What do you understand about HIV/AIDS? Have you been affected by these conditions personally? In your circle of friends and loved ones? In your practice? What do you know about working with clients who have HIV or AIDS?
In the last 35 years in this country, we have witnessed something unprecedented: the rise of a new infection; panic, social stigmatizing, and judgment; and the development of treatment strategies that have turned a once-deadly disease into a chronic condition that can be managed successfully, if not yet completely cured.
Today, we know that if people with HIV have access to treatment, they can live long, healthy, fully functional lives. Aggressive public health campaigns have drastically decreased the number of people contracting the disease through mother-child transmission, and clean needle programs have made big dents in the transmission of HIV by way of contaminated needles.
But lingering myths and stigmas about HIV and AIDS remain, even among massage therapists. Some of these date back to our early, murky understanding of this disease and how to treat it; some are simply the result of fear and ignorance.
In this article, we will look at some of the myths—not just about HIV and AIDS in general, but in the context of massage therapy for people who are HIV positive. We will examine some commonly held beliefs, and provide some up-to-date truths, all with the goal of helping massage therapists and bodywork practitioners make evidence-informed choices when they have the opportunity to care for clients who live with HIV.
A Little History
Before the mid-1940s, infectious disease was a leading cause of death in the United States and around the world. Then, something miraculous happened: the widespread and successful use of antibiotics. Boom! We now had a way to treat tuberculosis, strep throat, rheumatic fever, and even syphilis. With these new tools, along with effective vaccines for several threatening viral infections like polio and smallpox, we thought we more or less had infectious disease whipped, and we could turn our focus onto other health challenges.
But the 1980s humbled us in a big, big way.
Today, we still see between 40,000 and 50,000 new HIV infections in the United States each year, and that number has not substantially decreased in at least a decade. Widespread screening, prenatal intervention, and needle exchange programs have led to much lower rates of infection among women, infants, and injected drug users. Most new infections are among young men who have unprotected sex with men, especially among racial minorities. The South now has the highest concentration of new cases.
The gradual shift of the perception of HIV and AIDS from a terrifying death sentence to a chronic but treatable illness has been a double-edged sword, as we clearly have a lot more work to do to achieve lower infection rates from this virus.
Dispelling Some Lingering Myths about HIV and AIDS
Despite a growing library of research and public education, a variety of myths still surround HIV and AIDS. Let’s look at some of the persisting misunderstandings of this infection, especially in the context of massage therapy practice.
Myth
“All HIV is the Same”
Many people have an idea that all HIV infections are essentially identical. This is untrue.
Because of its complicated replication process, this virus is susceptible to many subtle mutations as it transforms from RNA to DNA, and then back to RNA again. Many of these mutations fail, and that generation of virus doesn’t survive. But some of these mutations are successful enough to take hold. They are represented in future replications, and in future infections to new hosts. This is important, because not all strains are equally easy to test for, they are not equally responsive to medications, and the evolution of these subtypes influences our chances of ever developing an effective vaccine.
Right now, we have two main strains of the virus: HIV-1 (first isolated in 1984) and HIV-2 (first isolated in 1986). Almost all the infections in the United States are with HIV-1, where HIV-2 is most prevalent in West Africa and in countries that do a lot of trade with West Africa. HIV-2 has many similarities with HIV-1: it goes through the same phases, and it results in the same indicator diseases. But it also has some important differences.
HIV-2 may not show up on a standard diagnostic blood test, or in the same monitoring tests, so it is more difficult to identify early, and it is more difficult to track than HIV-1. It also doesn’t respond to medications the way HIV-1 does. Of course, this makes treating it more challenging.
HIV-2 has a different progressive pattern: this virus appears to be less severe, and it has a longer Phase 3 (the asymptomatic phase), even without treatment. In this way, it is less threatening than HIV-1. However, HIV-2 carries a different kind of threat: it appears to become increasingly contagious over time, which is not true of HIV-1.
It is possible to be co-infected with HIV-1 and HIV-2, but it doesn’t seem to happen often, and some evidence suggests that in these cases, HIV-1 becomes the dominant infection, and the outcomes are about the same as other more typical HIV infections.
HIV-1 now has lots of genetically distinct subtypes, labeled HIV-1A through HIV-1K. These subtypes are all fairly responsive to antiretroviral therapy, but not all diagnostic tests are sensitive for all the subtypes. Further, it is possible to be co-infected with multiple subtypes.
These revelations are most relevant to the people who live with these infections and those who treat these infections, but as health-care supporters, it is important and helpful for massage therapists to be aware of some of these discoveries.
Myth
“HIV is Easy to Catch”
I remember in the early days of learning about HIV, I saw a demonstrator in an airport. He was carrying a sign with a big cartoon of a mosquito on it, dripping blood from its proboscis. The caption said, “Mosquitoes Don’t Wear Condoms.” His goal was to make people fearful of catching HIV from insect vectors. And for me, until I learned differently, it worked.
