HIV and AIDS

[Guest consumerismsux]

After about 30 years of HIV and AIDS, where are we?

 

Do we really understand about the tests? Do we really know what AIDS is? Is AIDS the same for the whole world? Who really discovered HIV?

 

To get the ball rolling, I recently discovered that there are 4 kinds of tests;

 

1] E.L.I.S.A.

2] Western Blot.

3] Rapid test.

4] PCR.

 

I know what these tests do & I'm just wondering if anybody else knows what they do.

[Guest fountainhall]

This rather detailed document seems to indicate that there are in fact more than four tests. I have to admit I did not realise there were even four!

 

http://www.avert.org/testing.htm

 

I do know the difference between HIV and AIDS and how one becomes infected with HIV – as I hope do all gay men. Importantly, I hope we are all equally aware of the three-month window between testing and obtaining the test result.

 

As to who really discovered HIV, I have always been under the impression that it was French researchers. I recall a rather public spat between them and the American Dr. Robert Gallo who hotly claimed his laboratory had isolated the virus. In the end, didn’t they all agree to share the discovery?

 

On a 30th anniversary, it's tempting to look backwards rather than into the future. So I cannot help but take a swipe at the Reagan administration which steadfastly refused to do anything about the then new disease despite mountains of evidence piling up – and despite the advice it was getting from the Centers for Disease Control. It was only when Reagan’s old movie star pal, Rock Hudson, died of AIDS following his very public chartering of an Air France 747 to fly to Paris in mid-1985 in a sad but vain attempt to benefit from special therapies, that the US government started to act. That delay in mobilizing the government’s resources inevitably has resulted in many more deaths than might otherwise have been the case. The Surgeon General, C. Everett Koop, was widely blamed for not doing more, but in a right wing administration I believe he did considerably more than his colleagues wanted.

 

One of the early references to AIDS comes in an early 1983 letter from a New York Physician to Koop which illustrates the dilemma many people in authority faced. Dr. Sigmund Friedman wrote to him about the epidemic which had up till then claimed about 1,000 lives. He identifies that it is almost certainly spread “through bodily fluids, including semen.”

 

The reason for the letter, though, is to seek Dr. Koop’s help in preventing the passage of a Gay Rights bill by the New York City authorities.

 

New York City wants to pass a Gay Rights Bill, giving Gays priority in jobs, including teaching positions. One will not be able to refuse to rent an apartment to Gays because they are Gays. They will spread their lifestyle more and more throughout the city and spread their wealth of diseases with it. NAME&A (North American Boy Love Association) alone has 22,000 members--many in N.Y.C. Their potential for infecting our youth is mind boggling.

 

I plead, nay, beg of you, to step forward and send a statement that can be read to the City Council on February 22, 1983 . . . informing them of the serious ramifications of this bill should it pass.

http://profiles.nlm.nih.gov/ps/access/QQBCZR.pdf

 

It was against this anti-gay backdrop that the HIV AIDS scenario was played out. It is thanks to people like Dr. David Ho, the inventor of the class of medications called protease inhibitors, the deaths of ‘celebrities’ like Rock Hudson, Anthony Perkins, Brad Davis, Arthur Ashe, Alvin Ailey, Freddie Mercury, Rudolf Nureyev and so many others, and the efforts of those who publicly changed the face of what had become known as the gay plague, people like Magic Johnson, Elizabeth Taylor, Elton John and ordinary folk working in local communities, that this became everyman and everywoman’s disease. Let's hope that the scientists will have found a cure and a vaccine before we have to mark the 40th anniversary.

[Rogie]

Do we really understand about the tests? Do we really know what AIDS is? Is AIDS the same for the whole world?

The link kindly supplied by Fountainhall explains the tests.

 

Whereas your HIV status is straightforward - you are either negative or positive - AIDS is another matter.

 

It is the case nowadays, that for a HIV+ve person who is on the best regime of drugs, AIDS can be prevented, thus allowing such a person a considerable degree of comfort that they won't progress to what is sometimes referred to as full-blown AIDS.

