Tag Archives: HIV awareness

A Word Like Cure

m louella

BY MICHAEL LOUELLA

First published by defeatHIV

 

From the very beginning, I was warned about a word like cure.

I was preparing to teach a class at Gay City University on the latest scientific developments motivating the thoughts behind and the investigations into potential cures for HIV.

I remember I was excited to have found online the first pics of the mysterious “Berlin Patient’, who stepped out of years of anonymity into a name: Timothy Brown. I remember thinking it was a minor coup to add his name and face to my PowerPoint presentation. Somehow, becoming Timothy Brown made the story of his cure more real.

My friend must have seen all my excitement about this and about the chance to talk about the current research into a cure.He cast me a sideways glance that only a queen worthy of such a title can cast and said with some foreboding:

“Like all other four-letter words, you gotta watch out for a word like cure.”

It’s taken me three years to come to appreciate, if not always follow, his advice.

My friend’s admonishment stumped me.

Was he really advising me not to use a word like cure in a presentation about the very same subject?

Should I take his comments to mean I needed to better define what we mean when we say a word like cure, or what we think when we hear it?

What could be wrong with a word like cure, which to me only sounded so right?

Well, to answer that, google “cure for HIV” and see how long it takes for you to find a page like howtocurehiv.com whose opening salvo reads:

How To Cure HIV – in 3 Days, No Matter What! FREE

(Scientifically proven, trusted and recommended even if you’ve stuggled with HIV for years and your doctors lost all hope!)

Read on to learn about your amazing Free Trial opportunity…

No, we might shake our heads at such foolishness. We might even point to the spelling error ‘stuggled’ as some sort of secondary proof that such claims are nonsense.

Doctor’s Have Proven How To Cure HIV

Click here to Cure HIV now!

The history of HIV is peppered with such claims, and when, such as the ones above, they seek to make money from people living with HIV by peddling lies that prey on hope it is only just to call such actions evil.

Sometimes I look up these sites to remind myself how powerful a word like cure can be. I scan these pages online and I witness how a good word could be used as bait.

They leave me heartbroken, these online peddlers of snake oil cures for HIV.

But these shadows in the history of HIV must be remembered if we are to effectively tell the truth about a word like cure.

It happened again. That four-letter word came up unexpectedly.

In reply to the mention of what I do for work, a guy I had been chatting with online told me that a cure for HIV is ‘just around the corner.’

I replied: “Nope. Exact opposite.”

“Oh, I keep seeing all my friends posting stuff*[1] on Facebook about how it’ll be cured soon.”

“Years and years away, but on the road with scientific basis.”

I boiled down this phrase after the umpteenth time of being online and suddenly confronting the need to do damage control.

Soon after I began talking about an HIV cure with any willing audience, I found the need for answers that would communicate the truth quickly like a text or a tweet or a soundbite.

Of course, I can never leave things to one terse reply, and so found that I just had to write three complete sentences about the media misrepresentations that seem like the adult versions of the childhood games known as Telephone and Whisper Down The Lane.

I also like to lead people to sources to see for themselves the evidence of anything I say, and so even offered to send this guy a few links.

“Eh….I’ll take your word for it.”

And with that, our 7-line long online conversation about HIV—which was exhaustive in comparison to most of my online conversations about HIV—just kind of stopped, ended not with a bang but a few whimpers.

And I sat there staring at my inbox, wondering in the end how much anyone really cares about another four-letter word like cure.

I know I shouldn’t feel this way.

I do know from firsthand experience that some people care an awful lot about a cure for HIV.

Some people get so excited to hear about the scientific basis for investigations into a possible path toward an HIV cure. That these investigations are exploring 8-10 different possibilities is just more icing on an already sweet, moist cake for these folks.

Now, before you think that such conversations are easy, or that complicating emotions don’t arise even among people who are excited about federally funded research into potential cures, let me point out that in such conversations, there is often a soft counterpoint.

Sometimes this thought is shared aloud with me, and I get to concur without needing to say much more than an amen.

More often it remains on their tongue like a silent prayer, afraid to fly up to heaven and stake a claim, knowing how fickle fate can be despite the fervor of our wanting.

