I remember feeling confused and angry the first few times I was blocked or rejected by an online prospect who said they were on PrEP.
David Duran
I was confused, because—in every case—there was interest right up until I disclosed my HIV status. I started feeling angry when I realized and confirmed that it was because of my HIV status that the guys I was chatting with were no longer interested.
I ended up asking one of the guys I was chatting with what had caused him to lose interest, and it wasn’t without some probing that he told me the truth: He wasn’t interested in positive men. When I continued to question him, he blocked me on the app.
PrEP is touted as bridging the serostatus divide. It’s heralded as one solution to HIV stigma and discrimination. HIV-negative people have a nearly 100% effective way (under their own control) to remain HIV-negative. When combined with treatment as prevention—when people living with HIV take HIV medications and remain virally suppressed—the risk of HIV transmission is in all likelihood zero. So why the fear? Why the rejection? Why the discrimination?
I probably don’t have to tell those of you on Grindr or any other dating and hookup app this. You’ve probably experienced it firsthand.
Just because someone says they’re on PrEP doesn’t mean that they are interested in having sex (or a relationship) with someone living with HIV. Stigma still exists, and unfortunately will continue to exist until everyone is on the same page about the effectiveness of PrEP, the power of treatment as prevention, and the realities of modern-day HIV therapies.
For me, bouncing back after experiencing the sting of HIV stigma didn’t take too long.
When I first began texting back and forth with the guy who is now my boyfriend, it began as a typical online conversation (we met on Instagram). We invested hours typing away questions and answers to each other—starting the process of getting to know one another. Since we hadn’t met on a traditional dating/hookup app, he knew much less about who I am and what I was looking for in a relationship right away.
I really liked him, and knew at some point I would have to send that disclosure text. Instead of a casual short line or two, I ended up writing a paragraph linking to an article I had written about disclosing my status. It seemed like overkill, and I spent a good five minutes reading over what I had written to make sure my words were just right. I even gave him an easy out, if he wanted one.
Before I could send the message, I received a lengthy one from him right back. As I read his text, I realized he was disclosing his HIV status to me, and giving me an easy out, if I wanted one.
The relief I felt in the moment was momentous. I experienced something I hadn’t felt in a long time when messaging guys. Suddenly, I felt everything would be OK. I could pursue this guy and not have to worry about further discussion about HIV, risk, being undetectable.
We spent the next hour reliving our disclosure experiences with guys online, and talking about how stressful and hurtful they could be. It takes a lot of courage and resilience to disclose your HIV status. Even when the response you get isn’t negative, it leaves you feeling vulnerable and questioning how the person you’ve disclosed to will treat you.
It’s been a while since I’ve dated someone else who is living with HIV. Honestly, now that I am, it makes me wonder why I haven’t made it a priority or a preference before. Partly I think it was because I wanted to believe that the world was moving past HIV status as a way to categorize people, but maybe we’re not quite there yet.
What can we do?
I’m not suggesting that people who are HIV-positive should only date other HIV-positive people—that would be ridiculous.
In addition to doing our part, apps should (and are) doing their part to create better experiences for their users. Some apps are already working to combat HIV stigma by working with researchers, public health experts, and community members to share information about HIV treatment and PrEP, provide HIV testing reminders, inviting users to communicate openly about HIV status and PrEP, and more.
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David is a nationally recognized HIV advocate and writer who contributes to HIV focused publications including POZ, Plus, Positively Aware and The Body. Additionally, he focuses on travel writing and spends approximately 90% of each month traveling the world on different assignments. To read more of his HIV writing, visit his online portfolio, or follow him on Twitter.
Receiving an HIV diagnosis can change your life overnight and will probably stir up a cocktail of emotions. However, reading blogs written by other people who have HIV and healthcare professionals can help you understand you’re not alone.
HIV blogs, written by those with HIV and healthcare professionals, can provide coping strategies and support.
HIV now affects roughly 1.1 million people in the United States, and of these, roughly 1 in 7 won’t know that they have it.
Research and improved treatments are now enabling more and more people with HIV to lead better-quality lives and live longer than ever before.
Though therapies for HIV have come on in leaps and bounds, if the condition progresses, it is still a “significant cause of death” among specific populations.
If HIV is left untreated, it may develop into AIDS — which was responsible for around 6,721 deaths in 2014.
If your condition is properly managed by taking medication, avoiding illness, and making healthful lifestyle choices, you will be able to lead a near-normal life with HIV. Getting support from friends, family, and specialist organizations is also important.
Blogs written by medical professionals who specialize in HIV and those who have been through similar experiences as you are out there and may provide support and tips for coping with the condition on a daily basis.
Medical News Today have selected the 10 best blogs for HIV and AIDS.
BETA
BETA was first launched in 1988 as a community-based magazine that reported news on HIV treatment, prevention, and care. The magazine shifted to an online publication in 2013 to celebrate BETA’s 25th birthday.
BETA remains a leading source of information on new developments in preventing HIV, evolving therapies to treat HIV, and strategies to help those with HIV to live well with the virus.
POZ is an online and print publication for people affected by HIV and AIDS. POZ magazine and POZ.com are estimated to reach more than 70 percent of U.S. individuals who are aware that they have HIV.
POZ offers daily news on HIV, updates on the most recent treatment breakthroughs, investigative features, personal stories, and a social network that addresses the needs of those with HIV and AIDS.
Mark S. King is an author, HIV advocate, and the writer of the blog My Fabulous Disease. His blog has received numerous awards, including the National Lesbian and Gay Journalist Association’s “Excellence in Blogging” honor for the years 2014 and 2016.
My Fabulous Disease features snippets from King’s life living as a gay man with HIV and who is also recovering from drug addiction, as well as frank opinion, debate, and inspirational writing.
