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)
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!!
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.
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).
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
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.
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.
The University of Nebraska Medical Center Specialty Care Clinic (SCC) provides comprehensive care of persons living with HIV, at all stages of the disease, as well as specialty Transgender clinics. The team is composed of Physicians, Pharmacists & Pharmacy Assistants, Nurse Practitioners, Registered Nurses, Social Workers & Case Managers, Medical Assistants, Front Desk Assistants, Patient Resource Specialists, Administrative Staff, and an in-house Laboratory technician. We are located at 804 S 52nd Street, Omaha, NE 68016.
When you enter, you will be greeted by the Front Desk Staff at the Specialty Care Center. The Front Desk is staffed by Rachelle Carr, MA – Operational Lead, Adele Haas, MA and Genie Shumaker, Medical Receptionist. Rachelle and Adele are the ‘spokes in the wheel’ of this busy front desk. We deliver outstanding patient care to the patients and cover a wide variety of duties. In our years of service at the SCC, we have established relationships with the patients, which puts the patients at ease during their appointment. Rachelle and Adele keep busy rooming patients, answering phones, managing the provider schedules, treating Sexually Transmitted Infections. They also order supplies, administer vaccines, draw labs, make follow up appointments and monitor patient flow through the clinic. Genie primarily checks in patients, answers phones, registers and schedules patients. We all enjoy establishing relationships with the patients. Each of us has the opportunity to set the tone for the patients’ visits. We are frequently the first face in their patient experience to Nebraska Medicine. Our commitment is to deliver Patient First Care to each patient we serve. We strive to make it a positive visit where they are assured they are getting the best care with Nebraska Medicine.
For more information about the SCC, please call (402) 559-2666 or (866) 632-2437; or visit our website online.
World AIDS Day represents an opportunity for reflection – how far we’ve come since the beginning of the epidemic with unprecedented advances in treatment, and also reflection about the early days of fear and confusion.
I have a vivid memory of the first patient I took care of with HIV infection. It was 1986 and I was living in Columbus Ohio and working in a primary care clinic for people who were uninsured. The patient was a 30-year-old man working as a waiter, and he had been losing weight and had a recent bout of pneumonia. He had taken this new test for HIV, which was positive, and he came to me for help. He was very scared, and I remember him looking at me and asking me what was I going to do? At the time, there was no available antiretroviral therapy, and very little was known about this strange new disease. There were no treatment guidelines, no hotline to call or Up-To-Date to turn to. Instead, we had fear and anxiety about this strange new disease. My nurses were very nervous about taking care of people with HIV infection, as were the staff of many hospitals. I had small children at home, and was worried about what I might inadvertently carry home to them. Some doctors were refusing to take care of HIV-infected patients at all, which led the AMA to take an unprecedented step in the form of a statement about the ethical issues involved in the growing AIDS crisis, which basically said that “a physician may not ethically refuse to treat a patient…solely because the patient is seropositive”.
It is a rare event in clinical practice to be at a complete loss as to how to proceed; brand new diseases do not come along very often. I looked at my patient and with some dread, and thought to myself, what am I going to do? Something had to be done, so I fell back on the basic tenets of patient care – I took a careful history, did a physical exam and told him that we would work through this together. At the time, we were just beginning to understand the kind of infections that people with HIV were susceptible to, so I gave him a prescription for trimethoprim sulfa, which made most of both of us feel better.
Unfortunately, this young man did not survive his disease, which was the case for very many of my patients in the early years. As more patients with HIV infection started coming to my clinic in Ohio, my regular primary care patients started going elsewhere as they were worried about being in the same waiting room. This is how I turned into an “AIDS specialist”. I used to say this is because I was in the wrong place at the wrong time, but in fact it was the right place at the right time, and has led to a incredibly productive and rewarding career.
Since the 1980’s, we have seen steady innovation and progress at a remarkable pace. This has led to improved HIV diagnostic testing, identification of viral resistance, new antiretrovirals with fewer side effects or drug interactions, medications to prevent transmission of HIV to infants and uninfected partners, and to date, one person has been cured. We still have a long way to go to achieve reproducible cure, but there is hope, and where hope is, innovation will follow.
Editorial note: Dr. Swindells has devoted her life to the care of persons living with HIV. She has published over 100 peer-reviewed journal articles, numerous book chapters and is a member of the AIDS Clinical Trials Group (ACTG), which is a global network of expert clinician-scientists dedicated to the study of HIV. In 2013, she received the UNMC Innovation, Development and Engagement Award (IDEA) for her commitment to the community of persons living with HIV, as demonstrated through her development of the Specialty Care Clinic, personal care of her patients and securing funding for ongoing clinical and research activities.
At the Specialty Care Clinic, we are proud to have Dr. Swindells as our Director, as through ongoing innovation, we boldly march into a future that may one day be HIV-free. Over the next several weeks, stay tuned to this blog for more opportunities to learn more about advances in HIV medicine, the lives touched by HIV, and our work at the Specialty Care Clinic.
The UNMC College of Medicine offers a unique Enhanced Medical Education Track (EMET) program which provides an opportunity for medical students to delve into particular disciplines of interest in the field of medicine throughout their four year degree program. Track students attend seminars, preceptorships and complete a research project culminating in a poster or conference presentation. More information about the EMET program can be found here.
One of these tracks is HIV medicine, and we are always excited to have track students come through our HIV clinic. This month we have been fortunate to have a phenomenal M4 student, Rebecca Osborn, in our HIV clinic. She has a keen interest in Infectious Diseases and HIV medicine, particularly linkage to care and barriers to antiretroviral therapy adherence. Together with her mentor Dr. Sara Bares, Rebecca worked on a research project aimed at evaluating adherence to antiretroviral therapy in the HIV clinic, which she expertly presented to the HIV team at the Specialty Care Clinic on October 17, 2017. She provided us with a summary of her research below:
With the advent of effective antiretroviral therapy, consistent medication adherence has become the backbone of HIV Care. My study evaluated the impact of a collaborative care program between the Nebraska Medicine HIV team and a community pharmacy adjacent to the clinic to offer specialized services, including provision of customized adherence packaging, adherence checks, and the option of home delivery of medications, to a group of patients at high risk for poor adherence. Many of these patients had a history of viremia and uncontrolled HIV for several years prior to taking part in the program. We found that a collaborative pharmacy-led initiative to improve medication adherence led to improved virologic suppression in our selected patient population.
Rebecca plans to present her findings at an upcoming conference and will be submitting for publication shortly. We wish her success with her upcoming residency interviews and know she will be an invaluable addition to the residency program of her choice!
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