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Filed under: AIDS

Roundup of coverage on 30th anniversary of HIV discovery

By Adam Bink

Credit: Karen Ocamb at LGBTPOV.com
ALC ribbon 30th anniversary

30 years ago, today, the CDC published a report noting the mysterious cases of pneumocystis pneumonia in 5 Los Angeles gay men, and the degree to which their immune systems were depressed. It is commonly considered to be the discovery of the virus that would come to be known as HIV but then known as GRID (gay-related immune deficiency) or more colloquially, gay cancer, which was later known to cause AIDS. Some notes on the 30th anniversary:

  • I had the privilege of seeing Larry Kramer’s The Normal Heart last week in New York City. It is a revival on a shortened run, and one of those plays that shakes you to the core when you watch it, and stays with you for days after you see it. Few works of art have done that for me — RENT is one, Schindler’s List another. The play’s main character, brilliantly played by Angels in America’s Joe Mantello, rages against the culture and institutions that have stayed silent or apathetic while the virus raged out of control — Mayor Koch, the NYC health department, NIH, the Reagan Administration, the tendency of gay men to be promiscuous without caring for their own lives or the lives of those with whom they interact, the early leadership of Gay Men’s Health Crisis. As Ben Brantley noted in his NYTimes review, it is an incredible drama of “j’accuse!” that is worth every award it is getting or may receive.

I write about it to say that if you have the chance to see it before it closes on July 10th, do, especially if you are younger and did not have the experience of living through what it was like to have 30 friends simply die in the mere span of months from a disease no one in government, medical institutions, or mainstream culture seemed to care about. Not to mention, a portion of the proceeds goes to fund amfAR, Friends in Deed, and HRC.

  • Another remarkable work worth reading if you are interested in learning more about the period, or if you’re simply into historical epics, is Randy Shilts’ And The Band Played On. A remarkable piece of history woven through story-telling — one of the ten best books I have ever read. I have not had the opportunity to see the film version of it staring Alan Alda, Ian McKellen and Lily Tomlin among others, but I hear it is also good.
  • The MMWR report from the CDC can be found on their archives here. A new report released on June 3, 2011, concerns the testing among MSM, and can be found here.
  • For some reason, the Obama administration has not spotlighted the ongoing work of the National Institutes of Health, funded by taxpayer dollars, to find a cure through a vaccine. It went unmentioned during the last two World AIDS Days, the release of the National Strategy, and last week’s proclamation by the Administration. Despite this, the Chicago Sun-Times spotlights the efforts.

I had the opportunity to participate in an HIV vaccine trial several years ago and it was an extremely rewarding experience to help do what one can. There is more to this disease than prevention through safe sex or pre-exposure prophylaxis, and treatment for those already infected. Prevention through the encouraging efforts to find a vaccine is important, and no major epidemic has ever been eradicated without one. You can find out more through the trials website. NIH and affiliated partners are always looking for trial participants, otherwise the research cannot continue on the heels of the recent breakthrough during the Thai trial recently, and you can participate from locations in 20 states. If anyone is interested in finding out more about what it’s like being a trial participant, please feel free to drop me a line at adam at couragecampaign dot org.

  • P8TT friend Karen Ocamb recalls the unfolding of the AIDS quilt in Washington, DC in 2000, as well as the efforts of the AIDS/LifeCycle, where riders will embark today from San Francisco to ride 545 miles over 7 days across California to raise money and awareness about a disease still raging after 30 years, having killed 30 million people and infected an estimated 32 million who are still living with it. Karen also has a mountain of other coverage on the 30th anniversary at LGBTPOV.com. I just donated $30 in honor of the anniversary and Karen’s intrepid coverage as a reporter embedded with the tour.
  • With a tip of the hat to Towleroad, a map of where infections are most prevalent in the United States.
  • A video by the SF AIDS Foundation consisting of images and interviews with Mayors Agnos, Feinstein, Brown, Newsom, and others:

  • ABC News has more coverage here.

What are you reading, and for those of you who lived through the early years of this epidemic, what memories and stories do you have to share with our community?