Josh Robbins learned in 2012 that he was HIV-positive. He created the blog I’m Still Josh to let the world know that while being HIV-positive is part of his life’s story, it is not what defines him as a person.
Through his blog, Josh hopes to help people who are HIV-positive and -negative to find hope through his experiences. He also aspires to help others avoid receiving the same diagnosis as him, and to help people who are HIV-positive to realize that their diagnosis is just the start of entering a new world.
Kenn Chaplin was diagnosed with HIV in 1989, has experienced many AIDS-related illnesses, and is the author of the blog My Journey with AIDS…and More!
His blog began in 1993 as a letter to a dying friend and morphed into the record of his thoughts, feelings, activities, and life that it is today. Kenn says that although HIV and AIDS are an important part of his journey, he has many other interests and goes off on tangents regularly.
The Body is an HIV and AIDS resource that uses information as a tool to lower the barriers between those with HIV and clinicians, and demystify HIV and its potential treatments.
The Body’s board of experts provides high-quality information to help improve the quality of life for those living with HIV and AIDS, and its mission is to “foster community through human connection.”
Positive Peers is a social media app that is designed for young adults, between the ages of 13 and 34, who are living with HIV.
Positive Peers was developed with the vision that their users will feel less isolation and stigma and have better health outcomes due to being able to use the app’s tools to self-manage their condition.
Justin B. Terry Smith has been living with HIV since 2005. He lives in Laurel, MD, with his husband and two sons, who are 18 and 20 years old.
Justin has been an HIV and Gay Civil Rights activist since 1999. He has written for many publications and created the blog Justin’s HIV Journal to share the trials and tribulations of living with HIV and advocating for HIV education, awareness, and prevention.
A Girl Like Me is an online blog from The Well Project, which is a non-profit organization devoted to changing the course of the “HIV/AIDS pandemic” with a specific focus on women and girls.
The Well Project was initially founded as a response to there being so little information designed for women and girls living with HIV. They focus on education through information, advocacy, and support.
Peter Scott founded NAM aidsmap in 1987, while he was working with a community affected by HIV. He wanted to address misinformation about HIV and AIDS, most of which was homophobic or inaccurate.
NAM believes that the key to fighting HIV and AIDS is having clear and accurate information available. Having concise information helps people to protect themselves, look after others, and challenge discrimination and stigma.
BETA: Why is it important to have a good understanding of how PrEP is being used (or not used) by different communities?
Kenneth Mayer, MD
Kenneth Mayer, MD: We know that PrEP works. We have something that can protect people from HIV, but when it comes to implementation, the question now is: Is the glass 1/10 full or 90% empty? We might have more than 10% of people who are at risk for HIV taking PrEP, but we certainly don’t have more than 20% right now.
There’s also data to suggest maldistribution of PrEP. The epidemic is disproportionately affecting African Americans and other people of color, but the relative rates of PrEP uptake are lower than they are for white people. Uptake of PrEP among women is certainly less. Even among men who have sex with men [MSM], there’s still substantial underutilization. PrEP can slow down the HIV epidemic, but it’s not being implemented as widely as it might be. That’s what led us to do this review.
You mentioned the “maldistribution” of PrEP, which is an issue many organizations and people working in HIV prevention want to address. What are some examples of strategies used to better reach people who may not be accessing PrEP because they’re marginalized from the healthcare system?
Anything you can do to promote awareness and reduce barriers to PrEP is going to be useful. In terms of increasing awareness, I know that the New York City public health department has been a leader. They implemented a large, sex-positive community-based education and awareness campaign that promotes PrEP for HIV-uninfected people and HIV treatment for people living with HIV. Campaign ads ran on city busses, on transit shelters, on social media, and in other places.
In terms of minimizing barriers, programs that allow people to access PrEP through pharmacies have been beneficial. People already go to pharmacies to get flu shots or hypertension monitoring. As long as there is renal [kidney] function monitoring, it’s certainly a safe medication to deliver through pharmacists.
PrEP navigators are another way to decrease barriers to PrEP. At a place like Fenway Health, there are probably more than 100 ways that people pay for PrEP. It can be bewildering for professional staff, let alone for people in the community. PrEP navigators help people navigate the insurance and patient assistance system, and figure out how to pay for PrEP.
If you could wave a magic wand and change one thing about the delivery of health care in this country that would improve PrEP uptake, what would that be?
I would transform our fragmented health care system into a single-payer model. Right now, there are disincentives for health insurance companies to pay for PrEP and to offer other preventative health care services. A person who may benefit from these preventative health care interventions may not be insured by the same payer in a few years, so insurers are sort taking the approach of ‘kicking the can down the road.’ With a single-payer system, it would make economic sense to make sure everyone at risk for HIV has good access to PrEP, in order to prevent costly HIV infections that would require triple therapy for life.
Your review highlights the fact that Black women account for two-thirds of new HIV infections in American women, but that PrEP uptake has been slow in this community. What are some of the challenges here, and what might be a solution?
One of the issues is that for Black women in the U.S. is that the mean number of recent sex partners is about 1.1 or 1.2. In other words, there are a small number of women who engage in sex work or have more partners, but the majority of women are serial monogamists. They may not feel they are at risk for HIV, but they’re becoming HIV-infected through their partners, because their partners are either unaware of their status or do not disclose their status.
A no-brainer solution is to make sure that providers who take care of women coming in for reproductive health care, who present with STDs, are given information and access to PrEP. In a lot of cases, this conversation isn’t happening already, so even introducing that conversation into reproductive health care for Black women would be a huge step.
Another thing people are looking at is trying to figure out how to coach women to have conversations with their partners about HIV and risk. It’s important for women to feel that they have the agency to have these conversations with their partners, but a lot of times, there may be cases where there is violence or power dynamic imbalances when this isn’t feasible.
