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.