Africa about the same time as it did Western countries and affected the same demographic groups, principally men who have sex with men, recipients of blood and blood products and intravenous drug users. But the response was very different from places like Canada. Instead of rage and activism, there was denial and inaction.
AIDS was dismissed as a disease of Westerners with perverse sexual habits. The party line in virtually every country on the continent was that there are no homosexuals, and that Africans don’t engage in the unnatural acts that spread the disease. This dismissal delayed any serious response to the epidemic, and AIDS spread like wildfire, assisted greatly by truckers who travelled the transcontinental route that came to be known as the “AIDS highway” and the sex workers who populated road stops. By the late 1980s, when the rates of infection became so high that they could no longer be denied, AIDS was portrayed as a heterosexual disease, which was spreading so rapidly because men were promiscuous.
“It was never true that HIV-AIDS was uniquely a heterosexual disease in Africa,” says Christine Stegling, executive director of the International Treatment Preparedness Coalition, and a long-time AIDS activist in Botswana.
“The reality is that there are men who have sex with men in Africa, just as there are everywhere, but because of the stigma, they marry and otherwise remain hidden,” she says.
“Politicians and governments have always refused to acknowledge that these practices and these communities exist.
“What’s different now is that gay men and transgendered people are starting to come out – in large part because rates of HIV-AIDS are so high in these communities – and that is making it a lot more difficult to deny their existence. This, in turn, has fuelled a backlash and the introduction of repressive anti-homosexuality laws.”
“HIV has been devastating but it has also created an entrance for LGBT work to be done,” Ms. Stegling adds.
“There is a lot of activism for rights in these communities but the response has put a lot of people’s lives in danger.”
Paul Semugoma, a Ugandan physician, knows that all too well. He is on a “wanted” list in his home country (where homosexuality is a crime) because he has spoken out for gay rights, and lives in exile in South Africa.
Dr. Semugoma decided to come out himself two years ago, for a couple of reasons. Gay activist David Kato, a close friend, had been murdered and he felt like a hypocrite. Also, he was treating large numbers of patients with HIV-AIDS but realized that men who have sex with men were reluctant to seek help for fear of being found out. Rates of HIV-AIDS in men who have sex with men in Africa are about 10 times those of the heterosexual population.
“I was gay, I was having sex and nobody knew about it,” Dr. Semugoma says. “But I realized that, with HIV-AIDS, silence is literally death, so I couldn’t be silent any more.”
As in the West, he adds, the AIDS epidemic is pushing gay men out of the closet and thrusting them into the public eye. But, unlike in the West, the evangelical movement that is so rabidly homophobic, holds much more sway, and corrupt, dictatorial governments are far less likely to “do the right thing” by extending rights to a beleaguered, oppressed minority. On the contrary, gays are a handy scapegoat.
“In Uganda, the anti-homosexuality law was presented as pro-African, anti-West legislation. It’s us versus them,” he says. “But I reject that. I’m a gay man. I’m a Ugandan. I’m an African.”
But the situation is not altogether dire, he notes. South Africa was one of the first countries in the world to legalize gay marriage and one of the few countries where discrimination against gays and lesbians is barred in the constitution. Uganda, because of its anti-homosexuality laws, is also becoming a human-rights pariah, in much the same way that South Africa’s apartheid regime was isolated and pressured to change.
“All this discussion is forcing people to recognize that there are gays in Africa, just as there are everywhere in the world,” Dr. Semugoma says. “We will always be a minority, but one day we will be a minority with rights.”
“Even in Uganda?” he is asked.
“It’s my country,” he replies pensively. “Whether it’s two years, 20 years or 50 years, I will return some day as a full citizen.”
The Globe and Mail