What do you see as the take-home message from your review of PrEP delivery in the U.S.?
I work with a number of young colleagues beginning federally-funded PrEP implementation projects in places across the country. We informally get together and talk about issues related to implementation, in places including St. Louis, Missouri; Jackson, Mississippi; Providence, Rhode Island; and here in Boston. We were able to get different “snapshots” about what is working and what is not working in each of these areas.
One of the things we looked at are the facilitators and barriers of delivering PrEP in different health care settings. For example, STD clinics are a logical place to provide PrEP since they’re seeing people who may be at risk for HIV. If somebody comes in with rectal gonorrhea, it makes sense for the STD clinic to be able to provide PrEP rather than having to refer that person to a PrEP clinic across time. But barriers include limited counseling time and the fact that STD clinics typically don’t offer continuous care.
Community health centers are almost the opposite of STD clinics. They’re used to providing comprehensive care, but a lot of clinicians aren’t trained in sexual health care. They may manage a person’s hypotension or diabetes, but not used to asking people who they have sex with and having nuanced conversations about PrEP.
I think the take-home from the paper is that if you don’t have an integrated health care system, there isn’t going to be one place that’s ideal for PrEP delivery. The epidemic is heterogeneous—what works in Jackson, Mississippi isn’t the same thing that will work in Seattle.
San Francisco AIDS Foundation offers free PrEP services at Strut (470 Castro Street in San Francisco) and at their main office (1035 Market Street in San Francisco). Find more information and make an appointment online.
Askaboutprep.org is a website with information about what PrEP is, how to access and afford PrEP, and San Francisco Bay Area clinics and prescribers.
PleasePrEPme.org is a website linking people seeking PrEP services to PrEP providers across the U.S. The site includes a searchable directory (by state, zip code or street address) for users to find PrEP clinics and PrEP clinicians with hours, contact information and health insurances accepted for each listing.
San Francisco City Clinic offers free and low-cost sexual health care to people in the Bay Area regardless of immigration or insurance status. They offer same-day PrEP enrollment during drop-in hours:
The California HIV Alliance, of which Project Inform is a member, submitted their budget request to the State, urging the State to make strategic investments in programs that will increase PrEP uptake and other evidence-based prevention services, provide targeted HIV prevention and employment services for transgender women, address the health and psychosocial needs of older adults living with HIV and educate medical providers about advances in HIV prevention and treatment.
Specifically, we urge the Legislature to consider the following:
$10 Million General Fund Annually – $10 Million General Fund Annually – Support Comprehensive HIV Prevention Services Including PrEP and PEP;
$2 Million General Fund Over 3 Years – Support Demonstration Projects to Address Economic Empowerment and Linkage to HIV Care and Prevention Services for Transgender Women;
$3 Million General Fund Over 3 Years – Support Demonstration Projects to Address the Health and Psychosocial Needs of Older Adults Living with HIV;
$1 Million General Fund Over 2 Years – Develop a Public Health Detailing Initiative to Educate Medical Providers about HIV and STD Prevention;
ADAP Rebate Fund – Modify PrEP Assistance Program to Provide More Comprehensive Coverage for PrEP and PEP.
Further, the HIV Alliance also supports a proposal from the California Hepatitis Alliance to provide $6.6 million General Fund annually for hepatitis C prevention, testing, and linkage to and retention in care. They also support a proposal from Essential Access Health to provide $10 million General Fund annually for STD prevention.
Finally, the HIV Alliance opposes Governor Brown’s proposal to eliminate 340B drug reimbursement within the Medi-Cal Program.
The Syringe Access Fund today announced nearly $2.4 million in grants awarded to 62 organizations that are driving efforts to prevent HIV and viral hepatitis by providing injection drug users with access to sterile injection equipment and related health messaging. The funding will support syringe service programs and advocacy efforts to increase access to these programs in 32 states, the District of Columbia, Puerto Rico, and the US Virgin Islands through 2020, many of which serve the very same communities impacted by increased injection drug use stemming from the opioid epidemic that currently rages across the country.
“Injection drug use has always been a primary mode of transmission for both HIV and viral hepatitis, and the sharing of needles continues to result in thousands of new HIV transmissions each year,” said Elton John, Founder of the Elton John AIDS Foundation. “In light of recent HIV outbreaks linked to injection drug use, which threaten to curb the progress we’ve made toward ending HIV, this is a critical time to continue resourcing programs that provide clean needles and other equipment to injection drug users, because these programs are proven to help prevent the spread of the disease.”
For nearly fifteen years, the Syringe Access Fund has been supporting effective programs that promote the health, safety, and well-being of people who inject drugs, with the goal of reducing HIV and other bloodborne infections. Funding for the Syringe Access Fund is provided by the Elton John AIDS Foundation, Levi Strauss Foundation, and the H. van Ameringen Foundation, and is administered by AIDS United. For this latest round of grantmaking, EJAF provided $2 million in support to the fund because mitigating the spread of HIV/AIDS through intravenous drug use remains a priority for the Foundation. To date, the Syringe Access Fund has distributed over $20 million through 409 grants to 177 organizations in 33 states, the District of Columbia, Puerto Rico, and the US Virgin Islands that serve vulnerable populations including people of color, rural communities, and the LGBT community. Consequently, grantees were able to distribute more than 66 million syringes to more than 350,000 clients.
“Access to sterile syringes is a proven public health tool to prevent the transmission of HIV and HCV,” said Jesse Milan Jr., president and CEO of AIDS United. “Despite longstanding, clear scientific evidence, the federal government continues to hedge its support for syringe services by prohibiting the use of federal dollars to procure sterile syringes themselves. And, too many state and local authorities continue to oppose these programs, even as their residents’ need for them grows. The Syringe Access Fund was designed to step in where government refuses to act. With the opioid epidemic raging, the Syringe Access Fund is needed now more than ever.”
