As gay males, finding accurate and culturally competent information about our healthcare can be challenging. For the most part, the major concern of the medical community has been about our battle against HIV. Few other issues are studied. Even for this virus, our role is often dictated by the government agency, pharmaceutical company or university that is paying for the research. So, everything from erasure and homophobia to racism can be overtly or covertly part of the outcome.
As long term survivors of HIV, a few of whom have had an actual AIDS diagnosis, the message behind #uequalusu was a welcome one. Due to our decades long careers in gay male health and HIV, we knew these facts long before the general public and did our best to spread the word.
The so-called Swiss Study was the first breakthrough regarding HIV treatment and the inability of those with undetectable viral loads to pass on the virus to their sexual partners. This research was released back in 2008!
Swiss HIV experts produced the first-ever consensus statement to say that HIV-positive individuals on effective antiretroviral therapy and without sexually transmitted infections (STIs) are sexually non-infectious. The statement was published in The Bulletin of Swiss Medicine (Bulletin des médecins suisses). The statement also discusses the implications for doctors; for HIV-positive people; for HIV prevention; and the legal system.
The headline statement says that “after review of the medical literature and extensive discussion,” the Swiss Federal Commission for HIV / AIDS resolves that, “An HIV-infected person on antiretroviral therapy with completely suppressed viraemia (“effective ART”) is not sexually infectious, i.e. cannot transmit HIV through sexual contact.”
As much as many of us living with HIV, and working as advocates, celebrated this news, it was quickly rejected by most health departments, governments and even HIV orgs as an outlier that could not be trusted.
It was the PARTNER study, the first research of gay male couples, who had condomless sex, with one partner living with HIV and the other, HIV negative, also without the usage of PrEP, that changed the game. None of the HIV negative partners contracted HIV from his ART treated, undetectable partner!
Dating back to 2011 when looking at the results of Opposites Attract along with those of two similar studies, HPTN 052 as well as PARTNER, researchers have been increasingly coalescing around the notion that HIV transmission is likely impossible when the virus is fully suppressed thanks to ARV treatment.
Our company was founded in 2015. Prevention Access Campaign came along one year later with their #uequalsu hashtag. In 2017, we began printing information about this science. Over the years we have created specific articles around these facts, and snuck them into articles about HIV stigma, general gay male sexual healthcare as well as ways to heal our community from the AGE OF AIDS.
the science is true
Whether you learned about the facts behind U=U today, from one of our older articles, or years ago from other sources, there should be no doubt that the science is real. Study after study has confirmed this, without fail.
Unfortunately, some nations, HIV organizations and even healthcare departments and medical providers have been slow to accept these facts, or in the case of the United States Center for Disease Control and Prevention (CDC), unwilling to simply state ZERO RISK OF TRANSMISSION. Specifically their word games with “effectively no risk” continue to leave room for doubt and concern within the population that needs reassuring the most; gay males.
If gay males or society in general are ever going to take the facts behind U=U on board, we are going to need everyone from our governments and HIV/GLBT organizations to report the truth; without games or room for doubt.
WHAT EXACTLY IS UEQUALSU?
Once scientist were able to find and isolate the virus which causes AIDS, treating and controlling HIV has been the number one priority in stopping the spread of this illness. Various medication “cocktails” have been tailored to an almost amazing level. Now, HIV is a treatable, once a day pill, health concern for most, without the negative side effects of the past or considered a guaranteed death sentence. Undetectable is the goal of all HIV treatment.
This is mainly due to the Viral Load Test, which measures the amount of HIV virus located within the blood. The American Centers for Disease Control, CDC, defines an Undetectable viral load as, “when the amount of HIV in the blood is so low that it can’t be measured”. This does not mean someone is HIV negative or that they will remain undetectable without medication. How long before someone’s viral load remains undetectable and suppressed without proper medication is dependent upon the individual, their CD4 count, as well as their overall health. NO ONE CAN SAY EXACTLY WHEN THAT CAN HAPPEN. Missing one or a few doses will not automatically make someone’s viral load rise and resuming medication treatment usually results in a quick rebound to undetectable levels.