January 16, 2014

Professor of U of T Gives Seminar on AIDS Blaming it as a Gift from Gay Men

HIV-positive student hopes to start discussion about social stigma concerning gay men and HIV
A University of Toronto professor of virology plans to apologize to his class after he gave inaccurate and stigmatizing information about gay men and HIV.
Mounir AbouHaidar made the comments during a Dec 3 lecture in front of approximately 300 students. 
Rodney Rousseau, a gay biochemistry and sexual diversity studies student who is HIV-positive, objected to the remarks, which he called "really triggering for a positive person.
“So that’s why it’s extra offensive to me," says Rousseau, noting that a small group of students are planning an educational protest for the beginning of January when classes resume.
Rousseau provided Xtra with an audio recording of the lecture, in which AbouHaidar states, “The guy will have a resistant strain, or resistant strains, of the virus to most of the drugs which are available; then he will sleep with his boyfriend, which is, as we call it, men sleeping with men, MSM, and then give his boyfriend the best gift, give him a strain of the virus, which is resistant to all the drugs. That’s what he has, that’s what it is, that’s probably 90 percent, 90 percent . . . HIV has millions of people, 90 percent from homosexual.”
Rousseau says that when he heard this misinformation he raised his hand and objected.
HIV infections among men who sleep with men in fact account for 50 percent of all HIV infections in Canada, according to CATIE (the Canadian AIDS Treatment Exchange). “Nowhere near the 90 percent professor AbouHaidar has claimed,” Rousseau says, noting he also told AbouHaidar he is unfairly stigmatizing men who have sex with men as “HIV gift-givers.” 
Rousseau says AbouHaidar is framing the virus as a “gift” between “boyfriends," and by using male pronouns and gay men as examples, he seems to be telling his class that HIV is a gay issue.
“He told me that he didn’t need correcting, that he wasn’t giving misinformation,” Rousseau says, noting he’s also noticed that AbouHaidar only ever talks about a person with HIV as a gay man. “Throughout the whole class he uses the term ‘boyfriend’ to define the partner of another man,” he says. “That’s done specifically to say HIV is a gay issue . . . he never uses ‘partner,’ ‘they’ and he definitely never uses ‘she.’
“He needs to stop saying things that aren’t true and perpetuating the stigma of a social issue.”
Rousseau wants to see AbouHaidar apologize, correct the misinformation in class and perhaps undertake some education on the social impacts of HIV.
For his part, AbouHaidar, who has been teaching HIV virology for about 30 years, tells Xtra that he plans to correct his statements and provide his class with accurate information. “Well, if I said 90 percent, I’m wrong,” he says. 
Regarding the use of male pronouns, AbouHaidar says students shouldn’t read so much into it. “I’m not anti-gay or pro-gay. It’s not my business who sleeps with who. It’s my job to tell students how the virus is transmitted.”
AbouHaidar says he wasn’t aware that referring to HIV as a “gift” — which implies that the person being infected with HIV is asking for it — could be seen as problematic.  
“It wasn’t meant to be against any group,” he says. “Now, because there are many viral drugs that are used, there are resistant strains circulating around. Sometimes in lectures I am known to be funny, and make jokes, in order to make stuff stick [with students] . . . these are education methods.
“It’s obviously not a good gift,” he says. “I can see how it’s [derogatory]. But we are all adults.”
AbouHaidar says that if students have concerns or wish to challenge his information, they could raise the issue during the tutorial sessions or schedule a meeting after class. He says he has never heard complaints about the content of his lectures before. “That is the forum to ask questions. My door is always open. I would speak to anyone about this.”
It’s also possible, he says, that part of the problem is a language barrier. He says he has a thick Lebanese accent. “And I was educated in France. I have a bit of a French accent as well. When I give examples, and talk, I am not against anybody. I am warning my students to be aware. It’s their lives. One mistake can cost them their lives.”
AbouHaidar maintains he is apologetic and doesn’t want to stigmatize anyone. “I feel really bad. We want to clear this virus from the world. We work in vaccines so hopefully in the long run we might end HIV. When you see the millions of people dying, you are scared. [But] I don’t want to stigmatize anyone . . . perhaps the way I express something is not right for some people.
“I am not afraid to say I am wrong, and I am sorry. If I said 90 percent, that’s wrong. I will correct [the information] for the class.”
While Rousseau is pleased that AbouHaidar will correct the record in class, he still plans to hold a demonstration after the holidays.
“I definitely think there needs to be some discussion because it’s still a problematic situation that it occurred at all,” he says. “Do I want to point my finger at [AbouHaidar]? No. He seems to be accepting fault in this rather quickly, and that’s really good. So I have to consider the best way to create a more broad discussion around this issue.”