“Funding through the Syringe Access Fund is critical to increase access to life-saving tools and services for people who use drugs,” said Dr. Hansel Tookes, Assistant Professor of Clinical Medicine at the University of Miami Miller School of Medicine, a Syringe Access Fund grantee. “The Syringe Access Fund helped us legalize syringe services in Miami. With continued support from the Fund of our advocacy efforts, Florida is on the brink of allowing syringe services statewide, which could be a turning point for the entire South.”
A complete list of all 62 grants is posted at www.ejaf.org.
Some parts of the country have weather that signals the arrival of the winter holiday season, but the South has Publix commercials. The Florida-based grocery store chain has made a Christmas tradition of its sentimental short films exalting family, fireplaces, and food bought from its stores and prepared with your love. “Whatever your tradition may be, we’re grateful to be a part of it,” a narrator with a delicate rasp says in the 2017 ad, “Traditions. A Publix Christmas story.”
However, Publix is showing a cooler, less compassionate side to some of its 188,000 employees. One of the more prominent supermarket brands in the southeast, it has taken a hard line against including the HIV-prevention medication known as pre-exposure prophylaxis (PrEP) in the insurance coverage it offers workers. But it remains a mystery whether the company is blocking coverage for PrEP due to cost concerns or the growing cry of employers (such as Hobby Lobby) that don’t want to cover medical care for issues or people they deem morally objectionable.
The company’s rejection of what is widely considered a major breakthrough in HIV prevention is as unique as it is puzzling, said David Holland, M.D., M.H.S., an assistant professor of medicine at Emory University and director of the Fulton County PrEP clinic in Atlanta, who unsuccessfully tried to get Publix to cover PrEP for one of the company’s employees. “We’ve started 255 people on PrEP at our clinic alone, and this is the only person that we weren’t able to get PrEP for,” Holland said.
Publix representatives were contacted numerous times for an explanation of the company’s decision, and they responded with a brief statement noting that “the health plans offered by Publix provide generous medical and prescription coverage.” “Annually, we evaluate benefits covered under our health plans,” Publix spokesperson Brenda Reid wrote in the statement. “There are numerous medications covered by the plan used in the treatment of HIV.” “There are some medications that have coverage limitations or require prior authorization,” Reid added. “Any Publix associate with questions regarding his or her coverage can contact our benefits department directly.”
The employee Holland assisted appealed the initial denial, was rejected twice more, and “was the only one we were not able to resolve through an appeal,” Holland said. “What we found out from the insurance company was that it came, ultimately, from the employer,” he added. “It wasn’t just an insurance issue; it was [that] the employer did not want it covered in the insurance.”
Publix officials did not respond to written questions about the company’s rationale for omitting coverage of PrEP for its employees, but Holland and public health advocates believe it was unlikely due to costs. Blogger Josh Robbins first reported in November 2016 that Publix was denying its employees access to PrEP, and the reasoning behind it is still unclear.
“It’s not like every single employee is going to go out and get PrEP, so it can’t be cost,” said Devin Barrington Ward, a social justice advocate and strategist who works with Georgia legislators on behalf of the National Black Leadership Commission on AIDS. “And I guarantee you, if you did a cost analysis, it would cost them less on their insurance premiums if they covered PrEP for someone who is HIV negative versus that person becoming HIV positive. We know that the cost for providing that person care increases exponentially because it’s not just one PrEP prescription.”
The lack of justification offered by Publix has led some to wonder whether the company is refusing to cover the drug on moral grounds.
“Frankly, I’m shocked that, in a day like today, a company like Publix wouldn’t recognize the benefits of PrEP,” said Amistad St. Arromand, who has worked closely with Fulton County health officials on HIV/AIDS-related issues and serves as executive director of The Gentlemen’s Foundation, a black gay non-profit in Atlanta.
PrEP is the common name for a new application of the drug Truvada (tenofovir/FTC), which has long been part of some regimens for people living with HIV. Within the past decade, research has shown that Truvada is also highly effective at preventing the contraction of HIV when used daily by HIV-negative individuals, with the Centers for Disease Control and Prevention (CDC) estimating that it can virtually eliminate the odds of sexually contracting HIV.
“Publix is a billion-dollar corporation, and so if they really wanted to [provide coverage of PrEP] they could,” Arromand said. “I do believe it’s probably a lack of education, a lack of awareness or even probably ignorance — and I’m hoping it’s education and awareness. This is reminding me of the women’s debate that we’ve been having for years where a company is choosing to control what and how its employees access health care.”
Is the “Religious Freedom” to Deny Health Care to Blame?
Such concerns come during an era when more American employers and service providers are asserting their “religious freedom” to set workplace policies on moral grounds. The U.S. Supreme Court’s 2014 decision in Burwell v. Hobby Lobby Stores, Inc., ruled that privately held companies can be exempted from the Affordable Care Act (ACA)’s mandate to provide contraception based on their owners’ religious views.
“This idea that an employer’s religious beliefs may trump an individual employee’s well-being and right to access important medical technologies, services, and drugs, I think is absolutely a lasting legacy of that case,” said Anne Tucker, associate professor at the Georgia State University College of Law. “The message of that particular case was [that] if employers disagree on personal moral bases and want to make health insurance coverage decisions based on that individual morality, [then] that, when it is sufficiently tied to a religion, can be a justification.”
All states set their own mandates for what insurance coverage must include beyond the essential benefits of the ACA. While Georgia requires insurance packages to include a prescription drug plan, insurers and employers determine what medicines are included in that plan, said Glenn Allen, a spokesperson for Georgia’s Office of Commissioner of Insurance. The Georgia legislature determines what services are mandated and adding any new mandates, such as PrEP coverage, to the list requires legislative action, Allen said.
