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Fear-Based Public Health Campaigns for HIV/AIDS Prevention: Efficacy and Ethics

Even the strongest supporters of emotionally charged campaigns admit that fear alone isn’t enough to drive behavior change.
Even the strongest supporters of emotionally charged campaigns admit that fear alone isn’t enough to drive behavior change.

Is fear the best method for educating the public about the risks of contracting HIV, or does it further stigmatize an already underserved population?

From the early 20th century through World War II, scare tactics, such as using images of skulls and crossbones or pictures of questionable women, were used to warn about the dangers of sexually transmitted infections.1

The same themes were employed at the outset of the AIDS epidemic, but activists criticized these messages as stigmatizing. In the early 1980s, ethics professionals began to question whether fear posed a threat to the autonomy of those the advertisements were meant to reach.1 More recently, bioethicists have worried that fear-based public health campaigns can elicit shame instead of evoking awareness as intended.1

It seems that public health educators are divided on whether to use fear to spark behavior change regarding HIV/AIDS, smoking, and obesity. Some contend that these “shock tactics” work and outweigh any potential risks, but others believe that fear-based campaigns can stigmatize already vulnerable groups.


Fear as Fuel for Changing Behaviors

Fear-based campaigns have been defined as efforts to make individuals internalize a threat of death, disease, suffering, loss of beauty, loss of social status, or even social exclusion.1 A fear-based HIV campaign doesn’t simply mean using graphic images of death and disfigurement; instead, messaging can make a threat feel immediate and make target audiences feel vulnerable to that threat.

The general consensus for those in favor of leveraging fear in these campaigns was that it is important for targets to understand the risks of the behavior in “an emotionally genuine manner.”1When science-based messages fail to convey the seriousness of the disease, adding emotion could spur more informed decision making.

“The stuff we did in the early ’90s was fear based, shocking and scared people into changing their behavior,” said Louie Moses, founder and creative director of Phoenix-based marketing agency Moses Inc., in Ad Week.2

This method resonated with some early gay activists, including Larry Kramer and Randy Shilts, who believed subtlety couldn’t adequately communicate the gravity of the disease and its effects.1

In the early 21st century, as overall case rates for HIV and AIDS declined in the United States, there were upticks in the rate of HIV infections among young minority men of color who had sex with men.1 In particular, Latinos were twice as likely—and blacks were four times as likely—to be infected with HIV than whites.1 Concern that these populations weren’t getting the message incited energy around using fear to prompt safer sex.

The “HIV Is No Picnic” campaign developed by the grassroots Stop AIDS Project took a reality-based approach to exposing the myth of living well with HIV that was promoted by the pharmaceutical industry. Despite calls to end the campaign that detailed the painful reality of living with HIV, Stop AIDS Project’s program director defended the initiative: “We consider this a truth-in-advertising campaign.”1

In 2010, the New York City Department of Health and Mental Hygiene launched the graphic “It’s Never Just HIV” campaign, targeting young men of color who had sex with men. The campaign’s shocking messages and imagery of the potential side effects of HIV, such as osteoporosis and anal cancer, provoked a widespread public outcry from many in the gay community.1 However, during the campaign’s six-month run, participants reported changes in behavior, according to survey data.3

These results were supported by a groundbreaking 2015 meta-analysis in Psychological Bulletin. Researchers reviewed studies conducted between 1962 and 2014 and concluded that fear appeals were effective at positively influencing attitudes, intentions, and behavior.1 Further, the authors wrote that there were few circumstances where fear tactics were not effective and there were no identifiable circumstances under which they backfired and led to undesirable outcomes such as stigma.1

Replacing Fear with Hope

Some public health professionals involved in AIDS prevention in the 1990s and 2000s were concerned that the use of fear could be seen as preying on the panicked. To avoid that perception, Jim Curran, an official with the Centers for Disease Control and Prevention, pushed that all public service announcements at the time include ways that HIV could not be spread, instead of focusing on the negative.1

Soon, a new paradigm emerged, rejecting fear in favor of sex-positive messaging.

The national social marketing campaign “HIV Stops With Me,” launched in 2000, aims to prevent the spread of HIV while also reducing the stigma associated with the disease.4 The campaign focuses on the personal strengths of real HIV-positive people. Visitors to the HIV Stops with Me website engage with the campaign’s spokesmodels, read about issues related to HIV/AIDS, and learn about accessing local services.

In late 2010, gay advocacy groups demanded that New York City pull the plug on the “It’s Never Just HIV” campaign on the grounds that it paints a grim picture of life as an HIV-positive man.

“We know from our longstanding HIV prevention work that portraying gay and bisexual men as dispensing diseases is counterproductive,” said Marjorie Hill, PhD, chief executive officer of Gay Men’s Health Crisis, a New York City-based non-profit. “Studies have shown that using scare tactics is not effective. Including gay men’s input, while recognizing their strength and resiliency, in the creation of HIV prevention education is effective.”5

In 2015, the Arizona Department of Health Services also chose to focus on hope.