It’s with these folks who hope beyond hope and in spite of foolishness that I feel a bond.

They want to see a word like cure made real.

But it is the hush around the words that follow in a soft counterpoint that always break my heart.

In my lifetime.

There are people who are happy to believe a cure for HIV is ‘just around the corner.’

Faulty journalism like the recent story out of Denmark does not make talking about a word like cure with such people any easier.

In fact, if you take people down that rabbit hole which starts with a university’s plug for the cure research going on within its hallowed halls being lifted by an online UK paper known for printing incorrect obituaries that have led even the New York Times astray and which ends in a wonderland where a cure is just around the corner, they tend to become less happy.

In fact, they often become more distrustful, more resentful.

I marvel at the craters such bad information leaves behind in the thoughts of many people.

Do they stop thinking that HIV is a global crisis? Do they stop giving money to HIV agencies or volunteering their time in clinical research?

I wonder what the conspiracy junkies who already believe a cure exists but is being kept from some of us by the federal government make of such faulty news?

Does this immediately strengthen their belief that a cure exists but is being withheld? Or does it secure this myth only after months pass and we still have no cure to point to?

I wonder how such wrong news about a word like cure might soften into pudding the mind of a young gay man who already thinks that he doesn’t need to worry about HIV, that it isn’t a big deal anymore, that people aren’t dying from it, that you can pop your pill once a day and be just fine.

Prevention is barely on the radar of such men, most of whom have a poor grasp of the nature of an epidemic that keeps all of them disproportionately at risk for becoming infected with HIV.

How many ‘just around the corner’ headlines will it take to lay to rest completely whatever prevention strategies might remain in the minds of these men?

And when I consider the fatigue gay men exhibit after 30+ years of shouldering most of the blame and most of the burden for the HIV epidemic, such wrongheaded headlines begin to sound like nails hammered into the lid of a coffin.

We need to begin talking with each other about a word like cure. We need to learn how to unpack all its punches.

As a community begins to form around a cure research group like defeatHIV, we need to remember a word like cure has many lessons, and these lessons will only be learned by talking with each other.

We need our talk to be truthful, honest and real, and we need it to be free enough to reach others wherever they might be at.

We need to deepen our understanding of the science, what has been accomplished, what yet remains for us to do, and just how long it can take science to any of it, let alone all of it.

We need to deepen our respect for our communities heavily affected and infected by HIV, and for the context of people’s lives that might change the way they hear any talk about a cure.

We need to strengthen each other in a commitment to learn as much as we can and share this with our friends and neighbors, figuring out ways to open up our capacity for awe and wonder without losing complexity.

We need to consider the power over the heart a word like cure has, and to take much care not to inflate hopes, but careful as well not to deflate them.

Want to know what was on the very first slide of my very first presentation, the one with Timothy Brown’s name and photo, the one that cause my friend the queen to issue his dire warning?

That slide had one word: CURE

I started off by acknowledging that four-letter word, giving it my voice and breath.

To this day I can think of no better way to begin to talk about a word like cure.

 

We need a cure for HIV.

And that cure for HIV needs us.

That cure for HIV needs you.

So let’s start talking……


[1]
[1]Despite my use of direct quotes, I changed this word to a version more polite, despite the poet in me seeing in his original word an unintentional commentary on the newsworthiness of his friends’ FB posts.

7 Awesome TED Talks on the Subject of AIDS/HIV

BY: JOSEPH PICKETT

TED.com is a fantastic way to learn about hundreds of fascinating topics from expert speakers around the world. One of the topics that you can learn a lot about from TED is AIDS and HIV. This public health crisis affects millions of people around the world.

Fortunately, there are many well-known people from all walks of life who are dedicating their lives to help tame this severe public health problem. Some of the most interesting and informative TED talks on the subject of AIDS/HIV includes these:

#1 Elizabeth Pisani: Sex, Drugs and HIV – Let’s Get Rational

In this unusual TED talk, Pisani uses logic, humor and wit to show the many inconsistencies in today’s political systems that prevent funds from fighting the spread of HIV/AIDS. She has done a great deal of research with populations at risk, such as junkies to sex workers in Cambodia, to show that some surprising, counter-intuitive ideas could stop the spread of HIV. Pisani worked at several government agencies and is now an independent researcher and analyst who fights to end AIDS/HIV and to stop other serious public health problems in their tracks.