Tucker said that if Publix’s decision is motivated by morality, it continues “the narrative of Hobby Lobby,” but it is not an exact comparison since there is neither a state nor a federal mandate for insurance plans to include PrEP, unlike the ACA’s birth control requirements. While U.S. Supreme Court Justice Samuel Alito wrote that the majority opinion in Hobby Lobby “should not be understood to hold that insurance-coverage mandates … must necessarily fall if they conflict with an employer’s religious beliefs[,]” businesses like Publix stand on solid legal ground due to longstanding attitudes toward health care in the United States.
“The idea [is] that health coverage is voluntary, is an additive benefit and that it is [provided] by the good grace of employers,” Tucker said. “[It] is not considered a baseline right. That’s the default setting; that’s the frame of reference most people have.”
In that case, owners of a Christian bakery requested an exemption from the state’s non-discrimination law because they felt making a cake for a same-sex wedding went against their religious beliefs. Tucker thinks this involves the same dynamics as the Hobby Lobby case. “That is another way of [asking], can an individual or group of individuals, through their business, use their individual religious beliefs as grounds to exempt the business entity from an otherwise generally applicable law,” Tucker said.
That leadership team has created a conservative corporate profile for Publix, from its explicit celebration of Christmas in the aforementioned holiday commercials, to its political action committee donating to Republicans more than two to one in 2012, 2014, and 2016, according to the Center for Responsive Politics. Publix Board Chair Ed Crenshaw has donated exclusively to Republican politicians, as have members of the company’s founding family.
Denying PrEP in the Region With the Nation’s Highest HIV Rates
Among the five commitments made in Publix’s mission statement are dedication “to the dignity, value, and employment security of our associates” and involvement as “responsible citizens in our communities.” The company’s position on PrEP violates both of these tenets, Barrington Ward said. “It’s irresponsible for companies that are doing business in states with high disease burdens not to offer these benefits to their employees,” he said. “They’re not being a good corporate or community partner.”
“They’re not a mom-and-pop grocery store,” Barrington Ward said. “For them to not know that they operate in a region that carries the bulk of the epidemic at this point, that most of the new cases in the United States occur where their grocery stores are, and for them not to provide that protection for their staff is irresponsible, at the very least. Publix’s general reputation as a stellar company to work for makes their opposition to protecting their employees via PrEP even more confounding, Arromand said. “I was really shocked to learn about this because I know I have tons of friends who work for Publix and, believe it or not, I hear really great things about Publix as a corporation,” Arromand said. “The fact that they are employee-driven, the fact that there are plenty of opportunities for their employees to advance as the company grows, and certainly not least, [at a company whose motto is] ‘Where Shopping is a Pleasure,’ working at Publix should also be a pleasure for its employees,” added Arromand, who commended the work being done to increase access to PrEP in the Atlanta area, where more than 30,000 people are living with HIV.
“I’m really proud of the work that we have done over the past two years in Fulton County, where we came from not even having access to PrEP as a public health function, to having systems in place at the Fulton County health department and at Morehouse College to ensure that anyone who is interested in getting PrEP can get PrEP,” Arromand said. “It has been a struggle to get started, but now that the ball is rolling down the hill, it is rolling smoothly. I just wish Publix would learn some lessons from us.”
While Publix officials said they review their insurance offerings yearly, both employers and insurers are allowed to change their insurance offerings throughout the year and not just on an annual basis, said Allen with the Georgia insurance commissioner’s office.
Arromand and Barrington Ward said direct-action protests might be needed to draw attention to Publix’s stance on PrEP and pressure the company to amend its policies, as it is unlikely that the Georgia legislature will add the HIV-prevention medication to the state’s list of required coverage anytime soon.
Tucker, the law professor at Georgia State University, agreed that Publix’s policy is more susceptible to advocacy than a lawsuit. “I’m not sure it’s legally actionable, but that doesn’t mean it’s not reprehensible,” Tucker said of Publix’s denial to cover PrEP. “That doesn’t mean that it’s not a bad public relations story, that doesn’t mean it can’t be the focus of other campaigns to try to change it.”
[CORRECTION 1/31: An earlier version of this article incorrectly stated that the Fulton County clinic started over 400 people on PrEP. We have corrected the text to reflect that they have started 255 on PrEP.]
Ryan Lee is a writer based in Atlanta and a columnist for the Georgia Voice newspaper, which focuses on LGBT issues in the South.
The Elton John AIDS Foundation (EJAF), a leader in the global effort to end AIDS, today announced nearly $1.6 million in grants awarded in December 2017 to 26 organizations addressing the HIV/AIDS epidemic in critical and innovative ways. This final grant cycle brings EJAF’s total investments for 2017 to almost $9.5 million, and builds on the Foundation’s ongoing strategy to strengthen organizations doing essential work at local and national levels throughout the Americas and the Caribbean.
“The Elton John AIDS Foundation remains deeply committed to supporting organizations working to end the HIV/AIDS epidemic,” said EJAF Chairman David Furnish. “At a time when HIV transmission rates remain high for vulnerable populations, and funding for programs that advance the health and human rights of people affected by HIV/AIDS is being dramatically reduced, now is as critical time as ever to continue providing resources that help meet the needs of people affected by the disease.”
In this grant-making cycle, EJAF is continuing to prioritize marginalized populations who often face significant barriers to care and resources and have a uniquely heightened risk of contracting HIV: LGBT people, Black people, HIV-positive people in the criminal justice system, sex workers, and young people in the United States and Puerto Rico, Colombia, Jamaica, and Mexico.
“We believe it’s vital to invest in organizations and leaders working to address the unique needs of the communities they serve,” said EJAF Executive Director Scott Campbell. “Whether that means bolstering support for people who use drugs in Mexico or supporting state-level advocacy efforts in the U.S. South, aggressively investing in grassroots organizations is key to achieving an AIDS-free generation.”