“We needed a coordinated media strategy and it needed really to focus less on fear-based messaging and more on empowering people,” John Sapero, office chief for HIV prevention for the Arizona Department of Health Services, told the New York Times.6

The health department tapped Moses to create a public service announcement to drive people to visit, where they could get information about testing and other resources. After two months, the site attracted 9000 new visitors. Year-over-year, repeat visitors to the site rose from 15 percent of visitors to more than 40 percent.6

“We kind of learned from the past we didn’t want to shock and scare and judge the group of people we were talking to,” said Moses. “Since then, the research says that shocking and embarrassing and shaking your finger at the potential consumer does the exact opposite. It just makes them hide.”6

This shift in tone marks a trend in favor of messages of support and hope over shock and shame. This more positive approach is driven by a better understanding of the disease and less stigma, thanks to celebrities like Charlie Sheen speaking up about their status. One-quarter of new infections affect people ages 13 to 24, and messages of positivity are key to reaching millennials, who bristle at being goaded.2


Social determinants of health—conditions in the places where people live, learn, work, and play—affect a wide range of health risks and outcomes. Even the strongest supporters of emotionally charged campaigns admit that fear alone isn’t enough to drive behavior change.1

Whether scare tactics are used in public health campaigns and, perhaps more importantly, how such efforts will be received by at-risk populations, depends on the political and social climate of those communities. Both approaches have been shown to move the needle in increasing awareness about the risks of contracting HIV.


How Often Should We Test for Hepatitis C in People Who Inject Drugs?

The advent of oral directly acting antivirals heralds a new era in hepatitis C virus (HCV) management in which elimination is a realistic goal.1 A crucial element of the elimination strategy is the regular screening of at-risk populations. The undiagnosed HCV population not only represents a significant burden of disease but also drives transmission. A major challenge associated with screening is the loss to follow-up that occurs with people who inject drugs (PWID). This is compounded by the multiple steps inherent to conventional testing. A positive HCV antibody screen requires subsequent HCV RNA testing to distinguish active from resolved infection. In practice, this means that at least 3 clinic visits are necessary before treatment can begin.

A recent mathematical modelling study published in the Journal of Viral Hepatitis addresses the question of HCV testing frequency in PWID.2 The model assessed settings with differing HCV prevalence rates: low, medium, and high (25%, 50%, 75%, respectively). The model assumed universal access to treatment with 100% initiation after 30 days of diagnosis and a 95% cure rate. The output was the testing frequency required to achieve the World Health Organization (WHO) target of 80% reduction in incidence by 2030 (using 2015 as a baseline). The impact of changing to a testing strategy where HCV RNA or a novel HCV core antigen test is used directly was also evaluated. This would allow skipping of the initial HCV antibody test, reducing loss to follow-up and lag in diagnosis.


The model results show that in low-prevalence PWID populations, it is possible to achieve the 80% reduction target with a 2-yearly testing strategy. However, this result is based on an initial HCV antibody test with a 100% follow-up of HCV RNA testing within 3 months and an 80% testing coverage. Interestingly, if the testing were increased to 6-monthly the target could be reached as early as 2024. For medium-prevalence PWID populations, annual testing is required to reach the target if there is 90% coverage and 50% follow-up with HCV RNA testing.

Finally, for high-prevalence PWID populations (typical for the United States and France) 3-monthly testing using the HCV antibody test would achieve only a 60% incidence reduction assuming 100% follow-up to further testing and 80% coverage. Changing to a direct HCV RNA/HCV core antigen testing strategy adds a small improvement but even with 90% coverage the target will not be met. Other prevention measures such as needle and syringe programs and opioid substitution therapy3will need to be expanded to achieve the 80% incidence reduction.

This study highlights the significance of initial prevalence for HCV elimination strategies in PWID populations. More frequent testing, improved linkage to care, and greater testing coverage will all be important in the path to elimination.

Infectious Disease Advisor talked to Dr Nick Scott from the Department of Epidemiology and Preventive Medicine, Monash University, Australia, and the Disease Elimination Program, Burnet Institute, Melbourne, Australia, lead author of the previously discussed mathematical modelling study published in the Journal of Viral Hepatitis.

Infectious Disease Advisor: For clinicians, what are the main implications of your study in high, medium and low HCV prevalence populations?

Dr Scott: The main implication for clinicians is that regular HCV tests and HCV education should be offered to people who indicate that they are actively injecting drugs. In low-, medium- and high-prevalence settings it would be appropriate to offer 2-yearly, annual, and 6-monthly tests, respectively.

In particular, the study demonstrates that many of the public health benefits of HCV treatment will not be realized without clinicians actively following up antibody-positive patients for confirmatory RNA testing and treatment commencement.

Infectious Disease Advisor: Are these recommendations likely to change over time if HCV prevalence decreases?

Dr Scott: These recommendations are likely to remain until HCV has been controlled as a public health threat, which could take up to 2030 in many settings. Beyond this, further modelling will be required to inform updates to testing guidelines.

Infectious Disease Advisor: Do you think it is inevitable that to meet the WHO HCV elimination there will need to be large-scale roll-out of HCV RNA core antigen testing in place of HCV antibody testing?

Dr Scott: The models suggest that in settings with low HCV prevalence, existing testing methods (ie, hepatitis C antibody testing followed by confirmatory RNA testing) are likely to be sufficient to meet the hepatitis C elimination target, provided a high coverage of testing can be achieved among risk populations. However, for settings of moderate to high prevalence, the availability of hepatitis C RNA core antigen testing would make reaching the targets considerably more feasible.


HCV elimination within the timeframe envisaged by the WHO will require considerable focus on PWID particularly in countries, such as the United States, where prevalence is very high. In combination with expanded access to treatment, novel testing approaches will likely be important.



New 20-minute hepatitis C screening test launches in Metro Vancouver

Example of a hepatitis C screening test in the U.S., similar to new pilot program in Metro Vancouver (Black Press Media files)

London Drugs pilot hopes to help diagnose thousands that are unaware they have the virus


With just a simple finger prick, people in Metro Vancouver can check if they have been exposed to hepatitis C, as part of a new pilot project.

Five London Drugs locations in the Lower Mainland – four in Vancouver and one in South Surrey – launched the new screening program Friday.

