Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:

PrEP Should Be a Fast Idea, Not a Slow One

| 2 Comments
The brilliant surgeon and author Atul Gawande recently wrote in The New Yorker about "slow ideas," ingenious new ideas that are slowly or never accepted while others flourish quickly. His article made us think instantly of pre-exposure prophylaxis (PrEP), a new and promising strategy to prevent HIV infections.

Gawande's example of the slow adoption of an idea was the difference between the adoption of anesthesia and the adoption of antiseptics in the mid 1800s. With anesthesia, people could be sedated during surgery, which benefited the surgeon as much as the patient. The idea took mere weeks to become a global phenomenon and enter into wide use. Conversely, antiseptic practices, which were burdensome for surgeons and acted against an invisible foe (bacteria) that might or might not cause death, took years to catch on. We write this blog post out of fear that without a significant shift in thinking about HIV prevention, PrEP will be a slow idea, resulting in thousands of people unnecessarily becoming infected with HIV.

PrEP involves the use of any anti-HIV agent before, during and usually after sex to prevent infection. Today, PrEP refers primarily to taking the HIV treatment Truvada every day along with using condoms. What we know about PrEP is that even in people who don't use condoms regularly, it can work amazingly well if taken exactly as prescribed. Two studies have found that daily use could be almost 100-percent effective.

We don't yet know fully what the acceptance of PrEP will be among men who have sex with men (MSM). Granted, PrEP is far more expensive than a bucket of condoms in a bar's bathroom. Studies are just beginning to determine its impact outside clinical trials and whether PrEP can easily or adequately be provided in real-world settings.

What we do know, however, is that very few MSM, and far fewer exclusively heterosexual people, even know about it. And we also know that very few providers have prescribed it -- some of them only reluctantly -- even though they are seeing patients who could clearly avoid infection as a result of using it.

Even though Truvada as PrEP was approved by the FDA last summer, only about 1,700 people in the United States have taken it outside carefully controlled research projects. Given that roughly 50,000 people, most of them MSM, become infected every year, this is far too few to make a dent in the epidemic, and that's extremely unfortunate.

We are not arguing that everyone should start taking Truvada any more than we are arguing that people should abandon condoms. Rather, what we are saying is that, despite modern antiretroviral therapy, HIV is an expensive, stigmatizing and challenging disease to treat. HIV-positive people risk side effects from long-term treatment and the low levels of virus that continue to reproduce despite that treatment. Any new case of HIV infection averted is beneficial for the individual and society as a whole. Every meaningful opportunity to prevent a case of HIV infection should be greeted with pleasure. The opportunity to implement PrEP should be met with great excitement and a sense of urgency.

We can endlessly wish or expect that people will consistently use condoms in order to prevent HIV infections from occurring, but it is unrealistic and dangerous to think that we will ever effectively guarantee this. Rates of unplanned pregnancy are evidence enough that people are not always in perfect control of their sexual behavior in the face of love, lust or even pressure.
Some HIV care providers and prevention workers appear to be acting as gatekeepers for PrEP, out of a belief that condoms should be enough to stop the epidemic, or out of concern that this intervention will further decrease condom use. Recent cases we are aware of make this plain, where doctors who should know better refuse to give PrEP to those who need it.

Also, comments on blogs reacting to people describing their PrEP use have been accusatory and absolutely reprehensible, essentially a new version of slut shaming. Many of these same critics who condemn PrEP users would vigorously argue that women have an unfettered right to choose the form of birth control method that best suits them, and that providers have no right to impose their personal views on such intensely personal decisions.

We do not have the luxury of allowing PrEP to become a "slow idea" that takes years to be implemented, or -- as with its sister intervention, post-exposure prophylaxis (PEP), which is emergency treatment after exposure -- never really gets implemented at all. We have known for nearly two decades that people exposed to HIV are far less likely to become infected if they immediately take a course of antiretroviral therapy for about a month. Yet a hospital in New York City recently spent hours dithering over whether to offer this intervention to a man who had definitely been exposed to the virus.

