Zika in Nicaragua: Racing to Understand the Unknown

Matthew Collins, MD, PhD, is an Infectious Diseases Fellow at UNC and is studying Zika virus in Nicaragua.

Matthew Collins, MD, PhD, is an Infectious Diseases Fellow at UNC and is studying Zika virus in Nicaragua.

Matthew Collins, MD, PhD, is an Infectious Diseases Fellow in the Division of Infectious Diseases at the UNC School of Medicine. He is working with collaborators across UNC as well as colleagues in Leόn, Nicaragua, to define the epidemiology of Zika virus as it emerges in Nicaragua. A large portion of these studies are designed to answer questions surrounding the risk for in-utero transmission and adverse birth outcomes resulting from Zika infections in pregnant women. He traveled to Nicaragua in March and August of 2016. Below he shares the questions left to answer and why there is cause for optimism.

I woke up one morning in early March to a pleasantly warm tropical sun (read: hotter than 75○F at sunrise on the way to 97○F). After a breakfast of beans, plantains, and pineapple juice, I found myself at a small, wooden classroom desk. I was served potent indigenous coffee in a black mug bearing the unmistakable Playboy bunny icon, and scholarly men began to discuss with us in Spanish. . . what else? SEMEN. Semen and its role as a vehicle for transmission of viral infections. What the heck is going on and how did I get here?

It was March 2016, and a few weeks earlier, World Health Organization Director-General Margaret Chan had declared that the emerging Zika virus epidemic in Latin America was a public health emergency. We had come to León, Nicaragua, to meet collaborators and discuss the role our respective institutions may play in the international response to Zika.

A poster from the Ministry of Health in Nicaragua reminds residents to do their part to curb mosquito breeding, saying "prevention is in your hands."

A poster from the Ministry of Health in Nicaragua reminds residents to do their part to curb mosquito breeding, saying “prevention is in your hands.”

I sipped my scandalous café con leche and blinked hard. This was real, and I thought to myself, “I can do this job.”

Living the dream. It’s poor fodder for personal statements, but I never really dreamed of becoming a physician-scientist. Meeting several young, aspiring doctors and principal investigators on UNC’s campus reminds me what a privilege it is to partner with the sick or susceptible in improving their health, to identify critical questions and to set about building answers. It’s a mixed bag with Zika work. None of us hopes for tragedy or global health crisis, for such scourges to be disproportionately visited upon disadvantaged portions of the population as so often happens. But, as clinicians and researchers, we do find satisfaction in demand for our particular training and skills, and we typically seek to work on problems that pique our intellectual interest as well as offer some benefit to society. Immunology, foreign language, infectious diseases, travel – the focus of my fellowship is conveniently unfolding as an amalgam of my personal and professional interests. I love going to work (almost) every day, being around smart and caring people, and feeling like part of a team with a worthy mission. It is sometimes as if I’m living a dream.

However, the Zika epidemic is a nightmare for so many, particularly women of childbearing age – the burden placed on them and their partners cannot be overstated.

There had not been much Zika reported in Nicaragua yet prior to our initial visit in March, but it was definitely coming if not there already. By the time of our second trip at the beginning of August, hundreds of cases were known, including many in pregnant women, though no adverse fetal outcomes or Guillain-Barré syndrome, a neurological disorder, had been announced. The virus itself is not that scary on the surface, less severe than the common cold in the majority of cases – but the exceptions have come to define the epidemic, and it is the unknown that is always especially problematic for our race. Only a minority of infected individuals manifest any symptoms, a short-lived itchy rash, fever, and/or eye irritation. A smaller fraction still suffers the most concerning sequelae: neurologic conditions such as Guillain-Barré syndrome and birth defects like microcephaly. Why does it only happen to certain people? How often is a developing fetus affected when the mom is infected by Zika? What are the risk factors? All of these remain unclear.

consulta externa

The entrance to HEODRA Teaching Hospital in León, Nicaragua. The hospital is affiliated with the medical school at UNAN-León, UNC’s partner in Zika research.

Despite the gravity of the situation, there is also cause for encouragement. Researchers around the globe have begun to fill in large gaps in our understanding of Zika virus. At UNC, one can find movement on many fronts: basic virology, translational immunology, ethics, epidemiology, pathogenesis, pharmacology, and more. Our partners in Nicaragua are bringing their own insight, expertise and leadership to the greater effort.

As we left León, there were many banners celebrating Nicaragua’s national poet Ruben Dario, who famously wrote “you are a universe of universes, and your soul a fount of songs.“ There are so many possibilities. We may contribute to the development of a field-ready serodiagnostic, or discover a chink in the virus that can be targeted therapeutically. Ultimately, Zika is the current example in a pattern of emerging pathogens in an increasingly urbanized planet, and approaching Zika in a way that enhances systems for managing the spread of novel infectious diseases will only help for the next time around. Regardless, I’m happy join many at UNC, UNAN-León, and elsewhere to invest in meaningful and much-needed work. Hopefully the epidemic will be curbed, and those affected or at risk can more readily realize, all the worlds they are.

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International AIDS Conference Reveals Faces of HIV

Angela Wahl, PhD

Angela Wahl, PhD

Angela Wahl, PhD, is a Research Assistant Professor in the Division of Infectious Diseases at the UNC School of Medicine. She specializes in HIV research. She attended the International AIDS Society meeting in Durban, South Africa, in July and shares her reflections of the conference.

As a basic scientist in the HIV field, I am fully aware that young women living in resource poor countries like South Africa are at the center of the HIV epidemic. In sub-Saharan Africa, over half of all HIV-infected individuals are women and HIV/AIDS is the leading cause of death in young women. Young women in South Africa are particularly susceptible to HIV infection due to culture and gender inequalities. While I often cite these facts in manuscripts and grants, it’s not my everyday reality. I have been privileged to grow up and live in the United States, a country with laws that protect the rights of women and a culture that, for the most part, tries to treat women equally. For me, attending the International AIDS Society (IAS) AIDS 2016 conference in Durban, South Africa, this year was not only an opportunity to present my research, it was an opportunity to learn more about the young women that are at the forefront of the HIV epidemic.

IAS AIDS conferences are unlike any other conferences that I have attended. Usually the most provocative moments at conferences involve presentations of controversial data but at IAS AIDS conferences it’s not uncommon for protesters to take over the stage. This year, I was particularly struck by a group of young African women that took the stage as the Minister of Health of South Africa began to introduce a speaker. Their goal was to draw attention to the alarming number of young girls in South Africa that miss school every week because they don’t have access to sanitary napkins. In addition, they demanded increased access to condoms to help prevent the spread of HIV to young women. Another morning I sat in a large room with thousands of other conference attendees and when the speaker asked those who are taking antiretrovirals in the audience to raise their hand, both women sitting on either side of me raised their hands with tears in their eyes.

Protesters at the International AIDS Society meeting in Durban, South Africa.

Protesters at the International AIDS Society meeting in Durban, South Africa.

The concern for the young women of South Africa and their increased susceptibility to HIV infection was not lost outside of the conference center. After learning that I was attending the AIDS conference, my taxi driver explained to me how wealthier older men in Durban pressure young women into having condom-less sex after buying them gifts. This scenario was supported by data presented at the conference which revealed that young African women tend to acquire HIV from middle age men. He also told me about the young women from rural areas who move to large cities like Durban to become sex workers so that they can help feed their families back home.

Although this isn’t the first AIDS conference that I have attended, this year’s conference in Durban truly gave me a face for the HIV epidemic for the first time. It also gave me hope after seeing that there are young women in South Africa who are defying cultural norms and demanding reform that will help empower women to end the cycle of HIV infection and after meeting men who recognize the particular vulnerability of young African women to HIV.

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Confidential Partner Notification

Steve Beagle is a Disease Intervention Specialist.

Steve Beagle is a Disease Intervention Specialist.