At the cost of $24, anyone can undergo the OraQuick HCV rapid antibody test, which provides a result in 20 minutes.

Dr. Alnoor Ramji, a Hepatitis C specialist and clinical associate professor of medicine at UBC, said that there are approximately 80,000 British Columbians believed to be infected with the virus, making B.C. one of the highest rates of new cases per year in the country.

More than 75 per cent of those that harbour the blood-borne virus are baby boomers, born between 1945 and 1975, but ma not know because it can take decades before symptoms become evident.

“We need to raise awareness about the importance of getting tested and increase access to screening – particularly for this age group – so that we can start to treat affected individuals early,” Ramji said.

If a test comes up positive, pharmacists will refer patients to their family doctor for a diagnostic lab test and provide initial counselling.

Advocates hope the easy-access screening can get to those at risk early, preventing more serious symptoms including liver disease, cirrhosis, liver cancer and liver failure.

Daryl Luster with the Pacific Hepatitis C Network was one of the luck ones to go for years undiagnosed but is now cured.

“Hepatitis C is a silent epidemic partly because most people do not know if they are infected but also because the stigma of the disease has created barriers to diagnosis and treatment,” he said.

“Expanding access to screening through pharmacies will help improve access to treatment and curative therapy, and erode the stigma associated with the disease. B.C. is set to be a leader in the elimination of hepatitis C.”



Clinical trial seeks to prevent heart disease in those living with HIV

An international clinical trial, which is looking for effective ways to prevent heart disease in those living with HIV, has hit 7,000 participants.

“It’s a major accomplishment,” said Dr. Judith Currier, professor of medicine and chief of the Division of Infectious Diseases at UCLA Health, which is one of seven enrolling centers in Southern California for this particular clinical trial called REPRIEVE, which stands for Randomized Trial to Prevent Vascular Events in HIV.

Dr. Judith Currier, professor of medicine and chief of the Division of Infectious Diseases at UCLA Health.







Currier said the trial follows individuals who have been living long-term with HIV, and looks into whether taking a statin drug helps prevent cardiovascular events in those who take the medication as opposed to those who don’t take it.

This is a randomized, double-blinded study, which means one group receives the actual drug and the other gets the placebo, which has no effect.

Studies have shown people with HIV are 50 to 100 percent more likely to develop heart disease compared to people who do not.

And that’s because people with HIV have excess inflammation due to chronic viral infection, Currier said. Even when that inflammation is treated and suppressed with drugs, there might be “residual inflammation,” which might increase the risk of heart disease, she said.

Participants either get a placebo or a type of statin drug, which is known to have minimum interactions with drugs HIV patients take, Currier said. Patients are followed for four to six years as part of this trial.

“For people who are living with HIV and doing well on medications, this study will give us a good look at some of the challenges they face and the clinical issues or problems people living with HIV have,” she said.

The clinical trial, which began in April 2015, is being conducted around the world including in countries such as South Africa, Thailand, Brazil and Botswana, Currier said.

In Southern California, participating centers include the VA Greater Los Angeles Healthcare System, the UCLA Health Care Center, the Los Angeles LGBT Center, the Keck School of Medicine at USC, Harbor-UCLA Medical Center, the Eisenhower Health Center at Rimrock CRS in Palm Springs and the UC San Diego AntiViral Research Center.

Participants are required to be between the ages of 40 and 75 and must have been living with HIV. They should be individuals who don’t have a personal history of heart disease, heart attack or stroke, should not be currently taking statin drugs and should only have a low to moderate risk of developing heart disease.

Octavio Vallejo, 62, of Los Angeles, who has been participating in the trial for three years now, said he was diagnosed with HIV in 1990.

“My family is from Mexico and I have a lot of genetic predisposition to diabetes, hypertension and heart issues,” he said.

“I think this study could be very useful for HIV patients, especially for those who don’t have the privilege or opportunities I’ve had for treatment and survival.”



The FDA Just Approved Two HIV Drugs: Will This Change Treatment?

Drugs are latest treatment development for people with HIV.

The drugs will target the most common strain of the virus. Photo: Getty Images

Late last month, the U.S. Food and Drug Administration approved two new medications to help treat HIV-1, the most common strain of the virus. This announcement marks the latest development in new treatment options available for people who live with HIV.

It means more options to treat a virus that the medical community has strived — and at times struggled — to understand over the course of the global HIV epidemic, now well into its fourth decade.

On August 30, drug manufacturer Merck announced that the FDA gave its stamp of approval to two new antiretroviral medications — Delstrigo and Pifeltro.

These are oral medications meant for HIV-positive adults who haven’t received antiretroviral treatments previously. These drugs aren’t for those who’ve already been receiving antiretroviral treatment for HIV.

Merck says it plans to start distributing the medications to consumers in about a month.

“I think with HIV, you have this constantly evolving virus, and there are still unmet needs out there with people living with HIV in terms of treatment. There is no treatment that is perfect for every single patient, so it’s important that we are providing the physician and patients with HIV options that allow them to tailor specific regimens for their needs,” Dr. Carey Hwang, executive director and product development lead, global clinical development – infectious diseases at Merck Research Laboratories, told Healthline. “The approval provides new options for physicians and patients.”

The approval came about after successful phase III trials for Delstrigo and Pifeltro that involved over 700 participants for each drug. Interestingly, both medications showed signs of lowered cholesterol as a somewhat surprising side effect.

Hwang said that this is important given that as people with HIV live longer, they’re starting to show signs of comorbid conditions that typically show up in people as they age, like high cholesterol and other cardiovascular issues.

