Viral Load Does Not Equal Value

Ensuring health equity for all people living with HIV

First published on February 18, 2019 and written by Charles Stephens for Poz.com

In 2018, I was invited by writer, blogger and HIV advocate Mark S. King to co-facilitate a discussion at the United States Conference on AIDS related to Undetectable Equals Untransmittable (U=U). Titled “Are We Shaming Those Who Are Detectable?” the workshop examined the struggles and barriers around treatment and care for people living with HIV.

The session was an extraordinary learning experience. Questions raised during the session, and the ideas that we discussed, have inspired me to think through the current challenges and opportunities for ensuring health equity in our communities.

How to support and affirm people living with HIV who are not virally suppressed was one of the key issues that emerged. Viral suppression, or being undetectable, not only keeps people who are living with HIV healthy, but it also means they cannot transmit the virus sexually.

However, according to the Centers for Disease Control and Prevention (CDC), in 2015, an estimated 1.1 million U.S. adults and adolescents were living with HIV but only 51 percent of them had achieved viral suppression. Further CDC data showed that in 2014, about 471,500 African Americans were living with HIV but only 43 percent of them had a suppressed viral load.

Considering the profound advances in HIV treatment and medicine, many of us are left wondering why so many members of our community struggle with viral suppression. To contend with this issue and fight the epidemic, we must confront structural barriers and address stigma. What’s more, we must imagine new ways to provide community support beyond offering only clinical solutions.

Not Just Pills, but Power

Public narratives—stories told and spread throughout a culture to describe, explain and provide meaning to experiences—are often rooted in myths and fictions perpetuated by the dominant culture to maintain social order. 

No matter how many times, for example, the racist and sexist caricature of the “welfare queen” is refuted, the notion that Black people take advantage of the “system” for personal gain persists.

These narratives rob low-income Black people of public empathy, absolve American institutions that sustain Black poverty of any responsibility and justify efforts and actions to reduce the social safety net that protects vulnerable Americans.  

A pervasive myth concerning the HIV epidemic is that individual behavior rather than structural inequality is the root cause of the disproportionate impact of HIV on the lives of members of vulnerable communities.

Leisha McKinley-Beach, founder of Leisha.org and a national HIV prevention consultant, echoes this point: “We tend to blame the person instead of looking at our infrastructure or systems that support these negative outcomes. If we continue to focus on HIV, we [won’t] end the epidemic. HIV is the outcome of cultural and social issues that affect the entire person.”

Institutions must also have the capacity and resources to serve and connect to communities in need, particularly communities already affected by structural violence, such as people of color, cisgender and transgender women, undocumented folks, the queer community and people experiencing economic distress. If HIV organizations are unable to provide quality services, then how can people living with HIV be expected to access health care? More specifically, how can individuals become undetectable if their AIDS service organization can’t help them get meds?

In an interview with TheBody.com, Martin Walker, director of HIV programs at Planned Parenthood of the Rocky Mountains, shares his journey: “I think it’s a bigger systematic problem, right? We’ve got all these grassroots organizations trying to do a lot of things, and they’re getting overrun by the number of people that they are trying to serve. And so things like making phone calls back from the voicemail, or checking the voicemail, or cleaning the voicemail out, that sort of gets lost in the shuffle when you are a small grassroots organization.”

Recognizing institutional and structural barriers does not mean completely ignoring the role of individual actions or personal agency. Walker acknowledges: “I want people to know that my being detectable is not just the system—it’s also me.” He knows that sometimes you have to be your own advocate. “Folks need to just keep calling, keep trying to access the system, be the squeaky wheel. Get back to that old ’80s-style advocacy that we used to do.” 

McKinley-Beach concurs: “Although I am not downplaying the accountability and responsibility of each individual, even in the midst of making decisions that could yield positive outcomes, people are still faced with these other barriers that exist and prevent such an event from occurring.” 

The late poet and essayist Essex Hemphill sums it up best in his epic poem “Vital Signs”: “Some of the T cells I am without are not here through my own fault. I didn’t lose all of them foolishly, and I didn’t lose all of them erotically. Some of the missing T cells were lost to racism, a well-known transmittable disease.”

Hemphill continues: “Some were lost to poverty because there was no money to do something about the plumbing before the pipes burst and the room flooded. Homophobia killed quite a few, but so did my rage and my pointed furies, so did the wars at home and the wars within, so did the drugs I took to remain calm, cool, collected.”

To address the structural barriers that impede treatment access, the HIV movement must employ an anti-oppression/racial justice lens. To this end, it is particularly critical to recognize how HIV affects Black communities.

McKinley-Beach suggests, “We don’t end HIV in America without ending it in Black America, and we don’t end it in Black America under the current trajectory.”

The late HIV advocate Mario Cooper, in his prophetic essay “Get Your Black Up!,” calls on the Black community to engage in direct-action organizing. Visionary movement leadership, rooted in an intersectional analysis, is the ground upon which our politics and policies must be built. To comprehend why people struggle to become virally suppressed, we must confront health care, but we must also confront race.

Weaponizing Culture

Though it may be tempting to reduce stigma to interpersonal interactions, doing so ignores the truth that stigma is as much systemic as it is singular. Stigma is a kind of psychological warfare that robs oppressed people of their human dignity; it also constitutes a stealth effort to control them. This is, in part, how stigma makes its way into laws. HIV criminalization is a stunning example of this process, and it illustrates how people with a detectable viral load are set up to be further stigmatized and shamed.

In a POZ blog post titled “Prevention vs. Prosecution: Creating a Viral Underclass,” Sero Project executive director and POZ founder Sean Strub illustrates how HIV stigma, reinforced by the power of the law, creates a viral underclass: “This viral underclass is a result of HIV criminalization, when people who have tested positive for HIV experience punishment, or a more extreme punishment, as well as a presumption of guilt or wrongdoing in a host of settings and for a host of practices that are, for those who have not tested positive for HIV, unremarkable.”

Strub continues: “When the government statutorily stigmatizes, it is a collective statement of the society. It says this group is ‘less than.’ It sets an example for communities, encouraging stigmatization and discrimination. And it is wrong.” 

In the health care narrative writ large—played out in service delivery, blogs, forums, workshops, research and social media—being detectable can make folks the object of blame.

In other words, as Venita Ray, deputy director of Positive Women’s Network–USA, puts it: “Because HIV is a racial justice issue, we must not deny that inequities exist that increase the vulnerability of Black folks to acquiring HIV and prevents us from accessing culturally appropriate care. That means we have folks who are not able to achieve undetectability for a number of reasons. It is not their fault. We must not blame or shame folks for acquiring HIV or having a detectable viral load. We cannot and must not leave anybody behind.”

From Continuum of Care to Continuum of Justice 

The dominant framework for how we care for people living with HIV must be examined not only through a continuum of clinical care but also through a continuum of community care and justice. Who are we leaving out and how do we bring them in? How are we supporting our community members? Do we not have any obligation to ensure that our friends and loved ones are engaged in health and wellness in a way that’s comfortable for them?

Too often, we fail to show empathy and compassion for the marginalized among us. Rather than see the system and its institutions for what they are—the sources of our challenges—we view the marginalized as accountable for their own oppression. This lets institutions off the hook. Worse, it paints marginalized people as being responsible for the conditions forced on them by the dominant culture. 

Monte J. Wolfe, artistic director of arts, education and outreach organization Brave Soul Collective, says: “I think one of the most important things to consider when talking about those of us living with HIV, particularly people of color, is for us to be as compassionate as humanly possible, taking into consideration that none of us really truly knows what it’s like ‘on the other side of HIV’ until we’re faced with having to deal with the very intricate parts of such a complicated issue.”

Fighting Back

We must fight back with messaging. One of the most effective and historic counter-narratives to HIV stigma has been the U=U movement. U=U advances a message that successfully battles stigma and transforms the lives and experiences of people living with HIV.

Perhaps U=U could be a model for how we as a community can better support people living with HIV who have a detectable viral load. The proper messaging would let them know they, too, are worthy of celebration; they, too, are worthy of affirmation and should absolutely be loved, supported and valued. 

We must also fight back with organizing and activism. Much of HIV movement history is rooted in confrontation—with government, health care institutions, pharmaceutical companies and more. So if health care departments and AIDS service organizations continue to be hostile to vulnerable communities or put up barriers to care, then we must consider direct actions targeting them.

We need to make more funding available for community organization and political education in the HIV movement. Such investment by the philanthropic community must actively engage and partner with networks of people living with HIV, particularly those led by people of color, in order to guide programmatic approaches. As a movement, we must continue to advance an analysis that centers racial justice in our policy prioritization.

A discussion about the clinical experiences of marginalized communities—notably those whose HIV remains detectable—necessitates addressing trauma. Trauma-informed care practices could go a long way in making health care delivery more responsive to the various experiences and needs of people living with HIV and supporting them in remaining connected to care. We must demand that HIV clinicians be trained in trauma-informed care. 

We, as individuals, must also not forget the collective trauma endured by the survivors of our movement. We must remember those who came before us, know their stories and honor their memories with our efforts. Our movement’s history offers lessons we can integrate into our current efforts.