Grants awarded as part of this cycle include:
Two new grants in Mexico that support HIV prevention, treatment access, and general health for people who use drugs in Tijuana, Mexico, and fund HIV-related peer support among women in Mexico City and Oaxaca.
One new grant in the Caribbean toward organizational development and capacity building for at-risk youth in Jamaica and the Dominican Republic.
Five new grants for state-level advocacy in Alabama, Florida, New Jersey, New York, and Tennessee to advance state policies and funding related to health care access and human rights.
Three new grants for national efforts, including a grant to the Harm Reduction Coalition to support harm reduction advocacy in multiple states. Grants will also go to the AIDS Institute and National Alliance of State and Territorial AIDS Directors for their work informing policy makers about the need and potential actions to sustain commitments for international and domestic health programs.
A complete list and descriptions of all 26 grants are posted at www.ejaf.org.
Health insurer Aetna has agreed to pay $17 million to settle claims that it breached the privacy of thousands of customers who take HIV medications.
Attorneys for the plaintiffs announced the settlement Wednesday in Philadelphia.
Court documents say the Hartford, Conn.-based company sent a mailing in envelopes with large, clear display windows that revealed confidential HIV information. The mailing was sent to about 12,000 customers in at least 23 states.
The settlement requires court approval.
Aetna says the settlement is part of its effort to rectify what it called an “unfortunate incident.” The company also says it’s taking steps to prevent a similar mishap.
Friends of the famed researcher announced her death on social media yesterday.
Activist Peter Staley said on Facebook: “My greatest AIDS hero died a few hours ago. Dr. Mathilde Krim, founder of amfAR, warrior against homophobia and AIDS-related stigma, dedicated defender of science and public health, and mother-figure and mentor to countless activists, will leave a deep hole in the continued fight against AIDS — a fight she dedicated her life to. She as 91.”
In Los Angeles in 1985, Elizabeth Taylor and Dr. Michael Gottlieb cofounded the National AIDS Research Foundation to research for a cure and help people living with HIV/AIDS. At the same, Krim established the AIDS Medical Research Foundation. These two merged to become amfAR, cofounded by Krim and Gottlieb with Taylor as its international founding chairperson.
With the success of amfAR, and as people with HIV began to live longer, Taylor established the Elizabeth Taylor AIDS Foundation in 1991 to focus specifically on funding organizations that cared for individuals with HIV or AIDS. Taylor sold her wedding photos to People magazine for $1 million and used the money in its entirety to open the doors of ETAF. To date, more than 650 organizations in 33 countries have been helped through ETAF’s funding efforts.
amfAR’s bio on Krim:
Soon after the first cases of AIDS were reported in 1981, Dr. Mathilde Krim recognized that this new disease raised grave scientific and medical questions and that it might have important socio-political consequences. She dedicated herself to increasing the public’s awareness of AIDS and to a better understanding of its cause, its modes of transmission, and its epidemiologic pattern. Dr. Krim also became personally active in AIDS research through her work with interferons—natural substances now used in the treatment of certain viral and neoplastic diseases.
In April 1983, Dr. Krim founded the AIDS Medical Foundation (AMF), the first private organization concerned with fostering and supporting AIDS research. In 1985, AMF merged with a like-minded group based in California to form the American Foundation for AIDS Research (amfAR), which soon became the preeminent national nonprofit organization devoted to mobilizing the public’s generosity in support of trailblazing laboratory and clinical AIDS research, AIDS prevention, and the development of sound, AIDS-related public policies.
Dr. Krim received her Ph.D. from the University of Geneva, Switzerland, in 1953. From 1953 to 1959, she pursued research in cytogenetics and cancer-causing viruses at the Weizmann Institute of Science in Israel, where she was a member of the team that first developed a method for the prenatal determination of sex.
She moved to New York and joined the research staff of Cornell University Medical School following her marriage in 1958 to the late Arthur B. Krim, a New York attorney, then head of United Artists Motion Picture Company and later founder of Orion Pictures. Starting in 1962, Dr. Krim worked as a research scientist at the Sloan-Kettering Institute for Cancer Research and, from 1981–1985, she was the director of its Interferon Laboratory. She now holds the academic appointment of adjunct professor of Public Health and Management, Mailman School of Public Health, Columbia University.
Dr. Krim is amfAR’s founding chair and was, from 1990–2004, the chairman of the board. She holds 16 doctorates honoris causa and has received many other honors and distinctions. In August 2000 she was awarded the Presidential Medal of Freedom—the highest civilian honor in the United States.
If you’re living with HIV, you’ve likely heard about HIV drug resistance. Maybe your HIV provider has even talked to you about HIV drug resistance testing. But what is drug resistance? How common is it, should you be worried about it, and more importantly—what can you do to prevent it?
HIV drug resistance is a problem because it means that the type of HIV you have is “resistant” to, or isn’t affected by, a particular type of HIV medication. Drug resistance can limit the treatment options that will work for a person.
In this article, we provide a low-down on HIV drug resistance, including what it is and how you get tested for it. We also have advice from HIV clinicians on prevention and what to do if you do develop HIV drug resistance.
What is HIV drug resistance?
HIV medications work by preventing the virus from replicating (making copies of itself). When a particular strain of HIV is able to make copies of itself, even in the presence of a particular antiretroviral, we say that it is “drug resistant.”
HIV drug resistance isn’t a blanket condition. People living with HIV may have one or more drug-resistant mutations that make them less sensitive to one or more antiretrovirals. For example, if people have protease mutations, their HIV is resistant to protease inhibitors, meaning that a drug like darunavir (Prezista), a protease inhibitor, may not work for them. People with reverse transcriptase mutations may be resistant to a drug like emtricitabine/TDF (Truvada), a nucleoside reverse transcriptase inhibitor.
