STARTJanuary 2013
  • HIV Long-Term Survivors Awareness Day

    HIV Long-Term Survivors Awareness Day is held every year on June 5th.  This year's commemoration marks the 37th anniversary of the U.S. Centers for Disease Control and Prevention reporting on June 5th, 1981 about five cases of rare pneumonia affecting young, gay men living in New York and California. This was later to be defined as the beginning of the HIV and AIDS epidemic. Today, 26% of all 1.4 million people living with HIV in the U.S. became positive before 1996, meaning they are long-term survivors. HIV Long-Term Survivors Awareness Day is a day to acknowledge the unique barriers and commit to providing ongoing support to those who have been living with HIV for 25-plus years.


    The 2018 theme is “HIV It Is (Still) Not Over” because communities are focused on goals of ending AIDS and prevention, which leaves those living the longest with HIV feeling left behind. While taking strides to end AIDS must happen, we must take care of the needs of those who have lived with HIV for 25-plus years. Those who have lived with HIV for decades can describe the psychosocial complications they face. We can imagine the trauma of receiving an HIV diagnosis before one had access to life-saving antiretroviral treatments (ART). We can imagine the stigmatized identities, rejections, criminalization that those who are living with HIV have faced over the last 30 years. We can imagine the physical pains those who entered human drug trials in real time, taking a harmful treatment of AZT just to stay alive. L., a woman diagnosed in July 1987 describes, “No one talked about it. Even my boyfriend who gave it to me--we never talked about it. No one was telling women to get tested. I remember seeing a commercial in the 80s when living in California, telling gay men and drug users to get tested for AIDS and I remember thinking to myself 'I wonder if that means me, too.’ It wasn't really a shock when I heard I had HIV--but waiting two and a half weeks to find out was rough."

    Living with HIV

    Despite this historical trauma and stigma, those living with HIV are resilient. C., a man diagnosed in 1994, reports that the invention of ART medications was life-changing, “I felt like I’ve been given a second chance in life. That’s where all my positivity comes from. It’s been 24 years, almost a quarter century and I have so many friends and family who have been supportive.” Remarking about the change in perception about HIV over the years, “people are so much easier to accept me now, they don’t bat an eye when I tell them I’m living with HIV. The key word there is living with HIV.” L., also describes positivity, “I've met a lot of great people as a result of being a long-term survivor. The best thing has been seeing more acceptance as the landscape has changed. I've told a lot of people and most everyone has been accepting. I don't allow them not to be. The worst part of being Poz has been losing my daughter to complications. I try to keep such a positive and upbeat attitude. Like anyone, I've been through a lot of crap." In closing, I leave you with the 2018 HIV Long-term Survivors Day (HLTSAD) goals:
    • HIV and aging are complex and nuanced. HIV Long-term Survivors are aging but constitute a distinct cohort of different medical and psychological challenges including AIDS Survivor Syndrome, poverty, isolation, and invisibility.
    • In our haste to End AIDS prioritize the 2018 modern-day needs of HIV Long-term Survivors.
    • Survivors are a valuable part of our communities we need to empower them to become the elders, leaders, and teachers.
    • Celebrating HIV Long-term Survivors for enduring a historically unique epidemic and being the pioneers of the AIDS pandemic.
    • Prioritize HIV Long-term Survivors culturally-aware healthcare and mental health.
    • Move beyond survival, the goal is aging well with HIV.
    • Honoring resilience and strength, it took to survive multiple casualties and unprocessed grief while planning to die.
      [one_fourth] #ItIsStillNotOver [/one_fourth] [one_fourth] #HIV [/one_fourth] [one_fourth] #LongTermSurvivors [/one_fourth] [one_fourth last="yes"] #HLTAD2018 [/one_fourth]      

    Lacie Tewes is the Prevention and Supportive Services Supervisor in Lincoln for Nebraska AIDS Project.