Steve Beagle is a UNC Field Coordinator and Disease Intervention Specialist for the North Carolina Department of Health and Human Services eHealth Services. He wrote the following blog post about confidential partner notification for Adam4Adam, an online dating website designed for men to meet other men.

I wanted to say “Hello” and introduce myself to The Community.

My name is Steve and I have worked in public health for almost 16 years.

I am a Disease Intervention Specialist (DIS) in Raleigh, NC. Other states have DIS, and other states may refer to their DIS as CDS (Communicable Disease Specialists), PHAs (Public Health Advisors), or PHRs (Public Health Representatives). A running joke is that we are the “Sex Police.” I hope I can convince you that we are not.

When I applied for this job, I did not know that this job existed. I was not surprised, as I understood the need for the job. The job description mentioned educating people about STDs and drawing blood. I figured since my degree was in education and I had learned how to draw blood on dogs and cats (during my time as a veterinary technician) that I could do this job.

The job centers around confidential partner notification, that is, notifying individuals of their exposure to Syphilis and HIV, though some DIS also do confidential partner notification for Gonorrhea and Chlamydia exposures. You may see partner notification referred to as “partner services” or “contact tracing” within the literature.

The way the process works is when someone tests positive for an STD/STI (Sexually Transmitted Infection is the more modern term for Sexually Transmitted Disease), a DIS meets with them to ensure that they received adequate treatment for the infection, to answer any questions about the infection, and to ensure that the sex and needle sharing partners of the person are informed about the exposure, since one of the partners transmitted the infection to the person with the infection, and the person with the infection may have unknowingly transmitted the infection to their partner(s).

Some believe the person that tested positive for the infection has a moral and ethical obligation as a human being to inform their partner(s) about the exposure. Others believe that we are all responsible for ourselves and that the assumption is we are aware of what could happen as it relates to our health following a sexual encounter. Feel free to read a detailed discussion about this topic.

There are three ways in which partner notification may occur. The first way is when the person that has the STI informs their partner themselves. A partner may be more likely to get tested following an exposure if the person with the STI informs their partner. The DIS in this case makes a cooperative effort to ensure that the partner receives adequate testing and treatment depending upon the type of exposure based on CDC Guidelines.

The second way is when the person that has the STI prefers that the DIS informs the partner of the exposure, confidentially. This means that the DIS cannot tell the partner who gave them the partner’s identifying and locating information. People who test positive for STIs often feel embarrassed or guilty when they have been diagnosed with an STI. To preserve their anonymity, they choose not to inform the partner themselves but still understand that the partner should know about their exposure and have an opportunity to receive free testing and treatment following the exposure.

The third way is when the person that tested positive for the STI meets with their partner and the DIS together. The person or the DIS can inform the partner about the exposure, and the DIS can be on hand to answer any questions the partner may have about the infection or exposure. The DIS may also be able to offer testing immediately, on the spot, to the partner, or transport the partner to a health department or clinic for testing and treatment whenever necessary.

DIS acknowledge that there are times when people do not know the names of their partners, or may only know a screen name for their partner. Since 1999, certain states and areas across the US have decided to try and reach those partners as well. Adam4Adam.com was one of the first sites to devote profiles to Health Counselors (some of which are DIS) for this purpose.

In closing, I hope that I have been successful in convincing you that DIS are not “Sex Police.” We understand that infections are transmitted when people have sex (even when they are using protection). DIS realize that we must not focus on “who gave it to who,” rather, the health and well-being of everyone within The Community.

For free, confidential testing near you, click here.

For HIV care and related services, click here.

Be well.

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Blog: Semester Abroad Allows UNC Junior to Launch Social Media Health Campaigns in London

Ben Lineberger is a junior at UNC majoring in journalism and public relations. He is also a web consultant for UNC’s IGHID. This past fall semester, Ben studied in London and interned with National AIDS Trust or NAT. NAT is the United Kingdom’s leading charity dedicated to transforming society’s response to HIV through fresh thinking, expertise and practical resources. Ben spent the semester working with NAT on a number of educational campaigns, including having a kissing Booth in Soho Square on Dec. 1 for World AIDS Day in response to NAT research that shows 16 percent of people wrongly think you can get HIV from kissing, up from 4 percent 10 years ago. Below, Ben shares his thoughts on how far the UK has come in HIV prevention and treatment and where it still needs to focus.

During my time interning at NAT (National AIDS Trust) in London, I’ve learned so much about the whole HIV sector and seen a glimpse of what it’s like to live with HIV. I’ve been the communications intern at NAT this past semester and the whole experience has taught me more than I ever expected. I’ve not only gotten to do more for an organization in just a few months than I have in any previous internship, but as an intern I’ve participated in meetings with top ad and PR agencies, helped build a campaign, and performed research that’s informed our press releases and blogs. But what I’ve been most surprised by is how wrapped up in the fight against HIV and HIV stigma I’ve become. Here’s a bit about what I’ve learned about HIV in the UK:

UNC Journalism and Public Relations Major Ben Lineberger, third from right, with NAT staff and volunteers at a fundraising event on Bonfire Night in London.

UNC Journalism and Public Relations Major Ben Lineberger, third from right, with NAT staff and volunteers at a fundraising event on Bonfire Night in London.

Quality of life with HIV in the UK has seen marginal improvements in the past few years. Though it’s come quite a ways from the 1980s and 90s, there’s still a lot of work to do in terms of making life better for people living with HIV. In regards to social climate and public attitude toward HIV, though there have been recent improvements in policies concerning healthcare workers with HIV, a stigma still exists that makes it hard for folks to be open about their status. People face misunderstanding about their status, with a lot of people still thinking they can get it from kissing or sharing food. In addition, only recently have healthcare workers with HIV been able to perform exposure-prone procedures provided they’re on treatment. This policy is actually safer for patients, as undiagnosed HIV is actually more dangerous than when someone knows they have it and are on treatment. Discrimination, both overt and subtle, minimizes HIV as a serious issue and makes it difficult for people to get the facts about transmission and sexual health. This contributes to the growing problem of late diagnoses, as last year saw 40 percent of adults diagnosed at a late stage, after treatment should have begun. And with 72 percent of new diagnoses last year being among gay and bisexual men and black African heterosexuals, it’s evident that both prevention and testing efforts must be ramped up in the UK.

Clinically, more efforts must be made to strengthen prevention measures. PrEP, which stands for pre-exposure prophylaxis, has been found to almost always be effective at preventing uninfected individuals from contracting HIV if taken correctly. But in the UK, it’s unavailable on the National Health Service (NHS), which means almost no one can get it unless they have enough money to order it from overseas. Though treatment for those who already have HIV is made widely available in the form of ART (antiretroviral therapy), there is still a serious problem with the way HIV prevention care is managed, as the NHS is essentially failing those most at risk of contraction.

Another side of the issue with HIV care in the UK is lack of knowledge, stemming not only from discrimination in society, but also from the way sexual health is taught in UK schools. The curriculum for sex and relationship education, or SRE, doesn’t include any compulsory lessons on same-sex relationships. This means young people who identify as anything other than heterosexual aren’t getting vital, reliable information about their bodies and sexual health, which is leading to ignorance surrounding HIV, not to mention other risks that come from sex. This is another type of prevention that the UK is failing to ensure is working properly, and can only be corrected if SRE is free from discrimination as well.

Ben participating in the social media component of NAT's World AIDS Day campaign #RethinkHIV by painting a red ribbon on his lips.

Ben participating in the social media component of NAT’s World AIDS Day campaign #RethinkHIV by painting a red ribbon on his lips.

Not all is going badly, however, as there are many HIV-related successes. The UK is world-leading on treatment, as anyone living with HIV can access ART for free on the NHS, meaning that there’s an extremely low death rate from HIV and people can manage their health and have full life expectancies. ART can also help people achieve undetectable viral loads, which enables them to have sex with their partner without risk, and to reproduce without risk of passing it on to their children as well. Additionally, as the population of people living with HIV is aging – one in four are over 50 – NAT has developed new guidance for healthcare workers. Unfortunately, some parts of the health care sector don’t have up-to-date information on HIV and how it’s transmitted, which can lead to discrimination and insensitive treatment for the aging population. The new guidelines advise on how to be receptive and judgement-free, as well as maintaining confidentiality. There have been a great number of improvements, but much more has to happen before people living with HIV have the best quality of life possible.