 

People who are not on therapy have no such comfort. I have no idea what their chances of longterm survival would be, but it is pitifully low. Some people do seem to have an unexplained immunity. I believe the gay writer Edmund White, who wrote A Boy's Own Story, is HIV+ve, and has survived, in contrast to many of his contemporaries. (I assume he is on the latest drugs now, but he must have lived a considerable time without any anti-AIDS drugs whatsoever). As far as I am aware there is still no explanation for why White has survived whilst others did not.

 

So what is AIDS? It is one of several diseases that stem from the body's inability to fight infection, their immune system having been taken over by the HIV for its own devious ends. You'd have to consult a textbook or website if you want a full list of all the diseases that can be said to come under the AIDS umbrella. I wouldn't even know how to start.

 

Is AIDS the same for the whole world? Theoretically yes, but in practice I would say no - it depends where the untreated HIV+ve person is living. A person living in the USA is going to present with a different range of illnesses to one living in South Africa, say. I recall in many African countries those unfortunates suffering from an AIDS-related illness often just wasted away. Locals called it 'Slim'. I suspect that is what kills the majority of untreated HIV+ve people in areas with 1) a low standard of living (malnutrition), and 2) poor or non-existent medical facilities.

 

Back to the 'West'. All countries now have a good system of HIV testing in place, and that's fine, but the system as a whole is only as good as the number of people who come forward for testing. A small number of those in any high-risk category will always decline to be tested, but even so hopefully few people in western countries now present with full-blown AIDS without any prior medical intervention. That was not the case prior to HIV being eminently treatable by drugs. There was nothing that could be done to prevent it. Many of the patients presenting at hospital were suffering from unusual cancers, or conditions not normally seen in such relatively young patients. One such was Karposi's Sarcoma, previously a rare condition.

 

It is my understanding, therefore, that the difference in prognosis between 'Africa' and any given western country (in the era before effective drug therapies) would have been down to the standard of living. An African person living in a country with a low standard of living would die much more quickly, probably before the onset of a life threatening cancer could take hold.

 

I apologise for any mistakes! Above written from memory and I admit to making a few assumptions, albeit rational ones I hope.

[Guest fountainhall]

I am not sure when White was infected, but it was probably before Magic Johnson who informed the world of his HIV status 20 years ago. Both men are typical of millions now alive thanks to the protease inhibitors pioneered by Dr. David Ho and other drugs therapies.

 

However, I have written before on a recent worrying new development for those who have been on long term drug therapies – a prevalence of other illnesses more associated with aging. Researchers have for some time been concerned that many of those on long term HIV antiviral therapies are now being struck down by illnesses and conditions which normally affect much older people. This was widely quoted a couple of years or so ago. For the purpose of this thread, I will report one rather long quotation from New York Magazine of 1 November 2009. I hope everyone reads the full article. It will, I trust, come as a reality check for those who believe HIV medications now clear the way for "a full and healthy life." Unfortunately, that life may no longer be quite so full, nor quite so healthy.

 

in the last year or so, doctors have been troubled by the emergence of a new kind of AIDS story. Take the case of James L., 46. After testing positive in 2001, he went on a drug cocktail and life returned to normal with little effort. His exercise regime only intensified. He even went back to school for a master’s degree. At work, he rose to a six-figure position at a telecommunications firm, and his personal life flourished. He was, he told me, “a regular gay male.”

 

Then, halfway through a screening of the film Syriana in his local cinema, he had a disturbing revelation. “He sat through about half the movie before he realized suddenly that he had seen the same movie two weeks earlier,” says Simpson. Indeed, James ultimately pieced together evidence suggesting he’d seen the film on three separate occasions. The same problem haunted him at work. Where he had once earned praise for his organizational skills, he now drew warnings. He seemed incapable of recalling recent events with any reliability. “It’s an Alzheimer’s-like state,” he explains. Earlier this year, Simpson diagnosed him with HIV-associated cognitive motor disorder.