One of Gawande's suggestions for speeding up the adoption of new technologies is an "each one teach one" approach, whereby people engage with others to help spread the new idea. We hope that you, the reader, will become knowledgeable about PrEP, not just for yourself but in order to suggest consideration of it by people you care about who might otherwise become HIV-infected. We hope that if you see articles or blog posts in which people honestly describe their positive motivations to use PrEP, you will praise them for acting responsibly rather than condemning them for doing something transgressive. We hope that you will join with us to support the right of HIV-negative people to choose which forms of prevention they use. And we hope you will tell your providers about PrEP and its promise and encourage them to offer it to patients who might benefit from it.

More information about PrEP and short videos about it are available at www.projectinform.org/prep or www.myprepexperience.blogspot.com.

On February 12, just in time for Valentine's Day, the U.S. Department of Health and Human Services (DHHS) antiretroviral treatment (ART) guidelines panel issued updates to their recommendations for when people living with HIV should start ART and which drugs are best to use, among other important treatment considerations.

Though there were a number of changes, three key areas are worth mentioning. First, though the guidelines panel still recommends that ART be offered to all people with HIV regardless of the status of their immune health, measured by CD4 cell counts, and though the strength and weight of that recommendation did not change, the data cited by the panel to back up their decisions was supplemented with additional studies.

This is notable, because the Institutes of Medicine recommends that guidelines panels base their decisions on high quality data. There is exceptionally strong data that starting ART when CD4 cells drop below 350 is protective not only against major illness, but also death. Data is moderately strong for starting when CD4s drop to 500. The data on treating at higher CD4 counts has been a bit mixed, however, and experts don't expect to have a more definitive answer until a randomized control study currently underway concludes in 2015 or 2016.

Progress and Controversies in Cure Research

| 25 Comments
I just returned from one of the most fascinating and promising conferences on HIV cure research that I've ever attended. Held November 28 to 30 in Washington, D.C., the Division of AIDS from the National Institutes of Health (NIH) sponsored a meeting that brought together many of the researchers funded by or collaborating with the Martin Delaney cure research collaboratories.

Martin Delaney, Marty to me, was a mentor and close friend and founded the advocacy group Project Inform in 1985. One of the giants of AIDS treatment advocacy, it is fitting that the research collaboratories--public private partnership to move cure research as rapidly as possible from the test tube to the bedside--bear his name and I am certain he would have been as thrilled as I was with the quality of the science presented and discussed at the meeting.

Progress

Though the meeting, as any government-funded meeting, was technically open to the public, some of the data presented has not yet been presented formally at conferences or published in journals. For this reason, we were asked not reveal all of what we learned over the course of the meeting just yet, at least not in detail, but I can say that evidence of progress was certainly evident and is likely to be reported in fuller detail soon.

I expect that much of what I learned will be presented in the coming months at the Conference on Retroviruses and Opportunistic Infections (CROI) taking place in March in Atlanta, or the International AIDS Society (IAS) meeting to be held in July in Malaysia, or at another upcoming meeting.
Demonstration.jpg
Writing recaps of events such as the 19th International AIDS Conference--which took place last week in Washington, D.C.--one always poses the risk of overshadowing brilliant, but small incremental steps by spending most of the time highlighting the big themes. When it comes to AIDS 2012, however, I'm in no danger of doing that, because aside from an almost robotic repetition of the phrase "AIDS-free generation," and the official slogan "turning the tide together," there was no big news or overarching theme.

Revolutionary science was in short supply, though there were some hopeful glimmers, which I'll get to in a moment, but Obama was a no show. Instead we got a Clinton sandwich, our current Secretary of State near the opening and her husband, the former President at the closing, both peddling an optimistic view of the future that had noted AIDS journalist Laurie Garret asking, "What are they smoking?"

Media stories on the conference seemed even more scant and pallid here at home than in the past, especially considering that the conference took place in the United States for the first time in 20 years. Thus, the power of these conferences to force the world's attention, for at least several days, towards the realities of the AIDS pandemic appears to be significantly diluted. And so, one has to wonder--did it make a damned bit of difference that we collectively spent millions of dollars to fly nearly 24,000 people from all over the globe to our nation's capitol to talk about HIV for a week?