10 Comments June 5, 2011

30 years of AIDS, and observing where we are

By Adam Bink

The Normal Heart is a play by Larry Kramer, the GMHC co-founder/ACT UP founder/longtime AIDS activist. I’m hoping to catch a production of it while in NYC soon, as it is on a limited run revival, and has already won 3 Drama Desk awards and is up for 5 Tonys. It’s a semi-autobiographical play in which Kramer takes on the institutions and individuals whom he feels are responsible for letting what was then known as “gay cancer” rage throughout the city of New York. To sum it up more aptly, here’s an excerpt of the review from Ben Brantley in the NYTimes:

When it first opened at the Public Theater, “The Normal Heart” sounded like a hoarse, relentless “J’accuse!” screamed directly at a gallery of blame-worthy individuals and institutions that included Mayor Edward I. Koch, The New York Times, the American medical establishment and the majority of gay men in New York City. Surprisingly, many theatergoers — even those at whom the play’s hectoring finger was pointed — felt that Mr. Kramer was beautiful when he was angry. A focal point for people searching for vicarious venting in those early plague years, “The Normal Heart” became the longest-running hit in the history of the Public Theater.

Many of the adjectives that were attached to “The Normal Heart” at that time still apply: fierce, angry, engaged, confrontational. But in the new incarnation of “The Normal Heart,” which opened Wednesday night at the Golden Theater, anger is only one note in a polyphonic chord.

Political outrage may be what shaped this drama, inspired (very directly) by Mr. Kramer’s early days as an AIDS activist. But what emerges so stirringly from this production — which follows the shaky emergence of a political movement among gay New Yorkers to deal with AIDS — is its empathy with people lost in a war in which they have no rules, no map, no weapons.

Kramer’s production was intended to shake people and institutions to grasp what was happening: tens of thousands were dying and no one was doing anything. Which gets me to today.

June 5th is the 30th anniversary of the discovery of what would come to be known as HIV. I’ve spent the last year doing a lot of reading up on the failure of institutions and individuals to aggressively stop the spread of the disease, including refusal of sexually active gay men to take the appropriate precautions, and refusal of the city’s health department, along with other government agencies in NYC and San Francisco, to take the appropriate public education steps.

And yet, 30 years later, we face controversies such as this (via Towleroad):

Australian Ad Company ADSHEL Reinstates HIV Prevention Ads After International Social Media Uproar

Australian ad company ADSHEL reinstated a tame HIV-prevention ad which featured two men embracing with a condom, and said it would replace them on bus shelters in Brisbane where they had been taken down.

ABC Australia reports:

In a statement issued this afternoon, Adshel said many of the complaints were part of an ACL campaign, and that it has reinstated the ads.

“It has now become clear Adshel has been the target of a coordinated ACL campaign,” Adshel chief executive Steve McCarthy said. “This has led us to review our decision to remove the campaign, and we will therefore reinstate the campaign with immediate effect.”

Earlier today the ACL said the issue with the ads was about condoms, not homosexuality. “I’ve been labelled homophobic. This has absolutely nothing to do with gay couples,” spokeswoman Wendy Francis said.”This has nothing to do with anything other than another condom ad in a bus shelter, where the children are catching buses to school and billboards where their parents are stopping at lights. I will continue to fight sexual imagery in our outdoor advertising until we can get it removed.”

An image of the fairly tame billboard is at right. A Facebook campaign started by one of the men in the ad quickly gained, as of this post, 71,000 followers pushing for public health education, outraged that saving lives is considered “sexual imagery.”

30 years later, and one realizes how very relevant Kramer’s play still is.

10 Comments June 1, 2011

A possible advance in prolonging the lives of those living with HIV

By Adam Bink

Following yesterday’s news regarding a revision of the ban on blood donations from MSM in the UK, another possible advance regarding medicine and MSM here in the US.

Currently, those who are HIV+ cannot gjve or receive organ transplants. New guidelines are being considered that would allow HIV+ to HIV+ transplants, which would result in another 500-600 transplants per year and prolong lives, according to one study:

David Aldridge of Los Angeles had a kidney transplant in 2006, but he will soon need another. Like many people living with H.I.V., he suffers from kidney damage, either from the virus or from the life-saving medications that keep it at bay.

Until recently, such patients did not receive transplants at all because doctors worried that their health was too compromised. Now they can get transplants, but organ-donor waiting lists are long. And for Mr. Aldridge, 45, and other H.I.V. patients, a potential source of kidneys and livers is off limits, because it is illegal to transplant organs from donors who test positive for the virus — even to others who test positive.

But federal health officials and other experts are calling for repeal of the provision that bans such transplants, a 23-year-old amendment to the National Organ Transplant Act.

