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Division of Infectious Diseases

Research in HIV Medicine…charting a path to longer lives and ending HIV transmission

Research has long been an important part of the mission of the HIV Team at UNMC’s Specialty Care Center For many years, clinic patients clinic have had the opportunity to take part in a variety of projects including interventional treatment for HIV, the study of comorbid conditions and opportunistic infections, and trials targeted towards HIV prevention.

Currently, our team has patients enrolled in eleven active studies:

  • Five trials currently involve providing innovative treatment for HIV through long-acting injectable medications given either every four or every eight weeks.
  • The addition of pharmacists to our staff has enabled us to initiate pharmacist-led studies, including prevention of HIV through pre-exposure prophylaxis (PrEP), increasing medication adherence by using telehealth services in rural areas, and the study of pharmacokinetics in transgender women receiving both PrEP and feminizing hormone therapy.
  • Teaming with the UNMC Department of Pharmacology and Experimental Neuroscience, we are examining the brain basis of HIV-associated neurocognitive disorder using MEG and MRI technology coupled with neuropsychological evaluation. An extension of this study involves looking at marijuana consumption and its effects on the brain in those living with HIV infection.
  • Working with the AIDS Clinical Trial Group of the NIH, the REPRIEVE study looks at using pitavastatin as a medication to prevent cardiovascular events in people living with HIV who are otherwise not at high risk for cardiac disease.

We feel fortunate to be a part of an institution that supports research and gives our patients the chance to be a part of the most up-to-date science in HIV care.

 

For more information about ongoing research studies at the HIV Clinic, contact Maureen Kubat, RN, BSN at mo.kubat@unmc.edu or Jen O’Neill, RN, BSN at jloneill@unmc.edu

Content courtesy Mo Kubat and Jen O’Neill

Caring for persons living with HIV is not just about keeping viral loads undetectable

Preparing for my 4-week advanced pharmacy practice experience at the Nebraska Medicine Specialty Care Clinic was slightly nerve-wracking if I am honest. In the days leading up to my start, trepidation creeped in as I considered the unknown of the experience. “What if I say something wrong?” “Will it sound false if I am trying to relate?” “I want to ensure they receive the best care- even from a student.” These were just some of the thoughts I had running through my head. Thanks to my didactic education I felt confident my clinical knowledge would be up to the challenge of the rotation, but could I say that my patient care skills were equally ready? If I had to say at the time, maybe they were not as ready, but those questions of concern should not have been any different for this rotation than any other. Yes, this was a new patient population for me, and yes, I was new to them, but beyond that, my rotation at SCC still required the same care and approach as each one before it. In the end, my trepidation was minimized with some of my first patient interactions.

As a pharmacy student, my usual focus is on the safety and appropriateness of each medication prescribed. However, at SCC, each patient encounter goes beyond that. Each opportunity to interview, counsel, or make recommendations for a patient is an opportunity to learn about their experience, management of their diagnosis, and even trepidations about their diagnosis or regimen. Because for an HIV-infected patient, their diagnosis is only one portion of their life and as unique as the person themselves. They can be an individual who has managed their HIV for decades and seen the changes in treatment firsthand or another who is newly diagnosed, undertaking the beginning of their treatment, and still unsure of what to ask. It is because of their individuality as patients that I developed more as a care provider with each clinic day. I was continually amazed by each patient’s willingness to keep an open dialogue and provide me, the student, with their perspective at the visit. It required patience and practice to adapt each care plan for the patient. I am confident I did not always hit every point, and once or twice, quote, “stepped in it” with my approach, but those were the days when I learned the most. In fact, so many of my experiences at the clinic ended up with my learning more from the patient than I had set out to share with them when I walked in the room.

And at the Nebraska Medicine Specialty Care Clinic, the staff is truly focused on complete care for each patient. It is not simply about keeping viral loads undetectable and CD4 counts high, but ensuring the continued health of their patients – both their physical and mental well-being is maintained and working as a team to do so. Every patient’s care is managed from multiple angles thanks to the providers, nurses, pharmacists, clinic coordinators, social workers, and ancillary staff. No patient is the same and the staff’s continued effort to maintain this perspective is exceptional. Even on days when the patient load is high and the hours are long, no one is forgotten or minimized. Care is provided until the last patient walks out the door. It is inspiring for students who are just beginning their careers to see such dedication and commitment to this patient population.