As I did not and could not attend every plenary, workshop, satellite session, talking circle and performance that took place I can only give my own opinion and acknowledge that it comes from a limited place. That place is as a treatment and prevention science advocate focused predominantly in the United States. For me, and the work that I do, it was worth it, but only just. Here are my big takeaways, from the most hopeful to the most discouraging:

Hopeful

I am probably biased, as cure research is one of the areas I'm most involved in, but I believe that studies presented in this area represented some of the most intriguing and exciting science of the entire week. The International AIDS Society (IAS) released a new strategy document for cure research two days before the conference started at a pre-conference titled "Toward a Cure." I attended this pre-conference and most of the cure-oriented sessions during the week that followed.

With each presenter, there was always a stated caveat that we are at the very beginnings of a true search for a cure, but the baby steps we have made so far are impressive, especially considering that many of them were initiated only once word got out that we'd actually cured someone of the disease a couple of years ago.

Much remains to be done. While many acknowledge that a sterilizing cure--where every trace of HIV is removed from the body--will likely take a combination approach and at least a number of years further research, there is evidence that at least in some rare cases we might be able to achieve a cure more simply. There was evidence that simply getting people on ARV therapy within days of infection could help approximately five percent of those individuals ultimately go back off treatment later without losing control of the virus--and that they might be able to remain off treatment for life.

We also learned of two individuals with HIV and cancer who received bone marrow transplants and in whom researchers have not been able to find traces of HIV for at least a couple of years. Further tests will need to be conducted to look more deeply for the virus in this lucky pair. Also, since these individuals remained on antiretroviral (ARV) therapy throughout their transplant and up to the present, the real test will be safely interrupting their treatment and seeing what happens. In the meantime, these brilliant steps forward will undoubtedly keep hope and enthusiasm for cure research alive.

There were also a number of reports showing that expanding HIV testing in a targeted fashion and offering people with HIV treatment earlier than in the past, both for their own health and to prevent ongoing HIV transmission, can not only be cost effective, but in some cases cost savings. Some have objected to the great push toward treatment as prevention (TasP), citing concerns that people might feel coerced to start treatment for prevention reasons when they don't need it themselves. Numerous studies and posters, however, confirmed that allowing the virus to reproduce, even when a person's CD4 count is high, can cause all kinds of damage to the body. In fact, the IAS published its own guidelines during the conference, recommending treatment for all, regardless of CD4 count. A large study is ongoing to prove conclusively whether earlier treatment will be beneficial. In the meantime, however, the weight of the evidence appears to support it.

Cautiously Optimistic 

One thing that left me feeling cautiously optimistic was a pledge announced by Secretary of State Hilary Clinton to develop a blueprint for an AIDS-free generation. While grand pledges are no guarantee that we will achieve the goals set out in plans of this sort, we have already witnessed the ways in which having a National HIV/AIDS Strategy has begun to transform our own domestic response to the epidemic. This pledge also came with a promise of additional funding to focus on special populations, including men who have sex with men (MSM), sex workers and drug users. This is critical, as the tremendous stigma and criminalization of these populations has resulted in some countries devoting almost nothing to reach individuals in these risk groups despite the fact that they often bear a disproportionate burden of the epidemic.

Along these lines, I was impressed that the conference is finally giving a more central focus and space for exploring the epidemic in gay men and other MSM who are at highest risk of HIV in a majority of countries worldwide. MSM, particularly MSM of color, have often received the least resources while having the highest HIV infection rates. Efforts to overcome the systemic homophobia that drives research and programming for MSM into the shadows is finally bearing fruit.

While I am pleased with this greater focus, we must now make up lost time. This is particularly true for black gay men and other MSM in the United States. New research presented at the conference has begun to outline some of the predominant reasons that black MSM remain at highest risk of HIV infection in the United States. Even though black MSM appear more likely to use condoms than other MSM, they have poorer access to health care (whether HIV-negative or HIV-positive). Also, because so many black MSM are already infected with HIV, it means that one slip-up in condom use is vastly more likely to result in HIV infection than for other MSM whose partners come from groups less likely to carry HIV. To make good on this new research we will need to quickly translate it into action.