My experience at NAT has been especially educational because I’ve gotten to work alongside a brilliant policy team that helped the communications team be fully informed for all the decisions leading up to our campaign. Being updated on all the policy related to HIV has elevated my knowledge on the subject and helped me really understand all sides of the issue. I didn’t expect to be so moved by all the negative things said about people living with HIV, but once I realized how harmful the stigma still is I became really invested in fighting it. I’m lucky that I’ve gotten to be a part of a team that’s so focused on combatting unfair and uninformed stigma and discrimination, and I’m grateful that each part of the internship has taught me something. And though there are still faults in the UK’s policies and attitudes regarding HIV, London has been an amazing place to live and study for a semester and I’m really happy I got to be here.

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Students Reflect on Training with Top Faculty from the US and UK to Improve Sexual Health in China

Bill Miller, MD, PhD, MPH, leads a training in manuscript writing.

Bill Miller, MD, PhD, MPH, leads a training in manuscript writing.

Friday, Sept. 18, 2015
Jessica Mao is a medical student at UCLA, where she just completed her third year of medical school. She is spending a year in Guangzhou, China, as part of the Doris Duke International Clinical Research Fellowship to work with UNC Project-China under the direction of Joe Tucker, MD, PhD. She will spend her year working with the Social Entrepreneurship for Sexual Health (SESH) group promoting HIV prevention and awareness.

Today was the kickoff of our South China-UNC STI Training Course & Research Workshop (try saying that 10 times fast!) This event has several purposes: 1) to bring together the researchers in China with the mentors from the US and the UK 2) to provide some training for the Chinese researchers 3) learn about the research being conducted overseas and 4) to update the mentors regarding our progress and future directions.

We started out the morning with a session by two UNC librarians, Jennifer Walker and Mellanye Lackey, where we learned how to better search medical literature databases and how to use Endnote. You would think that after four years of college at Johns Hopkins and three years of medical school, I would know how to search a database, but I still picked up some useful tips and tricks that will make my life so much easier in the future. Speaking to some of my Chinese colleagues, it seems that they are not always taught how to search English databases, and have been muddling along as best they could. This session was immensely helpful for them. I only wish that there had been a similar session regarding searching Chinese databases! I suppose there though, my biggest hurdle is the fact that everything is in Chinese…

Our next session was an informative session by William Miller, MD, PhD, MPH, regarding manuscript writing. We went over the basics – what goes into the introduction, methods, results, and discussion sections. While this was a topic I know well, it made me happy to think about the scientific method that I had been learning since 4th grade (If I add vinegar and baking soda into a papier-mâché volcano, then it will explode).

We took a break for lunch and for a rest. In China, it is customary that the hours of 12-2 p.m. be taken as a rest. The majority of people will take a nap (not unlike a Spanish siesta) after eating lunch. As an American, this is new for me, but even if I do not sleep it is nice to just have some time for myself.

We continued on in the afternoon with more manuscript writing. In this session, we talked about actual writing style rather than just the content. We discussed common grammar mistakes, editing out unneeded words and phrases, and rules for clearer writing. I am fairly confident I have neglected several of these in writing this post, so my apologies Dr. Miller! This was then followed by some practice using an actual work-in-progress by members of our group here. While I like to think that I am not a bad writer, the truth is that my degree is in engineering and the last time I wrote anything literary was probably high school. This was a good chance to practice only writing skills in an interactive and engaging way.

All in all, day one of our workshop was a success. During an initial cursory glance through the schedule, I felt that many of the activities were more geared towards my Chinese co-workers rather than towards myself. I was pleasantly mistaken though, and I think this just goes to show that there is always something to learn and some way to better myself. My colleagues, too, found the workshop immensely useful for their work. Our thanks to the UNC librarians and Dr. Miller for their time!

Coming up next, day two of the conference!

Saturday, Sept. 19, 2015
Krystal Zhang is the research assistant from SESH RO1 research team. It has been six months since she came on board with SESH. She has been involved in the qualitative research on contest evaluation as well as helping out some of the SESH organizational work. Krystal came from a background of anthropology, which often offers the team some unique ways of seeing things. As one of the “seniors” in the team (some of the members just newly arrived), she is very proud of what SESH has been working for while eager to learn more from the experts in the workshop.

It is the 7th day of work in a row for some of us because we have been busy preparing for the SESH STD Workshop, which JUST started today! The morning session was kicked off with a series of amazing talks given by renowned public health professionals from China, UK and US. Myron Cohen, MD, the Associate Vice Chancellor of Global Health at UNC Chapel Hill, who has been working for China HIV/STD projects for years, gave a presentation on current HIV prevention and cure worldwide. He made a joke saying that he was recording for VOA special English by speaking very slowly, but clearly in order to make the lecture more approachable to the Chinese audience. We all broke into laughter because it did sound like an audio from VOA Special English Health Report. His idea about cures should serve as the fundamental way of preventing HIV really got me thinking: for the SESH team, our current goal is to cut the transmission through increasing condom use and screening. Does that mean we still have a long way to go?

Kevin Fenton, MD, is the Director of Health and Wellbeing at Public Health England.

Kevin Fenton, MD, is the Director of Health and Wellbeing at Public Health England.

Kevin Fenton, MD, is the last speaker in the morning session; however, I can resonate with his talk the most. In his talk, he showed us some of the methods that his team and other health care providers have been using, with the help of mobile apps. When I was still going to school in the UK, I noticed that the UK has an amazing National Health System (unfortunately the government has cut down the budget for health lately). Although Britain is a country that has a long history, they are really good at cultivating innovations and incorporating different sectors in the society. Dr. Fenton demonstrated some of the programs they have combining health and mobile apps, which was truly inspiring and intriguing. In his talk, I found out that the clinic Bupa at the corner of my apartment back then has opened their own mobile app to connect people you know and engage them in a healthy life style.

The SESH team would give presentations on our work for the afternoon session. We already gave presentations once for the World Health Organization TDR meeting two weeks ago, but in front of all these professors? I couldn’t help but feel nervous. Fortunately all the presentations went very well, during which intense, but thought-provoking discussions highlighted the event. It is genuinely lucky to have all the professors here to reflect on SESH’s previous work and explore potential projects with us. Having been involved in the condom contest and photo contest, we received some awesome ideas on how we could improve our contests from the perspective of the audience while the professors gave us comments based on a wider spectrum – the general public health. I hope with all this feedback our next contest will be even more successful!

It is the second day of the workshop, and I already miss everyone and the intense discussion!

Sunday, Sept. 20, 2015
Lulu Qin is a medical student at Case Western Reserve University, where she just completed her third year of medical school. She is spending a year in Guangzhou, China, as part of the Fulbright-Fogarty fellowship to investigate HIV self-testing under the direction of Joe Tucker MD, PhD.

JessicaMaoSESHConfCohenWEB

Joseph Tucker, MD, PhD, seated second from the left, leads UNC Project-China. Myron Cohen, MD, standing, is the Director of UNC’s Institute for Global Health & Infectious Diseases, and he first began working in China in 1989.

During the third and final day of the South China-UNC STI Training Course & Research Workshop, we saw presentations about various projects. First, from the SESH collaborators from the Shandong CDC (Wei Ma) introduced some SESH projects that were happening in their city, as well as hopes for the future with SESH’s research support. Their city is the site from which a marketing-derived (rather than crowdsourced) video about condom use was made. Conference attendees debated about their thoughts regarding the differences between a professional video and a crowdsourced video, will this new approach work?