The immense challenges we confront cannot be overstated. Years and years of hard-won battles for rights and resources, which, even with our best efforts, never completely addressed all our needs, are being plundered by a conservative regime that has expressed a deep hostility toward those of us in the margins. The health of our communities is at stake.

Never have we—LGBTQ folks, people of color, poor and working-class people, all communities most affected by HIV—enjoyed the luxury of passive despair; we have always had to fight for everything. Now is not different. We need a movement that leaves no one behind, regardless of viral load. We must protect all our community members.


Biktarvy Continues to Suppress HIV Well in Long-Term Follow-Up

This held true even among those with resistance to nucleoside/nucleotide reverse transcriptase inhibitors.

This article is from Poz.com writer Benjamin Ryan

Gilead Sciences’ Biktarvy (bictegravir/emtricitabine/tenofovir alafenamide) boasts high rates of viral suppression even after two years of treatment and is also highly effective among those who start the regimen with resistance to the nucleoside/nucleotide reverse transcriptase inhibitor (NRTI) class of ARVs.

Biktarvy was approved in February 2018 in the US and is indicated for those starting their first HIV treatment regimen as well as those switching from a previous antiretroviral (ARV) regimen who have been virally suppressed for at least three months on that regimen. Those switching to Biktarvy should have no history of treatment failure and no known viral mutations that confer resistance to integrase inhbitors. (The bictegravir component of Biktarvy falls into that class of ARVs.)

Researchers presented a trio of studies at the 2019 Conference on Retroviruses and Opportunistic Infections in Seattle concerning Biktarvy’s long-term efficacy and its efficacy in the face of drug-resistant HIV.  

Studies 1844 and 1878 included people with HIV who were treated with Biktarvy for 96 weeks. Among the 570 people who switched from Triumeq (dolutegravir/abacavir/lamivudine) or a protease inhibitor–based regimen to Biktarvy, 155 (98 percent) were virally suppressed at the 96-week mark. Among the subset of 159 members of this group who started the study with drug-resistant virus, 155 (97 percent) had a fully suppressed virus after 96 weeks, including 42 of 44 (95 percent) who had the M184V/I resistance mutation, which is associated with resistance to the NRTIs lamivudine and emtricitabine, the latter of which is included in Biktarvy.

None of the participants developed resistance to the drugs included in Biktarvy during the study.

Study 4030, also presented at the conference, included 565 people with fully suppressed HIV who were evenly randomized to switch to Biktarvy from a regimen of Tivicay (dolutegravir) plus either Descovy (emtricitabine/tenofovir alafenamide) or Truvada (tenofovir disoproxil fumarate/emtricitabine). The study permitted enrollment to any participants who had virus resistant to NRTIs, non-nucleoside reverse transcriptase inhibitors or protease inhibitors. Those with resistance to integrase inhibitors were excluded.

A total of 138 (24 percent) of the participants had NRTI resistance at the study’s outset.

Of the 562 people who made any of the study’s follow-up visits, 557 (99 percent) had a fully suppressed viral load, as did 220 of 222 (99 percent) of those with any ARV resistance, including 79 of 81 (98 percent) of those with the M184V/I resistance mutation. No participant has developed new drug resistance so far in this ongoing trial.

Detectable HIV Despite Treatment? Clonal Expansion Could Be The Culprit

In a study of people with a low but detectable viral load despite adherence to treatment, infected cells were apparently cloning themselves.

This article comes from Poz.com and was originally posted on March 12, 2019 and was written by Benjamin Ryan

People who maintain a low but detectable viral load despite adhering well to antiretroviral (ARV) treatment may in some cases have latently HIV-infected immune cells that clone themselves.

A latently infected immune cell is not replicating, meaning it stays under the radar of ARV treatment, which works only on cells that are actively churning out new virus.

Presenting their findings at the 2019 Conference on Retroviruses and Opportunistic Infections (CROI) in Seattle, researchers studied 10 people with HIV who had been on ARVs for a median of 10 years and had a median viral load of 97.5, with viral loads ranging between 40 and 356.

Generally, an individual viral load is considered undetectable if it is below 50, although the major studies that have supported the consensus that fully suppressing HIV prevents transmission used 200 or 400 as the viral load cutoff for undetectability. That said, some researchers have hypothesized that even viral loads as high as 1,000 or 1,500 might not be associated with a significant risk of transmission.

The researchers conducted genetic analyses of peripheral blood mononuclear cells drawn from the participants, including the sequencing of HIV RNA in the plasma and of HIV DNA integrated into cells’ genomes. (HIV carries its genetic material in the form of single-stranded RNA and then transcribes it into double-stranded DNA when infecting a cell.) They also stimulated cells to prompt the production of new HIV particles.

One participant was eliminated from the analysis because of evidence that the virus was evolving and accumulating mutations associated with resistance to ARVs. As for the remaining nine study members, the genetics of their HIV RNA neither changed over time nor had resistance mutations. The genetic sequences of the HIV RNA of six of these individuals matched those seen in HIV DNA incorporated into cellular genomes, suggesting clonal expansion of infected cells.

This presumption was further supported by the finding that HIV DNA found in an array of cells from each individual was integrated into similar sites in the cells’ genomes.

The study authors suggest that clinicians consider that clonal expansion, which can be identified through genetic sequencing, may be the cause an a detectable viral load in an individual who is  adhering well to an ARV regimen. Consequently, switching to a different HIV treatment regimen may not lead to full suppression of the virus.

More research is needed to flesh out the mechanisms by which HIV-infected cells clone themselves.

TAF as Effective as TDF in Cisgender Women, With Fewer Side Effects

Another important article From TheBodyPRO
By Martha Kempner

Initial data gathered from seven separate studies found tenofovir alafenamide (TAF) is just as effective as tenofovir disoproxil fumarate (Viread, TDF), with fewer side effects to the kidneys and bones, when used in cisgender women. These results, presented this week at the Conference on Retroviruses and Opportunistic Infections (CROI 2019) in Seattle, are similar to those found in cisgender men.

TDF was approved for use in patients with HIV in 2001 and for use in those with hepatitis B in 2008. The drug was highly successful and became a staple of most HIV treatment regimens, but was known to cause kidney toxicity and loss of bone density in some patients. In 2015, the Food and Drug Administration (FDA) approved the tenofovir prodrug TAF, which can be effective in smaller quantities relative to the original.

TAF is now included in a number of commonly used antiretroviral combination pills, most notably bictegravir/emtricitabine/TAF (Biktarvy) and emtricitabine/TAF (Descovy), which are among the list of first-line drugs currently recommended in U.S. first-line HIV treatment guidelines. For the most part, research has shown that TAF is equally effective as TDF with fewer negative side effects. But, as researcher Melanie Thompson, M.D., with AIDS Research Consortium of Atlanta pointed out in her presentation, the majority of participants in these studies were men.Advertisement

Though women make up 52% of adults living with HIV worldwide, they are often underrepresented in clinical trials, and health care providers are forced to assume that women will have the same results as men. For this analysis, an all-women team of researchers looked at seven studies that included a total of 779 cisgender women. Two of the studies (representing 260 of the women) were of individuals who were treatment-naive. The other five studies (representing 519 women) were conducted among virally suppressed individuals who were switching from a TDF regimen to TAF.

The data show that the two tenofovir treatments have similar efficacy rates. At 96 weeks, the FDA snapshot showed 86% viral suppression for women on TAF and 85% for those on TDF. This is close to what research has found in men — 87% viral suppression on TAF and 85% on TDF.

The reporting of adverse effects was also similar among women taking TDF and TAF. The most common side effects for treatment-naive women on both drugs included nausea, swelling of the throat and nasal passages, headache, upper respiratory infection, diarrhea, joint swelling and pain, dizziness, and back pain. Again, this was similar to the common side effects found in men on both medications.

The differences between the two drugs were most evident when it came to kidney toxicity. The analysis looked at two biomarkers that could indicate kidney injury and found that both were lower in women taking TAF than in those on TDF. Moreover, no women on TAF developed proximal renal tubular dysfunction, which is known to happen on TDF. The researchers referred to the lower adverse renal effects as a “highly treatment significant difference” between the two drugs.

The researchers also looked at adverse effects related to bone density. Women who started treatment with TAF had less bone mineral density decline than those who started on TDF. And, women who switched from TDF to TAF had improvements in bone mineral density. These were similar to the results found in men.

The analysis of the pooled data suggests that women have similar experiences with tenofovir to those of men. The researchers conclude that starting therapy with TAF or switching to TAF has significant safety advantages for women, while offering the same amount of viral suppression as treatment with TDF. Melanie Thompson ended her presentation by saying that “the other finding from this analysis is that it is both feasible and awesome to work with an all-female research team.”

Martha Kempner is a freelance writer, consultant, and sexual health expert.

National Women Living with HIV Day

Women and HIV

Originally from The Well Project and also featured on Thebody.com this is a great summary of that state of play for women with HIV around the world.

Table of Contents

A Look at the Numbers

More than 35 years have passed since the first diagnosis of AIDS (Acquired Immune Deficiency Syndrome) in the US. While there were a handful of women among the first cases, AIDS was thought to mostly affect gay men. However, as the years passed, women have emerged as another group hard hit by the HIV/AIDS epidemic. Globally, women living with HIV account for half of all people living with HIV, and in many countries, women living with HIV outnumber men living with HIV. Across the globe, transgender women (transwomen) are affected by HIV to a much greater degree than other groups. The proportion of transwomen living with HIV is estimated to be 49 times higher than the proportion of people living with HIV in the general adult population.