On my last day at SCC, I saw one of my patients from the first week of my rotation. A seasoned patient who had years of experience managing his diagnosis, but still some struggles along the way. I felt so honored to have been another contributor to maintaining his care at SCC. I had only a small role in his care, but the opportunity to hear his story, join in his management, and make a difference in his health was a satisfying culmination to four weeks of learning.

 

Content courtesy Lauren E Pohren, UNMC PharmD Candidate 2018

Textbook on Immunocompromised Patients Goes Global

 

Dr. Alison Freifeld co-edited a clinical textbook on infections in immunocompromised hosts with Dr. Pranatharthi Chandrasekar, Dr. Ajit Limaye and Dr. Emily Blumberg. The textbook is gaining a global audience and is now available in Japanese. 

Dr. Freifeld was the section editor for infections in Oncology patients. 

Per Dr. Freifeld:  “Immunosuppressed patients — particularly those being treated for malignancies — are found globally and accordingly, it is essential for physicians (and especially ID physicians who are often the consultants for the tougher cases) to be able to diagnose and treat the infectious risks as a consequence of cancer and it’s therapies.” 

 Congratulations on expanding education efforts to an increasingly global audience!

Learn more about the Infectious Diseases Division and Dr. Freifeld here.

 


 

Pharmacists’ care of persons living with HIV – more than just medications

Josh Havens, PharmD, BCPS, Kim Scarsi, PharmD, BCPS, Anthony Podany, PharmD, and Valentina Orduna make up the pharmacy team at the Specialty Care Clinic (SCC).  Pharmacy staff are fully integrated within the HIV care team at SCC.  We help manage SCC patients for a variety of issues including antiretroviral therapy (ART) initiation or switching, management of ART related drug-drug interactions, medication adherence, medication access, Hepatitis C treatment, pre-exposure prophylaxis (PrEP), and post-exposure prophylaxis (PEP/nPEP). All pharmacy staff are involved with National Institutes of Health and industry supported investigator-initiated research. SCC also supports the education mission of UNMC, as an advanced pharmacy practice experiential site for fourth year pharmacy students.

SCC provides a unique experience for a pharmacist. We autonomously see patients and collaborate with other SCC team members to provide the best comprehensive care for our patients. The amount of trust put into the pharmacy staff by other SCC team members is a rarity and we are truly grateful to be a part of the SCC team.

Providing care for patients living with HIV can be very rewarding yet challenging at times.  The smallest change in our patients care can result in drastic improvements in their health and well-being.  Seeing the impact of the interdisciplinary care provided at the SCC never ceases to amaze.  At the end of the day, it is an awesome experience to be an  important part of our patients’ care.

Content courtesy Joshua Havens, PharmD (Clinical Pharmacist, Specialty Care Clinic),  Kim Scarsi, PharmD MS (Associate Professor, Department of Pharmacy), and  Valentina Orduna (Pharmacy Support Assistant, Specialty Care Clinic)


 

Welcoming Ada Florescu as our ID blog assistant!

We are SO thrilled to have Ada joining our blog team! She will be helping with creating and scheduling posts, so we want to introduce her to you all!

“My name is Ada Florescu and I am a junior at the University of Nebraska at Lincoln.  I am a Biology major and a Spanish minor. I recently studied abroad in Seville, Spain so the number of classes I need to take for my minor are quickly dwindling. On the other side of things, it is time to take on several semesters of a full course load of science courses. I am projected to graduate in the Spring of 2019 and after my graduation I am hoping to take a gap year in order to work in a professional medical environment and to get myself prepared for what is to come in medical school. There is still so much time for me to decide, but as of right now, my career goal is to become an OB/GYN or fertility doctor.* I believe UNMC will be such a positive resource to me in achieving these goals so I am so excited to be a part of the UNMC ID blog. I believe it will allow me to acquaint myself with more medical terminology and cases in order to better prepare me for the things I will face in my future.”

*Don’t worry, we are planning on trying to convince her that Internal Medicine and Infectious Diseases are definitely the way to go!!


 

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Testimony: A Patient with HIV Speaks Up to Share her Status and Try to Change Minds

I don’t know how to sum up the last 24 years into just a few paragraphs, but I will try.