But here’s what we know, and decades of studying these viruses has strengthened these findings: HIV is only transmissible through direct, internal contact with an infected intimate fluid. That means blood, semen, breast milk, and vaginal secretions. Unlike some viruses that are sturdy in the environment, HIV is relatively delicate, and it disintegrates quickly when it is outside a host. This means that HIV cannot be spread through indirect contact with a light switch, or a doorknob, or any other non-skin-breaking surface.
HIV is not concentrated enough to be spread by way of sweat, tears, or saliva. It can’t be shared by using swimming pools or hot tubs. It isn’t airborne like cold or flu viruses, and animal vectors like mosquitoes or ticks cannot transmit it. Outside of contaminated blood, blood products, or transplanted organs; maternal transmission; unprotected sexual activity; or using contaminated needles or other skin-piercing equipment, it is practically impossible for HIV to move from one person to another.
With this in mind, take a moment to think about your massage environment. Do you have any risk factors that might allow anyone to have direct contact with contaminated intimate fluids? You shouldn’t. That means the risk of HIV moving from one person to another in your office is essentially zero.
Myth
“HIV Medications are worse than the virus”
Myths about HIV medications bring up a multitude of questions. One medication myth that, I confess, I fully believed until I started researching this article, is that antiretroviral therapy (ART) medications are highly toxic, and they inevitably lead to many dangerous and threatening side effects. Some have argued over the years that the medications were worse than the virus. There was a time, very early in our attempts to treat this condition, when that wasn’t all wrong: the medications that were meant to prolong the asymptomatic phase were given in much higher doses, and had much more severe complications and side effects than we see now.
Today’s HIV treatment protocol looks different. The strategies are essentially the same: we cannot chase the virus out of our latent immune system cells, but when the virus is active, we can interfere with how it makes copies of itself. We do this by using enzyme inhibitors in various combinations, and these medications prevent or slow down viral replication.
In the early days of treatment, this meant many drugs each day, on a strict schedule, with a high risk of serious side effects that included potentially crippling peripheral neuropathy, fat lipodystrophy (fat cells decrease in some areas, and enlarge in others), a risk of liver damage, pancreatic damage, and much more.
These risks still exist, and some people have serious problems—but it’s not nearly as extreme as it was 20 years ago. Today, many people who are HIV positive manage their infection with a single daily pill that may combine multiple types of enzyme inhibitors. We have developed a wide array of pill combinations to try to manage the different subtypes of HIV-1, so most people who have access to medication have the amazing prospect of being able to treat HIV—with a combination of medications, healthy diet, appropriate exercise, and good stress management—for a normal, or nearly-normal life span.
This is not meant to suggest that dangerous or unpleasant side effects are a thing of the past; they aren’t. But they are much more manageable than they used to be, and people who are struggling with their medications’ side effects are well-advised to consult with their doctors to see if a different strategy might be better for them.
Further advances in medications for HIV and AIDS have led to two other developments that are relatively new: PEP and PrEP.
PEP stands for post-exposure prophylaxis. This is a drug protocol for a person who has engaged in a high-risk behavior (unprotected sex or the use of nonsterile skin-piercing equipment), or for someone working in a hospital setting or other circumstance where they might be exposed to contaminated blood. If that person starts PEP within 72 hours of exposure to HIV, and if they use the medication without fail for four weeks, their chance of contracting HIV is close to zero.
PrEP stands for pre-exposure prophylaxis. This is a strategy developed for people who are not HIV positive, but who may have sex with people who are. In this situation, the person who has no infection can take a low daily dose of medication that makes the risk of contracting the infection very low. Doctors still promote the use of condoms along with PrEP to be even more confident about limiting the spread of the infection. One concern about PrEP is that inconsistent use may lead to someone becoming infected, and then this virus would be exposed to a low-dose medication that could lead to drug resistance. This risk is being followed carefully: to date, just a few cases of drug-resistant HIV infection have been reported among PrEP users in the United States.
Myth
“It is Legal, Ethical, and Necessary to Ask a Client About Their HIV Status”
Federal laws about the privacy of medical information have clear guidelines about each person’s rights over their information, and it sets limits on who can look at, and receive, that information.
In some states, people who are HIV positive are required to report their status to their health-care providers, including doctors and dentists. This helps ensure that the medical records are accurate, and that any treatment protocols these providers use are compatible with their antiretroviral therapy.
However, in most states, massage therapists are not considered to be health-care providers. We don’t prescribe medications and we don’t work with blood or other intimate fluids. Therefore, clients who are HIV positive have no obligation to tell us about it. This might seem kind of scary—after all, how do we provide the best care if we don’t know our client’s condition? But here’s the thing: it’s not a necessary question.
