Ending the HIV Epidemic: Equitable Access, Everyone’s Voice

A guest post by Amanda J. Wilson, Chief, Office of Engagement and Training; Leigh Samsel, NLM Planning and Evaluation Officer, Office of Strategic Initiatives; and Elizabeth A. Mullen, Manager of Web Development and Social Media, History of Medicine Division, National Library of Medicine at the National Institutes of Health.

This year’s theme for World AIDS Day is Ending the HIV Epidemic: Equitable Access, Everyone’s Voice. As the world’s largest biomedical library, NLM has a long history of supporting NIH’s efforts to end the HIV epidemic by providing equitable access to trusted biomedical information, supporting biomedical research, and highlighting the historical, social, and cultural context of this research. Expedient, reliable, free public access to NLM’s trusted biomedical information resources and literature collections advances the knowledge and treatment of HIV/AIDS worldwide, helps progress research to end the HIV epidemic and improves the health of people living with HIV.

Improving HIV/AIDS Health Information Access

NLM integrates multiple types of HIV literature, sequence, testing, and clinical trials data into a portfolio of resources that enables researchers to easily find related information and robustly supports global research to end the HIV epidemic. Free public access to citations to the scholarly literature is provided through NLM’s PubMed and Bookshelf, while free access to full-text is provided through PubMed Central and NLM Digital CollectionsGenBank and the Sequence Read Archive allow researchers to deposit and access publicly available DNA sequences, including HIV experimental and clinical genome sequences. NCBI Virus makes HIV and other virus sequences from RefSeq, GenBank, and other NLM repositories available. The HIV-1 Human Interaction Database includes information gleaned from literature about the interaction between human and HIV-1 genes and proteins.

NLM also provides a rich resource of easy-to-understand online health and wellness information available in English and Spanish via MedlinePlus. Among its wealth of content, MedlinePlus contains several HIV/AIDS topical pages. NLM supports an equitable distribution of information by providing resources and support to strengthen skills and literacies needed to access and use biomedical information for those affected by HIV/AIDS. The Network of the National Library of Medicine provides free health information training, from webinars to instructor-led classes to on-demand tutorials. Additional trainings on a variety of topics are added weekly.

A Long History of Support

NLM’s engagement and collections activities strive to capture the many voices in and around the HIV epidemic. A key historical partnership for engagement with the NIH Office of AIDS Research was the HIV/AIDS Community Information Outreach Program; beginning in 1994 as a resource for community-based organizations to improve the knowledge, skills, and technical means to access and provide the latest authoritative prevention, treatment, and research information electronically. The current iteration of the program concludes this month with 200 plus organizations conducting more than 350  projects in 38 states providing training, communications campaigns, and enhanced products and apps to raise awareness of HIV/AIDS information and discoveries over the 40-year history.

NLM has been collecting publications and archival materials related to HIV/AIDS since the first Morbidity and Mortality Weekly Report on the topic was issued in June 1981. The NLM HIV/AIDS Web Archive offers more than 150 websites documenting the biomedical, clinical, cultural, and social aspects of HIV/AIDS in the early 21st century. This month you can look for new additions and resources.

World AIDS Day 2021

Screen shot of NLM's History of Medicine Division's exhibit entitled "AIDS, Posters and Stories of Public Health"

This month, to help mark World AIDS Day, NLM will launch a new online exhibition—A People’s History of Pandemic: AIDS, Posters, and Stories of Public Health. The NLM exhibition will cover the archive of public health posters about AIDS rooted in the cultural output of artists, activists, and community workers. Their work, specifically the use of personal narrative as a visual-art strategy, along with language and the collective process of creating AIDS posters, continues to broadcast the message that, 40 years after the crisis began, attention to AIDS has not diminished. In mid-December, NLM’s Profiles in Science, will release a curated collection of digitized primary source materials related to the United States National Commission on AIDS, dating from the mid-1980s through the early 1990s. Learn more about the diversity of NLM’s historical collections related to HIV/AIDS on Circulating Now.

As we mark this year’s World AIDS Day, NLM is proud to continue its efforts to provide global access to trusted resources; share the voices of those affected by HIV; and provide the foundation for researchers, clinicians, patients, and families to engage and answer the call to end the HIV epidemic.

Photo of Amanda Wilson

Amanda J. Wilson is Chief of the NLM Office of Engagement and Training (OET), bringing together general engagement, training, and outreach staff from across NLM to focus on NLM’s presence across the U.S. and internationally. OET is also home to the Environmental Health Information Partnership for NLM and coordinates the Network of the National Library of Medicine.

Photo of Leigh Samsel

Leigh Samsel, MS, is responsible for formal reporting of NLM activities and for providing staff leadership to strategic planning activities. Leigh is currently serving as NLM’s AIDS Coordinator to the NIH Office of AIDS Research.

Photo of Elizabeth Mullen

Elizabeth A. Mullen, MS, is Manager of Web Development and Social Media for the History of Medicine Division (HMD) and Managing Editor of Circulating Now, a blog featuring new research, curatorial insights, and news about NLM’s historical collections.