“Fortunately, the HIV population is aging — they are living longer and longer, and I think statistics show that pretty soon, if not already, the majority of people living with HIV will be over 50. So, more likely, they will have comorbidities like high cholesterol — all these things you get when you get old,” he said. “We don’t expect any real significant drug interactions with a lot of the medicines used to treat these comorbidities.”

What people with HIV should know about the new medications

Dr. Kristin Englund, an infectious disease specialist at Cleveland Clinic, told Healthline that, as with any medication, people looking into these new drugs should check in with their doctors about what makes for the most appropriate treatment.

“Choosing a medication regimen is complex and depends upon numerous factors such as a patient’s other medical issues, potential side effects, and drug interactions,” Englund added. “With more options available, an initial antiretroviral treatment plan can be better tailored to the individual.”

While often in the news, the intricacies of HIV remain fairly misunderstood by the general public.

What are antiretroviral medications, for instance?

These are drugs designed to treat retroviruses like HIV. A retrovirus’s genetic material is made up of RNA instead of DNA. When a retrovirus infects a cell, it uses enzymes to convert its RNA to DNA, mixing its viral DNA with the original DNA of the otherwise healthy host cell. This is what enables the retrovirus to replicate and spread, according to the U.S. Department of Health and Human Services.

Still searching for a cure

It’s important to note that drugs like Delstrigo and Pifeltro can’t cure HIV — there is no cure at the moment. That being said, adhering to an antiretroviral therapy regimen, which involves taking a combination of these kinds of drugs, can allow HIV-positive people to lead healthy lives.

Antiretroviral therapy has been responsible for the significant drop in HIV- and AIDs-related deaths since the epidemic’s height. Additionally, in 2017, the Centers for Disease Control and Prevention (CDC) announced that by strictly adhering to antiretroviral therapy, people with HIV can achieve an “undetectable” viral count, meaning that they effectively cannot transmit the virus to sexual partners.

HIV has certainly taken its toll over the decades. The World Health Organization (WHO) reports that more than 70 million people have been infected with the virus and 35 million have died of HIV-related illnesses since the start of the epidemic in the 1980s.

Hwang added that now is an “exciting time to have these new medications available,” and that there is a “strong pipeline coming forward” of continued innovations in HIV treatment.

Englund remarked how new medications are drastically changing HIV treatment.

“The past decade has seen remarkable advances in the medical treatment of HIV, with single-tablet regimens and stronger medications with less side effects and long-term risks,” Englund said. “It is now possible for people living with [HIV or AIDs] to take one pill in the morning, and have a full and productive day, free of side effects.”

In the future, Englund said medications may no longer be daily but bimonthly.

“This is only going to get better when we see injectable antiretroviral medications that can be given once every month or two,” Englund said. “We won’t have to wait five years for that game-changer.”


HIV and Aging: A Growing Population Faces Unique Challenges

A Conversation With Community Advocate Jeff Taylor

Jeff Taylor

Jeff Taylor (Courtesy of amfAR)

Jeff Taylor, incoming Co-chair of the Community Advisory Board of the amfAR Institute for HIV Cure Research, has been living with HIV for 35 years. A longtime HIV research advocate and cancer survivor, he has served on many community advisory boards, including currently the National Cancer Institute’s AIDS Malignancy Consortium and the Collaboratory of AIDS Researchers for Eradication (CARE). He produces a monthly education series on HIV treatment issues for HIV patients and providers, serves on the regional Ryan White Planning Council, and is director of the HIV+Aging Research Project-Palm Springs to study aging in HIV.

In observance of National HIV/AIDS and Aging Awareness Day on September 18, amfAR spoke with Mr. Taylor about the constellation of issues that affect older Americans living with HIV.

amfAR: How did you become involved in community advocacy?

Jeff Taylor: I did it out of self interest. When I was infected in 1982 there was no reliable test and the diagnosis was considered a death sentence. So in 1988, when there was talk of AZT being a treatment, I got tested and was told I had two years to live and to start making arrangements. By that time my T-cell count was below 200.

The first thing I did was to buy a lifetime membership to a gym because I had watched people waste away as they died, looking like concentration camp victims. So I thought, “Whatever I can do to keep that from happening, I will.”

And the second thing I did was sign up for a clinical trial at the AIDS Clinical Trials Group (ACTG) at Northwestern University in Chicago. I got into one of the first AZT trials for people without a formal AIDS diagnosis, which at that time required symptoms of either Kaposi sarcoma or pneumocystis pneumonia. After that I continued enrolling in clinical trials to get access to drugs to stay alive. Until the effective drug “cocktails” were approved in 1996, I got nearly all my drugs through clinical trials.

I also started going to informal community meetings of HIV advocates to share what little information there was. That group later developed into the Test Positive Aware Network (which publishes Positively Aware magazine), and has been a force in the field ever since.

In 1989 I decided I couldn’t survive another Chicago winter and I moved to San Diego because they had one of the best ACTG sites in the country, headed by Doug Richman, still a leading virologist in the field. I began participating in their studies and was asked to start the group’s Community Constituency Group, now called the Community Scientific Liaison Subcommittee.

amfAR: More than half of people living with HIV in the United States are age 50 and older, and is projected to be more than 70% by 2020. What would you say are the biggest challenges facing people living with HIV as they get older?

National HIV/AIDS and Aging Awareness Day logo

Taylor: Many long-term survivors who tested one drug after another developed resistance and are on what we call “kitchen sink” salvage regimens, where they kind of throw everything at the virus. These people are taking a lot of pills, some very toxic.

For a smaller subset, even that’s not working and they are struggling to put together an effective regimen. There’s also a subset whose CD4 counts have not rebounded, even though their viral load is suppressed. So they’re still in that under-200 danger zone and fighting to stay healthy.