The easiest way to approach this topic is to start with your fears and discuss what undetectable DOES NOT MEAN:
- Someone is HIV negative
- Someone is cured of HIV
- Someone will remain undetectable even if they stop medication
- Someone can accidentally or intentionally infect someone with HIV
- Viral load amounts change from day to day, or even week to week
- Condoms are the only way to combat HIV infection
WHO DOESN’T BELIEVE U-U?
On the 28th of January, 2018, Healio reported the finding of a recent study on gay males belief, or lack thereof, in the veracity of U=U. Stating:
In a recent survey, most HIV-negative men who have sex with men were doubtful that maintaining an undetectable viral load through treatment prevents transmission of the virus, whereas most who do have HIV held the opposite view.
The survey was part of a study published in the Journal of the International AIDS Society. Researchers sought to gauge whether MSM accepted the“undetectable = untransmittable” concept, known on Twitter as #UequalsU, which suggests that maintaining an undetectable viral load prevents transmission of HIV even through condomless sex. #UequalsU is supported by studies and translates to treatment as prevention (TasP).
The researchers assessed the survey answers of 12,222 total participants. According to the news release, 70% of those with HIV believed #UequalsU, but only 36% without HIV or who were unsure of their HIV status believed it.
Another study, released in December of 2019 shows a slight increase in belief but a lot more work and outreach still needs to be done.
Now, a new study of nearly 112,000 men who have sex with men in the United States has found increasing acceptance of the U=U message in this population. Overall, 54% of HIV-negative participants and 84% of participants with HIV correctly identified U=U as accurate. The study was supported by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health. Study results were published online in the Journal of Acquired Immune Deficiency Syndromes.
The online survey also asked respondents to use a graduated scale from 0% (“no risk”) to 100% (“complete risk”) to rate the risk of a man whose HIV was undetectable transmitting the virus to his HIV-negative partner through either insertive or receptive anal sex without a condom. While studies confirm that a person whose HIV is suppressed do not transmit the virus through sexual activity, only 10% of all respondents rated the transmission risk as zero when the insertive partner has undetectable virus. Similarly, only 14% of respondents rated transmission risk as zero when HIV in the receptive partner is undetectable.
Among those who agreed that U=U was “completely accurate,” only 31% and 39% believed transmission risk is zero when the insertive or receptive partner, respectively, has undetectable virus. However, acceptance of U=U was associated with lower perceived risk of HIV transmission through any form of condom-less anal sex.
“A growing number of sexual minority men believe that U=U is accurate, but our data suggest that most still overestimate the risk of HIV transmission from an undetectable partner, which may be because people have trouble understanding the concept of risk,” said Dr. Rendina, the lead author on the study. “All published studies point to undetectable viral load as being the most effective method to date of preventing sexual HIV transmission, but most of our messaging has focused on the level of risk being zero rather than describing it in terms of effectiveness, which is the way we usually talk about condoms and PrEP.”
Only recently has the CDC created a page and chart detailing the level of effectiveness associated with both uequalsu (100%) and PrEP (99%). Unfortunately, all other pages still contain the “effectively no risk” wording
Both of the discussed studies suffer from the same issue of only including participants from gay males solicited on-line and from dating apps. This leaves a very large gap in knowledge about those who either don’t frequent these apps, were not aware of the study at all, or would not be willing to answer questions about their sexual life and beliefs, even if the information is kept anonymous.
Also, not surprising, those living with HIV are much more likely to trust and believe the facts behind U=U than those who are HIV negative. If we are ever to break the cycle of stigma, greater outreach must be done, on larger scales, to many different demographics of gay males.
it’s all about sex
NOTE: You may have seen a factually incorrect tweet sent by Bruce Richman, Founder of Access Prevention Campaign, the non-profit organization behind the U=U message on 7/23/2019, that stated it can also be applied to needle exchanges; please disregard it. This tweet wasn’t based on research, and neither the CDC, nor Mr. Richman’s own website says differently. The text from Preventionaccess.org states:
Does U=U apply to transmission through needle sharing?
U=U does not apply to HIV transmission through needle sharing. There is not yet enough research to draw a conclusion. For help regarding drug addiction and treatment, please visit drugrehab.com.
GREAT FOR MIXED STATUS COUPLES
The previously mentioned Partner study details the sexual habits of mixed sero-status gay male couples. Out of all of those participating, not one of the negative guys sero-converted to being HIV positive.
