The HIV Cure Chatter Is Real, but It's Only Part of Our Story
By Myles Helfand
July 10, 2013
I don't know about you, but I'm starting to have trouble telling apart one HIV cure story from another.
Just one short year ago, it was all so simple: Whenever anyone talked about a person being cured of HIV, we knew exactly who was being referred to. How could we not? There was literally only one guy they could be talking about.
Then, last summer, one became three. This year, three became four, four quickly became 18 and just last week, 18 became 19. Plus, we know of a 20th that may be in the works. And that's likely just the beginning.
We have entered a cure renaissance in the HIV community. "Cure" has stopped being a word we only utter sarcastically under our breath, a word we only see written in misreported mainstream media stories.
The entire community is buzzing with "cure" talk now. It's not just mainstream media. It's not just idle chatter we might have with friends over dinner. We're not talking about "cure" in an abstract sense anymore. Even the HIV research community -- a group of medical professionals and academics who pride themselves on an extremely cautious, conservative approach to gathering and reporting scientific developments -- has joined the trend.
I've been attending HIV research conferences since 2003. Through most of the past decade, the bulk of the conversation at these meetings -- at least, the stuff that most of our community tended to get excited about -- revolved around the latest HIV drugs in development and the side effects they caused. In more recent years, a greater focus has been placed on issues related to aging and long-neglected groups (women, African Americans), among other subjects. But an HIV cure has long been a topic non grata at these conferences.
Three years ago, Anthony Fauci, M.D. -- the man who runs the arm of the U.S. government that conducts HIV/AIDS research -- took the stage at a major HIV research conference to urge his colleagues to put more focus on ending the pandemic. Even that step was an unusual one -- and Fauci took it carefully, only discussing strategies that felt more realistic within the research community: more testing, better prevention, getting more people on treatment, developing a vaccine.
The research environment has evolved quickly since that meeting.
Last week, thousands gathered in Malaysia for this year's International AIDS Society conference, one of the world's largest periodic gatherings of HIV researchers and care providers. In his keynote speech during the opening session, Steven Deeks, M.D., a renowned HIV scientist and expert in the field, confidently explained the reasons why he felt we should be at least cautiously optimistic about a cure.
In his speech at this major scientific meeting, Deeks talked about a cure for HIV -- as in, the actual eradication of the virus from a person's body -- not as some abstract, pie-in-the-sky idea, but as something real and quantifiable that we can achieve. The road ahead is still strewn with boulders and pitfalls, and we have no clue how long that road stretches. But even our brightest research minds are buzzing about it, and they're not afraid to do so on medical science's grandest stages.
So, it's not just your imagination -- and it's not just media sensationalism -- that has led to what feels like a crazy amount of talk lately about curing HIV. Given our history with this virus, it's understandable to be leery of this sudden flood of cure chatter. I know my own instinct is to immediately try to tamp down expectations, and I clarify at every opportunity that all of our "cure" cases to date are functional cures -- that is, people in whom HIV appears to be no longer replicating or doing anything bad inside their bodies according to our current measurements, but who we can't yet be certain have absolutely zero virus anywhere inside them.
It's also reasonable, I think, if you find yourself growing weary of all this cure chatter (not to mention our coverage of it). Until reports of a cure start being about more than these rare cases involving risky or little-understood procedures in a small handful of people, talk about a cure will have little to no impact on the daily lives of anybody living with HIV. If anything, it distracts us from the issues with more direct importance: mental and emotional health, drugs in development, side effects, life expectancy, adherence issues, nutrition, relationships, paying for health care and any number of other critical topics.
For my part, I can see it both ways. The recent cure developments -- and those we hope are approaching on the near horizon -- are worth getting excited about and following closely. But it's important for us not to lose sight of the issues that matter in our community today, and not to get so wrapped up in our run to the future that we trip over the present obstacles that stand in the way of our health and our happiness. Pretty sure I speak for all of us here when I say that we'll do our best to ensure that TheBody.com and TheBodyPRO.com keep on an even keel.
Where do you stand on all of this? Do you value blow-by-blow coverage of each new development along the road to what we hope will be an eventual cure? I'd love to see what you have to say in the comment section.