While not a panacea, the Affordable Care Act (ACA) offers a great opportunity to expand sexual health and HIV care to more individuals. Further work must also address structural factors, such as aggressive racially biased law enforcement policies (think "stop and frisk") that result in high incarceration rates among young MSM of color and also incredibly high rates of unemployment. Lastly, evidence-based interventions to help young MSM of color remain resilient in the face of racism and homophobia are also urgently needed.

Discouraged

When former President Bill Clinton closed the conference he urged us all not to despair over funding shortfalls at a domestic and global level. He insisted that as long as we--governments and civil society organizations--demonstrate that our programs are effective and cost efficient, "the money will be there."

I would very much like to believe him, and perhaps this is where my views part ways with some others who attended the conference and expressed a more hopeful feeling upon leaving Washington, D.C. Yes, we have some very powerful tools to tackle the epidemic: 1) rolling out more aggressive testing efforts; 2) expanding treatment coupled with adherence support to more individuals, both for their own health and for the prevention benefits that would follow; and 3) offering combination prevention including PrEP for those at particularly high risk of infection. 

Researchers have found that under certain cases, each of these can be cost effective, and at times, cost saving. Also, health care systems and non-governmental organizations have been retooling for the past several years to ensure that money is spent on high-impact, evidence-based programs. We're doing exactly what Clinton outlines.

Yet, these are the realities on the ground:
  • The European Union has teetered on the brink for over a year and each announcement of a "rescue" is following by another announcement threatening impending collapse. Many experts suspect that if countries such as Greece or Spain end up being forced out of the Union, our own economy will slide back into a recession, thus leaving the biggest donor nations in dire financial shape.
  • Exploding economies in China and Brazil have begun to slow down, lending further weight to fears of more economic woes for us all in the near future.
  • When new efficiencies and costs savings were realized in the resource-poor nations where HIV treatment has been expanded, the U.S. government chose to cut money out of global funding for AIDS rather than commit the additional money they'd originally pledged toward expand treatment to more of the millions who still go without ARV therapy. When people claim that HIV is a "manageable chronic disease," I can only laugh bitterly at their naivete when I think of the millions who still don't have access to ARVs. You can't manage your disease if you don't have the medicine.
  • Experts say that Republicans--who have vowed to disable or kill the Affordable Care Act--could easily win both the Senate and the Presidency and make good on that promise. I'm astounded when I hear my compatriots claim that Obama has a good shot at winning a second term. No president, aside from Franklin Roosevelt, has ever won a second term with an economy as bad as ours is. Mitt Romney may be incredibly unlikeable, but that won't matter if middle-of-the-road independent voters in swing states who are disenchanted with Obama outnumber the young people and people of color who swept Obama and many Democratic representatives and senators to victory in 2008--and voter suppression laws have already been put on the books or expanded in many of those swing states that disproportionately target those predominantly Democratic voters. If you care about the people with HIV, and if you further recognize the need for the Affordable Care Act with all of its flaws, you absolutely must do everything you can to ensure victories for Obama and a number of vulnerable Democratic senators and representatives throughout the nation.

These are just a few of the things that keep me up at night and that also leave me worried that just as we have gained the tools to turn the epidemic around we may find ourselves without the resources to implement them.

International conferences can function like church revival meetings, getting us fired up and reenergized to tackle our problems with new vigor. Some have publicly lauded this conference and expressed renewed optimism about the field. I think we'll only come to understand AIDS 2012's value and legacy in future years. What I most hope, however, is that we will watch our governments carefully and hold them accountable for the promises made. Perhaps this conference will ultimately be seen as the moment when we actually did turn the tide on the epidemic. Over the past 30 years of the epidemic we have, in fact, made epic accomplishments that many skeptics argued would be impossible. I'm not giving up hope, but I am watching and witnessing the promises made this year and I will do everything I can to ensure that those who made them are held accountable if they never come true. I hope you will join me in that task.