  • On the Importance of Peer Support

    One of the things I hear most often from clients is that HIV is an isolating disease. Some clients say they lack a strong support system, especially those who live in smaller rural communities. Often, I wish I could tell them they are not alone, that HIV exists in every community on this planet, but it is little consolation when others are too stigmatized to emerge and create those meaningful peer connections. That is perhaps one of the biggest challenges we face—how to help those living with HIV make meaningful connections with other positive people. Since I began my career at NAP as an intern in 2014, I have had countless opportunities to mix academic scholarship with my daily work with those living with HIV. Every opportunity I could use NAP as a model for a course project, I leapt at the chance to provide awareness about what we do at Nebraska AIDS Project and to improve the quality of services we provide to those who need them. With this “work smarter, not harder” approach, it should come as no surprise that I spent over a year of my graduate program studying the effects of peer support on people living with HIV. It is one of my deepest passions—to advocate for programming that utilizes evidence-based approaches like peer support. Peer support is an intervention strategy designed to increase adherence among HIV positive persons. These are different than support groups as peer support is designed for one-on-one audiences.  Peer support models were initially designed to help those who struggle taking their medications and keeping their doctor appointments but has since been used in a variety of other areas of HIV care. Peer support is perhaps one of the most powerful and underused interventions we in public health have in our toolbox. And I would guess largely underused as so many AIDS Service Organizations have seen a decline in their positive peer volunteers and little capacity to offer a formalized training to those peer mentors. Some of you may remember years ago when NAP had a “buddy program.” I am reminded of the buddy program often by our longtime clients who miss the relationships they had one on one. While the buddy program didn’t pair two positive people together, it did provide a key element that is often overlooked in doctor offices and exam rooms: identifying at least one person who could support them in their HIV health journey. Many clients remind me how much they loved having the one-on-one informal support that came from a volunteer, rather than a paid staff person. It is my hope that someday participants throughout our community will feel called to action to share their talents and gifts as HIV positive persons to help those in need of additional peer support. And that’s only one part of the hurdles we face to implement this needed programming. Much of the larger issue is the stigma and shame we’ve been working to eradicate since the beginning of HIV. And if anyone reading this has the solution for how to destroy stigma, I’m all ears. Many HIV programs throughout the country recognize how important peer connections are in keeping those living with HIV healthy and engaged in care. There are designed curriculums to teach HIV positive peers how to mentor one another. Most programs rely on seasoned survivors to take newly diagnosed peers under their wing and accompany them to doctor visits, explain lab draws and results and educate them on the importance of taking medications every day. A physician will also provide this information, but as research has demonstrated, having this information explained by a peer has a much more impactful and lasting effect on that person’s health literacy. For my final graduation research project, I chose to survey people living with HIV in Iowa and assess their interest in peer support. Overwhelmingly, I heard “Yes, I’d definitely be interested!” Perhaps one participant said it best: “I think peer support programs are critical to the stability and well-being of those living with HIV/AIDS.” I couldn’t agree more with him. Living with HIV provides a wealth of knowledge and experience that patients won’t find in a pamphlet or from watching a movie. The most powerful tool professionals can provide to those living with HIV is the power of peer connections and providing the opportunity to foster those relationships. I would encourage you to take a moment out of your day and think about the peer support you have in your life, perhaps even send those peers a note of thanks for being a support to you. Maybe the tie that bonds you two together is not an HIV diagnosis, but knowing you have someone who understands what you’re going through and is there to lift you up and encourage you can make all the difference. Brittany is a Southwest Iowa Case Manager for the Nebraska AIDS Project in Omaha, serving 11 counties in Southwest Iowa.
  • Give to the Nebraska AIDS Project