December 22, 2013

Scientists Discover How AIDS Cells Kill The Immune System

AIDS virus

Scientists have discovered that the AIDS virus destroys the immune system by infecting a relatively few number of cells that create a fiery pathway that consumes nearby cells. Finding could lead to treatments to dampen disease activity.

Scientists have long known that HIV sets up little biological factories inside the the body's protective CD-4 T cells they infect, producing millions of copies that eventually lead to a massive destruction of the immune system. Until now, investigators have not understood why the virus becomes so aggressive.

It turns out HIV, which infects only a small number of T cells at the start, destroys approximately 95 percent of immune cells through a process known as the bystander effect.

Warner Greene, head of virology and immunology at the Gladstone Institutes in California, says bystander cells that are in the neighborhood of HIV-infected cells succumb to a fiery death.

“Most CD4-T cells during HIV infection die not because of the toxic effect of the virus, but because of an immune response against the virus.  So, CD4 cell depletion is more of a suicide than a murder," said Greene.

Gladstone scientists have discovered that the bystander cells become massively inflamed, releasing a protein called capcaisin-1 that recruits other immune system T cells to the site of the infection to try to put out the fire.  But the new cells also become inflamed and self-immolate.

That turns out to be good news in the sense that inflammation can be quelled with existing drug compounds.

Greene says researchers have tested three agents in the laboratory, including one developed to treat epilepsy.  He says all three compounds have worked very well to manage the inflammation.

While anti-inflammatory drugs would not be a cure for the AIDS virus, Greene says they could potentially keep the disease in check in some 16 million people worldwide infected with HIV who can’t access antiretroviral drugs but may in the future.  Greene also envisions using anti-inflammatory compounds in combination with anti-AIDS drugs.

“Perhaps with people who have rapidly progressive disease, perhaps for people who are failing current antiretroviral therapy, they would go on this treatment.  And even people who are well-controlled on antiretroviral therapy, we know there is chronic, persistent inflammation," he said.

Such inflammation can cause heart disease and cancer in HIV-infected individuals at an early age.

Warner Greene and colleagues report their findings in the journals Nature and Science.

Jessica Berman

December 16, 2013

AIDS Agencies are getting Less Donations Some Say “Good”They Have $quandered $ it $

 People are talking about abuse in HIV programs.  It is said that money should be withheld from non profits because of the abuse and mismanagement in those programs particularly in the age of AIDS. The Largest AIDS non profit(GMHC) in New York City if Not the Country is cutting services and getting rid of staff due to their mismanagement of funds. They break a lease in the building were housed for a better looking one in the west Village which I understand they bought and got stuck paying rent on the older and payments on the new one.  Why? It’s easy to speculate since the CEO got fired (replaced by the person that helped convince the board to make this misstep). There had to be money or gains for the people wanting to make this move and for the entire board that voted for this.  This is something you just can’t justify unless you are dealing with corrupt individuals. Which they are!
Meanwhile services cut,low level staff jobs eliminated and the money of the upper echelon grown with raises and bonuses’. You hear this and you want to throw these people on the Hudson River. The argument to throw these guys to the wolf’s is easy to make but the issue is not that simple when you have people with serious problems in the middle.

 I too worked for non-profits.  Both in Staten Island and Manhattan. As volunteer and staff. I see my time with them as one of the best things I’ve done professionally and as a human being. When AIDS first appeared in the news,  I remember watching a program on TV showing actual HIV’ers. Never before Have I seen people saying privately never mind publicly that they were HIV. Now this bunch was on TV. They look ok and more than that, I recognized two of them and one was someone I dated briefly years before.  I will bump to him every time I went to the west village because he worked on a store there.  His name was Frank.  Every time he saw me he will always hug me and kissed me like a long lost brother. Frank was a good guy, just not for me as a partner.

I was so moved watching him talk on tv. There was a group of about eight or so. I told my partner besides me watching, I want to volunteer to a hospital and do something for the sick and dying. After that talk on tv it was clear to something I already suspected and it was that you did not contact it by casual contact. For all I knew I also had it because there were no testing for the public.I was very young and I made my decisions on the spot without much deliberations. I got excited and asked my partner if he was interested.