Next, Professor Kevin Fenton from Public Health England presented his most recent project, Health X. As Director of Health of Wellbeing, Dr. Fenton is responsible for the design and delivery of national health and wellbeing programs – a hefty charge to say the least. Towards this end, he piloted a nationwide contest to create a mobile app that promotes public health – be it eating better, exercising, or managing chronic diseases. The ultimate winner, by a group called Fee Fi Fo Fit, was an app that promoted family’s to walk around the neighborhood together in search of certain landmarks that earned them rewards.

Finally, the morning ended with Dr. Joe Tucker providing an overview of SESH’s future directions. Namely, after pilot testing the concept of using crowdsourcing to create relevant public health messages, the next step would be to conduct randomized control trials to evaluate the effect of such an intervention. Conference attendees generated lots of feedback and discussion about how best to proceed next. The end goal is to create an efficacious and cost-effective tool that has the potential to have lasting impact on sexual health in China.

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Nurse Practitioner Tackles Ebola in Liberia & How to Articulate the Magnitude of the Experience

UNC's Chris Evans, RN, ANP,BC, left, worked with Physician Assistant Sam, Senior Site Research Coordinator, on Ebola in Liberia.

UNC’s Chris Evans, RN, ANP,BC, left, worked with Physician Assistant Sam, Senior Site Research Coordinator, on Ebola in Liberia.

Chris Evans, RN, ANP-BC, works in UNC’s Division of Infectious Diseases. He traveled to Liberia to conduct research into treatment of the Ebola virus from March-June 2015.

4.0L V6 with more than 245,000 miles. That’s what my Jeep Cherokee has on it. I’ve had it for more than 10 years. A few weeks ago it broke down off of highway 40 near the RDU airport exit, complete with sound effects and pyrotechnics. It happened not long after I returned to the States. Its engine is beyond the practical scope of repair, so I’m going through the not-so-fun time of buying a car. I’ve test driven most every small truck and SUV out there and have had a fair amount of talk time with car salesmen while we take off on highway 40 and 540 to get the cars up to speed. One particular night I finally test-drove a car I had been eyeing for a while.

While cruising around Apex and Cary, still trying to adjust the seats and mirrors, I made small-talked with the salesman. He asked what I did. I explained that I was a nurse practitioner with UNC, squeezing in details between hearing about the features on the car.  After hearing about the 9-speed gear shifting I mentioned that my job had afforded me the opportunity to go to Africa.

“Where at?” he asked.

“Liberia, it’s in West Africa,” I said.

“What did you do there?”

“I helped with the Ebola efforts.”

“Oh,” he replied, followed by a half-joking, half-serious, “you didn’t bring Ebola back with you, did you?”

“No.”  We laughed it off and began talking about more features of the car.

I’ve mentioned it a few times to a few people that I’ve served in Africa, and I often find myself erring on the side of not wanting to go on in very much detail; as a generality, I don’t bring it up at all. It’s not that I don’t have anything to say; it’s just a very big story to tell, which is hard to sum up in the time it takes to get a car up to 60 mph. It’s also a story that can’t be separated from the dire reality that comes when working within a region of the world that has experienced a humanitarian crisis. It’s one thing to see it on CNN; it’s another to be there on the ground. I must’ve even tried 25 times by now to sit down and write this post, but I keep pausing before I start, pausing in the middle, pondering how to pick the best words to accurately reflect the magnitude of what has happened “over there.”  I have a finite amount of time to tell a seemingly infinite story.

As part of the continued research efforts guided in large part by UNC’s David Wohl, MD, and Billy Fischer, MD, I spent three months in Monrovia, Liberia. There, I worked at ELWA hospital providing support for the research efforts alongside the Liberian Ebola fighters and missionaries who served faithfully in the arena of chaos…they are all brave-hearted individuals with epic life stories.

ChrisEvansLiberiaStigmaTagWEBMarch 9th began with me eating airline food somewhere over the Atlantic aboard a Brussels Airlines flight. It ended with me weary-eyed stepping off of the plane, and once out of the airport, taking my first step onto the red dirt of Liberia. As I stepped on to Liberian soil I left behind all hand-to-hand contact and traded it in for fist and elbow bumps (the new custom to reduce Ebola transmission).

Each day was so dynamic, had so much to take in, but it didn’t take long before it felt like home, before the Liberians and missionaries felt like family. It was clear from the outset, this land is special. No, this isn’t the land of national parks sprawling with lions and elephants.  This is the land of community, sprawling with people.

As the sun begins to rise in Monrovia, the capital city on the coast, the fishermen begin working as large teams to push their boats out to sea. No motors here, just manpower and teamwork. They power past the breakers that stand up tall and curl over for the Liberian and ex-pat surfers. They’ll use their seemingly endless nets to bring back some of the freshest fish, crabs and lobsters you could imagine; these will get sold by locals who will carry them atop their heads in large buckets.

Each morning started with breakfast at our hotel. James was the hotel chef, a proud husband and father who walked 20 minutes from his home to catch a motorcycle taxi for an additional 50 minute ride to get to work. I would always place an order for three scrambled eggs and he would reply, “ahh, three eggs scrambled, yes.” His upbeat personality was always an encouragement during the early morning starts. His upbeat personality became so cherished towards the end of my stay when he also shared how people along the road would try to cut him with broken bottles during his trek to work in 4 am darkness to try and get what little money he had. And to see his iron will to strive for the future success of his children would make anyone sit up a little straighter on the job.

ChrisEvansLiberiaChildrenSchoolLineWEBAfter eating quickly we then met our driver, Emmanuel. He’s a young twenty-something with a muscular build who wants nothing more than to be a U.S. Marine. Our team (the ex-pat half) packed in to his Pathfinder and made the one-mile trip over to ELWA hospital. Traffic moved slowly while motorcycles leapfrogged cars with any gap they could squeeze into. Alongside the road it was common to see children lined up in their school uniforms facing the Liberian flags being raised in the courtyards, local vendors selling everything from phone scratch cards to food to cement bricks, children pumping water from wells, chickens scratching at the ground, and dogs running around playing as dogs do. The exhaust from the traffic quickly builds up with the rising of the sun. Horns are used less as a sign of anger and more as a way of life. Need to get someone’s attention on the road…horn. Horns, all day, every day. Junctions were also packed with people waiting to catch rides from anyone who had room to pick them up. Different hand waves are used to signal how far down the road you need to go; and once you knew what to look for, you could read the hand waves pretty easily. Upon reaching ELWA junction, we made a quick left turn and pulled up to the security guard who would let us in the gate. And while it’s a gate for cars, the compound is wide open to pedestrian traffic. But before entering the gate we would always make a glance to the left to wave at Tommy who both lived and worked just outside the gates. Always with a smile on his face, he made some of the finest wood creations from African mahogany. I had him make a few personalized items for me to bring back. He was putting himself through college with the money he made from woodcarving. After a short drive past the main gate, Emmanuel would pull up to the front entrance to drop us off.

ChrisEvansInsideBloodMobileWEBIt was hard not to notice the blood mobile sitting right in front of us as we opened the car doors. For starters, it’s big. But most notably, it’s a rather contemporary piece of technology in comparison to the hospital infrastructure that sits behind it. Aboard the bus, we can accommodate working with three Ebola survivors at one time. Not to mention it had the best air conditioning and internet signal to be found. The floor of the bloodmobile has seen more than a few tears fall to its surface as Ebola survivors have shared their stories. But trust me, we shared plenty of laughs aboard that bus. Darlington, Galakpai, and George are our lab techs that run the bus and collect the donations. Darlington is the social butterfly, always finding a reason to engage someone in conversation. Galakpai is the serious one – quiet, yet strong and determined. George is the newest and quite eager to learn, much like a young apprentice is eager to please his teacher. Each of these men has amazing life stories. They keep the operational portion of the research running.

Sometimes in the afternoon I would work with Korlia aboard the bloodmobile. Korlia is the president of the Ebola Survivor’s Association of Liberia, well-accomplished in his early 30s. By training he is a Physician’s Assistant (PA). Not a loud person, but very commanding of attention when he stands before a crowd. I partnered with him for several projects. He understands well the difficulties survivors have faced with stigma and has worked hard to advocate for survivors across the region.