“The clock is ticking more quickly for those who are H.I.V.-positive,” said Dr. Dorry Segev, transplant surgery director of clinical research at Johns Hopkins and a co-author of a new study indicating that 500 to 600 H.I.V.-infected livers and kidneys would become available each year if the law were changed. “We have a huge organ shortage. Every H.I.V.-infected one we use is a new organ that takes one more person off the list.”

The ban on transplanting organs from people with the virus that causes AIDS was passed at the height of the AIDS scare in 1988, when infection with the virus was considered a death sentence. But now many people with H.I.V. are living long enough to suffer kidney and liver problems, adding to the demand for organs.

This has led some health authorities to say that H.I.V.-infected organs should be available for transplant, primarily for patients infected with the virus but also potentially for some who are not.

The federal Centers for Disease Control and Prevention and other health agencies are about to issue new guidelines that will encourage a first step: research involving transplanting H.I.V.-positive organs into H.I.V.-positive people. That would require the transplant ban to be lifted.

“We would like to see as many safe transplants occurring as possible, and there’s no reason why H.I.V.-positive recipients shouldn’t get transplants and that H.I.V.-positive donors can’t be used,” said Dr. Matthew Kuehnert, who directs the C.D.C.’s Office of Blood, Organ and Other Tissue Safety.

“I could see someone saying: ‘That’s horrible. Why would you want to transplant H.I.V.?’ ”he said. “They don’t understand. Anyone who understands transplant today, in the current era, understands the need.”

The H.I.V. Medicine Association, a professional group, just issued a similar statement, calling for “changing federal law on H.I.V.-infected organ donation.” Its chairwoman, Dr. Kathleen Squires, said her organization and other medical groups would lobby Congress this year.

Until recent years, H.I.V.-positive patients were not given transplants because of concerns that the virus could destabilize transplanted organs or that the immunosuppressive drugs used in transplants might make the virus more dangerous.

But a large clinical trial found that results in H.I.V.-positive recipients are “just as good as H.I.V.-negative patients, more or less,” said the study’s leader, Dr. Peter Stock, a transplant surgeon at University of California, San Francisco. “Our kidney patients do slightly worse than the general population of transplant patients, but better than kidney transplant patients over 65.”

Last year, at least 179 H.I.V-positive people received kidneys or livers, up from 9 in 2000.

Allowing H.I.V.-positive organs to be used would create an additional supply when some 110,000 Americans are awaiting transplants. They often wait years, and sometimes are too sick when organs become available to benefit from them.

[…]

In 2004, Illinois passed a law allowing transplant of H.I.V-positive organs, and “our hope was maybe other states will pick this up,” said Dr. Michael Abecassis of Northwestern Memorial Hospital in Chicago. But federal transplant law supersedes the state one.

If such transplants are allowed, they will most likely start with clinical trials, and most organs will come from deceased donors; living donors are at risk for liver and kidney problems themselves. Most recipients would probably be H.I.V-positive because “we don’t really know what would happen to someone with non-H.I.V. status,” Dr. Abecassis said.

But some experts, including Dr. Segev and Dr. Kuehnert, say they can foresee such transplants even for H.I.V.-negative patients because contracting H.I.V. would be preferable to kidney or liver failure.

“I don’t want to minimize living with H.I.V, but it is a medically treatable disease now,” said Charlie Alexander, president of the United Network for Organ Sharing, which manages the country’s organ transplant system. “In certain cases, I think it would be medically appropriate.”

Mr. Aldridge, the Los Angeles patient, who has been H.I.V.-positive for 25 years, says he would certainly consider an infected kidney.

“There’s a stigma about transplanting us to begin with, with some people saying why should an organ be quote unquote wasted on us,” he said. “So if we can help each other it would make things much better for us. If I need a kidney transplant to survive, then so be it.”

Interestingly, transplants from those with Hepatitis C to those with Hepatitis C are currently allowed. I can see the use instead of “wasting these kidneys, literally throwing them in the ban”, as one doctor who performed transplants in South Africa described. While there are also concerns about those receiving transplants being infected with a tougher strain of HIV from the donor, I suspect for many, they’re willing to take the risk.

9 Comments April 11, 2011

A shift in the UK on blood donations from sexually active gay men

By Adam Bink

Via Towleroad, the United Kingdom is set to lift the ban on blood donations from men who have sex with men, with an important caveat:

However, gay men will only be permitted to donate if they have not had sexual intercourse for a decade. Homosexuals who are or have recently been sexually active will continue to be barred from giving blood.