Getting Practical About PrEP

| 15 Comments
Time to bring in the referees: a U.S. Food and Drug Administration (FDA) panel has voted to approve the first HIV prevention medication for adults in the history of the epidemic--and some people are not at all happy about it.

On May 10, 2012, an FDA advisory panel recommended with near unanimity that the antiretroviral (ARV) drug Truvada (tenofovir plus emtricitabine) may be used not only by HIV-positive people to treat their HIV, but also by some HIV-negative people to prevent them from acquiring the virus. The panel's recommendation, which the FDA will likely follow, should have been an occasion for great joy--the triumph of the first new prevention tool in the 30-year history of the epidemic--but the hearing, just like the public discussions that led up it, was marred by apprehension, misinformation and controversy. 

In my capacity as Director of Research Advocacy for Project Inform I attended the marathon twelve-and-a-half hour FDA advisory meeting, one that highlighted a schism among the audience members and some of the panelists, and suggests contentious public discussions about resource allocation and on PrEP's efficacy and safety are still to come. 

Since the vote, several prominent activists and researchers have expressed their displeasure, citing concerns about side effects and drug resistance and worries that people will throw out their condoms. While it's understandable that tempers are running hot as we dissect the science, pragmatism, from all sides, is what's truly needed.

AIDSmeds' very own Tim Horn gives an excellent overview of the full hearing and its outcome here (so I won't go into a blow-by-blow account), but I do want to draw attention to a presentation given at the beginning of the hearing by Susan Buchbinder of the San Francisco Department of Public Health, who made one of the most compelling cases for PrEP that I've heard yet.

Buchbinder described how condoms and behavior change alone have failed to put even a small dent in the epidemic for some time. There are myriad reasons for this, but at the heart of it is that lots of people struggle to use condoms consistently for vaginal or anal sex and our efforts to fix that have been only modestly successful. We are going on 16 years of flat HIV numbers overall--more than 50,000 new cases per year in the United States--and HIV rates are rising in young men who have sex with men (MSM), particularly young MSM of color. In fact, in some cities nearly 80 percent of young black men could become infected by the age of 60 if something doesn't change--not because of greater risk-taking behavior, but simply because HIV is so prevalent among their sex partners that even one or two slip-ups can have devastating consequences.

On top of that, Buchbinder explained, our best interventions to help reduce HIV risk through behavior change have rarely demonstrated long-lasting effects in most people, nor have those studies ever documented an actual reduction in new HIV infections. Lastly, for many people condom use means risking the loss of a relationship or safe housing, or in some cases physical violence. Such people desperately need prevention tools that take such risks into account and that don't require the consent and cooperation of their sex partners. PrEP fully meets those conditions.

Given the stigma and emotional hardship of an HIV diagnosis, the risk of discrimination and prosecution, the reduced life expectancy and astronomical cost of health care, allowing 50,000 more people to become infected each year is an unfolding moral and financial catastrophe.

Like condoms, PrEP can be a highly effective technology--more than 90 percent effective when used correctly. And just like condoms, PrEP only works if it is used. Unlike condoms, however, which are cheap, abundant and safe, Truvada for PrEP is expensive, and carries the risk of side effects and of causing those who become infected while taking Truvada to develop drug resistance. This is a substantial point of controversy. But as Buchbinder and others have pointed out so eloquently, for tens of thousands of people each year the choice won't be one of PrEP versus condoms, but PrEP versus nothing at all.

It's fair to assume that most people share the same goal at heart: to end the AIDS epidemic in a way that respects the rights and wellbeing of those living with HIV and those at risk for becoming infected. PrEP, I believe, is a critical step toward that aim, if we apply it properly. Here's how: 

Give people the facts--the whole picture--and let them decide whether PrEP is right for them

Let's tell people how effective the drug is when they actually take it as prescribed--over 90 percent effective--and stop quoting statistics from the clinical trials where they averaged all of the people together whether or not they were actually taking the drugs. People are going to need motivation to adhere well to PrEP and telling them that it will only cut their chance of becoming infected by 42 percent (the iPrEx study) or 75 percent (Partners PrEP) is not only dishonest, it could significantly undercut their willingness to take a pill every day. How would people feel if we said that condoms were only 30 or 40 percent effective and never revealed that this figure is true only because we counted all of the people who never used condoms in the first place?