When we use proper hygienic practices, we treat every client as though it’s possible this person has some kind of infection, whether they know it or not. (And remember, about 13 percent of all HIV-positive people in the United States don’t know they are infected.)
We change our sheets, swab our surfaces, and wash our hands consistently, because every client who comes through our door could have some unwelcome passengers. If we are conscientious about this, our risk of exposure to HIV in legitimate massage settings is essentially zero. Indeed, our risk of exposure to hepatitis B or C is much greater than the risk of HIV infection, since these hepatitis viruses can be spread through casual and indirect contact. But as a culture, we seem to be much less concerned about potentially life-threatening liver infections than we are about HIV or AIDS.
And here’s the other thing: we can ask much more useful questions than, “Do you have HIV?”
Here are three:
• Do you have any chronic infections?
• What medications do you take?
• What side effects do these medications cause for you?
These questions do not force a distinction between HIV and other chronic infections, and the questions about medications and side effects will help us determine our best strategies for the client much more efficiently than getting to this information in any other way.
Myth
“MTs should Wear Gloves to Work with HIV-Positive Clients”
When a massage therapist consults the Internet about working with clients who are HIV positive, one of the frequently offered suggestions is that we should wear gloves when working with this population. First, why are you looking for this kind of guidance online? Do you not own a good pathology book? I can make a couple of suggestions (hint-hint). And second, gloves—really? Why? For what reason? What is the risk?
When we practice basic hygienic precautions, we create an environment where anything that one client touches is cleaned or replaced before another client touches it, and we do this for every client. This doesn’t only limit the spread of HIV, it also helps us limit the spread of other much more common and sturdy viruses like cold, flu, hepatitis, and herpes.
It is appropriate to wear gloves in some circumstances—like if we have open lesions on our hands that can’t be covered more locally, or if our client is so immune-compromised that it wouldn’t be safe for them to be exposed to our transient bacteria, or if our client is using some medication that is excreted through the skin. But none of these scenarios describe a typical person who is HIV positive.
If both parties in a massage therapy session—the therapist and the client—have skin that is healthy and intact, there is absolutely no reason to use gloves during a massage. If one person has compromised skin, then that area must be covered and avoided during the massage. How is this guideline different for clients who are HIV positive compared to others? That’s a trick question: it isn’t.
How Things Have Changed—For the Better!
It’s been a journey to watch how HIV went from being completely unknown, to being a huge public health scare with enormous social and political repercussions, to being a chronic, serious, but manageable disease. The stigma and sense of judgment against people with AIDS has also lessened, but it is certainly not gone entirely—the myths that prompted this article are living proof of that.
People who are HIV positive are advised to stay as healthy as possible—to exercise, eat carefully, and to seek out healthy, supportive relationships. And, if everything goes well for them, they have a chance at a long and fruitful life. Obviously, this depends on access to good health care and the appropriate medications, which is not a given, since these meds can cost $20,000 or more per year.
Massage therapy won’t solve the problem of access to health care for HIV-positive patients, but we can be part of a supportive and nurturing network of caregivers. We are in a unique position to offer caring, educated, and nonjudgmental touch. Our work has been seen to reduce symptoms of depression and anxiety, to improve sleep and lessen fatigue, and to help reestablish a sense of self-efficacy or the sense of being able to cope with life’s stressors. When it comes to HIV and AIDS, our profession has a lot to bring to the table. I encourage us to pursue those good outcomes with great passion and even greater compassion.
A Timeline
1981: 121 US deaths
In the United States, we began to watch a new phenomenon. That year, the Centers for Disease Control and Prevention (CDC) published a report on five cases of an extremely rare type of pneumonia and other infections plaguing previously healthy young, gay men in Los Angeles. By the end of the year, the name GRID (for gay-related immune deficiency) was coined, and a story in the New York Times led to the idea of a “gay cancer.” There were 270 reported cases of this infection.
1982: 447 US deaths
The CDC first uses the term AIDS (acquired immunodeficiency syndrome) to describe the disease.
1983: 1,476 US deaths
The first AIDS outpatient clinic and the first dedicated AIDS hospital ward are founded and immediately filled with new patients. The CDC publishes the first occupational exposure precautions document, which clarifies that this infection cannot be spread through casual contact, food, water, air, or surfaces.
1984: 3,454 US deaths
The retrovirus is isolated—HTLV-III (human T-lymphotrophic virus).
1985: 6,854 US deaths
Widespread testing of blood products for the virus becomes protocol. Ryan White, a boy with hemophilia, contracts AIDS through a blood transfusion and is denied entrance to middle school. White goes on to become an inspiring spokesperson for people with this disease, until his death in 1990 at age 18. President Ronald Reagan first mentions the disease in public.