Words can be quite powerful. The most unforgettable were the ones I read when my adult life was just beginning. At the age of 17, I received a certified letter stating that I had a “potentially serious condition of a personal nature”.   I had just finished my High School Government night class, with plans to continue to the Air Force boot camp. But then I had to go back to the Military Entrance Processing Station I had spent an entire day at a few weeks before.

I knew whatever it was must have been pretty serious because there were at least four other people in the room this time.  The doctor sat in his leather chair behind a large fancy desk. He was dressed in a white coat and he opened up my file and read from it.  Positive results for the HIV antibody.

I knew what HIV was because I had watched the Ricki Lake Show and MTV’s The Real World with Pedro who was openly HIV positive. Tom Hanks made a movie (Philadelphia) and won many awards so you know it was serious. HIV was making headlines (when people actually dared to talk about it). But they were all on the Coasts – New York, Philadelphia, Hollywood; this had to be something that happens other places, right?  Surely not here in the Midwest in the middle of the 1990s.

But it did happen in the Midwest; and now I was proof. Proof that HIV is not a “gay disease” or a “black disease”. I had never used drugs.  I had never had a blood transfusion. I had more fingers I could count than sexual partners. I thought, “What do I do now?” I knew I had to tell my parents. I lived with my mother at the time and paying for my funeral would be one more thing I had to hear them fight about.

I had been referred to Dr. Susan Swindells at UNMC.  I had more tests done, and she told me in her British accent that if I was not going to take the medicine then there would be nothing else they could do to help me. I needed to take the meds, for the rest of my life; and we did not know how long that would really be. I qualified for the Ryan White Program so that I could have these pills… AZT (the first antiretroviral) was a tiny, shiny white capsule with a blue stripe.

I was very lucky though even if I did not believe it at the time. Every 3 months I would have blood tests at the Med Center, and I felt fine. Was I really even sick? Four years later in 1998 I wed my first husband. He had also tested positive shortly after I disclosed my results to him. We began discussing having children and in 1999 we decided to take the chance because we were both being treated. We did decide together that it was worth the risk and my first daughter was born by C-section after 3 or 4 hours of having an IV fill me up with meds before her delivery. I also gave her liquid AZT for the first 6 weeks and she officially tested negative at about the 2 year mark.

By 2003 I became anxious; I was worried that I had been so blessed and it was only a matter of time before I began developing symptoms and becoming sick.  I made very significant changes in 2006 and took control of my life over somethings I did not even know if I was strong enough to do. I became a working single mother with HIV.

I became empowered to openly share my status after I briefly dated someone who lied about being married. When I discovered he was married, I ended the relationship. Later, I vented to a co-worker about the entire situation. He almost left me speechless when his response was “Girl he “forgot” to tell you he was married then I woulda forgot to tell him I had AIDS!”    My stomach flipped and in that moment I said, “I don’t have AIDS but I do have HIV.”

It was very empowering to share my status and see the shock that it gave him. I married one of his best friends 3 years later. My husband is HIV-negative and when we began having condomless sex in 2007 I made him come to a doctor’s appointment to meet my Specialty Care team. At that point, “Undetectable=Untransmittable” campaign was still years away, and I was not fully convinced that I could not transmit HIV. Honestly, it was more of a visit to document that I had fully disclosed my status and he was completely aware of the risk. I did not want to go to jail if or when he tested positive.

The next few years were filled with change. I had to “change” jobs because someone was disclosing my status without my permission.  That change led to a career that I did not even think I could do and I just celebrated 10 years there. I changed my last name when I remarried. Then I changed diapers again…when I gave birth to my 2nd daughter. Last year I changed a bad habit and quit smoking (over 15 months now).  Now I speak up to share my status to try and change minds. 

I choose to continue my care at the Specialty Care Center. It has changed locations over the last 24 years a few times but the care remains the same. My health team has become like extended family and I get to visit them twice a year. I have watched some providers retire or be promoted to other positions. They have watched me grow and change. The team has been with me through the hardest moments in my life. I know that each of them have my best interest in mind and in their heart and that will never change.

Content courtesy Erin Fulton

Editorial note: Erin Fulton is a patient-activist living with HIV who boldly stands up and publicly shares her story on many forums including social media. She regularly participates in patient panels organized by the SCC and UNMC College of Medicine, in the hopes that by engaging in discussion she can increase awareness and help eliminate the stigma associated with a diagnosis of HIV. Thank you Erin for allowing us to be a platform to share your story today.