Myles Helfand is the editorial director of TheBody.com and TheBodyPRO.com.
Follow Myles on Twitter: @MylesatTheBody.
Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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Comment by: rohit j
Wed., Jul. 17, 2013 at 7:21 am EDT
Shall i know that is it is real story or not...any way I have a one word to tell you to the HIV affected people is ,. Don't loose hope,be brave live like a normal person, And in your story YOU told that you organized one community for the HIV people,Its really good, all d best
Comment by: Pablo
Sat., Jul. 13, 2013 at 3:13 am EDT
I think that the French study said "Fourteen adults who started antiretroviral therapy (ART) soon after becoming HIV-infected and continued treatment for at least a year have been able to control the virus for one to seven years". are this a cure?, seven years less drugs. I see only four cures, Timothy Brown, and two men like Timothy but organ donor don't have crr5 mutation and one baby with Post Exposure Prophylaxis. You should watch this is a TED video http://on.ted.com/pJGx very interesting. For the industry the good business are sell drugs, no investigate and burn a lot of money for nothing. But for government the most important no are the people are the bank's and his bad business, I think with the half part the money that with us give it (only Spain), with this we have the cure in five years.
But the sad reality is that in my country the goverment don't have three million to give Iris Caixa to investigate the vaccines this men known what to do but no money.WTF.
For all this i think the future is bad for one cure for all people, is possible epidemic control, drugs, pep and people die like ever. In the future in the 45.000 A.C. we will are immune like the monkeys to SIV.
I hope be wrong, and arround the world more groups like iris caixa are growing and they have have money to investigate, cooperate with this and others things. We can't waiting to industry loss money with this and the government(Spain) hahaha better don't say nothing.
Excuse for my long text and my bad English, I want learn but hehe but is like vaccines if you want you can but with money is more quickly.
Comment by: Ajay
Fri., Jul. 12, 2013 at 5:20 am EDT
At least by keeping abreast with blow by blow coverage, we live in a illusion making us optimistic for eventual cure to hit anytime. Hope is a must for HIV patients to live and enjoy life. If by now 18 have cured, one day 180 would be cured and later on 1800...adding another cipher next time.It's a fiducial dependence on the geniuses to extricate us from this grime by discovering something which can help humanity.
Comment by: Patricia
Fri., Jul. 12, 2013 at 3:40 am EDT
I sure do look forward to a time when HIV cure will found and I am pretty sure we are not far from it.
Comment by: chad
Thu., Jul. 11, 2013 at 10:07 pm EDT
If and when they find a cure, it should be made available free of charge to all infected, otherwise the spread will continue... I doubt it will happen this way though.
Comment by: Dan
(SF Bay Area)
Thu., Jul. 11, 2013 at 8:51 pm EDT
Thank you so much for giving us access to the invaluable tool that is TheBody.com. I, for one, have a vested interest in following any credible new developments in the fight against HIV and AIDS, including a "cure". Thanks again.
Comment by: dab
Thu., Jul. 11, 2013 at 4:00 pm EDT
as a medical professional, my opinion = the cure talk is useless to daily life. less talk and more research
Comment by: Neil
Thu., Jul. 11, 2013 at 1:56 pm EDT
Keep the hope of CURE alive! It's the ultimate solution... to stigma (no virus, no stigma), side effects (no virus, no need for meds). Our advances in technology make this a viable reality. Hep C is a virus and they have made amazing progress in curing it (remember when Pam Anderson had it... me neither... cuz she's cured). Remember life before penicillin? It will be cured on day, I know it. I just hope I'm around to experience it. The fact that we have proof of concept that it's possible gives me great hope. I'd love to put all this behind me. This being going to the blood draw every three months, going to the doctor ever 3 months, going to the pharmacy every month, taking the pills twice daily, hating the fact that I can never do anything spontaneous because I have to coordinate having pills available... I'm grateful to be alive but knowing there's something inside me that will make me go skinny and wither away in a hospital bed covered in lesions if I stop taking the pills is a freakin' nightmare on Elm Street guys. I'd rather die in an airplane plummeting to the ground at a thousand miles per hour actually.