The lines start early. Before entering the hospital, everyone is required to wash their hands with a bleach solution from the big barrel that sits out front, which makes for plenty of bleach stains on your pants. The triage team then takes your temperature after which you’re allowed to move on to your next station. Some will go on to sit in the waiting area to be triaged; some will have surgery; some will go to the pediatric clinic for treatment; some will go on to the survivor clinic; and some will prepare for labor and delivery.

I often got to the hospital early and ventured through to the back of the hospital for the 7:30 a.m. chapel service. To get there, it wasn’t uncommon to pass long lines of people seated along the halls waiting to be seen – mothers hold their children in their laps; the hurting clutch on to family members or their own bodies for some sense of support; surgical patients are prepped for their case; the medical teams round on their patients. It can often have the density of a mall around the holidays. It’s easy to notice the Islamic women who arrive completely veiled in their traditional black burqas, only their eyes visible.

When it rains, you have to be a little choosier about your steps around the hospital so as not to step into a puddle. The hospital is under constant renovation and improvement.  While I was there, roofs were being repaired and cement sidewalks were being added. Much credit goes to the renovation teams. They worked hard up on the roofs in the hot sun and sidewalks in the pouring rain. In fact, a new hospital in the adjacent field is being worked on as I write this. Unfortunately the outbreak put a halt on its construction with resources needing to be reallocated. But, with things calming down, teams are working quite hard to complete what will be a very nice new ELWA hospital.

ChrisEvansLiberiaChapelEWLA1WEBThe brick chapel with partial open-air sidewalls isn’t anything special in structure. It has several wooden pews. Those who attend hear a short meaningful message and celebratory singing. It is hard not to be moved by the singing. It is real and honest. At the end of each chapel service Dr. Brown, a native Liberian, is often invited up to the front to address the hospital staff.  The same man who appeared on the cover of Time Magazine, celebrated as [a] Person of the Year for his efforts [as an Ebola fighter] to take care of the patients in the Ebola Treatment Units (ETU), leads a humble, faith-led life. Soft spoken, yet very commanding, both approachable and willing to listen, he is a fitting Person of the Year. At the end of his daily address he pauses and prays. And while bowing your head, you might open your eyes and with a quick glimpse only see plane tile floors, nothing cosmetically special about them.  But if those tiles could tell stories, if the wind blowing through the open holes in the walls could be translated, oh the stories they could tell. For the story of the ELWA chapel is more than that of preaching and prayer, it’s one of rescue and care. The ELWA chapel was, for a time, converted into the first Ebola Treatment Unit in Liberia. The very floors that hold the pews and that we stand on to sing are the same floors that held people who struggled and fought for their lives during the early part of the epidemic. That was never far from my mind for all of the hours I spent inside of the chapel.

The Liberian Site Team: Gertrude, Korto and Evon.

The Liberian Site Team: Gertrude, Korto and Evon.

I would meet our team in the heart of the hospital where a small room was converted into our temporary office. As one entered by 8 a.m., it was common to see some of the site team there and working. Gertrude is the site coordinator; Evon handles the finances; Edwina is a nurse; Korto is a PA; and Sam is a PA and the senior site research coordinator. Novels could be written about what these people have seen and done. Sam and I, being about the same age and scope of practice, worked well together. He became a dear friend. On my final day, he held a ceremony to send me off in accordance with his tribal traditions. That meant a lot to me and I couldn’t have chosen or planned a better way to be sent off if I had to. The office was also joined with Dr. Fankhauser’s office.

A missionary doctor, John Fankhauser followed a path that led him away from California to a country that would call on him to be a key leader in the largest Ebola outbreak in recorded history. A man of strong character and integrity, he has a deep care and love for his patients, and his patients trust him. He is a strong advocate for the Ebola survivors and started the first Ebola survivor’s clinic. Again, so many stories of bravery and dedication could be told about him, but those are his stories to tell. If you have free time though, it’s worth reading about him. He is a brave man and he has my respect. I hope our paths can one day cross again.

The middle of each day could take on so many directions. Often times they involved working closely with Ebola survivors. So much focus has been on the ones who died that it’s easy to forget that so many have lived. A brief chat with any one of them, and you’ll realize that these people are special. Any one of them could tell you about their awful time with Ebola, about their dark time in the ETU, or how many family members they lost. It wasn’t uncommon for tears to start falling after talking about those things. But it also wasn’t unusual to see a common joy for life within them. One thing, though, will be very clear after venturing down that path with any of them…they are a strong, thankful, joyous, and special people. Many were united with a mission and determination to do whatever they could to not let Ebola show it’s murderous face ever again. I wish there were enough pages of paper to tell the entirety of every individual story. They truly are special people.

But you’ll also notice, after a while of being in the country, that there is still a looming sense of stress, a sense of PTSD for many. Trauma of that level, magnitude, intensity, and duration does not go away quickly.

Andy is from D.R. Congo. It’s common to pass him throughout the day. He comes for three-week stints to train our site team on the bloodmobile. Often times, I’d go for short walks with him around the compound to decompress and talk about the project, and more importantly, to talk about life. He is soft spoken, yet confident and unwavering. A solid guy. Every team should have an Andy.

The West Point Community in Liberia

The West Point Community in Liberia

Lunchtime often took us over to the cafeteria, which is a room to the side of the pharmacy.  We often called it “Alice’s” since the young girl who brought out the food is named Alice. You had your daily choice of white rice and something with it, whether it is potato greens, fried chicken, or dried fish. One thing you can count on, like rain in the rainy season, there will be rice for lunch. One of my favorite quotes came from Sam at Alice’s. “Alice, please bring me rice and chicken, without a side order of flies!” Flies were everywhere on the cafeteria tables (and your food if you let them). Much like a deer shakes its side to get rid of flies, you got in the habit of swatting at them to keep them away without even thinking about it. Just part of life…you make it work.

It was common to see markings of Samaritan’s Purse around the compound, whether it be a logo on some of the ETU siding or other equipment. I got to know a lot of the Samaritan’s Purse staff while I was there. They were a huge help in getting me acclimated to the area and helping me find some ex-pat community.  S.I.M. mission staff was also a huge help. They’ve been at ELWA for decades working with the community. They’ve made it possible for many in the area to get healthcare and an education.

Afternoons, much like the mornings, could take on so many directions. Sometimes I was called on to take care of regulatory items, like writing Standard Operating Procedures and completing case report forms. Sometimes, we had to work out technical problems on our bloodmobile. Sometimes we had to talk about the status of the project and recruitment.  Sometimes we had to work with the local IRB. Sometimes we had to work transatlantically (Skype becomes much less of a social media and much more of a required tool when working abroad). Of course, internet and electricity were subject to the occasional heavy storm and lightning that could knock out all power and send rain occasionally leaking through the ceilings. But that’s life and you make it work.

A diesel generator powers the entire compound, which is constantly needing attention and care. AT&T, Sprint, etc didn’t exist where we were. Mobile phones do. You add minutes to them with scratch cards. Five dollars a card got you some amount of time, but I could never figure out exactly how much.

One memorable quote came when we were trying to find a locksmith to open the lock on our new office space. We started asking our site team whom they would recommend.  Someone off to the side, with humor and all seriousness said, “anyone, most anyone around here can pick a lock.”  Very smile-worthy.

Ubiquitous are the little orange lizards that are everywhere. Everywhere. Sometimes they get so excited they run right in to your shoes. They sit on the rocks, hang on the trees, run through the fields, and run through the hospital. They are everywhere.

Emmanuel was usually out front to pick us up by 5 p.m. and take us back to the hotel where we’d grab dinner and hang out for a while, sometimes as a group, sometimes on our own.

ChrisEvansPicofLiberianTownWebOn the night of Easter Sunday, I found myself sitting on the beach having a conversation with three physicians, each from different groups, one from Canada and two from the US.  The conversation we had I won’t soon forget. One of them said they got an e-mail from a friend stateside and it simply said, “how is your time in Liberia, has it been fun?”