People are still dealing with the toxicity of the drugs over the years. For example, a lot of people who were on tenofovir have kidney damage and bone mineral loss with resulting fractures that restrict their mobility. So they are often physically 10-15 years older than their HIV-negative counterparts and are having to struggle with their health all the time like they did before the cocktails came out. They’re also dealing with the effects of polypharmacy, from having to take other drugs to manage aging-related comorbidities like diabetes, high blood pressure, and cardiovascular disease.

Aside from the medical issues, many people experience what has been dubbed the “AIDS Survivor Syndrome” — the psychological effects of having been fighting an epidemic for the last 35, almost 40 years now. When people who were able to cope for a long time start to watch their friends die again, or to get heart attacks and cancer at higher rates than others their age, they begin having the same grief reaction they had earlier in the epidemic. Many get depressed, some commit suicide, stop taking their drugs, or just completely isolate and have a horrible quality of life.

Back when there was no hope and no cure there were a lot of support programs, and monies were dedicated to them. When the new drug “cocktail” came out in ’96 the whole thrust — as it should have been — was to get people on the drugs, but we’ve lost sight of people’s psychosocial needs.

amfAR: Are there ways that research programs could better serve older Americans living with HIV?

Taylor: Absolutely. The Multicenter AIDS Cohort Study (MACS), now partnered with the Women’s Interagency Health Study, has been an invaluable resource since the beginning of the epidemic. MACS initially enrolled both HIV-positive men and other gay men of the same age to see what was causing people to seroconvert. These people are now in their 50s and 60s, and we know there has been accelerated or accentuated aging. But we don’t know what happens when they get even older.

We need novel ways to get people out of their isolation and depression. As importantly, we need to find ways to provide culturally competent care.

Palm Springs, where I now live, is unique in that we have a very high proportion of older people with HIV. I’ve been working on forming a community-based research collaboration with local providers called the HIV and Aging Research Project, Palm Springs, to look at people longitudinally over time. We have a cohort of people that’s missing elsewhere — people in their 70s, 80s and 90s — and we hope this group can fill the data gaps.

We need to get a handle on inflammation. Aging is a disease of inflammation; and HIV disease, even if it’s fully controlled, causes chronic low-level inflammation. I think that’s what’s driving a lot of the age-related comorbidities like increased cancer rates, increased rates of cardiovascular disease, bone mineral loss, kidney disease, and diabetes that we’re seeing exacerbated in the HIV population.

We need novel ways to get people out of their isolation and depression. As importantly, we need to find ways to provide culturally competent care. Staff in AIDS service organizations are very well-meaning, but often weren’t even alive when the epidemic was raging. They’re taught, “control their HIV, get CD4 back up and they should be fine,” but they may have no idea what their older patients have lived through, so they’re unaware of the psychosocial factors that are causing most of their problems.

amfAR: About one in six new HIV diagnoses in the US are among people aged 50 or older, and older Americans are more likely to receive the diagnosis later in the course of their infection. What could be done to improve HIV prevention and testing rates in this population?

Taylor: First and foremost, we need to recognize that older people have sex. There seems to be a real taboo in our society about talking about this. There have been a lot of campaigns for opt-out testing but it’s not mandated. Providers need to have frank conversations with their patients about whether and how they are having sex, and if they are using condoms. Many people who were long married and are suddenly finding themselves single think, I don’t have to worry about getting pregnant so there’s nothing to worry about; and that couldn’t be further from the truth.

Even in the gay community where people have been getting the safe-sex message for years, there is a lot of complacency now that we have effective treatment. There is much more unprotected sex happening due to the successes of treatment as prevention with the U=U [undetectable = untransmittable] campaign, as well as pre-exposure prophylaxis [PrEP]. But not everybody is on those therapies and so people are definitely at risk.

Rob Newells and Jeff Taylor
Rob Newells and Jeff Taylor, amfAR Institute for HIV Cure Research Community Advisory Board Co-Chairs, at amfAR’s 2017 World AIDS Day HIV Cure Summit, November 28, San Francisco (Courtesy of amfAR)

Also, the only approved PrEP regimen right now, Truvada, contains the old HIV drugs that cause kidney damage and bone mineral loss. So if you have any of those issues you shouldn’t be on Truvada. There is currently some research being done on less toxic PrEP regimens, but I think we’re still a few years away from any getting FDA approval.

Many people radically changed their sexual practices out of fear in the ’80s and ’90s, but some, once they get older, decide to cut loose and have unsafe sex. There are also a disturbing number of people in their 60s and 70s turning to methamphetamine use. HIV clinicians have told us that their number one complaint is that they have patients who are out partying. They tell them the risks, but their attitude is, “I missed out on this. I’m not happy the way I am. I want to go out with a bang and have some fun, consequences be damned.” So once again, we can’t ignore the psychosocial aspects of what the epidemic has meant for the entire community, not just those who are HIV positive.

amfAR: What issues do you address in your monthly education series for HIV patients and providers?

Providers need to have frank conversations with their patients about whether and how they are having sex, and if they are using condoms.

Taylor: I first surveyed our population to find out their needs and then started bringing world-class researchers and providers from UCSC and UCLA to speak. We discuss the newest drugs and if they will work for older treatment-experienced people, and we provide practical information on healthier living. People are also anxious to hear the latest about a cure.

And then we talk about how to live a good life with HIV. We formed a Palm Springs chapter of Let’s Kick Ass, a social group started in San Francisco by Matt Sharp and Tez Anderson. People get together for coffee, pot lucks, pool parties, movie outings, and other activities. We also do a series called the Reunion Project, begun by Test Positive Aware Networks in Chicago. We’ve extended these seminars around the country, both to provide information and to reunite long-term survivors who feel isolated and marginalized in their own communities.

amfAR: Have you seen attitudes towards HIV and people living with HIV evolve over the years?