Let's also stress that in the clinical studies, PrEP was used with condoms, at least some of the time by some of the participants, and that it shouldn't be seen as a complete substitute. That said, the fear that people will forgo condoms for PrEP is a reasonable one. Therefore, I believe strongly that we should be targeting PrEP to those who are struggling most with condom use, for whatever reason.

Let's also emphasize that while side effects were rare, and not immediately serious in the vast majority of PrEP-takers in trials, we honestly don't know what long-term side effects will look like. People who ultimately end up taking PrEP for more than two years are entering new territory, as are people who might have greater underlying risks for kidney or bone disease. 

PrEP is not benign, but neither is HIV; let's strive for balance and accuracy in describing both. We all have a responsibility to correct inaccurate information where we find it, whether in our community publications or blogs, local planning meetings or in our groups of friends. We can never know who's in most desperate need of PrEP and who might be swayed inappropriately one way or the other by misleading or cherry-picked information.

Speaking of correct information, let's also spread the message far and wide that "disco dosing," whereby people only take Truvada during sex, is completely untested and that there are reasons to fear it won't work. Misuse of PrEP is a realistic concern, and we should do what we can to discourage it, but prohibiting PrEP for everyone out of fear that some will misuse it is the worst kind of paternalism.

At the beginning of the AIDS epidemic a group of HIV-positive men and women assembled in Denver and produced what's called the Denver Principles: a manifesto that demands the rights of people with HIV to make their own healthcare decisions based on the best possible scientific knowledge available; that health care providers stop treating people with HIV like ignorant children who aren't capable of being full partners in their own health care. 

We should afford the same rights and respect to HIV-negative men and women seeking to protect themselves from becoming infected.

Advocate fiercely for demonstration projects, where we test how best to use PrEP in real-world settings

We know how PrEP works in the artificial confines of a clinical trial (efficacy), but we don't yet know how it works in the real world (effectiveness). Understanding the difference is crucial and the only way we'll learn this will be in the multiple demonstration projects that will be slowly rolling out over the coming months and years. Yet, paradoxically, one prominent HIV organization tried to shut down two large demonstration projects in California this spring for reasons that were never entirely clear, but were apparently due to out-and-out opposition to PrEP altogether. Right-wingers spew enough anti-science rhetoric around HIV as it is (e.g. opposition to needle exchange and promotion of abstinence only education). We certainly don't need that coming from within our community.

Here are the things that each of us can do to support these demonstration projects:

  • Insist that our local, state and federal AIDS organizations are advocating for demonstration projects in our communities. We'll never learn how to use PrEP safely and effectively if we don't. The AIDS Vaccine Advocacy Coalition (AVAC) will be helping us keep tabs on demonstration projects and the target communities of those projects on their website (www.avac.org).
  • Let's do what we can to reduce the stigma associated with participating in these kinds of trials. If we hear our peers or our community leaders denigrating HIV-negative people who struggle with safer sex or who might be considering PrEP, or claim that people can't be trusted with this technology let's call them on the carpet. 

Turn down the emotion on conversations regarding resources for PrEP

At a time when we still have thousands of people with HIV who don't have health care, and when we still have waiting lists for the AIDS Drug Assistance Programs (ADAPs), it's completely understandable that people would fear anything that might further stretch resources. Still, we don't have to let that fear shut down reasonable and necessary discussions, or cause us to neglect the facts.

Some have expressed fears that if public or private health insurers choose to cover PrEP it will lead to a reduction in resources for people with HIV. Health insurance plans aren't generally set up that way, however, and extending services to one group rarely results in reduced services to another.

So if PrEP won't take resources away from HIV-positive people on Medicaid, Medicare or private health insurance, what about Ryan White or the AIDS Drug Assistance Programs, which provide healthcare and HIV drugs to low-income HIV-positive people who don't have insurance? By law, no money from these programs can ever be spent on HIV-negative individuals' health care. What's more, we have never had federal budget discussions where an increase in prevention funds at the CDC had to be offset by cuts to Ryan White, and that has been true throughout the last five years of extreme shortages in ADAP funding. At the state and local level, the reverse has actually been true.