He brought me back to earth by telling me he wasn’t going to do it and then to my shock because he usually follow me in my decisions, this time he told me I was not going to do it either. We had a fight over it telling  him I decided I was going to do it and that was it. He said go ahead but you won’t find me here when you come back. That was the end of it. Never again did I do any volunteering until I was no longer in my filed and tried something new. That was about 20 years latter and not too long ago.

 I saw some of what people talk about but it was the exception not the rule. The help for poor HIVr’s comes from the obvious.  As the HIVr got sick or was not able to work he lost his apartment and became destitute, etc. 
The problem with the program was that it concentrated only on a portion of HIVr’s and that was the very poor.  It left out the HIV’’r that worked hard all his life and became sick. Lost his/her health insurance and any money went for rent, not even for treatment. They got very little help because the money they got from SSDI was not enough to keep them in their apartments or houses if they had mortgages because they did not qualify for medicaid. Most programs to help HIVrs are paid through Medicaid. Not qualifying meant total disaster for this individual while the help went for the ones that sometimes never really worked in their lives. They got SSI which gave them medicaid and the access to free medical care, meds and housing. The ones that got SSDI got medicare which only overs certain things and only at 80% rate. That’s where it failed. 

We still have that problem and the need. There was never a good system in place to assist either type of HIVr. But the need still there. New housing constructed for people making some money  but not a lot of money needs to be expanded giving preference to those hive’s or sick people collecting insurance on their work but not able to pay today’s high rents, like in NYC and other big cities. 

These are the new endanger species because they will become homeless and fall by the side lines when they could still contribute as long as they had their permanent apartment in place. The shelter problem for these people is as impotent as the expensive meds for them to survive. We would have spent the money of meds for nothing on these people because we will loose them to disease, mental deterioration, suicide and homelessness. They know how to do it now but is being done in such small ways that I don’t know if it will make a real difference. We need to look at the good any agency does and fix the bad.
The money is needed but it no longer should be given to these agencies who did a great job until they got greedy and took more money for the people running the programs than the money spent on actual help and even then, they hid and recycle like John says. 

 If we try to punish these agencies by withholding money to dry them out we will hurt people they help. Lets make it hard for them to pay high salaries and have nice buildings and lets give the new money to new programs getting off the ground with new science of what works and doesn’t work. People need to go into the non profit field  because they need to do something good, not a way to get a better house and more expensive car. The CEO running the nonprofit should be in  the same financial level as the people they serve. Poor people are not poor because they can’t think and can’t learn. They are poor because the financial system that we have that keep 1% with the money and everybody else in the poor. This system of capitalism continues to survive with the same promise religion keeps its followers.  

If you follow thee rules you too will go to heaven.  But people keep dying and we never find out if they ever made it to see heaven.  You need faith we are told. People keep dying and never become rich because that would break a system geared to have the majority on top be supported by the bottom..  We need faith in our form of government; But the richer they are the more money they need which comes from the people below. But we keep it because we say, “I want to know if I do well I be rewarded and get my business or get better things in life”. They get the business but it either goes under or they have to work 7 days a week at the expense of their families and only to pay their bills and taxes for the rich.
Adam Gonzalez, Publisher

"Treatment is not only about pills. Treatment is about life, rights, dignity, investment and the democratization of access through innovation, simplification and centralising the role of the community."
UNAIDS Executive Director Michel Sidibé
“Our collective goal is the end of the AIDS epidemic, and treatment is one element to reach that goal.”
Mark Dybul, Executive Director, The Global Fund to Fight AIDS, Tuberculosis and Malaria
“The United States is committed to the AIDS response. Last week, President Obama signed the re-authorization of the President’s Emergency Fund for AIDS Relief (PEPFAR).”
Caroline Ryan, Deputy Global AIDS Coordinator (PEPFAR)
“Local leadership is key to accelerating access to HIV treatment.”
Catherine Hara, Minister of Health, Malawi
“Along with anaesthetics, vaccination and antibiotics the discovery and development of anti-retroviral drugs ranks among the greatest medical advances of all time. When the end of AIDS has come the human cost will have been extremely high but the legacy of our struggle will be the knowledge it has given us on how to manage and control the myriad of other viral diseases that threaten and afflict us.”
Brian Williams, Chair of the Board of Trustees, SACEMA