Taylor: It’s just night and day. Back in the ’80s it was an ugly, ugly time. We had a hostile presidential administration, and Congress was not very supportive either. President Reagan didn’t say the word AIDS until 1987. And of course, we all remember people like Pat Robertson and William F. Buckley Jr. saying things like that gay men with HIV should be tattooed on the buttocks and put in concentration camps. There was a lot of fear, hysteria, and discrimination.

So of course that’s changed thanks in no small part to the work of activists, including groups like ACT-UP, who channeled and retooled the gay liberation political activities of the ’70s. And they were helped by many in the lesbian community who fought alongside the gay men to force these changes. Then when the AIDS cocktail became available in ’96 that was a complete game changer. People stopped dying, and that tremendously reduced the hysteria.

But even today in places like the U.S. rural South and Washington DC, we have new infection rates that are worse than those in South Africa. So HIV has become like so many things in this country, a disease of the poor and disenfranchised, and racial minorities are being disproportionately affected.

Jeff Taylor at amfAR’s 2017 World AIDS Day HIV Cure Summit
Jeff Taylor at amfAR’s 2017 World AIDS Day HIV Cure Summit with (from left) Drs. Paul Volberding, Peter Hunt, Nadia Roan and Satish Pillai (Courtesy of amfAR)

The successes of treatment as prevention and PrEP have also reduced stigma. It used to be really hard for HIV-positive men to date; they were considered sexual pariahs. But PrEP’s benefits have only been seen in communities with access, which tends to be gay white men in most parts of the country. Access to PrEP in the South remains limited, especially among younger black MSM, who have a one in two chance of becoming infected with HIV over the course of their lifetime.

The downside is that a lot of people think AIDS is solved since we’ve got effective medication. So they don’t see any urgency, or a need to devote time and resources to finding a cure. Many don’t realize that there are 40 million people living with HIV worldwide — many of whom don’t currently have access to these lifesaving medications, which furthers the epidemic’s spread

And the irony is that we could stop the AIDS epidemic right now if we tested everybody, put them on treatment if they’re HIV positive, and put everybody at risk on PrEP. There would then be no new infections. But we can’t manage that in this country because we don’t have the political will or a functional healthcare system. And the problems are worse elsewhere, so that’s not going to happen. We can’t treat our way out of this disease. We have to find a cure, otherwise HIV/AIDS will always be with us.

amfAR: What do cure studies such as those being conducted at the amfAR Institute mean to you personally? How would the lives of people who have been living with HIV for many years be changed if there was a cure?

It’s a testament to the incredible altruism of so many in the HIV community that they are willing to keep putting themselves on the line for cure trials that have no direct benefit to themselves.

Taylor: I think everyone, positive or negative, who has lived through the epidemic desperately wants to see a cure in their lifetime. I’ve been struck by the comments of people in focus groups, especially those from marginalized populations, who said that the only thing that would cure the stigma that remains a barrier to almost every aspect of their lives is a cure. It’s a testament to the incredible altruism of so many in the HIV community that they are willing to keep putting themselves on the line for cure trials that have no direct benefit to themselves. That’s what’s making this whole research enterprise possible.

But we should recognize that a cure may not dramatically change the lives of long-term survivors who have suffered the most. It’s not going to reverse all the damage they’ve experienced from both the virus and the toxicity of the treatments over the years. So even if a cure were found tomorrow we’re going to have a population of well over half a million older people in this country who are going to have lifelong medical and psychosocial challenges. We’ll celebrate a cure but we have to remember that it’s going to leave some people behind, and we can’t forget them.


Largest Study of ‘Post-Treatment Controllers’ Reveals Clues About HIV Remission

Most HIV patients need to take daily anti-retroviral therapy — if they suspend treatment, HIV will rebound within three to four weeks. But clinical trials have revealed that a small fraction of patients can stop taking medications yet keep the virus suppressed for 24 weeks or longer, maintaining viral control without the assistance of medication.

Much remains unknown about this unique group of individuals, known as HIV post-treatment controllers, including how rare this ability is. Two new studies – including the largest study of post-treatment controllers to date – explore the characteristics of this group as well as the biological mechanisms that may help explain this unique ability.

“Post-treatment controllers represent a natural model of sustained remission,” said Jonathan Li, MD, of Brigham and Women’s Hospital’s Infectious Disease Clinic and lead author on both studies. “Understanding these individuals can lead to new insights for HIV therapies.”
The researchers defined post-treatment controllers as having viral loads of 400 or fewer copies per milliliter of blood plasma for at least 24 weeks’ post-treatment interruption. The study characterized 67 post-treatment controllers, the largest cohort to date. They found these post-treatment controllers by sifting through data collected from over 700 participants in 14 clinical studies involving treatment interruption.

The CHAMP (Control of HIV after Antiretroviral Medication Pause) study, published in The Journal of Infectious Disease, examined what post-treatment control can tell us about HIV’s progression. The researchers observed that individuals treated early were significantly more likely to become post-treatment controllers. Previously published studies have found other benefits for early treatment, notably decreased risk of transmission to partners compared to treatment starting during chronic infection.

A second study published in The Journal of Clinical Investigation illuminated the biological mechanisms underlying post-treatment control. Li’s team sequenced viral DNA, which the HIV virus had woven into the patient’s DNA.

The team observed that post-treatment controllers had lower levels of intact viral DNA prior to treatment interruption. In other words, post-treatment controllers carried smaller viral reservoirs. Li believes that reservoir size could represent a useful biomarker to help predict which patients will become post-treatment controllers.