Looking at us, all sitting in the sand with waves crashing in 4/4 time in the background and moonlit mist surrounding us, she said, “Has it been fun? How do I answer that? You mean besides the 2-month-old that died this morning at my hospital despite trying so hard to save her, or the other child that will probably die tomorrow. Yeah, it’s been real fun.”  With a sense of gallows humor and understanding of the challenges we all looked at each other and laughed at the original question. While I did not participate in direct clinical care while there, it wasn’t uncommon for my friends who were, to be waging very tough battles to save lives with limited equipment and technology. The disparity of clinical care in West Africa is real, and we were sitting in the middle of it. It’s a big mountain to overcome, but it’s not insurmountable.

Liberia and the US are forever bound by more than just the Atlantic Ocean, the grip they have on each other in world history is permanent. Conditions there can be hard. But even though the conditions are hard and Liberia is a very poor region, you do find time to laugh. Poverty isn’t all about money. Poverty isn’t all about possessions. It may often in large part be more about relationships, or a lack thereof. And while many there do not have much in the way of money or possessions, most have a true and genuine joy and happiness through the communities they are a part of. While there I did find myself doing less busy “stuff” and traded that for being more busy knowing people well. Asking them the deeper and more real questions. This was life-giving to me as we can become relationally impoverished here in the states, not speaking to our neighbors, living false lives online for social support under the guise of digital courage. If you want something done there, you have to talk to someone as e-mail won’t get you very far.

I wish the circumstances had afforded me more time for closure before I left, to say a few more proper goodbyes and give a few more elbow bumps. But as it played out, the job required some last minute running around and with three hours to spare, I was scrambling to the hotel to grab my bags and make my flight.

My plane touched down at RDU on June 3. After a long flight I was tired. I wasn’t sure how I’d feel getting off the plane. I was prepared to cry; I was prepared to just be tired.  After deplaning I took the escalator down to the baggage claim and got my bags fairly quickly. A friend came, picked me up and took me home. I got back and turned my power back on and got readjusted to my home. It had been three months since I had driven down highway 40. The North Carolina air was noticeably cleaner than the Liberian air I left. Suddenly the water was safe to drink again. Suddenly it was socially acceptable to extend a handshake. No major threat of power outages. No malaria or typhoid to worry about. I could stop all of my protective meds. But the dear friends I made were an ocean away.

Chris, left, and Dr. Jerry Brown, a native Liberian who was named by Time Magazine as its Person of the Year in 2015.

Chris, left, and Dr. Jerry Brown, a native Liberian who was named by Time Magazine as its Person of the Year in 2015.

Coming back has been hard at times. Most of my time and life there happened within a relatively small radius, but it was a busy, complex, purpose-driven time. I never questioned my purpose there. I never questioned the bigger meaning of what I was doing.  I never questioned any degree of personal sacrifice. And I certainly don’t mean to romanticize the time there. It was professionally the hardest thing I’ve ever done. But it was some of the best-spent time I can recall. And I would do it all over again without reservation. Sitting at my desk doesn’t feel the same right now. I still have frequent memories back to my time there. I can see every turn of the hospital halls in my mind.  All of my friends there, I can see their smiles. The ETUs and some of their de-commissionings. While I have them in photos, I don’t need them to see in my mind the wooden and tin fences surrounding them, the guards and bleach stations at the entrances, the tents where so many people surrendered their lives and so many survived.  The ordinary people acting heroically in a humanitarian crisis…those memories are indelible.

The story of Ebola, the story of Liberia, the story of ELWA is a really big story. I am forever grateful to have perhaps been a part of one small letter of that very big story. But if I could encourage, as often as the name of Ebola crosses your mind, please think of the people who have been affected and the people who are still in the fight. They are real, as real as you and I. They’re sons and daughters, mothers and fathers, brothers and sisters, orphans and widows, continuing to live in what most from the Western world would observe as an unimaginably difficult situation and they still need our help.

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Blog: Making a Case for PrEP Personal

Adam Ward

Adam Ward

I am currently a “patient” taking Truvada. I say “patient” because I am not the type of patient who has historically taken FTC/TDF to suppress an existing HIV infection, but, rather, a member of a growing population of people taking Truvada as PrEP to prevent HIV infection. In this blog post, I hope to share a little bit about my story, my experiences and thoughts on PrEP, and close with a challenge to those of you reading who are health-care providers.

Reasons for starting PrEP
At the time of writing this blog post, I have been taking PrEP for a little over 8 months. I had learned of PrEP as a new tool for HIV prevention during a conference session while attending the annual Creating Change Conference in January of 2013, shortly after Truvada was approved by the FDA for this purpose, but I was still not clear on the evidence for, or against, PrEP. Nonetheless, I knew PrEP was an option. Fast-forward one year, and quite a bit had changed. The literature on PrEP seemed to proliferate exponentially, and more information had reached mainstream news and media outlets. I had also recently entered into a relationship with my [current] boyfriend. We had decided to be sexually monogamous with each other. We did not, however, have the degree of communication that the relationship needed, especially around this commitment, and discussion of STIs (including HIV) was minimal, save for us initially agreeing to use condoms when having sex together until we both got tested to ensure that we did not have an STI at the time. Fast-forward another 6 months, and I discovered that my boyfriend had been having unprotected sex with multiple other sex partners without disclosing this information to me. This isn’t an uncommon story, and I, too, had had sex with another person, though risk was low (oral sex only), and I did disclose this information to my partner. However, after this sudden discovery I became greatly concerned, anxious, and even paranoid about the possibility of having an STI… with HIV being the elephant in the room. That same day, I went to my local drug store and purchased the OraQuick in-home HIV test to give me at least some peace of mind, though doing calculations in my head at the same time of when I could expect to have an accurate result. I also made a commitment that day to begin taking PrEP – if I was still HIV-negative.

This was not the only reason I decided to start PrEP though. I had also grown very tired of thinking about sex, even non-relational sex (“hook-ups”), as risk. I was tired of calculating my risk, thinking about the data on transmission odds for different acts; tired of HIV being the elephant in the room, and most of all tired of framing sex as something to be fearful of. Ever since the first reports of “gay cancer” and “GRID,” and the onset of the AIDS epidemic, gay, bisexual, and other men-who-have-sex-with-men have been fearful of sex. Some have not, true, and some feel resigned to a fate of becoming HIV-positive, but I am not one of those people. Though I did not live through the early days of the epidemic, I am all too aware of the toll HIV took on the gay/MSM community. I am aware of the toll HIV continues to take, with 50,000 new infections diagnosed each year in the US since 2004, and the incidence increasing among MSM. I am all too aware of the realities of living with HIV, with a friend recently passing away from AIDS-related complications. These are also the reasons I decided to start taking PrEP – not only as a commitment to my personal health, but also as a commitment to those who have suffered, who currently suffer, and who will suffer from HIV/AIDS, and as a commitment to all gay, bisexual, and other MSM to work to de-stigmatize what MSM sex has become. As someone who considers himself an HIV prevention advocate, if I am not going to do it, who will?

Now, you may just say “use a condom!” This message is remarkably out of touch though. With 50,000 new HIV infections each year since 2004 in the US alone, and with the percentage increasing among MSM, it is clear that having condoms as the only prevention method is not working. Until there is an effective vaccine, I firmly believe that we must research, advocate for, and fund additional biomedical prevention methods. Truvada as PrEP is one such prevention method, and, if adhered to, a very effective one at that. By holding the belief that every man-who-has-sex-with-another-man should be using condoms with each and every sexual act, and by attempting to change the behaviors of those who do not, you are stigmatizing and shaming those who desire connection, intimacy, and heightened physical pleasure, and those who do not want to use condoms when having sex – whether in a mutually monogamous relationship or not. It is a reality that many MSM do not want to use condoms, will not use condoms, or will inconsistently use condoms when having sex. This was the reality in 1992, over a decade into the AIDS epidemic when contracting HIV meant a sure death, and it is the reality today, so we must acknowledge and accept it. I want to make it clear: I am not advocating for no condom usage, but I am saying that forcing condom usage on everyone does not and will not work, and that there must be other options. Personally, I prefer not to use condoms with every sexual act (I am more inclined to use condoms with anal sex than with oral sex, for instance, just knowing the risk involved), and I do not want to use condoms when I have sex with someone that I am dating. Thus, PrEP became a very good option for me.