In the US

In 2016, almost one in five new HIV diagnosis in the US were among women. African-American women are especially affected. African-American adolescent and adult women made up only 13 percent of the US female population and accounted for more than six of every ten new HIV cases among women in 2016. Latinas made up 17 percent of the US female population and accounted for 16 percent of all new HIV cases among women. For African-American women, the rate of HIV diagnosis was 16 times that of white women in the US. For Latinas, it was more than three times that of white women.Advertisement

Though not often talked about, American Indian/Alaskan Native communities experience the third-highest HIV rate of any racial group in the US. And while Asian/Pacific Islander communities may not be as heavily impacted by HIV, cultural factors may leave women in these communities vulnerable to acquiring HIV or make it harder for them to connect to HIV care. For more information on these factors, see our fact sheet on HIV among US women of different races or ethnicities.

Between 2011 and 2015, the number of new HIV diagnoses among all women dropped 16 percent. Although African-American women and Latinas continue to be disproportionately affected by the epidemic, new HIV diagnoses have declined among women of color, as well.

HIV affects both younger and older women. In fact, the rate of HIV diagnoses in older women has been rising recently; in 2013, women aged 45 and older accounted for 37 percent of new HIV diagnoses – more than twice the proportion of women 13 to 24 years old (14 percent).

Globally

The World Health Organization (WHO) estimates that almost 18 million adults living with HIV in 2014 were women. Although women account for approximately half of all people living with HIV worldwide, the percentage of women who are living with HIV varies widely among countries. Estimates suggest that one in three people living with HIV in the United Kingdom are women; almost four out of ten people living with HIV in India are women; and almost six in ten people living with HIV in sub-Saharan Africa are women. The Joint United Nations Programme on HIV/AIDS (UNAIDS) reports that only 21 percent of teen girls (ages 15 to 19) worldwide know enough about HIV to help them stay HIV-negative.

Transgender women: Across the globe, transwomen are affected by HIV to a much greater degree than other groups. It is estimated that the proportion of transwomen living with HIV is 49 times higher than in the general adult population. This is true whether transwomen are living in low-, middle-, or high-resource countries. Worldwide, 19 out of 100 transwomen in a given population will be living with HIV. For more information, see our fact sheet on Transwomen Living with HIV.

Older women: The number of older women living with HIV has been rising, not only because the rate of older women who have newly acquired HIV has increased, but because more women living with HIV are living longer, healthier lives and are aging with HIV. Older women deal with two stigmas – that of living with HIV, a disease spread through sexual contact or drug use, and that of being older. As a result, many older women are first diagnosed with HIV at a later stage of infection, when their immune systems are quite weakened.

Transmission

Heterosexual sex (sex between a male and female) is the most common way of getting HIV (or mode of transmission) among women in the US. During heterosexual sex, HIV is passed almost twice as easily from men to women as from women to men. More than eight out of every ten women living with HIV in the US get the virus through sex with a man living with HIV. Heterosexual sex is also the main source of HIV transmission for women in many other countries in Africa, South America, and Western Europe.

Sharing HIV-contaminated syringes for injecting drugs is another common mode of transmission.

Is HIV Different for Men and Women?

Until recently, little research had been done on women and HIV. While many questions remain unanswered, available information shows that HIV affects men and women differently in some ways:

  • When women are first diagnosed, they tend to have lower viral loads (amount of HIV in the blood) compared to men who are newly diagnosed
  • Women generally have lower CD4 cell counts than men with similar viral loads
  • Women are most often diagnosed when pregnant, considering becoming pregnant, or hospitalized with acute (initial) illness
  • Women are more likely than men to develop bacterial pneumonia
  • Women have higher rates of herpes infection than men
  • Women get thrush (a yeast infection) in their throats more often than men
  • Men are eight times more likely than women to develop Kaposi’s sarcoma or KS (a cancer-like disease caused by a herpes virus)

Women tend to be diagnosed with HIV later in their disease than men and fewer women than men are getting HIV treatment. Women may delay getting medical care and treatment and choose not to disclose their HIV status for several reasons, including:

  • Limited access to health care due to lack of insurance and/or transportation
  • Unstable housing
  • Fear of violence in the home (domestic violence)
  • Other responsibilities, such as child care or caring for a sick family member
  • The stigma associated with HIV
  • Problems with substance abuse or addiction
  • Depression
  • Lack of financial resources and/or social support
  • Mistrust of health care providers and/or the medical system
  • Taking care of everyone but themselves and not putting themselves first

Numerous studies have shown that, if a person living with HIV is taking HIV drugs and their viral load has reached undetectable levels (not enough HIV in their bloodstream for a test to measure), that person cannot transmit HIV to a sexual partner who is HIV-negative. This is true for men as well as women, but there is still more research needed into how this exciting development affects women in particular – especially when it comes to breastfeeding children, or the often unfair power dynamics women experience in their relationships. For more information, please see our fact sheet Undetectable Equals Untransmittable: Building Hope and Ending HIV Stigma.

Treatment in Women Living with HIV: Effectiveness, Side Effects, and Drug Interactions

HIV treatment studies (clinical trials) have traditionally included very few of women. As a result, most information on the effectiveness and safety of HIV drugs comes from research done in men. This under-representation of women in studies is slowly beginning to change. For more information on how The Well Project is working to improve research for women living with HIV, please visit our page on the Women’s Research Initiative on HIV/AIDS.

Existing research has found little difference in the effectiveness of HIV treatment for women and men. Women living with HIV who begin treatment as recommended to do as well as men living with HIV. Although treatment seems to work as well in women as in men, the side effects may differ:

  • Rashes: Women living with HIV are more likely than men to experience skin rashes from HIV drugs.
  • Liver problems: Women are more likely to experience liver problems as a side effect of certain HIV drugs. In fact, women with a CD4 count above 250 are warned against starting a drug combination with Viramune (nevirapine) because of the risk of dangerous liver problems.
  • Body shape changes: Some studies have found that women living with HIV experience different types of body shape changes than men. Women may experience more fat gain in their breasts and waists.
  • Weak bones: It is known that women in general are at increased risk of developing osteoporosis (weak bones) after menopause, but studies have also shown that living with HIV increases a person’s risk of weaker bones. This means both men and women living with HIV are at higher risk of osteoporosis. However, the risk for bone weakness in women living with HIV is three times higher than it is for men living with HIV.

Differences in side effects between men and women may be due to interactions between HIV treatment and female hormones. They may also be the result of women’s smaller physical size. Standard doses of drugs are usually based on research in men.

Women living with HIV do need to be careful about drug interactions. Certain HIV drugs can affect the levels of other drugs in the body. For example, several HIV drugs can affect the levels of birth control pills and change how effective those pills are at preventing pregnancy.

It is important for women living with HIV to be treated by health care providers who have experience in treating women with HIV. Tell your health care provider about all your medical conditions and any medications you are taking. If you experience side effects from your HIV drugs, be sure to ask your health care provider for help.

Gynecological Issues in Women Living with HIV

Certain gynecological (GYN) conditions are more common, more serious, and/or more difficult to treat in women living with HIV than in HIV-negative women:

Although little conclusive research is available on HIV and menstruation (periods), many women living with HIV report abnormal menstrual periods. Some bleed much more than usual while others stop menstruating altogether.

Human papillomavirus (HPV) is a sexually transmitted infection that causes 99 percent of cervical cancer and can also cause genital warts. Women living with HIV are more likely to be infected with HPV than HIV-negative women. Women living with HIV are also less likely to clear, or get rid of HPV, than HIV-negative women. Women living with HIV, especially those with advanced HIV disease (lower CD4 counts), are more likely to develop dysplasia (abnormal cervical cells) as a result of HPV.

Dysplasia means abnormal cells on the cervix (the opening of the womb). It is often more severe and difficult to treat in women living with HIV than in HIV-negative women. Untreated dysplasia can lead to cervical cancer, a life-threatening illness.

It is important to find HPV early and get treatment to prevent health problems. Regular cervical screening tests are a good way to check for HPV. An abnormal cervical screening test can indicate inflammation, infection, dysplasia, or cancer in the cervix.

The US National Institutes of Health (NIH) guideline recommends that:

  • women living with HIV have a complete gynecological examination, including a cervical screening test (e.g., Pap test), when they are first diagnosed with HIV – within one year of starting to be sexually active, for women with other modes of transmission (such as acquiring HIV ar birth or through injection drug use)
  • if the initial test is normal, women living with HIV have another cervical screening test 12 months later
  • if three tests in a row are normal, then screening is recommended every three years
  • women with abnormal tests or dysplasia should receive further testing – the type of test will differ depending on the result.

For more information, see our fact sheet on Caring for a Woman’s Body: What Every Woman Should Know about the Care and Prevention of GYN Problems.