Because antiretrovirals in the same “class” (for instance two different types of NNRTIs) prevent HIV from replicating in the same way, if the virus becomes resistant to one drug within that class, it can become partially- or fully-resistant to all drugs within that class. For example, a person that develops HIV drug resistance to Prezista may also be resistant to atazanavir (Reyataz), because they are both protease inhibitors.
How bad is drug resistance? Is it something I should worry about?
“Mostly no major harm is done if someone develops or even acquires drug resistant HIV. Usually there are other meds that will work,” said David Alain Wohl, MD, a professor in the Division of Infectious Diseases at the University of North Carolina at Chapel Hill. “But with more resistance comes fewer second chances and less flexibility. That means we may have to use drugs that are harder to take or have more side effects. In rare but not unheard-of cases, people run out of options.”
Fortunately, newer HIV medications are less likely to produce drug resistance mutations than older HIV medications.
“Today’s HIV treatments work, really well. Once common, HIV drug resistance has become a quite uncommon thing for patients taking modern medications, even among those with less than perfect adherence,” Benjamin Young, MD, PhD, senior vice president and chief medical officer of the International Association of Providers in AIDS Care (IAPAC), told BETA.
In addition, some of the newer drugs today are particularly resistant to resistance.
“Drug resistance is particularly uncommon among people taking first-line HIV integrase inhibitors. This appears to be especially true for dolutegravir (Tivicay), where only a single case of treatment-emergent resistance has been reported during initial treatment. With today’s treatment options, dealing with drug resistant virus is easier, with potent and well-tolerated second-line options,” said Young.
How do people develop drug resistance?
Acquired HIV drug resistance can happen when a person has HIV that is replicating (making copies of itself), but is also taking a particular antiretroviral medication. HIV can mutate “around” that medication. This will result in HIV being resistant to the medications and those medications now being ineffective. In most studies, more than 70 – 80% of people with virological failure develop acquired HIV drug resistance. (Keep in mind that once a person becomes virally suppressed, these drug resistant mutations are no longer an issue.)
Although acquired drug resistance can occur if a person does not maintain good adherence to their HIV medications, sometimes the drugs themselves or a combination of how a person’s body reacts to the drug can also cause drug resistance. Even if you maintain perfect adherence, you may experience poor absorption. This means that the drugs don’t get absorbed by your body easily and aren’t preventing HIV from replicating, which can cause drug resistance.
Sometimes, drugs with less than optimal pharmacokinetics can cause drug resistance. This means that the drugs aren’t effective because they aren’t moving efficiently and sufficiently within your body.
Transmitted HIV drug resistance occurs when a person with HIV who has never been on treatment before acquires a strain of HIV that is already resistant to one or more HIV drugs. Transmitted drug resistance, as the name implies, occurs when a strain of HIV with drug-resistant mutations gets transmitted from a person living with HIV to an HIV-negative person. The prevalence of transmitted drug resistance is estimated to be between 12% and 24% among people living with HIV in the U.S.
Pretreatment HIV drug resistance can occur before treatment is even started. This may occur if a person is exposed to HIV medications when they become infected with HIV. For instance, if a women is taking drugs for prevention of mother-to-child HIV transmission or if a person is taking pre-exposure prophylaxis (PrEP), and then that person becomes infected with HIV, it is theoretically possible for that person to develop drug-resistance.
It is rare for drug resistant mutations to develop from a person taking PrEP (remember, there is no risk of drug resistance if HIV infection is prevented). One review of PrEP trials using the medication tenofovir disoproxil fumarate (TDF) found that 0.1% of approximately 9,000 people taking PrEP developed TDF or FTC drug resistant mutations. (Most of the people in these studies who acquired HIV and had drug resistant mutations already were HIV-positive when beginning PrEP, and therefore should not have been started on PrEP.)
How do you prevent HIV drug resistance?
People living with HIV can prevent drug resistance by remaining on treatment and adhering to their medications. With current HIV regimens, “adherence” commonly means taking medications once a day. Proper adherence can also include taking medications at a particular time of day, as well as with or without food, or on an empty stomach.
“We need to ensure that people who start treatment can stay on effective treatment, to prevent the emergence of HIV drug resistance,” said Gottfried Hirnschall, MD, MPH, director of the WHO’s HIV Department and Global Hepatitis Program.
“The best thing a person living with HIV can do to prevent drug resistance is to take their meds every day,” Wohl reiterated to BETA.
“The medications we have now to control HIV work incredibly well and are usually [taken] once a day. Plus, almost everyone tolerates them,” Wohl said.
Will I get drug resistance if I miss a dose?
In general, if you forget to take a dose, take your medications as soon as you realize you’ve missed the dose. However, if it’s almost time for your next dose, just wait until your next dose and continue your regular routine. Most important, do not take a double dose; you cannot make up for a missed dose that way. Although it’s important to take your HIV medications every day, you likely will not develop drug resistance from missing just one medication dose.
What if I keep missing doses?
Wohl explained that people most commonly miss antiretroviral medication doses because of events in their life that cause chaos or get in the way of pill-taking. It’s not because HIV antiretroviral pills are harder to take than other pills or because they cause more side effects.
“Be honest with [your] provider and tell them how often doses of meds are being missed and why. Asking for help with adherence earns you cred and lets [your] provider find ways to help. Pill boxes, setting a cell phone reminder, getting a family member or friend to help are all examples of interventions that could support medication taking,” Wohl said.
Your provider is there to help, and wants to see you do well. If you have any issues with your medications, it’s best to talk to your provider about it right away. If you’re uncomfortable with your current medication regimen, your provider might be able to work with you to find one that’s a better fit.