December 1, 2013

The Photo on ‘Life’ That Showed AIDS and Changed the Epidemic

November 1990 LIFE magazine published a photograph of a young man named David Kirby — his body wasted by AIDS, his gaze locked on something beyond this world — surrounded by anguished family members as he took his last breaths. The haunting image of Kirby on his death bed, taken by a journalism student named Therese Frare, quickly became the one photograph most powerfully identified with the HIV/AIDS epidemic that, by then, had seen millions of people infected (many of them unknowingly) around the globe.
More than two decades later, on the 25th World AIDS Day, shares the deeply moving story behind that picture, along with Frare’s own memories of those harrowing, transformative years.
 “I started grad school at Ohio University in Athens in January 1990,” Frare told “Right away, I began volunteering at the Pater Noster House, an AIDS hospice in Columbus. In March I started taking photos there and got to know the staff — and one volunteer, in particular, named Peta — who were caring for David and the other patients.”
David Kirby was born and raised in a small town in Ohio. A gay activist in the 1980s, he learned in the late Eighties — while he was living in California and estranged from his family — that he had contracted HIV. He got in touch with his parents and asked if he could come home; he wanted, he said, to die with his family around him. The Kirbys welcomed their son back.
Peta, for his part, was an extraordinary (and sometimes extraordinarily difficult) character. Born Patrick Church, Peta was “half-Native American and half-White,” Frare says, “a caregiver and a client at Pater Noster, a person who rode the line between genders and one of the most amazing people I’ve ever met.”
“On the day David died, I was visiting Peta,” Frare, who today lives and works in Seattle, told LIFE. “Some of the staff came in to get Peta so he could be with David, and he took me with him. I stayed outside David’s room, minding my own business, when David’s mom came out and told me that the family wanted me to photograph people saying their final goodbyes. I went in and stood quietly in the corner, barely moving, watching and photographing the scene. Afterwards I knew, I absolutely knew, that something truly incredible had unfolded in that room, right in front of me.”
“Early on,” Frare says of her time at Pater Noster House, “I asked David if he minded me taking pictures, and he said, ‘That’s fine, as long as it’s not for personal profit.’ To this day I don’t take any money for the picture. But David was an activist, and he wanted to get the word out there about how devastating AIDS was to families and communities. Honestly, I think he was a lot more in tune with how important these photos might become.”
Frare pauses, and laughs. “At the time, I was like, Besides, who’s going to see these pictures, anyway?
Over the past 20 years, by some estimates, as many as one billion people have seen the now-iconic Frare photograph that appeared in LIFE, as it was reproduced in hundreds of newspaper, magazine and TV stories — all over the world — focusing on the photo itself and (increasingly) on the controversies that surrounded it.
Frare’s photograph of David’s family comforting him in the hour of his death earned accolades, including a World Press Photo Award, when published in LIFE, but it became positively notorious two years later when Benetton used a colorized version of the photo in a provocative ad campaign. Individuals and groups ranging from Roman Catholics (who felt the picture mocked classical imagery of Mary cradling Christ after his crucifixion) to AIDS activists (furious at what they saw as corporate exploitation of death in order to sell T-shirts) voiced outrage. England’s high-profile AIDS charity, the Terrence Higgins Trust, called for a ban of the ad, labeling it offensive and unethical, while powerhouse fashion magazines like ElleVogue and Marie Claire refused to run it. Calling for a boycott of Benetton, London’s Sunday Times argued that “the only way to stop this madness is to vote with our cash.”
“We never had any reservations about allowing Benetton to use Therese’s photograph in that ad,” David Kirby’s mother, Kay, told “What I objected to was everybody who put their two cents in about how outrageous they thought it was, when nobody knew anything about us, or about David. My son more or less starved to death at the end,” she said, bluntly, describing one of the grisly side effects of the disease. “We just felt it was time that people saw the truth about AIDS, and if Benetton could help in that effort, fine. That ad was the last chance for people to see David — a marker, to show that he was once here, among us.”