There are also three effective HPV vaccines. Since the introduction of the HPV vaccines in the US in 2006, the number of teen girls who have HPV has dropped by more than half. It is important for young people to get vaccinated before they have sex (before they have been exposed to HPV), since people who are already infected with HPV are not protected by the vaccines. There are many strains of HPV, however, so even women with one strain of HPV will benefit from the vaccine, since they will be protected against other strains. The vaccine was found to be safe and effective in women living with HIV. For more information, see our fact sheet on HPV.

Pregnancy and HIV

With the advances in HIV care and treatment, many women are living longer, healthier lives with HIV. As they think about the future, some of these women are deciding to have the babies they always wanted. Women living with HIV who want to become pregnant should discuss their plans with a health care provider who is very experienced in treating women with HIV. For more information, see our fact sheet on Getting Pregnant.

The good news is that advances in HIV treatment have also greatly reduced the chances that a mother will pass HIV on to her child (mother-to-child transmission). If the mother takes appropriate medical precautions, the rate of transmission can be reduced to fewer than one in 100 births. In addition, studies in the US have shown that being pregnant will not make HIV progress faster in the mother. For more information, see our fact sheet on Pregnancy and HIV.

In Conclusion

The number of women living with HIV is growing. It is important that you get tested regularly and do your best to be aware of your risk for HIV. In many countries, including the US, testing for HIV is part of routine health screening and preventive care.

If you test negative, you can take steps to stay that way. If you test positive, you can take steps to stay healthy and prevent passing the virus on to others, including during pregnancy. And while there is no cure yet, many women are living longer and stronger lives with HIV thanks to effective care and treatment.

More research is needed to determine how HIV progresses in women and how HIV drugs affect women’s bodies. However, it does seem that HIV drugs benefit women as much as men. By taking advantage of good health care and treatment as soon as you can, you greatly increase your chances of living a longer and healthier life for you and your loved ones.

What You Need to Know About the Second Person Likely Cured of HIV

With all the media, social media and conversations about this story this artivle By Kenyon Farrow From TheBodyPRO puts everything into perspective and allows us all to understand the implications of this.

March 6, 2019

The headlines went viral in a way most HIV news does not: a second man potentially cured of HIV infection, using a similar process to the one employed over a decade ago in Timothy Brown, the only person to be officially cured. This second man, called the “London patient,” was living with HIV and Hodgkin’s lymphoma; he received a stem cell transplant that so far has put his HIV into remission for the past 18 months.

The research on this case was set to be presented at the 2019 Conference on Retroviruses and Opportunistic Infections (CROI) on March 5, while the full study of the case, published by Nature, was embargoed until that date. But the news was published ahead of the embargo and sent reporters scrambling to get the story out — whether accurately or not.

I was able to speak to Richard Jefferys, the Basic Science, Vaccines, and Cure Project Director of Treatment Action Group, about the significance of the second person seemingly cured of HIV, what both community members and journalists should know about this study, and how HIV cure research stories in the mainstream press can create false hope for people living with HIV.

Kenyon Farrow: The story has now gone viral, and although you’re not involved with the study as a researcher, I know you can explain what happened that has led to the breaking story that a second person seems to have been cured of HIV.Advertisement

Richard Jefferys: I think it’s hopeful news. I think they were fortunate in that it was actually just a coincidence that the match they found for the stem cell transplant was sent from someone with the mutation of the CCR5, so it’s kind of good fortune. But similar to Timothy Brown [the first patient cured], it was related to the individual being in a really serious situation with a refractory Hodgkin’s lymphoma that they’d had a bunch of treatments for that hadn’t worked. So the reason that they needed a stem cell transplant was because they were experiencing a life-threatening cancer. The outcome in terms of the cancer treatment — it worked, and they’re in remission for that.

Then it was some period after quite a long — I think over a year after the successful stem cell transplant and the remission of the cancer — that they got permission to conduct antiretroviral therapy interruption, because the measures that they could do looking for HIV in the blood were all negative and stayed that way.

And then the interruption was done in September 2017. And since then, 18 months, they’ve been off antiretroviral therapy with no sign of any rebound. They’ve done a bunch of testing on the blood. In all the different tests they’ve done, there was one sort of glimmer in one assay of a signal for HIV DNA, and that may well be just a false positive. Timothy Brown had something similar.

So they’re hopeful that this is going to be a similar long-term situation. Timothy Brown is [HIV-free] now for 12 years, but they’re being cautious at the moment and using the term remission rather than saying the individual is cured.

And the other thing is that Timothy Brown is probably one of the most poked and prodded individuals in the history of HIV research. He’s given [a test] where they sort of take billions of cells from you. He’s done lumbar punctures, he’s done gut biopsies, he’s had lymph node biopsies. They’ve done all sorts of tissue sampling for HIV in Timothy that have been negative. So far, this new individual hasn’t had any tissue sampling. But still, the fact that there’s been no viral load rebound is the evidence that hopefully there’s no HIV lingering anywhere that’s actually replicating.

KF: What do you say to people who are just reading this study and don’t follow the latest science? What do you think is the sort of takeaway or what people should consider?

RJ: Since Timothy’s cure, there’s been a lot of work done to see whether it might be possible to do it again. So I think this is really solid justification for those collaborative efforts to provide these kinds of stem cell transplants to people with HIV that really need them for cancer. This is evidence that that work is really worthwhile.

I think unfortunately for people with HIV that don’t have life-threatening cancers that need stem cell transplants, this isn’t a cure that can be applied. You know, there’s been instances in the past where institutions when these kinds of stories get announced, get inundated with calls from people. I think sometimes we underestimate the amount of stigma that’s still out there and the kind of desperation it can drive for people to want to be cured. And it can make it hard to hear what all the caveats are with these kinds of stories. But the mortality associated with stem cell transplant is maybe 10% to 25% of people get a complication and just the transplantation kills them.

So it’s really still a risky procedure that’s only appropriate if someone is facing a life-threatening cancer. Unfortunately, what this news doesn’t mean is that there’s going to be a cure in the next year or two.

KF: What do you say to journalists right now? There are so many stories now, almost all of which were written before the science was even presented. What is your advice to journalists covering HIV cure science?

RJ: You just have to be very careful about how you present results. I think in the Internet era, where clicks on an article can drive revenue, it’s particularly dangerous, and there can be unfortunately a very strong incentive to go with headlines that hype results. We’ve had problems in the past with, I think the Daily Telegraph has been a pretty bad offender a couple of times. One time they went with a headline about how gene editing was going to cure HIV within three years. It took a lot of activism to actually get them to edit that headline, and the damage was kind of already done.

I think it’s just a case of advising journalists to be careful and ethical, to always seek input from independent scientists that haven’t been involved with whatever research they’re trying to write about, and to be aware that people with HIV aren’t some kind of “other,” they’re actually reading their articles. Sometimes you read pieces that seem to imagine that actually nobody with HIV is reading. So they’re sort of talked about in that “those people” kind of way.

Journalists should also know that the hopes of 35-plus million people [living with HIV globally] are riding on this research and they deserve accurate and careful reporting, and to try and be realistic about what’s going on.

Kenyon Farrow is the senior editor of TheBody.com and TheBodyPRO.com.

Sanjay Johnson HIV Criminalization Case Closes With 5-Year Probation Sentence

This important article is from Kenyon Farrow
at the TheBody.com and highlights how U=U can play an important role in such cases.

February 22, 2019

Sanjay Johnson, who was charged with nondisclosure of his HIV status to a former sexual partner, was given a surprise sentence of five years probation and a $750 fine finalized in Little Rock, Arkansas on Feb. 19. Johnson was initially facing a felony conviction with the possibility of 10 to 12 years in prison and a requirement that he register as a sex offender upon his release.

“Honestly, I’m grateful, but I still have a burden with probation and its restrictions and financial obligations,” said Johnson about the sentence.

Johnson’s defense lawyer, Cheryl K. Maples, said that the case largely rested on the fact that Johnson was documented as having an undetectable viral load and could not have transmitted the virus to the accuser. The prosecutor finally was convinced in the second hearing.Advertisement

“He finally heard me,” Maples said, speaking about Grayson Hinojosa, deputy prosecutor with Pulaski County, Arkansas. “He finally got that Sanjay could not have exposed this young man to HIV because he was undetectable.”

The statute that was employed in Johnson’s earlier no-contest plea is rarely used, according to Maples. It allows for people without any other criminal records to settle their case with a guilty or no-contest plea, accept at least one year’s probation and no more than a $3,500 fine. They will continue to have no further criminal record.

Interestingly, the law carves out a provision that bans defendants who have been charged with “exposing another person to the human immunodeficiency virus.” But with Johnson being virally suppressed, the exposure clause was moot.Maples sees an opportunity to help others like Johnson. She is preparing a case for the United States District Court in Western Arkansas to challenge the HIV criminalization law that initially ensnared him. “I believe the law [that criminalizes people with HIV] is unconstitutional,” she said.

Change is spreading nationally, slowly but surely, due to heavy advocacy work by community advocates, state groups, and national organizations including the Center for HIV Law and Policy, Lambda Legal, Prevention Access Campaign, and SERO Project. While Arkansas still has specific laws criminalizing people living with HIV for nondisclosure, there are several states that have reformed their laws in the past few years, most recently California, Colorado, and North Carolina.

As for Johnson, he says that although he is happy about the final ruling, the case has taken a toll.