After following up with my medical provider, I tested HIV-negative (using a fourth-generation HIV test), and also negative for other STIs. However, one of my main concerns with starting PrEP, aside from potential negative side effects, was the possibility of developing viral drug resistance if I somehow acquired HIV. After looking into the literature from the iPrEx trial, though, I was reassured to learn that the only people who developed drug resistance were those who had an undetected acute infection when starting Truvada (resistance to FTC only; no TDF drug resistant mutations or reduced phenotypic susceptibility were observed), and that drug resistance (to FTC) waned rapidly after discontinuing Truvada. With that knowledge, I decided to wait to begin PrEP until I got repeat testing 1 month later to ensure that I did not have an acute undetected infection. During that month, my boyfriend and I spent a great deal of time working on building trust back into our relationship; working on our communication; even going to couples’ counseling together, and, ultimately, deciding to stay together, though in a sexually non-monogamous relationship going forward. I can write a whole other blog post on relationships, and what that has meant for us (hint: lots of communication, honesty, and disclosure is included… and also love), but it also meant that we agreed to both start PrEP – as a commitment to each other’s health. I did not have sex during that month, either. Following a repeat negative result 1 month later, and being cleared medically, I next sought to acquire PrEP.

Experiences with acquiring PrEP
For my medical provider, I was the first patient to request to be prescribed PrEP. My provider was knowledgeable on PrEP, and willing to prescribe it to me, especially considering that I met the “high risk” criteria in the CDC guidelines. This scenario is not the case for everyone though. Unfortunately, some patients must be their own advocate, even to their medical provider, who may not be willing to prescribe PrEP and may instead approach safer-sex from a condom-only perspective. Some providers are also not aware of PrEP, and may require education themselves. I am making the assumption that those of you reading are aware. However, I want to comment on the “high risk” criteria established by the CDC. I truly believe these criteria should be considered exactly as they are framed – as guidelines, not as hard and fast rules of who should be, and who should not be, eligible for PrEP. For example, if, when taking a sexual history, a patient discloses behavior that places them at substantial risk of HIV acquisition, it could be important to consider discussing the option of PrEP with the patient. I believe, though, that anyone seeking PrEP as an HIV risk-reduction tool should be prescribed it (given they are medically eligible). If the “patient” is seeking PrEP, they have very likely already thought about risk, and about other prevention options. PrEP cannot only provide a reduction in risk, but also peace of mind. The World Health Organization currently recommends in their guidelines on HIV Prevention, Diagnosis, Treatment, and Care for Key Populations that ALL [emphasis added] men-who-have-sex-with-men should have the opportunity to choose PrEP if they feel that it meets their HIV prevention needs.

After being prescribed PrEP, I then sought to get my prescription filled. Of course, my first question was “how much is this going to cost?” The cost of Truvada in the US is about $1400/month – no small amount, by anyone’s standards. I had looked up information on Truvada on my insurance company’s website – it was considered a Tier 2 drug ($50 copay), but also a Specialty Drug, which may have meant that I also had to pay a 25% coinsurance premium; this would have made the drug unaffordable to me, as a graduate student. I called my insurance company, but they were not able to provide information on the actual cost until I got the prescription filled at a participating pharmacy.  Truvada was not available at the pharmacy of the health center I went to, so I sent the prescription to Walgreens Specialty Pharmacy. After “filling” the prescription, I found out that I only had to pay a $50 copay; a big relief. Later, I learned of Gilead’s Copay Assistance Program, which brought my out-of-pocket cost to $0. I have often thought about the cost of Truvada to my insurance company, versus the amount I pay for insurance (which is much less), but I will save the discussion on the economics and social justice of HIV prevention versus HIV treatment for another blog post. A 30-day supply of Truvada was then shipped directly to my apartment, so I began taking it.

Experiences on PrEP
While being on PrEP, I have had several side-effects – some “negative”, most “positive.” In terms of the “negative” side effects, for approximately the first month taking the drug I experienced a moderate amount of excess gas, which was humorous at times, but which also resolved quickly. I also experienced intermittent headaches, but these also resolved quickly, after the first two months. At follow-up evaluation with my medical provider, my renal function has remained good, so that is the extent of my “negative” side-effects on Truvada.

In terms of the “positive” side-effects, sex has become more of what I feel that it should be: healthy, enjoyable, and absent of fear. Not only have I remained HIV-negative, but I have also had immense positive mental health benefits. I feel that discussion of these “positive” side-effects is often absent in conversations on PrEP, as are conversations on the emotional aspect of sex in general. I have had peace of mind, and, although my risk behavior has been low since starting PrEP and has generally always been low, I have not sat anxious and consumed in fear while awaiting the results of an HIV test. I am also very open about being on PrEP, and have encouraged many friends to consider it as a prevention tool as well. This is another unmeasured benefit of PrEP: it has the potential to open up conversations on sex and on risk; conversations that many who are engaging in sex are not having. In fact, I believe that something you will find about those currently taking PrEP is that they are at least aware of risk, and want to reduce it. This may be one reason why most research studies have found that after starting PrEP, participants have not engaged in “riskier” behavior than they were already engaging in. My relationship with my boyfriend has also gotten healthier, and although that is not all attributable to PrEP, I do feel like the San Francisco AIDS Foundation message “love may have another protector” is applicable.

I intend to stay on Truvada as PrEP indefinitely, or until: 1) better or more convenient options become available, i.e. injectable forms of PrEP that require less frequent dosing, 2) an effective vaccine is developed, or 3) my insurance changes and cost becomes prohibitive. I really hope cost does not become the deciding issue.

Challenge to clinicians and health-care providers
My challenge to anyone reading this blog who provides health-care to someone who may be eligible for PrEP, is to meet your patient where they are. I recently had the privilege of sitting on a PrEP patient panel at the UNC’s Institute for Global Health & Infectious Diseases and the Greensboro Area Health Education Center’s Clinical Care in 2015: HIV, Hepatitis C, and Vulnerable Populations conference, also known as May Update, on May 4, 2015. During the panel discussion, a provider in the room stood up and commented that they could not believe we were “…saying it is okay to not use condoms.” If you read my blog post, you will see that is not exactly what I am saying; however, I am saying that some people do not or will not always use condoms (myself included), and for those people PrEP may be an important option. During that conference, the panel was also asked another question: “why are more MSM not seeking PrEP?” I have thought about this long and hard, and think it is for several reasons: 1) lack of awareness or knowledge about PrEP, 2) concern over cost, 3) fear of slut-shaming (i.e. being labeled a “Truvada Whore”), 4) lack of awareness of their actual risk for acquiring HIV, and 5) the fact that there is still a very public debate on PrEP, and that it is not even fully embraced by the medical community. That last reason is why I am writing this post – to plead with you to consider all aspects of the PrEP conversation, as well as current research, personal views aside. One last question that was asked to the panel: “do you think you are just looking for ‘the one’, one person to be intimate and loving with, and once you find them you will no longer need to be on PrEP?” While I appreciate the question, and am sure it is applicable to some people, if you don’t see the problem with that question I encourage you to look up heteronormativity, non-monogamy, and polyamory. My challenge to you is to try to understand your patient, and place yourself outside of your own lens and biases to meet them where they are.