Moreover, Truvada's maker, Gilead Sciences, has promised to offer PrEP for free to lower-income individuals who don't have health insurance, as well as to provide vouchers to cover HIV testing and condoms. That's a massive reduction in the likely costs for PrEP to cash-strapped state and local HIV prevention programs. We'll still need to find money from our HIV and STD prevention funds for doctor visits, adherence support and tests to monitor a person's bone and kidney health, but that's a more manageable task given that awareness of PrEP among those at high risk for HIV is quite low and so we aren't expecting a huge and immediate upswing in demand for it.

If PrEP uptake is as low and slow as many expect it to be, we will have plenty of time for the hoped-for demonstration projects to reveal how effective it is in real-world settings. Armed with that information a couple of years down the road, we can then have reasonable conversations about the resources required to reach those who need PrEP most. We can also figure out where PrEP will be most cost effective. Given that PrEP itself will be free to some of those who need it most, experts have already estimated that this will be incredibly cost saving when compared to a lifetime spent on ARVS if they become infected.

HIV-positive and HIV-negative activists have partnered hand-in-hand for nearly thirty years to advocate for both care and treatment for people with HIV and prevention services for those not living with the virus. It's been a winning, effective combination. I hope when it comes to PrEP we can overcome fear, suspicion and rancor and ensure that this partnership stays strong.

HIV Treatment Guidelines Change: But Who Cares?

| 1 Comment
Actually, I care quite a bit. I know others do as well, but I'd like to make a point that for a lot of people the new guidelines just don't matter--even though they should. Let me explain.

A couple of weeks ago the government committee that constructs guidelines on when and how to treat HIV published an update, particularly about when people should start treatment. Here are a couple of key things that changed:

  • The guidelines subtly altered their recommendation for starting treatment with CD4 cells above 500. Where the guidelines used to say that the committee was split and that it was largely up to the provider and patient, the new guidelines say that treatment should be offered to all such individuals, but that the weight of the recommendation (which is not the strongest) should be explained.
  • The committee now recommends that providers explain how treating HIV can keep people from passing on HIV to their sex partners. 

There were other important changes, such as the fact that people with hepatitis C and people over 50 treatment should be considered right away no matter their CD4 count, but for this post I'd like to focus on the two I highlighted and why the change might not make much of a difference in the real world.

Some are worried that the new guidelines go too far and get way ahead of the data. In fact, there is currently no controlled study proving that starting this early is good for people. There is evidence strongly suggesting that HIV is doing silent damage every day it goes unchecked in the body and that this has long-term consequences, but for many, including guidelines experts in Europe, that's just not good enough.

I personally believe that we will eventually prove pretty conclusively that earlier treatment has benefits and there is a study ongoing right now, the START study, trying to do just that.  Unfortunately, START probably won't be completed and analyzed until 2015.

I'm actually a lot more worried about the fact that we already do such a piss poor job of implementing the old guidelines that the new ones will be like those delicate flowers made out of sugar that they put on fancy cakes. They're pretty to look at, but they crumble in your fingers if you try to do anything with them.

In fact, here's a snippet from a study published in December 2011 by the U.S. Centers for Disease Control and Prevention (CDC):

"In 2010...of the estimated 942,000 persons with HIV who were aware of their infection, approximately 77% were linked to care, and 51% remained in care. Among HIV-infected adults in care, 45% received prevention counseling, and 89% were prescribed ART, of whom 77% had viral suppression. Thus, an estimated 28% of all HIV-infected persons in the United States have a suppressed viral load."

No there are no typos in there. Let me break it down:

  • Only 51 percent of people who know their status stay in care.
  • Just 28 percent of people who know their status have a suppressed viral load.
  • Less than half of people with HIV received prevention counseling.