#2 Annie Lennox: Why I Am an HIV/AIDS Activist

Since 2004, pop star Annie Lennox has devoted much of her free time to her SING campaign, which raises awareness and funds to fight HIV/AIDS. In this recent TED talk, she talks about the experiences that inspire her work in HIV/AIDS. According to this video, Lennox first became inspired to help in this public health crisis after she heard Nelson Mandela speak out to help stop the HIV/AIDS disaster in South Africa. It was because of that speech that she founder SING in 2007.

#3 Emily Oster Flips Our Thinking On AIDS in Africa

Emily Oster, a economist at the University of Chicago, explains the statistics on AIDS in Africa from a unique economic point of view and comes up with a rather shocking conclusion: Most of what we know about the spread of HIV in Africa is wrong. Oster has a history of rethinking conventional wisdom on many topics. Her doctoral thesis at Harvard challenged famous economist Amartya Sen on his claim that there were 100 million women statistically missing in the developing world. She also has studied the role of bad weather affecting the rise of witchcraft trials in Medieval Europe, and what causes people to play the lottery.

#4 Bono: Action for Africa

In this exciting TED talk, Bono, musician and public health activist, accepts the 2005 TED prize. He argues in this talk that aiding Africa to end AIDS, hunger and poverty. Over the years, Bono has shown himself to be very effective in getting some of the most powerful world leaders to try to rise to beat AIDS, hunger, poverty and other diseases and problems in Africa. He argues here that with technological innovation and efficient aid and investments, the West can truly help to end most public health crises on the continent.

#5 Seth Berkley: HIV and Flu – The Vaccine Strategy

Seth Berkley, a famed epidemiologist, talks about how great advances in the design of vaccines, as well as in production and distribution, can bring us closer to eliminating many public health threats, including HIV/AIDS. Berkley is leading a charge around the world to develop a vaccine to cure the AIDS virus, and also to make sure such a vaccine is available to people in Africa. Berkely founded the International AIDS Vaccine Initiative that is trying to develop vaccines that can prevent AIDS.

#6 Bjorn Lomborg: Global Priorities Bigger Than Climate Change

If we had $50 billion to spend to solve a problem, should we solve AIDS or global warming first? Danish political scientist Bjorn Lomborg is the leader of the Copenhagen Consensus, which prioritizes the biggest problems – AIDS, global warming, poverty and many other diseases. The idea is to prioritize these problems based upon how effective the proposed solutions are. His organization determined that the best investment would be to control HIV/AIDS, and stopping global warming would be the worst investment.

#7 Kristen Ashburn’s Photos of AIDS

This very moving TED talk by documentary photographer Kristen Ashburn shares many unforgettable images of the terrible human impact of HIV/AIDS in Africa. These photographs bring all viewers face to face with real people who are suffering a real public health tragedy. Her poignant photographs bring all of us closer to people who are suffering terrible hardships. In the past, she also photographed Iraqis after the US invasion, suicide bombers and the penal system in Russia.

Through the hard work of these speakers, we can see that working to reduce the terrible human suffering of HIV/AIDS is within our reach.

Article Source: MPHprogramslist.com

My Commitment … Until There’s A Cure

 

The article that started it all for Donna!

The article that started it all for Donna!

It’s been nearly 19 years since I read a local newspaper article about 2 women – neighbors of mine, really – who had joined together the year before to establish a foundation to help end AIDS. I was immediately drawn to the story about their concern for the future faced by their children in a world impacted by AIDS and their ingenuity in creating a symbolic bracelet to raise funds and awareness.

 

In those days, AIDS was life threatening, and in fact, complications from AIDS had ended my brother’s life several years earlier. I had been searching since his death for a way to honor him by committing at least part of my life to the AIDS cause. I decided to inquire about Until There’s A Cure Foundation. My ‘career’ with the Foundation began with a phone call I placed to inquire about volunteering.