    Friends of NAP, The board of directors at the Nebraska AIDS Project has been working diligently to consider the changing landscape of AIDS Service Organizations (ASOs) and the need to ensure that service offerings continue for people living with HIV in the state of Nebraska and beyond for years to come. The past year has been critical in our need to acknowledge that fundraising for HIV as a cause becomes more difficult with each year, and federally funded programs remain stagnantly funded or even reduced over time. I am proud of the leadership that NAP’s staff and board have committed to over the past year, and we are excited about some of the paths we are creating to ensure that HIV continues to be a sustainable focus in Nebraska for the future. As we prepare to execute an ambitious strategic plan over the next 12-18 months, we know that the ultimate success of NAP will depend on the community’s response, and we appreciate the ongoing support from each of you. During this year’s Omaha Gives, we are asking friends to commit to the future with us! Like any strategic plan, ours will be supported by community members who share our vision for sustainable HIV care in Nebraska. We ask that you consider a donation in the amount of $50 (or more) to either Omaha Gives on May 23rd or Give to Lincoln Day on May 31st. Links to schedule your donation for either campaign can be found below. Please also consider challenging a friend, loved one or colleague to match your gift. My thanks for your continued support of the Nebraska AIDS Project. I’m excited to share the details of our future-focused plan with you in the near future. Omaha Gives: Give to Lincoln: Donate directly to NAP:   Warm regards, Jason D. Coleman, Ph.D. Board President, Nebraska AIDS Project
  • The Superman Complex – Youth and HIV: Are We Really as Invincible as We Think?

    I think back to my younger years and how as a young adult I often felt I could conquer the world. This mindset was never truer than when I became sexually active. I always knew that I was supposed to wear protection or face these horrible consequences that I was often taught in school. However, the messages I received in those years were a very blanketed and vague collection of ideals meant to be used as fear tactics not truly a strong educational reference. It was these tools, or lack thereof, that helped form the mindset of invincibility. I felt I could not relate to what was being presented to me and in my mind so long as I wore protection I was safe. I feel this is ultimately where the disconnection often occurs when communicating messages surrounding sexual health to our young people. There are so many influences that counter the progression in sexual education with false propaganda or fear-based ideology. To name a few, sex is often viewed as a rite of passage into adulthood. Because of the hyped sensation of being sexual active through televised or digital media outlets, or simple peer pressures; these all can hinder any progress achieved in educating our youth. There are other factors that play a vital role in this education that comes from within the family unit.  Sex is often not talked about or discussed in the home.  Add to that, the impending fears that are used to deter from such conversations within the home either from lack of communication, or even religious stance. It is these same challenges that hinder our work to effectively communicate good, healthy practices, but none the less, it is also opportunity to get in front of the issues.  Youth 13-24 make up nearly 22% of new HIV diagnosis.  Young adults become sexually active at earlier ages, it is difficult to pinpoint the exact timing that these discussions should take place. But how do we get the word out there? Especially when there are influences that hinder this communication. A possible and effective tool for this demographic is Social Media.  There are countless sites in which we can try to reach our youth.  Not merely through advertisements, but direct posts of valuable, little “nuggets” of information, that can be referenced. I find that posting lengthy or overly stats driven posts will lose the interest and the information is not effectively communicated.  It is important to be brief, impactful, and intentional; remembering to keep the message simple and easy to understand. Although it may be read quickly and then scrolled passed, it may very well implant something in the mind to think about the next time they choose to engage in sexual activity. Furthermore, because many parents utilize these same sites, it may help open the door to effective communication in the home. By educating the parent of the youth, it will give them talking points to help drive these conversations in the home in ways that are not chastising or misunderstood. What do we communicate? Not just stats and numbers, but real facts that communicate that HIV is real and next time it could be you because you are not invincible.  Not to communicate fear, but promote making sound and healthy sexual choices.  Not endorsing the act of sex, but empowering those if they so choose to engage in sexual activity, to be properly educated and more importantly to create a dialogue in which talk about sex isn’t taboo…but a culture in our living. In a perfect world, it would be nice if we could go into the schools and talk freely about sexual health, and even though some sexual health curriculum has made progress, there is still much room for improvement. By not changing our approach, we are inadvertently reinforcing the message of invincibility in our young people.  In the meantime, we have to use the tools most accessible to us and remember to change our approach as the world continues to evolve around us.   Tommy Young-Dennis is a Prevention & Outreach Specialist at the Nebraska AIDS Project in Omaha.
  • Beyond Pronouns: Trans & HIV+