“I’m still looking for a better stable job,” he said. “I was terminated from my job at the hospital [where I was employed] for over three years. My work performance went down since I’ve been going through this ordeal, and it affected me mentally and led to my dismissal. I didn’t work for three months, but was applying and having interviews, and started working on Jan. 7.”

As for the future, Johnson said that despite the hardships, this experience has encouraged him to want to help others in similar scenarios.

“I would like be in a position where I could work while getting paid advocating and educating on HIV and criminalization, and maybe write a book about my experiences,” he said. “I still will continue to advance in my woodcarving and photography and other creative passions. I just want to be a genuine example to those who are like me that you can overcome adversity.”

Kenyon Farrow is the senior editor of TheBody.com and TheBodyPRO.com.

Nicotine metabolised at a faster rate among HIV-positive smokers – implications for quitting smoking

This article is reprinted from www.aidsmap.com by Michael Carter and was published on  18 February 2019

HIV-positive smokers metabolise nicotine at a significantly higher rate than HIV-negative individuals, investigators from the United States report in the online edition of AIDS. The finding could explain why people with HIV have more difficulty quitting smoking than their HIV-negative peers. A second study involving the same HIV-positive smokers and published in the Journal of Acquired Immune Deficiency Syndromes showed that a higher nicotine metabolism ratio (NMR) was associated with symptoms of anxiety and treatment with efavirenz.

The researchers say their findings have important implications for the use of smoking cessation medication by individuals with HIV, and that more intensive therapy with varenicline (Chantix and Champix, an oral prescription medication), rather than nicotine replacement patches, is warranted.

“The mean NMR of this sample resembles levels reported among those with opioid dependence,” comment the authors. “Although the nature of the relationship between NMR and HIV is uncertain, these results suggest that the nicotine patch would have limited therapeutic benefit for most smokers with HIV, which has been reported, and that varenicline would be more beneficial.”

People with HIV are more likely to smoke and have more difficulty quitting than individuals in the general population. Smoking-related diseases are now a leading cause of serious illness and death among people with HIV and supporting smoking cessation should be part of routine HIV care.

The rate at which the body metabolises nicotine could explain why people with HIV are more likely to become smokers and find it harder to stop. Nicotine is metabolised by the body using the CYP2A6 liver enzyme. Research has shown that people with reduced CYP2A6 function (slow nicotine metabolisers) smoke fewer cigarettes, are less dependent on nicotine and are more likely to succeed in quitting smoking. NMR is a widely used measure of CYP2A6 function.

Investigators from the University of Pittsburgh hypothesised that smoking behaviours in people with HIV were influenced by NMR. They therefore designed an observational study comparing NMR between 131 HIV-positive smokers and 199 closely matched HIV-negative smokers.

Data were collected on factors known to impact on NMR, including sex, race, gender and body mass index (BMI).

Most of the participants were male (70-74%), African American (72-79%) and were living on an annual income below $35,000.

Almost all the HIV-positive participants were taking antiretroviral therapy (ART). Eighty per cent had an undetectable viral load and the average CD4 cell count was 714 cells/mm3.

The individuals with HIV smoked significantly fewer cigarettes daily than the matched population (13 vs 15, p = 0.003). Despite this, mean NMR was significantly higher in the people with HIV than the HIV-negative individuals (0.47 vs 0.39, p < 0.001).

Participants were divided into four groups according to NMR speed: people living with HIV were twice as likely as HIV-negative individuals to be placed in the fourth quartile, the fastest metabolisers (35% vs 17%).

“These findings suggest that HIV-infected smokers metabolize nicotine faster than HIV-uninfected smokers, even after controlling for relevant demographic and behavioral factors,” write the authors. “Understanding the mechanisms that contribute to faster nicotine metabolism among PLWH [people living with HIV] is necessary to understand tobacco’s role in undermining clinical outcomes in HIV, and identifying novel therapeutic interventions.”

The second study examined whether there were any specific characteristics associated with a higher NMR in the 131 HIV-positive people.

The investigators collected demographic data, information on CD4 cell count and viral load, CD4 cell count, ART type and adherence and symptoms of anxiety and depression. Breath carbon monoxide was also evaluated.

The initial analysis showed that race, symptoms of anxiety and depression, greater smoking intensity, breath carbon monoxide and therapy with efavirenz were all associated with higher NMR values.

After taking into account known potential confounders, a higher NMR remained associated with smoking more cigarettes per day (p = 0.050), higher levels of symptoms of anxiety (p = 0.054), and therapy with efavirenz (p = 0.003). Treatment with efavirenz accounted for 5% of the variance in NMR.

“Taking efavirenz was associated with higher NMR, rather than lower NMR as expected for a drug interaction (efavirenz would be predicted to inhibit CYP2A6), which needs to be understood further,” comment the authors. “This suggests that efavirenz therapy should be considered when addressing tobacco use among PLWH.”

Reference

Ashare RL et al. Differences in the rate of nicotine metabolism among smokers with and without HIV. AIDS, online edition, DOI: 10.1097/QAD.0000000000002127, 2019

Schnoll RA et al. Rate of nicotine metabolism and tobacco use among persons with HIV: implications for treatment and research. J Acquir Immune Defic Syndr, 80: e36-40, 2019.

Smoking Pot Related to Higher Lung Disease Risk in HIV-Positive Men

Researchers compared lung disease diagnoses among groups of HIV-positive and HIV-negative men who reported marijuana use.

This article points to some interesting research and was written by Benjamin Ryan from Poz.com   


Among men who have sex with men (MSM) living with HIV, smoking marijuana is associated with a higher risk of both infectious and noninfectious lung diseases.

Publishing their findings in EClinicalMedicine, researchers studied 1996 to 2014 data on men from the Multicenter AIDS Cohort Study (MACS), a long-term observational cohort of HIV-positive and HIV-negative MSM. Participants eligible for this particular prospective cohort study were 30 years old or older and had provided self-reported data on marijuana and tobacco smoking during biannual study visits.

The study included 1,352 HIV-positive men who were matched with the same number of HIV-negative men according to race and the age at which they entered the study. Between them, the cohort members made 53,794 study visits and were followed for a median of 10.5 years.

Twenty-seven percent of the HIV-positive men and 18 percent of the HIV-negative men reported smoking marijuana daily or weekly during one or more years of follow-up, for use that lasted for a median of 4.0 and 4.5 years, respectively.

The cohort members received 1,630 diagnoses of lung diseases during follow-up. A total of 33.2 percent of the HIV-positive men and 21.5 percent of the HIV-negative men were diagnosed with infectious lung disease, and a respective 20.6 percent and 17.2 percent were diagnosed with noninfectious lung disease.

Among the men living with HIV, recent marijuana smoking was associated with a 43 percent higher risk of infectious lung disease and a 54 percent higher risk of noninfectious lung disease independent of tobacco smoking and other risk factors for lung disease. When HIV-positive men smoked both marijuana and tobacco, these risks were higher.

There was no association between recent marijuana smoking and lung disease risk among the HIV-negative men.

The study’s strength included its large sample size, the high number of lung diagnoses and the lenghty follow-up time.

“These findings could be used to reduce modifiable risks of lung disease in high-risk populations,” the study authors concluded.

To read the study, click here.

Lovin’ with HIV

It’s no secret that when it comes to sex, an HIV diagnosis has been known to throw a wrench in the works. But navigating this new landscape is possible—with the right information and support. Allison Carter talks sexual satisfaction with two HIV-positive women.

Margarite Sanchez, a self-described artist, activist and agriculturist who lives on Salt Spring Island, was in her mid-30s when she was diagnosed with HIV. She was newly married at the time, with a partner who was HIV negative. Today, at 60 years young, she is still in that relationship, and her partner is still HIV negative. He is also a loving and caring husband and father to their two children. Their life is good, Margarite tells me. And sex is a very important part of their relationship.

This is not to say that Margarite didn’t face challenges after being diagnosed. “I went through all those things women go through,” she says. “At first I felt like I was damaged goods. I told my husband to leave. I figured I would be alone for the rest of my life. I just didn’t think there would be much more of that.” Sex, she explains.

But her husband wouldn’t hear of it. “Why should I leave the best relationship of my life?” he said. Margarite goes on to reveal something that many women with HIV have experienced as a barrier to achieving a pleasurable and satisfying sex life: her huge fear of transmitting HIV.

A small but growing number of studies document such feelings and the impact of HIV on women’s sexuality and sexual well-being. A 2017 review of surveys involving 11,552 women living with HIV around the world found that after being diagnosed, it is common for women to experience reduced pleasure during sex. Fear of transmitting HIV to their partners, anxiety and depression, and broader societal stigma and discrimination are just some of the factors that can put a damper on the deed. Never feeling safe enough, it seems, is a common theme.

But times are changing, and so is Margarite. Science now shows that it is possible for people living with HIV who take their medication as prescribed and maintain an undetectable viral load to have condomless sex without risk of passing HIV. This reality is captured by the slogan U=U (undetectable=untransmittable). After 15 years of using condoms religiously with no viral breakthrough, Margarite and her husband decided, as a couple, to do without them. Margarite was also fully menopausal at that time and in a long-term, monogamous relationship, so she wasn’t worried about getting pregnant or getting other sexually transmitted infections.