 

A New Paradigm in HIV Medicine: Undetectable = Untransmittable

Have you heard about the U=U campaign related to HIV transmission? U=U is a simple but important campaign based on a solid foundation of scientific evidence. In recent months, the global medical and scientific HIV community has come together to support the statement, “undetectable equals untransmittable”. This means that persons living with HIV, who take their medication and maintain undetectable HIV viral load, are NOT able to spread HIV to other people. U=U carries with it the spark of motivation that many persons living with HIV need to remain adherent to their antiretroviral medication regimen. It also has the potential to influence public opinion, which is very exciting. This information is powerful to people with HIV, their friends and families to comprehend that they can live long, healthy lives, have children, and never have to worry about passing on their infection to others as long as their virus remains undetectable. This statement has led to an exciting change in the way the HIV clinic care providers educate patients about HIV transmission.

For many years, we would tell our patients that condoms were needed to avoid the spread of HIV. Then we were able to say that with an undetectable viral load it was unlikely that our patients would transmit HIV to another person.  Now the message is that if a patient’s viral load is undetectable s/he will not transmit HIV to another person.  This can be hard for a provider to say, but our patients need to hear it.  However, patients also need to hear that they still need to protect themselves from other sexually transmitted diseases (including herpes, gonorrhea, chlamydia, syphilis, and HPV) if they are not in a committed, monogamous relationship.  The final message therefore, is U=U, but condoms are still needed to protect you (from other things).

Content courtesy Ann Fitzgerald APRN, Nichole Reagan APRN and Christine Tran APRN, Nurse Practitioners at the UNMC Specialty Care Clinic

Fellowship MATCH DAY! Congratulations Randy and Lindsey!

As program director, I am exceedingly pleased with our match.  The ID landscape has been very competitive over the last few years but we have still been able to recruit fantastic fellows and have even expanded our program.  In 2017,  we interviewed more candidates than ever before and were able to match two excellent fellows; Randy McCreery and Lindsey Rearigh.  We value the opportunity to promote the growth and success of our trainees and appreciate the confidence they have shown in us by matching here.  This next academic year will be the first we have a compliment of four fellows and I feel very encouraged by the growth of our fellowship.  This expansion is the result of much dedicated work by the faculty, administrators, and current and past fellows and I want to thank them for their ongoing support of our ID fellowship.

– Trevor Van Schooneveld, MD, FACP

 

“We are very excited to welcome our new fellows to our growing ID fellowship program. We look forward to having both Randy and Lindsey joining us.”

– Mark Rupp, MD; Professor and Chief, Division of Infectious Diseases

 

See more about the UNMC ID fellowship here.

What it means to be a trainee learning from patients living with HIV

Rebecca Osborn, (Fourth Year UNMC Medical Student)

I have always had a strong desire to work with under-served communities, and was thus drawn to the unique social and medical needs of patients living with HIV. Through my four-year track, I was able to gain early clinical experience, as well as participate in research and work closely with patients and their providers. During my rotations, I witnessed the full spectrum of HIV disease and all of its health ramifications, and I enjoyed the creative and intellectual challenges presented by these complicated patients. The thorough history and workup of immunocompromised patients has taught me valuable interviewing and diagnostic skills that will help me throughout my residency and beyond.

Randy McCreery, MD (Third Year UNMC Internal Medicine Resident, planning a career in Infectious Diseases)

Rotating through the Specialty Care Center (SCC) has been one of the most rewarding experiences I have had at UNMC.  HIV infection is one of those diseases where, with the right care, patient’s can really thrive.  I believe our patients at the SCC get that type of care.  From initial diagnosis to long-term stability, our multidisciplinary team of physicians, pharmacists, nurses and social workers are there to help each and every patient succeed with their disease.  What the clinic did for me was to show me that HIV care is another rewarding aspect of the many settings that Infectious Diseases doctors find themselves in.  I had little exposure to HIV care prior to coming to the clinic, now it’s something that I look forward to. From the trainee perspective, it is very satisfying to be able to make your contribution to the team and together, feel like you are actually saving someone’s life.  Isn’t that what we all got into medicine for in the first place?  Go SCC! and Go UNMC!