    I recently attended a meeting in which a number of public health administrators gathered to collaborate on the concept of reducing sexually transmitted infections (STIs) in the state of Nebraska and I was excited and encouraged when introductions around the room begun by saying your name, your job title and employer, and your preferred pronouns. While the concept of stating preferred pronouns during an introduction is nothing new, I’m always very aware of how providers of health care respond to the increasingly popular trend to share their pronouns as casually and frequently as they share other fundamental truths about themselves, such as their name or employer. It always seems there is at least one person in the room who is new to the concept or reluctant to share something they feel is obvious to a room full of strangers or casual acquaintances, further defining the role that privilege plays in how we see ourselves and the world around us. But the truth is that gender identity is rooted in fundamental truth, regardless of whether your personal gender expression is “obvious” to others around you. As an employee in the public health sector, I know that much has been said and done to increase awareness for trans identities during the past 5-10 years. Public representation is vastly important to increasing awareness and individuals such as Laverne Cox and Caitlyn Jenner, while not representing the trans community as a whole, have given the masses a “face” to associate with normalizing what was once considered an identity associated with shame, or at very least, confusion. As I type this piece, Microsoft Word continues to draw a staggered, green line under the word “trans”, once again reinforcing that there are still miles to go in terms of how we talk to and about trans identities. Trans women make up one of the fastest-growing populations of individuals newly diagnosed with HIV each year, steadily increasing since 2009. Living in a world that is still struggling to build acceptance for both transgender identities AND people living with HIV, I wondered about the lives and challenges experienced by someone who is both trans and HIV-positive. We asked someone to help us talk about being trans and HIV-positive. We’ll call her Shevett, a pseudonym she selected to protect her identity. NAP: Briefly describe your experience being diagnosed with HIV for the first time. Was the person caring for you at the time experienced and knowledgeable about HIV? Were there any challenges at that time related to being trans? Shevett:  I came out as a transgender woman in 1986. I first learned I was HIV positive in 2012. I was initially distraught and allowed the tears to flow but soon realized this is a part of my life now and I have to cope with it. I immediately thought of my older sister who had also been diagnosed as HIV-positive many years ago. I was fortunate to have a loved one who supported me and knew how to guide me from lived experience. I met my current boyfriend around the same time of being diagnosed. He embraced both my Trans and Positive identities and we have been in a loving relationship for nearly six years. In general, I am a very private person so I’ve chosen to disclose my HIV status only to people that are close to me. NAP: If you are participating in any medical or treatment related to trans care, have you experienced any limitations or side effects in how you positively receive that care on top of HIV care? Shevett: I am not currently engaged in trans-related medical care due to past experience with adverse side effects of hormone therapy. I don’t feel like I’ve experienced any barriers with health providers in relationship to either my trans or HIV-positive status. (note that this may largely be linked to establishing care with providers who are well-informed on trans issues and HIV, this experience may not be the same for everyone) NAP: What would you say the most interesting or difficult social stigma issues have been as it pertains to being trans and HIV+ ? Shevett: I was fortunate to have a network of supportive friends, family, and romantic partners but I acknowledge that not everyone is so lucky. Many people face workplace and housing discrimination for being Trans and/or HIV positive. Due to the lack of awareness in the community, some family members, friends, and sexual partners will not take the news well when they learn that someone they love is Trans and/or HIV positive. The violence against the transgender community creates a constant fear for survival. NAP: Anything else you’d like to share? Shevett: I have a message for young, trans women today who tested positive and that is “keep your head held high and keep on living a fabulous life”. No matter who you are or how you identify, it is not our place to judge someone for who they are or what they have experienced. Lastly, I’d encourage everyone to get tested and protect yourself.   Wednesday, April 18th is National Transgender HIV Testing Day. Visit any NAP test site to get tested, scheduling is easy and can be done 24/7 with online access.   London Woolman is the Interim Executive Director of the Nebraska AIDS Project.
  • Housing and HIV

    An estimated 1,122,900 adults are living with HIV in the U.S. About 0.35% of the U.S. population. It’s estimated that 15% or 162,500 of those individuals don’t know their status.