 

Friends, associates and acquaintances ask why I am still involved with the Foundation and why I commit so much of my energy and time to the cause. The simple answer is that AIDS is not over, and HIV is still being transmitted – in the U.S. and around the world. Although the Foundation would love to see that a cure has been found — and to be able to close our doors — that goal has not been reached.

 

Medical research has made great progress in the treatment of AIDS and, recently, in testing the prophylactic use of medications to prevent HIV infection following exposure. Many vaccine development research projects are underway. However, expectation is that vaccines which will truly end the pandemic are still years away. So, while we have hope, until that day, critically important work in education and prevention must go on.

 

Every day at Until There’s A Cure we encounter comments such as:

I thought AIDS was over.”

Can’t you just take a pill and not be sick?”

That’s not a problem in the U.S. any more, is it?”

This doesn’t affect me. I’m not at risk. I’m not in that population!”

 

The short response to these comments is that AIDS is still a devastating disease affecting individuals, populations and economies in the U.S. and, to an even greater extent, in Africa and Asia. In the U.S., the Centers for Disease Control estimates that 1 in 5 people who are infected with HIV, don’t know it. And the virus is being transmitted at nearly the same rate as in past years, even here at home.

 

As to the comment about who is “at risk” — beyond those usually considered to be in danger — the reach of HIV infection was brought home to me recently when I heard the story of a graduate school student in a major West Coast university talk about having an intimate relationship with another professional on the East Coast for some time before she found out that he was HIV positive. Without common sense prevention methods that had kept her from being infected with HIV, that might not have been the case.

 

At Until There’s A Cure Foundation, we continue to try to disseminate information as widely as possible so that people are aware that HIV and AIDS are still with us; that even with medication, AIDS is life-changing and a physically and financially burdensome illness; that understanding and appreciation for prevention methods are critical – until there’s a cure.

 

That’s why I’m still involved. That’s why I serve as Board Chair of Until There’s A Cure Foundation. That’s why I’m writing this blog.

 

I hope you will join me and the Foundation in the fight against AIDS. To find out more, please view information on our web site at www.until.org, sign up for our email blasts, ‘like’ us on Facebook, follow us on Twitter, and pass all of this along to your friends and associates.

 

Donna Allen

Donna Allen

And remember that perhaps the greatest risk of HIV is believing it’s not a problem anymore.

Donna J Allen

 

Board Chair

Until There’s A Cure

www.until.org

20th Annual “Until There’s A Cure” San Francisco Giants Game!

Join us for the 20th Annual “Until There’s A Cure” SF Giants Game!

Tuesday, May 21 at 7:15pm vs Washington Nationals

Click Here to Purchase Your Tickets

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Save the Date for the 20th Annual SF Giants “Until There’s A Cure” Game: May 21st!

The 20th annual “Until There’s A Cure” SF Giants game

will take place on Tuesday, May 21st 2013 at 7:15pm

against the Washington Nationals

20th anniversary postcard

We hope you will join us for an amazing event and a great evening benefiting local AIDS service organizations!

 

Throwback Thursday: featured in InStyle Magazine Accessory of the Month!

Until There’s A Cure is celebrating it’s 20th year!

UNTIL was founded in 1993 with hopes that the Fight against HIV/AIDS would long since be conquered by now, but as long as the war is at hand we’re proud that we’re still able to be here to help the cause.

The Foundation was the first non-profit organization to create and sell a bracelet to raise funds for a cause. The original cuff bracelet was designed by Isabel Geddes of Florence, Italy in 1993. What distinguished our Foundation from others seeking to help those affected by HIV/AIDS is that the primary source of financing for this effort is The Bracelet — a symbolic, simple yet elegant, cuff-style bracelet uniting people to fight HIV/AIDS. The Bracelet was designed to help increase awareness, and to promote compassion, understanding, and responsibility.

The trend was an instant hit!

“Clever celebs…have found a way both to support a good cause and be fashionable. They’ve been spotted sporting Until There’s A Cure bracelets, which raise money for AIDS care, research, and education.”

To learn more or to purchase the bracelet, visit us at www.until.org

Wear your Heart on your Wrist

The Iconic Awareness Bracelet

Now in Gold

The Bracelet unites everyone in working together

… Until There’s A Cure

Available at www.UNTIL.org

$150