“It was really nice, for once in our relationship, to have one less obstacle between us,” Margarite says. The problem wasn’t so much the physical barrier of the condom, but what it signified. “To have something lifted, instead of another concern added on top, felt really good.”

Now Margarite describes her sex life as more relaxed and spontaneous, free from her previous worries about passing HIV. This medical strategy of treatment as prevention, she points out, has de-medicalized her sexuality.

Valerie Nicholson is 62 years old and lives in the Downtown Eastside of Vancouver. She is an Indigenous woman and a proud grandmother. Like Margarite, Valerie describes the scientific discovery of U=U as liberating—not only when it comes to her ability to have close relationships with an HIV-negative partner but also for how she feels about herself as a sexual being. But the changes she went through to get to this point—the kind that happen internally and externally—didn’t happen overnight.

“When I was first diagnosed, I don’t think my sexuality changed at all,” Valerie says, “because I wasn’t really dealing with it.” She was in a relationship at the time, and it was in that relationship that she acquired HIV. She was also struggling with substance use. She describes her sex life back then as routine: “Do drugs, have sex, do drugs, have sex.” The drugs, she says, numbed any feelings she had about her diagnosis and about her sense of sexual well-being.

Valerie decided to stay in that relationship because she felt it was easy even though, she says, “it was an abusive relationship.” But the risks of having to disclose her HIV status to someone new, which could open up a whole host of different harms, felt greater to her at the time than the dangers of staying with her partner. “It’s kind of a weird feeling,” Valerie says, reflecting on the tensions she faced. And, unfortunately, it’s one that far too many women have to grapple with.

Of the 1,422 women who participated in the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), 80 percent reported having experienced some form of violence and 67 percent said they believe that most people with HIV are rejected when others learn of their status. Over 50 percent reported suffering from depression. These social factors—violence, stigma and depression—can increase stress levels and greatly affect women’s sexuality, reducing both sexual desire and arousal as well as increasing pain and anxiety with sex. On the flip side, this means that women’s sexual well-being can be improved if their social context is improved.

When I ask Valerie about her experiences with sex and sexuality today, she replies, with joyful laughter, “Well, that’s changed a lot.” For many years after leaving her abusive relationship, she immersed herself in her HIV research and advocacy work and became known and much loved for her activism and her teaching as an Elder. This work led her to re-evaluate what it could look like and how it could feel to be single, HIV positive and happy with her sex life. “I had my toys, of course,” Valerie says confidently, “because it was easier to have a toy than a man some days.”

Valerie has since started dating again and has enjoyed a few meaningful relationships, with both HIV-positive and HIV-negative men. Currently, she is rekindling a romance from her past. Whether it’s because of a new partner, a broader range of sexual activities or her reduced self-criticism and shame, she finds it much easier to climax during sex nowadays. She also attributes her newfound sexual freedom to U=U. And she’s not alone. Many women she has spoken to describe “getting a piece of their sexual life back.”

What’s clear in both Valerie and Margarite’s stories—and likely those of many other women—is that women are on a sexual journey. From coming of age to the golden years, dating to marriage to divorce, diagnosis to today, women’s experiences of love, sex and relationships are diverse and always evolving. There is not one path, but rather, many paths.

What advice do Margarite and Valerie have for other women who are newly diagnosed and struggling with their sexuality?

“It will get better,” Margarite says assuredly. “When you’re first diagnosed you go through all these feelings—you feel that no one is going to want you, that you’re never going to want to have sex again. But once you start to regain your confidence in living life, get your health straightened out and become stable on your medications, there’s absolutely no reason why you can’t live a complete and fulfilling life in every facet, including your sexuality.”

Valerie, reflecting on her journey, says: “You’re a woman first. HIV is just something that you’re living with. You could be living with a cold, cancer or the flu—it doesn’t matter. You’re a woman first. And we have to honour ourselves as women.”

In terms of supports, both women emphasize the importance of having a safe place to talk with other women about sex and sexual pleasure. “I really envy gay men,” Valerie says, “because they often talk more openly about sex.” This contrasts with traditional female roles in which women are taught to keep their experiences and issues related to sex a secret, behind closed doors. Such talk is necessary, Margarite and Valerie say, for women to know that they’re not alone and to chart the course of their own sexual fulfilment.

Allison Carter is an HIV-negative ally conducting sex-positive research with Margarite, Valerie and other women living with HIV in Canada. She is also working with them to create a new online resource dedicated to building conversation and community around sexuality and relationships for women and couples living with HIV: www.lifeandlovewithhiv.ca.

Photograph of Margarite Sanchez by Stasia Garraway; photograph of Valerie Nicholson by Kamil Bialous.

Brian Belovitch’s Journey Through HIV and His Full-Circle Transgender Experience

This inspiring interview is by JD David from The Body website and I hope you enjoy it. You can search online for Brian’s memoir if you are inspired to find out more about his incredible journey.

February 6, 2019

Everyone wants him to be in a certain category, says Brian Belovitch, which he finds really annoying. But if he had to pick one, reports the author of the new memoir Trans Figured: My Journey from Boy to Girl to Woman to Man, he would say that he’s a cisgender gay male of trans experience.

“And I say that because, you know, I did [live] as a trans woman, for about 15 years … in the ’70s and ’80s, those decades.”

I met Brian years ago — but not so far back that I knew his full story — when he and his husband Jim had a sweet country house in rural Pennsylvania that happened to be next door to my ex-partner’s ex-girlfriend’s place that we’d run off to for long weekends.Advertisement

I’d known Brian had lived as a woman, but it wasn’t until we had overlapping work shifts at the legendary Park Slope Food Coop a few months back that I learned he had published his story. I downloaded it on my phone on the way home and read it straight through.I didn’t know that Brian survived a deeply violent upbringing, came out as queer in high school and began his first transition in Rhode Island, and then moved to New York as an affirmed woman who gained prominence in the club scene as well as playing cisgender female theater roles.

The book opens during the time Brian hit bottom in his drug use, and I felt the peculiar feeling of fearing for someone who I knew had somehow made it through to a beautiful life.

In reality, as well as on the page, Brian is an enticing and unflinching storyteller. He realizes his life doesn’t fit the often-stigmatized but perhaps more acceptable binary narrative of transition to the so-called opposite gender.

But his lived reality affirms that there’s a wider range of possible genders and gender journeys. And, as not only a twice-transitioned person, but also an abuse survivor, a person in recovery, an early recipient of hepatitis C therapy, and a person living long-term with HIV, he realizes his story can be lifesaving to others.

I’m sitting with Brian in the cozy apartment he shares with Jim, a horticulturalist, in a classic pre-war elevator building on a now-gentrified block in Prospect Heights, Brooklyn. I’m here to find out more about his uncommon journey.

JD Davids: You have had a rather amazing, full, and at times very painful life. It was around the same time you began to consider transitioning back to male, your assigned gender at birth, when you found out that you’re living with HIV?

Brian Belovitch: Yes, it was at the beginning of the AIDS crisis, actually, when I had transitioned from transgender to now back to my male gender. I was diagnosed in ’87, and then I transitioned shortly after that in ’88.

It took a while, obviously. It’s not something you can just blink your eye and switch overnight, like some people might think. It’s very involved.

JD: In just a few chapters of your fascinating memoir, you talk about learning that you’re living with HIV in the era before effective treatment, just when you were coming into recovery. Then you go into the experiences you had in the bad old days of hard-to-take hepatitis C treatment, and you say there’s a whole other book there about this period.

BB: Oh, yeah, absolutely. You know, I’m trying to come up with the concept or the idea for my next book. And I think that it’s going to have a lot to do with, you know, the opposite side of transitioning, which is really transitioning and coming to terms with how I felt about returning to an identity that was, you know, in the past had been very painful and difficult. So, there’s a whole other aspect to that, that there wasn’t enough room in the book — I was limited to 270 pages.

JD: What was the relationship between your diagnosis of HIV in the early days, and your shifting sense of your own gender?

BB: I did write a little bit about that time in history. And there’s a difficult story in the book about when I received my diagnosis, from a doctor at Stuyvesant Polyclinic on the Lower East Side. I made the mistake of going alone, which … don’t ever do that, kids!

I went alone, and I walked in, and I didn’t even barely touch a chair. And the doctor said, “Oh, so your results are positive,” and I looked at him, like, really?

He’s like, “Well, what did you expect?” He said, “You’re a whore, you’re a prostitute, you’re a sex worker, trans woman, IV drug user,” it was like check, check, check down the list.

And it all felt like it was in slow motion. Like, I’m sitting there thinking, I was newly sober, maybe about six months, and didn’t have the wherewithal to, you know … my activist life didn’t flourish until later.

But, I didn’t know what to say. That had such an effect, a profound impact on me — the overt judgment in the medical profession. And I already knew what my gay brothers and sisters were going through with HIV and AIDS, and there was no treatment, no AZT, no nothing. And it was terrifying, really terrifying, the whole ordeal.

I was already struggling with the trans identity stuff in therapy, and in my early recovery, and so it was already in the forefront in my mind, and the freshness of the obstacles that I had lived so often in the ’70s and ’80s as a trans woman back then. It was like an open wound back then.