If I can be of any help, as a current patient, please do not hesitate to reach out.
A few articles and sites I like:

A little bit about the author
Adam Ward is a 26-year-old gay, white, cisgender male. He currently holds a Master of Science in Comparative Biomedical Sciences, and a Graduate Certificate in LGBT Health Policy & Practice. He is passionate about working to eliminate health disparities impacting LGBT people, including HIV/AIDS, which he hopes to make a career of. He can be reached by e-mail at arward.ncsu@gmail.com.

 

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PHOTOS: Maternal Health and HIV Prevention in Malawi

 

Outpatient clinic

Outpatient clinic
Picture 1 of 8

Patients wait for care in the outpatient clinic in Nsiyaludzu

Josie Hollingsworth is a journalism student at UNC. She, along with 22 other students,  traveled to southern Malawi to tell video/written stories of individuals on maternal health. Read about her experience here.

Read more about CARE’s maternal health program
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Lowering maternal mortality is key to overall health in Malawi

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By Josie Hollingsworth, Institute of Global Health and Infectious Disease Web Specialist

The most astonishing thing that I noticed while visiting the villages in Ntcheu district, Malawi has been the sheer number of children that live in a single, small community. It is difficult to put into a U.S. perspective, but I found it strange to drive toward a school, passing just a few homes, and seeing over 70 children playing soccer in the field. The average woman in Malawi has five children, a quintupling of the population that has led to problems in providing health care. As a journalism student at UNC, I, along with 22 other students, had been sent to tell video/written/photo stories of individuals who are affected by this scorecard system and the maternal health.

At the end of 2015, the United Nations Millennium Development Goals for Malawi will be assessed. The country is on track to reduce child mortality: the probability of dying between birth and five years. Various programs have reduced the rate from 234 child deaths per 1000 live births in 2009 to only 71 deaths in 2014, on mark to reach 61 in 2015. However, Malawi is off-mark to meet its goal of reducing maternal mortality. In 2004, an average of 984 women died per 100,000 live births. In 2013, the maternal mortality rate in Malawi was 510, far off-mark of the UN Millennium goal of 155 per 100,000 live births. The main causes of maternal death are complications with severe bleeding, abortion complications, pregnancy-induced high blood pressure, infection, obstructed labor and blood clots. Preexisting conditions also accounted for a quarter of all maternal deaths. These deaths indicate conditions of poverty and malnutrition, two important aspects to a healthy pregnancy.

CARE’s maternal heath program that had sponsored my trip asks Malawian communities and families to evaluate the way childbearing and rearing should function. This is a weighty topic, yet I found many communities are beginning to embrace the discussion. CARE’s interface meetings are open to the whole village and surrounding villages and they are well-attended. The one I sat in on in Nsiyaludzu had 800 people in attendance. The meetings are led by a local leader and a CARE worker. The discussion is based around 12 “indicators” that determine the quality of maternal health care at that local clinic. The community ranks transportation to the clinic, quality of care, availability of services, community support of nurse midwives, etc.

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A UNC-Project Malawi sign in Nsiyaludzu, Ntcheu District encourages mothers to use antiretroviral drugs to prevent transmission of HIV to their babies

 

While I was primarily in Malawi in order to research and document maternal health, I found that the legacy of an HIV/AIDS epidemic in Ntcheu remains present throughout all tiers of the health care system. During an interview, a rural nurse said that only about 1% of her patients are unfamiliar with preventing AIDS. I never worked directly with HIV patients or physicians while I was in Malawi. However, HIV prevention and treatment is an ever-present topic in the hospitals, health clinics and maternity wards that I visited as a part of the project. In the photo below, UNC-Project Malawi’s work on transmission prevention through ARVs is being publicized on a poster in the Nsiyaludzu maternity clinic. Family planning in Malawi now means for HIV testing  and prevention, and before birth checkups are becoming more common in Malawi due to various maternal health programs. Visiting Malawi for this maternal health project made me understand the importance of UNC-Project Malawi’s community outreach programs. While research and clinical care of HIV positive patients is vital, so is society-wide improvement of all Malawians’ health and quality of life.

Posted in From the Field, Malawi | Leave a comment

Becoming Less Super as a Specialist

By David Wohl, MD

David Wohl, MD, traveled to Sierra Leone to care for people infected with Ebola.

David Wohl, MD, traveled to Sierra Leone to care for people infected with Ebola.

There are specialists and then there are the super-specialists. The ‘super’ here should be taken less as a superlative and more as a suggestion of beady-eyed focus and a lack of breadth. Instead of knowing a lot about something special, super-specialists know a lot about a part of that special something. Picture the entomologist whose career has been dedicated to the gut of one particular species of ant, or the historian fascinated by the life of one U.S. vice president. What do you see? Probably someone who is not all that fun to have at a dinner party.

I am a super-specialist. It’s okay, I own it. In fact, I have been proud of it (and I am pretty good at dinner parties). Microbiology and infectious diseases may have been my favorites in medical school, but it was HIV that pulled be over the buggy side. Sure, I dutifully completed an infectious diseases fellowship and every decade I sit for that discipline’s certification board examination. But the truth is I am really an HIV-ologist in infectious disease specialist’s clothing. All but a handful of my patients are HIV infected. The journal articles I actually do read are almost always HIV-related. I attend only conferences dedicated to HIV/AIDS.  Don’t get me wrong, hanging around an ID division, I do pick up some factual knowledge of lesser pathogens such influenza, cholera, and Malassezia furfur. But, what I know of these and other non-HIV germs is not half of what I know about HIV. HIV is what I do.

Well, now it is not the only thing I do. A few months ago, something new started to pull me from the HIV doc ranks. Ebola.

HIV doctor takes on Ebola: it is a story we have heard before and it should not be a surprise. Much has been written about the parallels between HIV and Ebola: uncontrolled spread, fear, stigma, risk. The current massive and unprecedented outbreak has claimed over 8,000 people this year, many of them young. As in the early days of the HIV epidemic panic has replaced reason, lack of coordination has delayed response and all the while people die. It is déjà vu all over again and last August, when the director of Doctors Without Borders called for clinicians to step up to combat a burgeoning Ebola outbreak in West Africa, I applied. All infectious diseases and HIV providers, I felt, needed to at least ask themselves if they could and should respond to the outbreak of Ebola.

Without level 4 pathogen or outbreak response experience, I was not what Doctors Without Borders wanted. But, it turns out this was for the best, as I realized that a better way to tackle Ebola was to apply my clinical research skills – experience honed by my focus on HIV.

Tales of what I have been doing and have seen in West Africa can be saved for another time. As I type while flying back from Sierra Leone, I am wondering how it was that I became so dedicated for so long to one pathogen, albeit the cause of a pandemic that has killed millions and has significantly altered many aspects of modern medicine. Moreover, I reflect on how it came to be that I was pulled from this comfortable orbit by this even more sinister infection. Perhaps it is the particular monstrosity of Ebola that created my urge to respond – just as the swiftly spreading and devastating AIDS crisis of the 1980’s attracted me so strongly then.

Nagging at me, though, is an inkling that there is more to my motivation to respond than the overlap between HIV and Ebola. Can it be that now that HIV medicine has become largely a routine of well visits among people living with undetectable levels of the virus in their blood, when we track LDL cholesterol more closely than CD4 cell counts, that I and other HIV providers are seeking the excitement and novelty we once had? Are we increasingly becoming susceptible to the lure of the next big thing, be that HCV or, for some of us, Ebola?  Our victory against HIV has been accompanied by the loss of intensity that drove many of us to the fight against AIDS. And, so, no wonder that our gaze falls elsewhere.

I have to believe that I am driven toward Ebola by more than some sort of professional mid-life crisis; that my deciding to be involved reflects a commitment to help make things better for those infected and affected by this horror. Yet, I am also aware that why we do what we do is complicated.

I am not giving up my day job and will continue to be an HIV doctor until there is no HIV. Yet, I have to break the news to HIV that I have started seeing another virus. It is scary and wild and thrilling and it is also something I feel I have to do– just like back then, when young men started getting sick and I, along with many others, felt we had to come calling.

Posted in Africa, From the Field | Leave a comment