    Every year the U.S. Department of Housing and Urban Development (HUD) completes a “point-in-time count” to survey people experiencing homelessness. Across the nation, volunteers go out in the evening to survey how many individuals are sleeping on the streets that night. In 2017, 10,171 reported they were living with HIV, and experiencing homelessness that night. And, that’s only those who self-reported their diagnosis. 

    Depending on who's counting and where, people living with HIV and experiencing homelessness estimate from 8.5% to as high as 19.5% in the United States.

    In 2017, 2,501 individuals in one night in Nebraska were experiencing some form of homelessness (on the streets, emergency shelter, etc.).

    Additionally, that point-in-time count and HUD do not recognize individuals who are experiencing housing instabilities (couch surfing, near eviction, etc.).

    If a person doesn’t know where they going to sleep tonight or if they’ll be safe in the morning, it’s probably difficult to prioritize health.

    We can remember Maslow’s Hierarchy of Needs to show that a person’s physiological needs must be met before other needs, such as taking a medication every day.

    Amanda, who does street outreach in Omaha for Nebraska AIDS Project reveals more:

    "People living with HIV bring a whole new set of challenges to the already difficult time of experiencing a period of homelessness. Think about how you might take a daily medication. Perhaps you have an alarm set to take it at a specific time with a glass of water and maybe a meal. Remembering to take it is wrapped up into your daily routine usually. Now imagine you don’t have that alarm, you don’t have that glass of water easily available, you are not sure when your next meal will be, and you don’t have a clock to tell you what time of day it is. What happens if your medications are stolen and the pharmacy will not refill until 30 days have passed? Can you still take the medication if it has been exposed to extreme cold or extreme heat for long periods of time? How likely are you to take daily medications when you are constantly worried about your survival? What symptoms are you likely to experience if you do not take this medication as directed? These examples are just a few adherence barriers people face when they are HIV positive and also experiencing homelessness. Shelters do the best they can and they provide a needed service but it is wise to acknowledge that shelters are not always a good environment for everyone and shelters are often at capacity or unavailable. We often hear terrible stories of theft, violence, discrimination, sexual assault, communal illnesses, bed bugs, and unwarranted bans that take place within shelters. Some folks would rather brave the harsh weather conditions to live unsheltered instead of giving up a beloved pet, being separated from their partner, and subjected to a vulnerable position. Most people who are experiencing a period of homelessness are not the stereotypical scary criminals and drug addicts. Unless you are Warren Buffett, we are all just a few paychecks away from experiencing homelessness. Maybe you are lucky and have an extensive network of friends and family that would support you, maybe you aren’t so lucky. I simply ask you to please avoid judging those experiencing a period of homelessness. You have no idea what trauma they have lived through and what barriers may be keeping them in this position. Be kind."

    Looking at the HIV Care Continuum, we notice that there continue to be gaps in care from the time a person is diagnosed, to achieving viral suppression.

    (Graphic from CDC, 2014)

    • Housing instability delays HIV diagnosis and leads to increased risks of acquiring HIV.
    • HIV medical care and treatment is a lifelong process, housing status is among the strongest predictor of maintain continuous HIV primary care.
    • Taking medications may have competing needs, like food, hygiene, and shelter.
    • Studies consistently find homelessness and housing instability are directly linked to higher viral loads and failure to achieve or sustain viral suppression, even after controlling other factors known to impact treatment effectiveness such as substance use and mental health needs (Aidala, et at. 2012; Leaver, et al. 2007; Kidder et al. 2007). ­

    Nebraska AIDS Project is lucky to have resources like Housing Opportunities for Persons with HIV and AIDS (HOPWA). This program allows case managers to help clients apply for emergency rental assistance, or a security deposit to get them into safe housing.

    Every day, case managers are working to help client avoid homelessness through wrap-around services.

    If you are living with HIV and have housing or case management needs, contact us here.


          Lacie is the Prevention & Support Services Supervisor for Nebraska AIDS Project in Lincoln.
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