Wohl said that providers can also provide medications that are less likely to lead to drug-resistant HIV. “For some regimens, the virus has to do many more tricks to become mutated and therefore less susceptible to the drug. These can be used in those who may be [less adherent] with their meds,” said Wohl.
What is drug resistance testing?
There are two types of resistance tests: genotype testing and phenotype testing.
Genotype tests look for drug resistance mutations in relevant genes of the virus. Most genotype tests involve looking at the reverse transcriptase (RT), protease (PR), and integrase (IN) genes to see whether there are mutations that are known to be associated with drug resistance.
Because these genes are essential for HIV to take over cells and replicate, these are the same genes that the different classes of drugs take action against to stop HIV from replicating. That’s why, for instance, two of the drug classes are known as protease inhibitors and integrase inhibitors, because they inhibit the protease and integrase genes.
Phenotype tests measure the ability of a person’s virus to replicate in different concentrations of antiretroviral drugs. This test is typically done in individuals who have been on treatment and who have more complicated drug resistance patterns.
Genotype testing should be done for all people living with HIV before they start treatment. However, in some special cases, such as for pregnant women or people with very recent HIV infection, treatment should not be delayed while waiting for resistance testing results; treatment regimens can be changed once results come back.
How do you know if you’ve developed resistance?
The U.S. Department of Health and Human Services (DHHS) HIV treatment guidelines recommend HIV drug resistance testing when you first get into care, which is why HIV providers test people living with HIV for drug resistance before they start them on treatment. Your doctor should already know to give you a test before choosing a regimen, but if not, you should ask for it.
“It’s also important that baseline drug resistance testing is performed, especially for anyone starting on non-nucleoside containing regimens,” said Young. “That information can help guide decisions about what treatments to start,” he said.
It’s important for your HIV provider to know if you have or develop any drug resistance mutations, which is why it’s important for you to complete and follow-up with clinical and lab monitoring plans.
If you’re already on treatment, and you suddenly experience a detectable viral load, that doesn’t automatically mean your treatment regimen is failing or that you have drug resistance. This may be just a viral load blip, and continuing to take your HIV medications will bring your viral load back to undetectable. You and your HIV provider will make a decision based on your viral load and specific case.
Generally:
If your viral load goes above 1,000 copies/mL, drug resistance testing is recommended.
If your viral load goes above 500 copies/mL, but remains below 1,000 copies/mL, drug resistance testing may not be successful, but is still worth considering.
If your treatment regimen is not lowering your viral load as quickly as it should be, then the guidelines also recommend drug resistance testing.
What should people living with HIV do if they develop drug resistance for the first time?
If you develop drug resistance, Wohl advised taking the time to figure out if something went wrong, and to try to keep it from happening again.
“Was adherence difficult? Did drug supplies run out? Addressing the underlying cause while moving on to second-line treatment is important to minimize the risk of failure of the new regimen,” said Young.
“Get help from your clinic and your support network, if possible. If missing doses was the issue, it can be difficult to change the things that made it hard to take meds every day. But you have to try,” said Wohl.
“The good news is that today’s second-line antiretroviral treatments can be both very effective in suppressing resistant virus, and still be very well tolerated. Irrespective of what type of first-line treatment was used, second-line use of integrase inhibitors or boosted protease inhibitors can be successful,” Young added.
What about for people who have multi-drug resistance?
Fortunately, multi-drug resistance is uncommon, said Wohl. “And even in these folks, some meds may work,” he said. “Resistance is not always all or nothing. That means the resistant virus may still be affected by a med, just not as much. Combining meds with partial activity can work. Also, new drugs are still coming out that can work against drug-resistant strains.”
“The situation for patients with multi-drug resistance depends a lot on just how many drugs (or families of drugs) that the virus is resistant to,” explained Young. “For most people, the careful use of drug resistance tests can help sort out what medications the virus retains sensitivity to. If a regimen can be constructed with two or more active drugs, then viral suppression is likely—though adherence to the next round of treatment is perhaps even more critical than before.”
But what about some of the worst-case scenarios? Is there still hope if you exhaust most or all of the treatment options?
“For patients with only one, or no active drugs on the resistance tests, the situation is more serious. For these individuals, we’ll consider how drugs still in clinical trials may work. Indeed, several new classes of medications (maturation inhibitors, or monoclonal antibodies) may still suppress the virus,” said Young.
Takeaways for avoiding drug resistance
Before starting treatment, learn everything you can about your available treatment options. Knowing when and how often you need to take a regimen will help you make a better-informed decision about which regimen will work best for you.
Work with your provider to choose a strong treatment regimen. This goes along with learning everything you can about your treatment options. But sometimes choosing a potent regimen does a great deal to prevent drug resistance. Some of the newer drugs, particularly the integrase inhibitors, have a higher barrier to resistance and are more forgiving if you miss a dose.
Good treatment adherence is key in preventing drug resistance. Follow the dosing instructions carefully and take your medications as prescribed. That includes taking the right amount of pills, at the right time and with the right frequency. Don’t miss doses. Set a reminder or system that works best for you, so you will remember every day to take your pills. If you do miss a dose, take it as soon as you remember; but if it’s almost time for your next dose, simply wait for your next dose. Do not double dose.
Talk to your doctor and communicate honestly. Let them know if you’re having trouble taking your medications and work on ways to improve.
Monitor your health. How is the treatment working for you? How does it make you feel? Keep track of your lab numbers, including your viral load and CD4 count, and stay in constant communication with your HIV provider about your health.
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Warren Tong is a freelance health and science journalist, with an extensive background writing about HIV and hepatitis C. Follow Warren on Twitter: @warrentong https://twitter.com/warrentong.
In the U.S., the CDC estimates that more than 
HIV drug resistance is a problem because it means that the type of HIV you have is “resistant” to, or isn’t affected by, a particular type of HIV medication. Drug resistance can limit the treatment options that will work for a person.