In addition to intact viral DNA, Li and his team found that reservoirs of defective viral DNA may offer novel insights for treating HIV. They observed that defective HIV DNA seemed to give rise to proteins that could interact with the immune system. They plan to study this further.

“Each year, there are millions of new HIV infections,” said Li. “The results of these studies may help inform the design of strategies and trials aimed at achieving HIV remission, which we hope will bend the curve of this epidemic.”


Very few sexually active gay and bisexual men use prophylactic drug to prevent HIV transmission, study finds

25 percent of young sexually active gay and bisexual men have never been tested for HIV

“I worry especially about younger men who didn’t grow up with the concerns of HIV that men of older generations did,” said lead author Phil Hammack, a professor of psychology. (Photo by Melissa De Witte)

Only 4 percent of sexually active gay and bisexual men in the United States use Truvada, a highly effective medication used to prevent the transmission of HIV, according to the results of a first-of-its-kind study.

Led by Psychology Professor Phillip Hammack, the study, “HIV Testing and Pre-Exposure Prophylaxis (PrEP) Use, Familiarity, and Attitudes among Gay and Bisexual Men in the United States: A National Probability Sample of Three Birth Cohorts” was published Sept. 7 in the journal PLOS ONE.

Truvada is a once-a-day prescription medication used to reduce the risk of HIV infection; it is the only FDA-approved form of pre-exposure prophylaxis, or PrEP, which is recommended by the Centers for Disease Control and Prevention (CDC) for those at high risk of HIV/AIDS.

“The extremely low rate of PrEP use, while not surprising given barriers to access in various parts of the country, is disappointing,” said Hammack.

Researchers also found that most sexually active gay and bisexual men aged 18-25 are not tested for HIV annually, as recommended by the CDC, and 25 percent of young men have never been tested.

“I worry especially about younger men who didn’t grow up with the concerns of HIV that men of older generations did,” said Hammack. “The low rate of HIV testing probably reflects a degree of complacency and cultural amnesia about AIDS.”

Conducted by the Williams Institute at UCLA School of Law, the study is the first to report on estimates of HIV testing and use of PrEP among gay and bisexual men using a national probability sample in the United States. In the study, researchers examined gay and bisexual men in three age groups: young (18-25), middle (34-41) and older (52-59).

“Our findings suggest that health education efforts are not adequately reaching sizable groups of men at risk for HIV infection,” said principal investigator Ilan H. Meyer, Distinguished Senior Public Policy Scholar at the Williams Institute. “It is alarming that high-risk populations of men who are sexually active with same-sex partners are not being tested or taking advantage of treatment advances to prevent the spread of HIV.”

Other key findings regarding PrEP use include:

  • Visiting an LGBT health clinic and searching online for LGBT resources were associated with greater likelihood of PrEP use.
  • 52 percent of young sexually active gay and bisexual men were familiar with PrEP as HIV prevention, compared with 79 percent of men aged 34-41.
  • Bisexual and non-urban men were less familiar with PrEP compared with gay-identified and urban men.
  • 68 percent of men who were familiar with PrEP as HIV prevention had a positive attitude toward PrEP use—despite the low level of usage.

Significant findings regarding HIV testing include:

  • Only 45 percent of young sexually active gay and bisexual men had been tested for HIV at least annually, compared with 59 percent of men aged 34-41 and 36 percent of those aged 52-59.
  • Approximately 8 percent of the middle and older groups of men had never been tested for HIV.
  • Black gay/bisexual men were more likely than white men to meet recommendations for HIV testing, which may be due to recent efforts to target black men for HIV testing.
  • Visiting an LGBT health clinic and being out as gay or bisexual to health care providers were associated with greater likelihood of HIV testing.

“In the early days of the AIDS epidemic, gay and bisexual men had to rely on LGBT community sources to receive information about HIV prevention,” said Meyer. “Our findings suggest that contact with LGBT community resources—health clinics and online information—still serves an important role in HIV prevention.”

In addition to Hammack and Meyer, the paper was coauthored by: Evan A. Krueger, research coordinator at the Williams Institute; Marguerita Lightfoot, professor of medicine at UCSF; and David M. Frost, senior lecturer at University College London.

These research results are part of the Generations Study, which is supported by the National Institute of Child Health and Human Development of the National Institutes of Health.



Blow in HIV fight as viral suppression in children remains challenging  


Achieving viral load suppression among children still remains a challenge according to health experts. Despite the positive strides made in HIV management in Kenya, children continue to have lower viral load suppression compared to adults living with the virus. Dr Lucy Matu, the director of programmes at Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) told the Standard that a number of reasons lead to this reality. “The biggest challenge with treating children living with HIV lies in keeping them within care, retention and viral suppression,” said Dr Matu. This even as statistics show that only one out of five children who are not on treatment for HIV will survive by the time they are five years. Matu was speaking during the ongoing National HIV Conference 2018 where she noted that most of the children who are yet to be identified living with HIV are because they are being concealed by their parents. “Parents do not want to bring their children for testing because this indirectly means that their status will also be known yet some want to hide and this is mainly because of stigma,” she said. Viral suppression among children on treatment currently stands at 69 per cent which means that about seven out of every ten children on treatment have achieved viral suppression.  This is lower than suppression among adults which is at about nine out of every ten people on treatment. By the end of 2017, about 105,000 children were living with HIV in Kenya. Out of these 23,000 were yet to be put on treatment. Despite all these, the news is not all that bad because transmission from mother to child has dropped significantly in the past five years. In February this year, Cabinet Secretary for Health, Sicily Kariuki announced that transmission had dropped to just about two out of every fifty children born to parents living with HIV. In 2013, about four children out of fifty were being born with HIV. Dr Matu stated viral load suppression outcomes also differed among children in different age groups. She said, “Those within the age bracket of zero to two years have the least suppression because they mainly depend on caregivers but suppression increases with advance in age because children are able to take charge of their treatment as they continue growing.” The World Health Organisation (WHO) notes that to enable antiretroviral (ARV) prophylaxis to be given to infants as soon as possible after birth, all infants should have their HIV exposure status known at birth. But not all children are tested at birth, nor in the first few months of life mainly due to lack of testing in all pregnant mothers. “As not all mothers are given HIV tests, very few HIV-exposed infants are identified and very few infants are known to be gaining access to early diagnosis, the necessary prerequisite to ‘timely’ initiation of antiretroviral therapy (ART). Currently, only an estimated 15 per cent of HIV-exposed infants needing testing are tested in the first two months of life,” notes WHO.
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Author: Jeckonia Otieno