Uequalsu is amazing news to those guys who are already in these types of relationships and/or those guys who might enter one in the future. This science can have amazing effects on both partners as the fear of HIV infection is now reduced to zero. It’s hard to have great sex when one or both of the parties is worried about HIV. And very few relationships have been known to last after there was an accidental infection.
OPEN MINDED GUYS ALREADY WILLING TO HAVE SEX WITH POZ GUYS
Let’s cut to the quick and talk about gay male hook-up apps. Many of them now have an option to choose undetectable regarding HIV status. This quickly lets anyone know that, yes, you are living with HIV, but you have it under control and cannot pass it on to your sexual partners. Great.
But does it really change the minds of the most ignorant or bigoted guys about HIV transmission? Will it make a guy who calls having sex with us, “death sex” magically want to show us his willy? Probably not. And this is the rub.
If any undetectable guys are expecting to see and experience major changes within our community overnight, he is going to get his feelings hurt. We have had over 40 years of negativity and brainwashing forced onto us and it will take more than a few years and a cute hashtag to change this. It will take all around education efforts as well as patience, as too many believe that if there is even a .00001% chance of contracting HIV, it is too much and someone is playing with their life. This is a quote someone sent to us via text, just a few days ago.
U=U has potential to fight HIV stigma even in those who still might not want to have sex with someone living with the virus. We don’t need everyone to want to drop their pants for stigma to be decreased but the greater the number of guys who do believe the science the better.
Considering the thrust of U=U is about sex, we must remember the statics about how many actually believe the science and how they apply this knowledge in their sexual life. Far too many believe uequalsu overall but are incorrect on terms of transmission.
LACK OF TRUST
To be fair, gay males have some major issues with trust, to say the least. For over 4 decades it has been drilled into our heads and community standards that the men we sleep with cannot be trusted. This is in essence one of the largest tenants of the condom movement. “Use a condom every time because you don’t know where he has been, or who he has been with”. Yes, even if you are in a long term committed relationship.
Some guys are so concerned that it almost reaches paranoia. They will wear two (2) condoms (don’t do this, it’s stupid and doesn’t work) inspect the package with extra care and even want to see it after the sex is completed. The fear is real.
The entire premise around safer sex is about trust. Can you trust that the guy who claims to be negative really is? Can you trust the piece of paper he is showing is still accurate, and that he hasn’t done something risky since getting results back? None of these fears were assuaged when they learned about the look-back period. Their trust issues skyrocketed.
Further exasperating this are community issues like cheating, guys in the closet, and of course…the internet.
Nothing can be said to have raised the level of distrust within gay males as quickly as the internet. From dating app profiles where guys lie about everything from age, body type and cock size, to scandalous stories and fear based anecdotes about HIV and PrEP, the web is a perfect breeding ground for lies and twisted truths.
One of the greatest challenges PrEP has is about trust. How can you trust a total stranger to take a medication daily? This has been backed up by those who support condom only safe sex practices. You don’t know if he is really on PrEP, but you can see and feel a condom.
And now, this very concept of trust is becoming a hot topic concerning U=U. Yes, he says he is undetectable, but how do I really know? The honest answer is, you don’t.
But the greatest fear guys have now is whether or not the guy who is undetectable knows the truth himself.
LACK OF PROPER INFORMATION ABOUT THEIR VIRAL LEVELS
Just like guys claiming to be HIV negative, but actually not recently been tested or ever, are an issue for our community, it seems we might have a similar concern rising with some living with HIV and their viral load levels.
This wouldn’t be the lead topic of discussion on HIV health if it were not for the U=U movement. If you stress a blood test value’s importance, you must also factor in individual misunderstanding, and lack of knowledge. Not everyone gets it on the first go.
An article printed on the Reuters website, on the 23rd of January, 2020 has come under a large amount of scrutiny but also anger at the language used to discuss HIV and HIV treatment. We agree that the words are not correct in sensitivity and that the writer seems to go out of her way to use antiquated terms that still have the ability to promote and support fear and anxiety in the readers about HIV/AIDS.
With that being said, the research it is based on is interesting and tells us that much more work and education is needed for those living with HIV as those without regarding undetectable. We have included snippets from her article as it was published, including controversial wording, for the sake of transparency and accuracy.