1986: 11,932 US deaths
The retrovirus found to cause this disease is renamed to human immunodeficiency virus, or HIV.
1987: 16,908 US deaths
The first panel of the AIDS Memorial Quilt is created; months later, 1,920 panels are displayed on the National Mall in Washington, D.C. The first effective medical treatment with azidothymidine (AZT), also called zidovudine, accompanies the promotion of the use of male condoms as a preventive measure. October marks the first AIDS Awareness Month, and the American Medical Association (AMA) says it is an ethical obligation for doctors to treat people with HIV and AIDS. The US institutes a travel ban against HIV-positive persons entering the country, which stays in effect until President Barack Obama reverses it in 2010. According to the World Health Organization, 5–10 million people were living with HIV worldwide.
License to Discriminate?
Working on this article has raised a lot of fascinating peripheral questions. I was saddened to find stories of people being denied massage therapy because of their HIV status. This is not only unethical, it is also probably an illegal form of discrimination. But discrimination in our profession doesn’t stop there.
Some massage therapists put boundaries on the kinds of clients they are willing to see. Some women only want to work with female clients, for instance. That doesn’t seem farfetched; it wasn’t long ago that some state laws expressly forbade massage therapy to be offered by women for men, or vice versa.
But it’s an interesting intellectual experiment to push this a little bit. For instance, last year I had a conversation with a newly licensed young man who told me he plans only to work with nonsmokers who are not overweight. Is that legal? Is it ethical? The message I took away was that I would not be welcome on his table—but then, I wouldn’t want to be under his hands anyway.
A couple of months ago, I saw a thread on Facebook from a massage therapist who said she makes a habit of charging more to work with people who are overweight; call it a fat-person surcharge. She seemed a little surprised that people had negative opinions about this policy. My thought was, she ought to charge more for working with people who are over 6 feet tall—they’re the ones who require extra steps.
Who else can we discriminate against? Is it ethical to refuse to work with LGBTQ clients? What about those who are not a match with our own racial preference? If we can legally say no to some people for reasons that are not relevant to giving a safe and appropriate massage, then can we say no to anyone without cause?
As a profession, we try to project an image of ourselves as compassionate, professional, nonjudgmental caregivers. But when we look closely, it’s clear this is not always accurate. I look forward to more conversation about this important topic.
Resources
AIDS.gov. “A Timeline of HIV/AIDS.” Accessed May 2017. www.aids.gov/hiv-aids-basics/hiv-aids-101/aids-timeline.
AIDS.gov. “Requirements and Benefits of Disclosing to Healthcare Providers.” Accessed May 2017. www.aids.gov/hiv-aids-basics/just-diagnosed-with-hiv-aids/talking-about-your-status/other-providers.
Avert. “History of HIV and AIDS Overview.” Accessed May 2017. www.avert.org/professionals/history-hiv-aids/overview.
Avert. “HIV Strains and Types.” Accessed May 2017. www.avert.org/professionals/hiv-science/types-strains.
Centers for Disease Control and Prevention. “HIV in the United States: At a Glance.” Accessed May 2017. www.cdc.gov/hiv/statistics/overview/ataglance.html.
Centers for Disease Control and Prevention. “HIV-Specific Criminal Laws.” Accessed May 2017. www.cdc.gov/hiv/policies/law/states/exposure.html.
Centers for Disease Control and Prevention. “Opportunistic Infections.” Accessed May 2017. www.cdc.gov/hiv/basics/livingwithhiv/opportunisticinfections.html.
de Silva, T. et al. “Dual Infection with HIV-1 and HIV-2: Double Trouble or Destructive Interference?” HIV Therapy 4, no. 3 (2010): 305–23. Accessed May 2017. www.medscape.com/viewarticle/723256.
NAM. Pebody, R. “Second Case Report of PrEP Failure Due to Drug-Resistant Virus.” Accessed May 2017. www.aidsmap.com/Second-case-report-of-PrEP-failure-due-to-drug-resistant-virus/page/3093327.
New York Times. “The AIDS Epidemic: 1981–1987.” Accessed May 2017. https://partners.nytimes.com/library/national/science/aids/timeline80-87.html.
US Department of Health & Human Services. “Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents/Considerations for Antiretroviral Use in Special Patient Populations.” Accessed May 2017. https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/24/hiv-2-infection.
WebMD. “Side Effects of HIV and AIDS Drugs.” Accessed May 2017. www.webmd.com/hiv-aids/aids-hiv-medication-side-effects#1.
Ruth Werner, BCTMB, is a former massage therapist, a writer, and an NCBTMB-approved provider of continuing education. She wrote A Massage Therapist’s Guide to Pathology (Lippincott Williams & Wilkins, 2016), now in its sixth edition, which is used in massage schools worldwide. Werner is available at www.ruthwerner.com.