 

James is on medical disability today, acutely aware of what he is missing. “I want more out of life,” he told me one afternoon recently. “I spent a lot of money on my education, and this barrier might keep me from enjoying my fifties and sixties. But I’m much more concerned about my financials than my own health at the moment. People like me in the business world? I don’t believe they go together well.”

 

Some fifteen years into the era of protease inhibitors and drug cocktails, doctors are realizing that the miracles the drugs promised are not necessarily a lasting solution to the disease. Most news accounts today call HIV a chronic, manageable disease. But patients who contracted the virus just a few years back are showing signs of what’s being called premature or accelerated aging. Early senility turns out to be an increasingly common problem, though not nearly as extreme as James’s in every case. One large-scale multi-city study released its latest findings this summer that over half of the HIV-positive population is suffering some form of cognitive impairment. Doctors are also reporting a constellation of ailments in middle-aged patients that are more typically seen at geriatric practices, in patients 80 and older. They range from bone loss to organ failure to arthritis. Making matters worse, HIV patients are registering higher rates of insulin resistance and cholesterol imbalances, and they suffer elevated rates of melanoma and kidney cancers and seven times the rate of other non-HIV-related cancers.

 

Whether this is a result of the drugs or the disease itself, or some combination, is still an open question and certainly varies from patient to patient and condition to condition. Either way, it is now clear that even patients who respond well to medications by today’s standards are not out of the woods. Current life-expectancy charts show that people on HIV medications could live twenty fewer years on average than the general population. “It’s spooky,” says Mark Harrington, who heads Treatment Action Group, a New York–based HIV think tank. “It seems like the virus keeps finding new tricks to throw at us, and we’re just all left behind going, What’s going on?”

 

. . . A study presented at a conference in February in Montreal showed that otherwise healthy people on HIV medications at about 56 years of age had immune systems comparable to HIV-negative subjects whose median age is 88. Perhaps as a result, many diseases that typically attack the very old are striking younger HIV-positive people disproportionately, like diseases of the liver, kidney, heart, and veins. One study found that 55-year-olds who are HIV-positive have all the telltale signs of late-life frailty—muscle loss, fatigue, and rheumatological disorders.

 

The newest data show that middle-aged patients have dramatically increased rates of bone loss and fractures for their age. Some 60 percent of HIV-positive men in their forties have osteoporosis or its predecessor condition, a problem that typically isn’t diagnosed in men until well into their eighties. Jules Levin, founder and executive director of the New York–based National AIDS Treatment Advocacy Project, only found out about this two years ago, when he stumbled and shattered his wrist. He was 57 at the time and in exceptionally good shape, other than his undiagnosed osteoporosis. “This is what opened my eyes to all of this stuff,” he says. “Aging is the No. 1 problem in HIV today.”

 

. . . the frontline doctors I spoke to are crying out for help. “This needs urgent, comprehensive attention,” says Paul Bellman, a prominent HIV doctor in the Village who has noticed a significant increase in such patients in the past six months. One called recently to say he risked losing his demanding job because of a sudden inability to recall simple tasks. “I wish I could say, ‘I’m so glad you called me, because this is what’s causing it.’ But I don’t have the answers. Nobody does.”

http://nymag.com/health/features/61740/

 

(Note: I first wrote this for gaythailand, but am unable now to find the thread. I repeated it some months later in gaybuttonthai.com and it is from that post that the above is largely taken.)

[Guest fountainhall]

Talking with friends, I have been genuinely surprised that many are unaware of this being the 30th anniversary of AIDS. And the history of how this came to be one of the most feared diseases in history affecting tens of millions around the world is equally vague. We now take HIV as part of daily life, a largely controllable chronic illness for which we believe a cure will eventually be discovered. Yet the sense of terror, mystery, anguish, fear and intense frustration that accompanied the rise of HIV is no longer real to new generations and increasingly to those of is who lived through it.

 

I wonder what book on the history of HIV AIDS you would recommend to keep alive that period. To me, one of the best is Randy Shilts’ And the Band Played On. Some will know of it through the mini-series which attracted a lot of well known actors. But that series could only partly convey the many raw emotions which shine through that book. It’s a flawed journey through a time of intense anger and despair. Yet, it chronicles the course of the disease and how it came to be identified better than any other I have read. Not unnaturally, the Reagan administration and the political right wing do not emerge with much credit.