Richard Hankins, MD (First Year UNMC Infectious Diseases Fellow)

Working at the Specialty Care Clinic has provided me with the opportunity to make connections with patients and follow them as they are beginning treatment.   I’ve found that my favorite part of working there is seeing patients back at the clinic after they have started treatment and seeing the great strides that they have made in their health.  It means a lot to see people getting better, but I love hearing their stories about how their lives have changed and improved as a result of this.  The first few months have been great, and I look forward to being able to continue working there and learning over the next few years.

Daniel Cramer, (Family Nurse Practitioner Student)

As a Family Nurse practitioner student, having meaningful specialty clinical experiences is essential.  I was first introduced to the Specialty Care Clinic rotation by one of my professors early on in the program and I immediately knew it was something that I was interested in.  The Specialty Care Clinic has a program designed for nurse practitioner students that will pair them with one of the knowledgeable and passionate providers in the clinic.  I spent a month at the clinic seeing patients who are part of studies, patients who are newly diagnosed HIV patients, and stable HIV follow-up patients.  I not only came away from this clinical experience with greater understanding of HIV patient care, but also a newly found passion for the specialty that came from interacting with the patient population but learning from the amazing providers at the clinic.  Christine Tran and Nichole Regan, along with the rest of the providers and office staff, made this clinical experience one that will influence my practice once I graduate and I cannot thank them enough.

What Ryan White’s Legacy Means for HIV Care

Ryan White (1971-1990) became the national poster child for HIV/AIDS after he was expelled from middle school because of his HIV infection.  He was diagnosed with AIDS after receiving a contaminated blood transfusion at the age of 13.  His legal battles with the school system made him a national celebrity and spokesman for AIDS research and education.  Ryan White helped break the stigma that HIV/AIDS was an infection that only affected the male gay community.  In 1990, shortly after Ryan White’s death, the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act was passed by Congress.  The funds provided by this legislation would fund HIV/AIDS treatment for patients when no other resources were available to them.

In 1999 the UNMC Specialty Care Center was awarded Ryan White Part C funding to serve uninsured and under-insured individuals living with HIV.  In 2012 our clinic was awarded Ryan White Part D funding to serve women, infants, children and youth.  The Specialty Care Center also manages the Nebraska AIDS Drug Assistance Program (ADAP) and works closely with the Nebraska AIDS Project (NAP) to ensure individuals living with HIV have access to case management services, shelter, and other resources available through the Nebraska Ryan White Part B program.

The University of Nebraska Medical Center (UNMC) Specialty Care Center was one of a few HIV clinics selected by the Health Resources and Services Administration (HRSA) from hundreds of Ryan White CARE Act programs across the nation to participate in the Ryan White HIV/AIDS Program 25th Anniversary Video.  The purpose of the video is to honor the past 25 years and to celebrate where the Ryan White CARE Act is 25 years later.  Please watch this video to learn more about what Ryan White’s Legacy means for HIV care.

Currently, the UNMC Specialty Care Center receives over $8 Million in Ryan White grant funds to care for persons living with HIV.  This grant plays a major role in curtailing the HIV/AIDS epidemic by covering costs of diagnosis and treatment of HIV, which are the most important activities for reducing HIV transmission. Fourteen percent of persons living in the US with HIV are unaware of their diagnosis, and Ryan White funds can help with identifying these people and getting them linked into care. With consistent treatment for HIV with antiretroviral therapy, the likelihood of patients transmitting HIV to others becomes very low (Undetectable = Untransmittable).   If everyone infected with HIV was successfully diagnosed, started and maintained on active antiretroviral therapy, we could see a significant reduction in the number of new HIV infections. For many of our patients, without the Ryan White grant, they would be unable to afford their antiretroviral treatment, and without that treatment, they would be more likely to transmit HIV to others.

With development of increasingly effective antiretroviral therapy, individuals living with HIV are living longer, with fewer AIDS-associated opportunistic infections being diagnosed or causing death. Many clinic visits are more focused on care of chronic medical conditions such as heart disease, diabetes, or mental health needs. This is a significant accomplishment considering that AIDS was only first described in 1981 and antiretroviral treatment has only been available since 1987. In addition to providing HIV/AIDS treatment for our patients, the Ryan White Grant also pays for our patients’ medical insurance, dental care, mental health care, transportation, and food, among several other support services.

For additional information about Ryan White Care at UNMC, contact the Specialty Care Center Clinic at 402.559.2666.

 

Content Courtesy Tacy Slater and Rachel Huggins

Ryan White’s photo used with permission 


 

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