For the study, researchers examined survey data from 314 HIV-positive men who have sex with men and were in relationships with HIV-negative partners. Participants got blood tests to see if they had undetectable viral levels: so little virus in their blood that it can’t be found in lab tests or transmitted to partners.
When asked, 72.5% of men accurately reported whether they were virally suppressed, with HIV at undetectable levels, or not. Most men who knew their status, 62.5% of the participants, said they were virally suppressed and this was confirmed by blood tests done as part of the study. Another 10% of men had lab work confirming their self-report that they were not virally suppressed, and were therefore contagious.
But one in five men said they were virally suppressed and had blood tests showing this wasn’t true. Another 7.5% of men said they were contagious, but based on lab tests done during the study, they were not.
Men in the study who mistakenly said they were virally suppressed might not be intentionally lying, Stephenson added. Instead, they might not understand that viral levels change over time or that previous test results may not reflect their current status.
“A doctor may have told you six months ago that you were virally suppressed and you hold this as a static truth,” Stephenson said.
Beyond its small size, limitations of the study include a lack of blood tests over time to help measure how consistently men took antivirals, the study team notes.
Still, the results suggest that better education may help prevent the spread of HIV among men who have sex with men, said Julia Marcusa, a researcher at Harvard Medical School and Harvard Pilgrim Health Care Institute in Boston, who wasn’t involved in the study.
“For U=U to work as an HIV prevention strategy, people living with HIV need to have an up-to-date understanding of their viral suppression status,” Marcus said by email.
To get this, patients need regular checkups with HIV specialists, and providers need to make sure men understand that U=U is 100% effective at preventing transmission to partners, regardless of condom use, as long as men really do have viral loads too low to find with blood tests, Marcus said.
“Regular medical visits with viral load testing are critical but not enough on their own,” Marcus added.
ACCESS TO PROPER TREATMENT AND CARE
We have articles where we address How to Find a Doctor and How to Find a Doctor Advanced. In both, we outline tips and suggestions for gay males to find the proper providers for their specific healthcare needs. We also speak of issues regarding healthcare insurance, access to gay friendly and knowledgeable doctors, living in areas with Religious Freedom laws, along with other barriers to proper treatment and care.
We cannot stress enough that the USA is not Europe, evidenced mostly by its healthcare system and insurance schemes. Literally being able to see a doctor when you are ill, or for preventative care is a privilege that many, especially those of colour, can’t afford.
If you have healthcare insurance and money in the states, your costs for HIV medications could vary greatly. Some have higher deductibles but lower out of pocket costs, others are the exact opposite. There are state benefit programs that will pay for the total cost, if they find you meet eligibility criteria. But many find themselves too rich for MEDICAID and too poor to pay out of pocket.
We can’t give you an exact amount for the cost of yearly supplies of HIV medications in the USA because of these unknown to us, variables. We have read estimates as low as $20,000 per year and as high as $45,000. But to assist you, here is a site that gives a rough estimate of individual medication prices. Remember, many living with HIV also have other underlying illnesses like anxiety/depression that will also need to be calculated in.
The above linked site gives information regarding so-called entitlement programs, federal benefits as well as pharmaceutical company assistance programs. The bottom line is, the more money and/or insurance you have, the better situated you will be to obtain an undetectable viral load, and keep it.
U=U IS FOR THE PRIVILEGED
There is a very simple and logical argument that can be made about this movement, it is for the privileged. As we have stated above and continue to address throughout other articles, living with HIV is costly on many levels. The issue of sex and not being able to pass it on when undetectable, might not be the biggest issue facing someone newly diagnosed or even one who has known for some time, but does not have proper access to medication, housing, shelter or food.
We are not saying that those living with HIV don’t care about the health of their sexual partners or possibly passing this virus on to them. What we are saying is that there is a hierarchy of needs, and some things for some people will take greater focus. If you can’t get meds and are having troubles maintaining an undetectable viral load, sex without a condom might not be highest on your list of needs.
The facts surrounding this movement are very important and should be known by those living with HIV and those who are negative, but to believe it is a primary and or even motivating factor in the lives of so many living with this illness, shows how out of touch many within the field of HIV can be. And why they have had such issues addressing infection and treatment. There is no such thing as a magic bullet.