 

I’ll give three examples.

 

In 1982, seven people in the Chicago area died from what was eventually discovered to have been one box of Tylenol capsules laced with cyanide. The story broke on October 1. For that entire month, the New York Times printed an article every single day. In the following two months, 23 more articles were to be found in the paper. Four of these stories appeared on the front page. Coverage in major media across the country was of a similar density.

 

Investigators poured into Chicago to crack the mystery. More than 100 state, federal and local agents worked the Illinois end of the case alone, filling twenty six volumes with 11,500 pages of probe reports. The Food & Drug Administration had more than 1,100 employees testing 1.5 million similar capsules for evidence of poisoning . . . Tylenol’s parent company, Johnson & Johnson, estimated spending US$100 million in the effort. Within five weeks, the US Department of Health & Human Services issued new regulations on tamper-resistant packaging to avoid repetition of such a tragedy.

 

In the end, the millions of dollars for CDC Tylenol investigations yielded little beyond the probability that some lone crackpot had tampered with a few boxes of pain reliever. No more cases of poisoning occurred . . . Yet, the crisis showed how the government could spring into action, issue warnings, change regulations, and spend money, lots of money, when they thought the lives of Americans were at stake.

 

Altogether seven people died from the cyanide-laced capsules . . . By comparison, 634 Americans had been striken with AIDS by October 5, 1982. Of these, 260 were dead. There was no rush to spend money, mobilize public health officials, or issue regulations that might save lives.

from page 191

 

On February 21, 1985, Congressman Henry Waxman opened a congressional hearing with these words -

 

“The Reagan administration has pretended that AIDS is only a blip on the charts, a statistic that they hope will go away . . . Under the best epidemic projections, by the beginning of next presidential campaign, AIDS will have killed as many people as the war in Vietnam. We cannot stand by and let these Americans die.”

from p 535

 

Then on page 586 –

 

In late 1985, the CDC actually stopped money from being spent on AIDS education when conservatives in the White House worried that the government should not be in the business of telling homosexuals how to have sodomy.

Postscript 1

Henry Waxman was correct in his prediction about the number of deaths from AIDS being the same as in Vietnam (53,000) by the start of that 1988 election season. Ten years after his speech, the number of cases had risen to over 500,000. 62% were dead.

 

Postscript 2

In the last months of his life, Rock Hudson launched the American Foundation for AIDS Research with a donation of US$250,000. His close friend Elizabeth Taylor had agreed to become the national Chairperson.

 

At a gala fund raising dinner in aid of AmFAR held in mid-1987, President Reagan was the guest of honour, He started his speech with a piece of his customary folksy humour. For the next 20 minutes –

 

the President laid out his views of AIDS . . . Reagan’s programme, of course, would do vey little to actually stop the spread of AIDS . . .But then saving lives had never been a priority of the Reagan administration. Reagan’s speech was not meant to serve public health; it was a political solution to a political problem. The words created a stance that was politically comfortable for the president and his adherents; it was also a stance that killed people. Already, some said that Ronald Reagan would be remembered in history books for one thing beyond all else: He was the man who let AIDS rage through America, the leader of the government that when challenged to action had placed politics above the health of the American people.”

from p 595

 

Postscript 3

Randy Shilts died of AIDS in 1994.

 

Quotes from

And the Band Played On

Randy Shilts

Paperback edition published 1988 by Penguin Books

[Rogie]

It is the case nowadays, that for a HIV+ve person who is on the best regime of drugs, AIDS can be prevented, thus allowing such a person a considerable degree of comfort that they won't progress to what is sometimes referred to as full-blown AIDS.

 

However, I have written before on a recent worrying new development for those who have been on long term drug therapies – a prevalence of other illnesses more associated with aging. Researchers have for some time been concerned that many of those on long term HIV antiviral therapies are now being struck down by illnesses and conditions which normally affect much older people.