Switching to an automatic HIV/HCV screening yields benefits

Automatically linking HIV and hepatitis C virus (HIV/HCV) screening to lab orders via electronic health records (EHRs) for all adult patients outperforms a nurse-driven protocol, according to a recent study in Annals of Emergency Medicine.

Switching from a nurse-driven to automatic screening protocol boosted HCV screening from 14.2% to 35.1%, and HIV screening from 19.6% to 33.9%.

“To our knowledge, this is the first report of a dual opt-out, nontargeted, HIV and hepatitis C virus screening program using an electronic health record algorithm to automate the process and focus screening efforts on patients who are having other laboratory tests ordered,” wrote the authors, led by Douglas A. E. White, MD, Department of Emergency Medicine, Alameda Health System, Highland Hospital, Oakland, CA.

Current recommendations from the Centers for Disease Control and Prevention (CDC) call for universal HIV screening in patients between 13 and 64 years of age, and universal HCV screening in patients born between 1945 and 1965, as well as risk-based HCV screening in specific patient populations (eg, intravenous drug users). Experts endorse universal screening as the best way to destigmatize and routinize testing.

The CDC promotes screening in the emergency department (ED) to access high-risk populations that may not be served in a general medical milieu. Limited resources and time, however, restrict the logistic feasibility of this approach. To highlight this discrepancy, the term nontargeted screening has been coined to refer to the selective screening of some patients regardless of chance of infection.

Recent findings have indicated a high frequency of HCV in ED patients of all ages secondary to the opioid epidemic. Models have shown that expanded HCV screening boosts quality of life and life expectancy, all while remaining cost effective. These findings open the door to including age-independent nontargeted HCV screening, in addition to nontargeted HIV screening, in certain EDs.

In October 2015, the investigators established a nurse-order nontargeted HIV/HCV screening algorithm for all ED patients. This algorithm was completed by ED staff, including nurses, technicians, and physicians. On later analysis, this approach resulted in missed screening opportunities, despite its intent to be high yield, integrated, replicable, and sustainable.

In March 2017, the team swapped the nurse-order screening algorithm with an opt-out, automated, EHR algorithm that tied nontargeted HIV/HCV screening to lab ordering, in light of concerns about the nurse-order HIV/HCV screening algorithm.

In the current before-after comparative effectiveness cohort study, the investigators assessed whether automated laboratory-order HIV/HCV screening more effectively screened for and identified new infections vs the nurse-order algorithm.

Eligible patients in the current study were between 18 and 75 years of age and were seen in the ED during 5-month periods. The primary endpoints for this study were the number of patients screened and the number of patients newly diagnosed with HIV or HCV.

The number of eligible patients screened included:

  • 6,736 (33.9%) completed HIV screening during the automated–laboratory-order HIV/HCV screening algorithm
  • 4,121 (19.6%) completed HIV screening during the nurse-order HIV/HCV screening algorithm
  • 6,972 (35.1%) completed HCV screening during the automated–laboratory-order HIV/HCV algorithm
  • 2,968 (14.2%) completed HCV screening during the nurse-order HIV/HCV screening algorithm

The researchers determined that more patients demonstrated newly diagnosed HIV (23 vs 17) and HCV infection (101 vs 29) during the automated–laboratory-order HIV/HCV screening algorithm than during the nurse-order HIV/HCV screening algorithm.

Automated screening also resulted in screening results that were more often available before discharge; in addition, fewer patients underwent repeat screening.

During each 5-month study period, about 20,000 eligible patients were seen in the ED overall. Switching from a nurse-driven to automatic screening protocol boosted HCV screening from 14.2% to 35.1%, and boosted HIV screening from 19.6% to 33.9%.

“Automated–laboratory-order HIV and hepatitis C virus screening was operationally more efficient and better integrated into ED processes compared with the nurse-order HIV/hepatitis C virus screening algorithm,” the authors wrote.

The investigators pointed out that about one-third of patients with newly diagnosed HCV are outside the birth cohort recommended by the CDC, thus supporting a policy for nontargeted HCV screening in all adults.

The authors conceded that one limitation of the current retrospective study was that the results may not be generalizable to other health-care settings.

“An automated electronic health record algorithm that links nontargeted opt-out HIV and hepatitis C virus screening to physician laboratory ordering more effectively screens ED patients, provides results before discharge, minimizes repeated screening, and diagnoses more new infections than an algorithm that relies on nursing staff to offer screening,” the authors concluded. “Because most EDs in the United States now use electronic health record systems, this model can be easily replicated and should be considered the standard for future programs.”

This study was in part funded by Gilead Sciences.

Author: Naveed Saleh, MD, MS