So, you know, I kind of thought, “Wow, if he’s treating me like this,” and I’d already had firsthand experiences from my friends, I thought, “Wow, I’m really in deep shit here.”

So I wouldn’t say it was the only reason why I decided to transition again, but it certainly was a part of it. I thought, “I’ll die for sure.” Oh, I went into survival mode. And so part of survival mode was feeling like [I needed to do what it took to] get care that you needed order to be able to make your way as a person with HIV.

Trish Gervais (Brian Belovitch) in 1981

To be a trans woman back then, in the ’80s, was even more difficult than it is now, obviously. We didn’t have the luxury of a lot of the lovely language that we have today, and the medical awareness, the health care awareness that we have dealing with trans patients today, we didn’t have any of that … it wasn’t very forefront in my consciousness for another six months or so — I still had to endure another six months of examination and reflection before I made that ultimate decision.

But that was definitely a turning point or a tipping point. I thought, “Wow, they’ll just leave me dying in the hallway here somewhere.”

Because they’re so afraid, they couldn’t wrap their heads around how to deal with someone of my gender, which I’d already experienced. So I’d already had that [experience of maginalization], but that particular episode was particularly upsetting.

JD: As you went through the first years of coping with your diagnosis, as well as adjusting to your gender decisions, what was that like? Was there a time where either or both gender and life with HIV just felt like, “Okay, I got it now?”

BB: You reminded me, JD, that once I did make that [gender] decision, the pushback that I got from the medical community was another hurdle. They were refusing to remove my [breast] implants for fear of lawsuit. I wrote about this in the book, when I went to some sort of volunteer medical plastic surgery clinic at a hospital, and I’m sitting in front of a bunch of students, and one of the professors started grilling me about my IV drug use, and my sex work. And, “Oh, you’re a sex worker, right?”

So now I want to try to find my truth or find some sense of stability or calm in my life, and now I’m being discriminated against because of that. I totally wasn’t prepared for that at all right. I was like, “Wow, this is really fun.”

JD: So when was it that you found this calm place? How did you find it?

BB: Well, luckily, I didn’t give up. And I eventually found a lovely gay surgeon who was completely sympathetic, lovely fellow, and he helped me with the top surgery, which was all I really needed to have at the time. He knew I was HIV positive, and that wasn’t an issue for him. So that was nice that I found that, but I guess the sense of calm didn’t come for a long time after that, because it takes a lot of effort to get people on board with where you are, what you’re presenting yourself as. It doesn’t just happen instantly, as I think some of us would like it to happen.

So, it was very long, gradual. I remember walking into the men’s locker room for the first time in 15, 20 years, and it was jaw-dropping for me. Yeah, penises swinging around!

JD Davids is a former senior editor and director of strategic communications at TheBody and TheBodyPRO. A longtime HIV/AIDS activist and communication strategist, he is a co-founder of Project TEACH at Philadelphia FIGHT, was a longtime member of ACT UP Philadelphia, and founded Community HIV/AIDS Mobilization Project (CHAMP) and the HIV Prevention Justice Alliance.

The forgotten: Living with HIV in war-ravaged Yemen

This article comes from Al Jazeera and highlights the plight that people in Yemen have to deal with daily.

Most Yemenis living with HIV/AIDS face stigma and discrimination, even from their own families.by Naseh Shaker & Faisal Edroos22 Jan 2019

The patients names have been changed to protect their identity.

Sanaa, Yemen – With each breath, the red rashes on Ahmad’s cheeks appeared to get brighter and brighter.

The eight-year-old had just made his way up the stairs of the al-Jumhurriya hospital in the Yemeni capital Sanaa, one of the few health centres in the war-ravaged country that still provides free medical treatment to people living with HIV.

As he took his seat in the waiting room next to his ailing father, the sound of static from an old analogue TV appeared to startle the tired young boy, further heightening his anxiety as he waited for doctors to call him in for his latest blood test.

Three years ago, Ahmad was healthy and playful, his father Zakariyya told Al Jazeera.

“When he became sick, we took him to the hospital where doctors carried out tests and told us he had problems with his immune system,” he said.

“They later told us it was HIV. 

“My wife and I also took the tests and we also tested positive.”

An acronym for the human immunodeficiency virus, HIV attacks important cells that help the body fight off infections, disease, and other viruses.

When the infection goes untreated, it causes AIDS. This typically causes fever, weight loss, recurrent diarrhoeal infections and other symptoms.

While both are seen as treatable, a cure has yet to be found.

‘I take a red pill every day’

Zakariyya said his family moved to Sanaa sometime in 2016 for treatment when fighting engulfed his neighbourhood in the southwestern city of Taiz.

As Houthi fighters were being expelled from the city, air attacks and street clashes devastated Taiz, forcing at least 37 of its 40 hospitals and medical institutions to close.

According to local authorities, Doctors without Borders, best known by its French initials MSF, was one of the few aid agencies that continued providing free antiretroviral (ARV) treatment to the 600 people living with HIV/AIDS in the capital.

The situation was so dire, that some of the patients began rationing their medicines because of the difficulty associated with reaching clinics and hospitals.

Citing the case of one woman, MSF said that she began taking half a tablet instead of a whole one and even began taking them on alternate days so she didn’t have to completely stop her treatment.

Zakariyya said he and his family were among the fortunate ones and received their intended doses. 

“The doctors have given us medicine,” he said. “I don’t know its name, but it’s a red pill. I take one every day.”

The government has zero funds allocated for HIV and AIDS

TAHA AL-MUTAWAKEL, MINISTER FOR HEALTH IN THE HOUTHI-RUN ADMINISTRATION

Thrown out of their homes

According to the World Health Organization, the first HIV case appeared in Yemen in 1987, and the number of people living with it was estimated to be around 9,900.

While prevalence was only 0.2 percent of the population, most Yemenis living with either of the viruses faced stigma and discrimination, even from their families.

According to the most recent report by Stigma Index, the world’s largest social research project implemented by people living with HIV, most HIV-positive Yemenis had been thrown out of their homes by family members due to fears of infection.READ MORE

The research said that all the people they interviewed experienced some form of stigma because of their HIV status, with one third saying they had to “change their residence or could not rent a place” because of their condition.

Ibrahim al-Babli, a doctor at the HIV/AIDS laboratory at the al-Jumhurriya hospital, said those patients were not the only forgotten victims of this war.

A staggering 1.2 million civil servants living in Houthi-held areas had not received their salaries after the Yemeni government stopped paying them in late 2017 in an effort to start a popular uprising.

The effects were devastating, with health, education and sanitation services left without the people needed to run them.

Resources were stretched so thin, Babli said, that patients were lucky to enter a manned hospital.

“I haven’t received my salary in months, I get paid sporadically,” said Babli.

“If doctors aren’t cared for, then that means there’s no care for the patients.”

‘Zero funds for HIV/AIDS’

The United Nations has repeatedly described Yemen’s humanitarian situation as “catastrophic” and, on Wednesday, Mark Lowcock, the under-secretary-general for Humanitarian Affairs, said the situation had worsened in the past year with “more than 24 million people now needing humanitarian assistance”.

Taha al-Mutawakel, the minister of health in the Houthi-run administration, told Al Jazeera that the war had crippled the health system with “zero funds allocated for HIV and AIDS”.

HIV/AIDS: Fewer deaths, but infections still rising

INFOGRAPHIC

HIV/AIDS: Fewer deaths, but infections still rising

“We’re currently operating with a grant of $800,000 provided by the Global Fund to Fight AIDS, Tuberculosis and Malaria,” he said.

“Medicines are readily available and offered free of charge and distributed to each of the governorates … but the siege has had a major impact on patients seeking treatment.”

Saudi Arabia, which has been conducting an air campaign in Yemen since March 2015, intensified its embargo on the country in 2017, restricting both humanitarian aid and commercial goods from entering Houthi-held ports.

The kingdom said the blockade was a necessary precaution aimed at preventing weapons from being smuggled into Yemen by Saudi Arabia’s regional rival, Iran.

The inadequacy of services … may increase the vulnerability to HIV/AIDS transmissions

ELTAYEB ELAMIN, REGIONAL PROGRAMME ADVISER AT UNAIDS MIDDLE EAST

‘Race against time’

Eltayeb Elamin, the Regional Programme adviser at UNAIDS Middle East said the situation in the country had greatly affected the movement of HIV and AIDS patients, with the “disruption to the supply system … leading to difficulties in the accessibility for available services”.

“The effect of the war on the health infrastructure is also greatly stressed with inadequate supplies hampering HIV/AIDS prevention efforts especially counselling and testing,” he said.

“The inadequacy of services … may increase the vulnerability to HIV/AIDS transmissions through lack of universal precautions and inadequacy of needed services.”READ MORE

Zakariyya said while he was still in the dark about his son’s future, he was confident that with some treatment, he could go on to live a full life.

“My son nearly died. But now, all praise to God, he is doing much better,” he said. “We believe in God and have faith that our lives and our fate are in his, not our, hands.”

Meritxell Relano, UNICEF’s resident representative in Yemen, said that with the fighting showing no signs of abating, aid agencies were in a “race against time” to save children such as Ahmad.

“We urge for an end to the war on children, not tomorrow, but today,” she said. “Parties to the conflict must work to reach a negotiated political solution, prioritising and upholding the rights of the children.