 

Thank you for the link to that thought-provoking article Fountainhall. Although my earlier comments (repeated above in quote box) still hold true in that a person on the latest drug regime will not progress to full-blown AIDS, my use of wording 'considerable degree of comfort' is clearly unrealistic. Anybody currently on drug therapy is going to be, I hazard to guess, most anxious, (sometimes referred to as the 'worried well'), or at best extremely wary.

 

I wonder what book on the history of HIV AIDS you would recommend to keep alive that period.

I have And the Band Played On on my bookshelf but have never read it. Shame on me. But to be fair I also have Ulysses and Remembrance of Things Past and other voluminous tomes - all unread - more than I'll ever get round to reading!

 

A Matter of Life and Sex by Oscar Moore came out in 1991. I didn't read it until 1998, by which time the author had been dead 2 years at he age of 36. It is written as a seemingly fictional biography of one Hugo Harvey, but it is clearly very much an autobiography. He lived with HIV for the last 13 years of his life, and from 1993 to 1996 wrote a regular column for The Guardian entitled "PWA (Person With AIDS)."

[Guest consumerismsux]

Reply to fountainhall below.

 

As to who really discovered HIV, I have always been under the impression that it was French researchers.

I recall a rather public spat between them and the American Dr. Robert Gallo who hotly claimed his laboratory had isolated the virus. In the end, didn

[Guest fountainhall]

I have And the Band Played On on my bookshelf but have never read it. Shame on me. But to be fair I also have Ulysses and Remembrance of Things Past and other voluminous tomes - all unread - more than I'll ever get round to reading!

I also have a considerable number of books which I will likewise probably never get round to reading! But Randy Shilts book is written very like a detective novel and well worth the time. It's also a book you can dip into from time to time rather than having to read it in one go.

 

In 1992, Gallo was officially convicted of theft by a federal scientific ethics committee.

Thanks comsumerismsux. I had completely forgotten about this, as I had the fact that the Nobel Committee awarded the Prize for Medicine in 2008 to the French researchers, Luc Montagnier and Fran

[Guest consumerismsux]

Whereas your HIV status is straightforward - you are either negative or positive - AIDS is another matter.

 

The attached document indicates that Western Blot HIV testing is not as straightforward as many people think.

 

The accuracy of these tests (including Rapid tests) is unreliable.

wbchart.pdf

[Rogie]

The attached document indicates that Western Blot HIV testing is not as straightforward as many people think.

I agree, on this evidence, it's not straightforward!

 

There's a very important comment right at the foot of that document:

 

Manufacturer Bio-Rad advises “Each laboratory performing Western blot testing

should develop its own criteria for band interpretation. Alternatively, band interpretation may be left to the clinician"

 

It's all down to the interpretation. What happens in a pathology lab is the 'lab tech'

does all the hard work and leaves it to others to interpret the results he produces. The 'others' could be an experienced senior laboratory scientist or a clinician. Some labs take it upon themselves to interpret a result and some leave it to the clinician (a medically qualified person).

 

If I was running a lab doing this sort of test I would ensure the diagnostic criteria were calibrated against a number of known positives. Known positives from amongst your resident population. Experience will determine whether the pattern seen in any one WB strip is consistent with that seen in known proven positive cases. If the person interpreting cannot do so with confidence he should request a repeat, perhaps also discretely satisfying himself the lab's quality control(**)is impeccable.

 

What happens if a person being tested for HIV was infected less than 3 months ago? I've no idea what his WB would look like. Presumably he would give a clearly (ultimately false) negative result or it would be equivocal in which case he'd be told to submit a repeat sample at some future date.

 

I must add I have no experience of WB or indeed any HIV diagnostic tools, hence my responding in a very general way. There is without doubt many complexities in this procedure (WB) I am unfamiliar with.

 

 

** (Quality control has two forms: internal and external: in the latter case, samples are distributed from a central authorised source to participating labs and the result(s) returned to it. Only the distributing source knows the correct result, in this case +ve or -ve. Any lab regularly producing 'wrong' results will be investigated).