David Kirby passed away in April 1990, at the age of 32, not long after Frare began shooting at the hospice. But in an odd and ultimately revelatory twist, it turned out that she spent much more time with Peta, who himself was HIV-positive while caring for David, than she did with David himself. She gained renown for her devastating, compassionate picture of one young man dying of AIDS, but the photographs she made after David Kirby’s death revealed an even more complex and compelling tale.
Frare photographed Peta over the course of two years, until he, too, died of AIDS in the fall of 1992.
“Peta was an incredible person,” Frare says. Twenty years on, the affection in her voice is palpable. “He was dealing with all sorts of dualities in his life — he was half-Native American and half-White, a caregiver and a client at Pater Noster, a person who rode the line between genders, all of that — but he was also very, very strong.”
As Peta’s health deteriorated in early 1992 — as his HIV-positive status transitioned to AIDS — the Kirbys began to care for him, in much the same way that Peta had cared for their son in the final months of his life. Peta had comforted David; spoken to him; held him; tried to relieve his pain and loneliness through simple human contact — and the Kirbys resolved to do the same for Peta, to be there for him as his strength and his vitality faded.
Kay Kirby told that she “made up my mind when David was dying and Peta was helping to care for him, that when Peta’s time came — and we all knew it would come — that we would care for him. There was never any question. We were going to take care of Peta. That was that.
“For a while there,” Kay remembers, “I took care of Peta as often as I could. It was hard, because we couldn’t afford to be there all the time. But Bill would come in on weekends and we did the best we could in the short time we had.”
Kay describes Peta, as his condition worsened in late 1991 and 1992, as a “very difficult patient. He was very clear and vocal about what he wanted, and when he wanted it. But during all the time we cared for him, I can only recall once when he yelled at me. I yelled right back at him — he knew I was not going to let him get away with that sort of behavior — and we went on from there.”
Bill and Kay Kirby were, in effect, the house parents for the home where Peta spent his last months.
“My husband and I were hurt by the way David was treated in the small country hospital near our home where he spent time after coming back to Ohio,” Kay Kirby said. “Doctors and nurses wore gloves and gowns whenever they were around him, and even the person who handed out menus refused to let David hold one. She would read out the meals to him from the doorway. We told ourselves that we would help other people with AIDS avoid all that, and we tried to make sure that Peta never went through it.”
“I had worked for newspapers for about 12 years already when I went to grad school,” Therese Frare says, “and was very interested in covering AIDS by the time I got to Columbus. Of course, it was difficult to find a community of people with HIV and AIDS willing to be photographed back then, but when I was given the okay to take pictures at Pater Noster I knew I was doing something that was important — important to me, at least. I never believed that it would lead to being published in LIFE, or winning awards, or being involved in anything controversial — certainly nothing as epic as the Benetton controversy. In the end, the picture of David became the one image that was seen around the world, but there was so much more that I had tried to document with Peta, and the Kirbys and the other people at Pater Noster. And all of that sort of got lost, and forgotten.”
Lost and forgotten — or, at the very least, utterly overshadowed — until contacted Frare, and asked her where the photo of David Kirby came from.
“You know, at the time the Benetton ad was running, and the controversy over their use of my picture of David was really raging, I was falling apart,” Frare says. “I was falling to pieces. But Bill Kirby told me something I never forgot. He said, ‘Listen, Therese. Benetton didn’t use us, or exploit us. We used them. Because of them, your photo was seen all over the world, and that’s exactly what David wanted.’ And I just held on to that.”
After the Benetton controversy finally subsided, Therese Frare went on to other work, other photography, freelancing from Seattle for the New York Times, major magazines and other outlets. While the world has become more familiar with HIV and AIDS in the intervening years, Frare’s photograph went a long way toward dispelling some of the fear and willful ignorance that had accompanied any mention of the disease. Barb Cordle, the volunteer director at Pater Noster when David Kirby was there, once said that Frare’s photo of David “has done more to soften people’s hearts on the AIDS issue than any other I have ever seen. You can’t look at that picture and hate a person with AIDS. You just can’t.”
— Ben Cosgrove is the Editor of

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