Anne Milton, the public health minister, is expected to announce the changes within weeks and she is understood to be backed by Andrew Lansley, the Health Secretary, and Lynne Featherstone, the Equalities Minister.

***

The changes were instigated by Sabto, the advisory committee on the safety of blood, tissues and organs, which had concluded that if the ban were replaced by a new rule preventing gay men from giving blood for five years after having sex with another man, the risk of HIV reaching the blood supply would go up by less than 5%.

It is estimated that this figure would halve if the “deferral” period were increased to 10 years, so ministers backed this option. The 10-year delay also ensures that people who are not aware they have contracted HIV do not pass it on accidentally.

Last year, I worked with Gay Men’s Health Crisis and colleagues in the blogosphere on revising the unfair and discriminatory ban here in the United States. Ultimately, because HIV refuses to show itself in newly infected individual for a window period, any potential donor — heterosexual or homosexual — risks the blood supply. It comes down to a question of how much risk. What is the most important thing is that the rules apply fairly to everyone. For example, here in the US, if a heterosexual man has sex with an HIV-positive woman, he is banned from giving blood for a year afterwards (which by itself makes little sense because of window period). But if I have sex with my boyfriend, even once, I’m banned for life. The other thing is to change to a risk-based deferral based on behavior, not arbitrary time periods like 10 years or one year. If you engage in frequent unprotected sex with multiple partners, your risk is much different than that of an HIV-negative, longtime monogamous couple, which makes this 10-year period so arbitrary. Ultimately, perhaps a small step forward.

Currently, HHS is studying a potential change in the policy as a result of last summer’s committee vote that found the current policy is ”suboptimal in permitting some high risk donations [from populations other than MSM] while preventing some low risk donations [from the MSM population].” The ultimate decision is up to the FDA. A change in the policy is also supported by the Red Cross, America’s Blood Centers and AABB. For more, some work on this I did with colleagues can be found here.

25 Comments April 10, 2011

How I knew Elizabeth Taylor

By Adam Bink

I’m a little too young to really know Elizabeth Taylor and what she represented in the entertainment and celebrity world. I knew about her husbands and her acting career, but it didn’t interest me. All I really know about her is what I first read in Randy Shilts’ magnum opus chronicling the beginnings of the AIDS epidemic, titled And the Band Played On (excerpt hand-typed here):

Just a few days from now would mark the sixth anniversary of the publication of Michael Gottlieb’s article on the mysterious cases of Pneumocystis carinii pneumonia in five Los Angeles gay men. Six years ago, Gottlieb had been an eager young immunologist in his first months at UCLA. Now, he was a co-chair of a foundation hosting a dinner at which the President and First Lady were the guests of honor. On Gottlieb’s arm was a famous movie star, and senators and congressmen crowded the restaurant, enjoying cocktails and hors d’oeuvres. AIDS was so respectable, Gottlieb could scarcely believe it.

Gottlieb knew that much of the success of both the evening and the foundation was the work of his escort, actress Elizabeth Taylor. Taylor’s interest in AIDS had been building before it became a fashionable Hollywood cause, back when Gottlieb was discussing his plans for a national fund-raising AIDS group with Dr. Mathilde Krim of the AIDS Medical Foundation in New York City. In the last months of his life, Gottlieb’s most famous patient, Rock Hudson, had launched the American Foundation for AIDS Research, or AmFAR, with a $250,000 contribution, and Taylor had agreed to become the group’s national chair, giving the epidemic the star power it had long lacked.

Frankly, it was all I needed to know. Taylor did this back when AIDS was still known as “gay cancer” and no one would touch it. Her fundraising work continued long after that Georgetown event. The Whitman-Walker Clinic here in DC, which provides AIDS counseling and free HIV testing — which I, as a young gay man, had taken advantage of personally — probably would not exist without Elizabeth Taylor’s pioneering. In fact, the Center around the corner from my apartment is named “The Elizabeth Taylor Center”.

I never knew the other side of Elizabeth Taylor’s life, but from what I did know about her, if we had a hundred Elizabeth Taylors and their courage back in the early 1980s, a lot more people would still be alive today.

More coverage from P8TT friend and longtime reporter on the epidemic, Karen Ocamb, can found here.

Update: Jeremy found a great news clip from that era.

51 Comments March 23, 2011

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