Comment by: Gerald Gerash
(Santa Monica, CA)
Thu., Jul. 11, 2013 at 1:52 pm EDT
My U.S. Congressman, Rep Henry Waxman, recently sent a letter to NIH asking them to detail NIH's cure research projects and the amount of funding appropriated for each. The letter was a result of a successful meeting of AIDS orgs reps in LA and two emminent cure research scientists, Dr. Ron Mitsuyasu and Paula Cannon, PhD and Mr. Waxman at his LA office. Our aim was, firstly, to educate him on the exciting progress towards a cure and, secondly, to ask him to use Congress's influence to increase the woefully small amount of funding NIH grants for cure research.
NIH has not yet replied.
You can contact me for more info: firstname.lastname@example.org I and another HIVer organized the original meeting with the Congressman.
Also Kate Krauss of AIDS Policy Project is organizing a plan to get private funding for cure research. see: http://www.aidspolicyproject.org
Comment by: Paul
Thu., Jul. 11, 2013 at 1:39 pm EDT
On one hand I think when people see headlines that shout " HIV Cure " and don't actually read the story, they may walk away thinking the risk of getting HIV has diminished and will be less diligent in their behavior, on the other hand I like to read about cure related research and developments.
Like everything else in the world today the Media exploits these cure related stories and distort the headlines to get people to click on links!
Comment by: DJ
Thu., Jul. 11, 2013 at 1:23 pm EDT
I look at it this way. This time when their is talk of a cure it is multifaceted unlike it was before. Because their are all different types of approaches towards a cure that will either fully eradicate HIV from the blood and/or a functional cure from different scientists and doctors around the world there seems to be more hope.
Honestly, I also think that money and name recognition is playing a factor in all of this as well. They are pushing harder than I have ever seen them push before to become the first person or team that cures this disease. For whatever reason they are doing it the fact is that it is good that it is being done.
There is hope on the horizon.
Comment by: Whyme G
Thu., Jul. 11, 2013 at 1:15 pm EDT
There are three problems in hand (at a high level):
1. HIV itself - One of the most clever pathogen that mankind is battling for last 30+ years
2. Stigma - This is how society is actually supporting the virus to kill the individual
3. Side-Effects - Either due to the medication or due to the virus.
In my opinion, it is right time to start fighting the 2nd problem in tandem. Else, the word cure may not have significance for many in this world...
Comment by: Jon M.
(Swift Creek, NC)
Thu., Jul. 11, 2013 at 1:58 am EDT
This is a difficult & confusing topic to discuss. With my HIV+ peers, my negative friends, and the professionals who treat & care for me. When I hear the word "cure", I think some modern miracle of science & medicine has been found that actually CURES HIV. No beating around the bush, if-ands-or-buts. The key has been found and all of us millions who carry the virus can be cured of it.
But that isn't so, is it? No, when someone so nonchalantly throws out that word in a headline, it means nothing to us, the people who are still dying from the wretched little evasive bugger hiding in our bodies, holding us individually hostage. The virus that demands we constantly need a barrier between us and others.
So, my thought is: stop using that word "cure". Until you can cure - eradicate - the virus from me and everyone else. Because its just another damn lie until then.
Comment by: Adam
Wed., Jul. 10, 2013 at 11:13 pm EDT
As one who was recently diagnosed positive, I find the talk of advancement towards a cure very hopeful. However, I am extremely grateful for those (like this blog) who remind me that this does not change my current situation, that I still need to focus on taking my medication, seeing my doctor, getting mental health care to deal with emotions surrounding my recent diagnosis, etc, etc. The possibility of a cure is wonderful to ponder, but, meanwhile, my reality must be about getting help to accept my diagnosis and to manage the disease using the lifesaving medications available to me now.
Comment by: George J Beier Jr
Wed., Jul. 10, 2013 at 12:38 am EDT
A cure that involves a 20% mortality rate and a life time of drugs worse than the ones I've been taking? No thanks! Seems to me that the media has been trumpeting this cure without really thinking it through. Still, I'm excited about the CalImmune trials.
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