Now a few more pieces of information:

  • Given that the average CD4 cell count at diagnosis in most urban settings is well under 500, it is safe to assume that a lot of people who should be on treatment by the old guidelines aren't even in care at all, and of those who are in care a lot of them are not properly treated or supported in their treatment.
  • Some research indicates a huge communications disconnect exists between providers and patients. It reveals that providers often say something along the lines of "You really should be on treatment, but it's important to be ready," and that when doctors say this their patients actually hear: "Treatment right now is optional and we'll wait until you're ready."
  • Random sampling indicates that a sizeable number of people who work in test centers or as case managers or as community leaders are unaware of what the guidelines say and frequently offer misinformation about both the benefits and potential side effects of treatment.
  • When asked why they don't talk about sexual risk behavior more frequently, many providers say they don't have the comfort or the time to do so.

There are plenty of reasons that people fail to start treatment at the proper time or fall out of care, and those reasons require structural and supportive interventions to contend with them. Some of the reasons include: stigma, poverty, unstable housing, violence, mental illness, substance use, an Orwellian corrections and parole system. The list goes on.

As activists we are often very good at and spend a lot of time trying to explain how dealing with those issues is a matter of social justice--that there are certain basic dignities and rights that we must afford to people with HIV to ensure that they can live a long and meaningful life. I have long worked to ensure that HIV treatment education is delivered in a manner that recognizes those needs and rights.

People with HIV also deserve a full and accurate explanation of the benefits and risks of treatment, however, from all parties involved in their care and treatment and I also believe this is an issue of social justice. At the end of the day the decision whether to start treatment--at any CD4 count--properly resides with person who must take that treatment, but it is our duty and obligation to ensure that when a person decides they are doing so with the best information.

Trying to explain the nuances of the research on early treatment in a balanced way isn't easy, even with people who are fairly knowledgeable about medicine. Some providers and treatment educators do it very well and others more poorly.  Similarly, we have waited far too long to integrate sexual health into HIV healthcare in general and into our treatment education messages, all the while we have known for nearly a decade that an undetectable viral load was highly likely to reduce the risk for transmitting HIV.

The promise offered by the new treatment guidelines is tremendous, both for people with HIV and for society at large. I would like to ask those whose job it is to serve people with HIV to know what the guidelines say and to pledge that they will do whatever they can to make sure that those they serve also know about the guidelines and are receiving care and medical advice consistent with those guidelines. I'd also ask people who try to offer personal advice and support to the newly diagnosed through support groups or online forums to understand the guidelines well too.

The guidelines aren't perfect. They are one set of experts' interpretation of what the data says. There is room for debate and disagreement over whether those experts got it right and whether the benefits and the risks of treatment are adequately addressed. What I think we all can agree on is the fact that we are currently failing to ensure that all people with HIV have the full and accurate information they need to make their own treatment decisions and they deserve a lot better from us.

So to sum it up I'd like us all to pledge to do better and that really means all of us, from top government officials, doctors and leaders of AIDS organizations to the average person living with HIV. I hope you'll take my pledge.


Archives

Subscribe to Blog

Recent Comments

  • tony: greetings, I have been HIV positive for about 25 years. read more
  • Michael: This is so great to see! I've always thought that read more
  • michael: Ha.well..how much money will the companies lose when and if read more
  • Lee: This is one thing i find kind of odd? after read more
  • Lani: I am curious, arent the drug companies lining there pockets read more
  • Rita Jonker: heartening news read more
  • Sid: Uh, shouldn't you disclose the fact that you're a shill read more
  • Roderick: I have been married to my wife for 14 years read more
  • Joe Beckmann: About two years ago I substitute taught in a health read more
  • Debra: I pray everyday if not minute of my life that read more

Find recent content on the main index or look in the archives to find all content.

Project Inform on Twitter

Disclaimer

The opinions expressed by the bloggers and by people providing comments are theirs alone. They do not necessarily reflect the opinions of Smart + Strong and/or its employees.

Smart + Strong is not responsible for the accuracy of any of the information contained in the blogs or within any comments posted to the blogs.



© 2014 Smart + Strong. All Rights Reserved. Terms of use and Your privacy