“The longer this war continues, the more children are going to die on the world’s watch.”

Resources are stretched so thin, that according to Dr Babli, patients are lucky to enter a manned hospital [Al Jazeera]

Integrase Inhibitors May Be Tied to Weight Gain

Poz.com explores an issue that needs more research but at present is pointing to this being real for many.

More high-quality evidence is needed to determine how this class of HIV medications may affect weight gain.


The integrase inhibitor class of antiretroviral (ARV) medications may be associated with weight gain, aidsmap reports. A review of observational studies and clinical trials found the risk to be pronounced among women and Black people.

Publishing their findings in the Journal of Virus Education, researchers looked for studies that could provide information about weight changes after starting one of the four approved integrase inhibitors: Isentress (raltegravir); Tivicay (dolutegravir), which is included in Triumeq (dolutegravir/abacavir/lamivudine) and Juluca (dolutegravir/rilpivirine); Vitekta (elvitegravir), which is included in Stribild (elvitegravir/cobicistat/emtricitabine/tenofovir disoproxil fumarate) and Odefsey (emtricitabine/rilpivirine/tenofovir alafenamide); and bictegravir, which is not approved as a stand-alone pill and is included in Biktarvy (bictegravir/emtricitabine/tenofovir alafenamide).

The study authors reviewed a handful of randomized clinical trials—in which differences in ARV regimens were the result of randomization—including:

  • The ACTG 5257 study, in which those who received Isentress, in particular Black participants, were more likely to become overweight or obese compared with those who received boosted Prezista (darunavir) or Reyataz (atazanavir). All participants took Truvada (tenofovir disoproxil fumarate/emtricitabine) as a backbone to their ARV regimen.
  • The NEAT-001 study, in which all participants took Isentress and those who took it with boosted Prezista developed higher trunk fat levels after 96 weeks compared with those who took Isentress plus Truvada.
  • The SPRING-1 study, in which weight gain was greater among those who took Tivicay compared with those who took Sustiva (efavirenz).
  • The Gilead 1490 study, in which participants took either Tivicay or bictegravir. Both groups gained 3 kilograms (6.61 pounds) over 96 weeks. All study members took Descovy (emtricitabine/tenofovir alafenamide) as a backbone.

Some research has suggested that the tenofovir alafenamide component of Descovy is associated with weight gain compared with the older version of tenofovir, the tenofovir disoproxil fumarate component of Truvada.

As for observational studies, which are a less robust source of scientific evidence than randomized trials, findings included:

  • Tivicay plus Ziagen (abacavir) was associated with greater weight gain than Tivicay plus Viread (tenofovir disoproxil fumarate). It is not clear whether this indicates that Viread moderates any weight gain linked to integrase inhibitors.
  • Several observational cohort studies saw greater weight gain in those starting or switching to an integrase inhibitor, particularly women.

More research is needed to determine whether integrase inhibitors are associated with weight gain and whether any such gain in body fat is associated with various negative health outcomes. Obesity is associated with diabetes, cardiovascular disease (CVD) and cancer in particular, all of which occur at higher rates among people with HIV compared with the general population.

Tips on Taking Your HIV Medication Every Day



This important article will help everyone who sometimes struggles with taking their medication every day and although it relates to the US experience it is a great guide for us here in Australia…and is from HIV.gov and was printed on The Body website…

January 28, 2019


What Are Some Tips to Help Me Take My HIV Medication Every Day?

If you’re newly diagnosed with HIV, you may be seeking tips and tools to help you keep up with your HIV treatment. That’s because HIV treatment involves taking HIV medication every day, exactly as prescribed to lower the amount of HIV in your body (also called the viral load) to a very low level. This is called viral suppression. If the viral load is so low that it doesn’t show up in a standard lab test, this is called having an undetectable viral load. Getting and keeping an undetectable viral load is the best thing you can do to stay healthy. There is also a prevention benefit: people living with HIV who take HIV medication daily as prescribed and get and keep an undetectable viral load have effectively no risk of transmitting HIV to an HIV-negative partner through sex.

Learn more: Read the fact sheet about the health and prevention benefits of viral suppression and maintaining an undetectable viral load (PDF 166 KB).

Here are some tips that may help you take every dose of your HIV medication, every day:

  • Follow your treatment plan exactly as your health care provider has prescribed. HIV medication should be taken at specific times of the day, with or without certain kinds of food. If you have questions about when and how to take your medication, talk to your health care provider or pharmacist.
  • Create a routine. Add taking your medication to things you already do each day.For example, if your medical provider prescribes taking your medication every morning with food, make it a habit to take it at breakfast.
  • Try a weekly or monthly pill box with compartments for each day of the week to help you remember whether or not you took your medicine that day.
  • Set an alarm on your clock, watch, or phone for the time you take your HIV medication.
  • Keep a daily log or use a calendar to keep track of the days you have taken your HIV medication.
  • Download a free app from the Internet to your computer or on your smartphone that can help remind you when it’s time to take your HIV medication. Search for “reminder apps,” and you will find many choices.
  • Set up automatic refills at your pharmacy. Your medicine will be ready when you need it, and you won’t run out.
  • Ask a family member or friend to encourage you and give you a daily phone call, text, or email to remind to take your HIV medication.
  • Continue to see your health care provider regularly. Regular medical visits are important to monitor the amount of virus in your blood to make sure it stays undetectable, and to receive other medical support. Use these visits to talk openly to your provider about any help you might need sticking to your treatment plan..

You can also visit HIV.gov’s Positive Spin or CDC’s HIV Treatment Works campaign to view stories of how people living with HIV are taking their HIV medication every day.

What Are Some Challenges I Might Face Taking My HIV Medication Every Day?

Taking medication every day can be difficult. That is why it is important to understand some of the challenges you may face and to think through how you might address them before they happen. For example, remembering when to take your medication can be complicated. Some medication regimens involve taking several pills every day—with or without food—or before or after other medications. Making a schedule of when and how to take your medicines can be helpful. Or ask your health care provider about the availability of multiple drugs combined into one pill.

Other factors can make it difficult to take your HIV medications every day, including:

  • Problems taking medications, such as trouble swallowing pills, can make staying on treatment challenging. Your health care provider can offer tips and ideas for addressing these problems.
  • Side effects from medications, for example, nausea or diarrhea, can make a person not want to take them. Talk to your health care provider. There are medicines or other support, like nutritional counseling to make sure you are getting important nutrients, which can help with the most common side effects. But don’t give up. Work with your health care provider to find a treatment that works for you.
  • A busy schedule. Work or travel away from home can make it easy to forget to take pills. Planning ahead can help. Or, it may be possible to keep extra medicines at work or in your car for the times that you forget to take them at home. But make sure you talk to your health care provider—some medications are affected by extreme temperatures, and it is not always possible to keep medications at work.
  • Being sick or depressed. How you feel mentally and physically can affect your willingness to stick to your HIV medications. Again, your health care provider is an important source of information to help with your mental health needs.
  • Alcohol or drug use. If substance use is interfering with your ability to keep yourself healthy, it may be time to seek help to quit or better manage it.
  • Treatment fatigue. Some people find that taking their HIV medications becomes harder over time. Every time you see your health care provider, make it a point to talk about staying adherent to your medications.

Your health care provider will help you identify barriers to keeping up with your HIV medication regimen and ways to address those barriers. Understanding issues that can make keeping up with your HIV medication regimen difficult will help you and your health care provider select the best treatment for you.

Tell your health care provider right away if you’re having taking your HIV medication every day. Together you can identify the reasons why you’re skipping medications and make a plan to address those reasons. Joining a peer support group of others taking HIV medication, or enlisting the support of family and friends, can also help you.

[Note from TheBody: This article was created by HIV.gov, which last updated it on Jan. 9, 2019.]

RISE SURVEY – Take part now!

The Kirby Institute is seeking people recently diagnosed with HIV to participate in a new research project. Your involvement will help us understand the experience of being diagnosed with HIV today and the impact it has on your life.

 WHAT IS RISE?

RISE stands for ‘Recent Diagnosis and the Impact of Support on Experiences of HIV’. RISE is exploring people’s experiences of being diagnosed with HIV and the changes in their lives following their diagnosis.
 
 WHAT IS INVOLVED? 
We just need you to simply complete an online survey twice a year. The survey includes questions about your experience of being diagnosed with HIV, and your life since then. The first survey will take about 35–45 minutes to complete. (The follow-up surveys will be shorter.)
 
If you agree to it, you can also take part in an interview which will enable you to talk in more detail about your experience.
 
 WHY JOIN THE RISE STUDY? 
The impact of HIV varies for each person regardless of gender, sexuality or cultural background. RISE will assess the role of different types of support on the health and quality-of-life of people newly diagnosed with HIV. By sharing your experience through the RISE Study you can can help influence the way support activities are offered in Australia.
 
 WHO IS ELIGIBLE? 
You can take part if you;

  • Have been diagnosed with HIV from 2016 onward?
  • Are living in Australia
  • Are aged 16 years or over

 WHAT NEXT? 
If you want to know more, please visit www.risestudy.org.au where you will find additional information about the study, or you can contact the study team to ask any questions you might have.


Thank you
The RISE Study team