Please Join Me in Thanking our NLM Veterans

Every year at this time, I take advantage of Musings from the Mezzanine to share with you some of the things for which I am thankful. In my 2020 blog, I reflected on how far we’ve come together since I joined the NLM in 2016. In my 2019 blog, I mused about the people, professionals, and personnel for whom I give thanks. This year, I want to give thanks for all veterans in the United States, but particularly for those NLM staff members who are also veterans.

There’s an official legal definition of a veteran – according to Title 38 United States Code, a veteran is a person who served in the active military, naval, or air service, and who was discharged or released under conditions other than dishonorable. Also included as veterans under certain circumstances are National Guard members and members of the uniformed services such as the Public Health Service.

Left to right: My grandfather, Michael Flatley, and my father, Thomas Michael Flatley.

I come from a strong veteran family – my dad, my uncles Bill and Ed (who were military chaplains in WWII and Vietnam, respectively), my cousin Joey, and my nephew Chris.

At NLM, we are fortunate to count many veterans among our numbers. Some of our staff are not only veterans of active-duty service, but they also continue to serve through the reserves or through membership in the National Guard.

It’s good for NLM to have veterans among our workforce. Veterans bring well-developed skills that can effectively be applied to our operations and research enterprise. While each veteran is unique, and entered uniformed service for very personal reasons, veterans bring a commitment to the country refined through their assignments. And veterans strengthen NLM’s commitment to serve the public through government service.

I think that working at NLM is also good for our veterans. NLM allows them to continue in public service and provides them with a world class enterprise environment that makes effective use of their talents and skills honed through previous service. And working at NLM enjoins the efforts of these veterans with the remaining 1,600 plus people who work every day to bring information to the public, make genomic information safely and securely available for science and public health, and help reach communities across the country with trusted health information.

I am pleased and proud to honor these select members of our outstanding workforce. Thank you for your military service and thank you for your continued service at NLM!

Clockwise from top left:  Dianna Adams (U.S. Army), Alvin Stockdale (U.S. Army), Velvet Abercrumbie (U.S. Navy), Ken Koyle (U.S. Army)
Clockwise from top left: Dianne Babski (U.S. Army), Kevin Gates (U.S. Air Force), Bryant Pegram (U.S. Army)
Left to right: Todd Danielson (U.S. Army) and Peter Seibert (U.S. Army)

40 Years of Progress: It’s Time to End the HIV Epidemic

Guest post by Maureen M. Goodenow, PhD, Associate Director for AIDS Research and Director, Office of AIDS Research, National Institutes of Health

On June 5th, the National Institutes of Health (NIH) Office of AIDS Research (OAR) joined colleagues worldwide to commemorate the 40th anniversary of the landmark 1981 Centers for Disease Control and Prevention (CDC) Morbidity and Mortality Weekly Report (MMWR) that first recognized the syndrome of diseases later named AIDS. June 5th also marks HIV Long-Term Survivors Awareness Day. 

Forty years ago, the CDC’s MMWR described five people who were diagnosed with Pneumocystis carinii pneumonia—catalyzing a global effort that led to the identification of AIDS, and later, the virus that causes AIDS.

Over the years, much of the progress to guide the response to HIV has emerged from research funded by the NIH, and helped turn a once fatal disease into a now manageable chronic illness. This progress is attributable in large part to the nation’s longstanding HIV leadership and contributions at home and abroad.

NIH is taking action to recognize the milestones achieved through science, pay tribute to more than 32 million people who have died from AIDS-related illness globally (including 700,000 Americans), and support the goal of Ending the HIV Epidemic in the U.S. (EHE) and worldwide. OAR is coordinating with NIH Institutes, Centers, and Offices (ICOs) to share messaging that will continue through NIH’s World AIDS Day commemoration on December 1, 2021.

The NIH remains committed to supporting basic, clinical, and translational research to develop cutting-edge solutions for the ongoing challenges of the HIV epidemic. The scientific community has achieved groundbreaking advances in the understanding of basic virology, human immunology, and HIV pathogenesis and has led the development of safe, effective antiretroviral medications and effective interventions to prevent HIV acquisition and transmission.

Nevertheless, HIV remains a serious public health issue.

NIH established the OAR in 1988 to ensure that NIH HIV/AIDS research funding is directed at the highest priority research areas, and to facilitate maximum return on the investment. OAR’s mission is accomplished in partnership within the NIH through the ICs that plan and implement specific HIV programs or projects, coordinated by the NIH HIV/AIDS Executive Committee. As I reflect on our progress against HIV/AIDS, I would like to note the collaboration, cooperation, innovation, and other activities across the NIH ICOs in accelerating HIV/AIDS research.

Key scientific advances using novel methods and technologies have emerged in the priority areas of the NIH HIV research portfolio. Many of these advances stem from NIH-funded efforts, and all point to important directions for the NIH HIV research agenda in the coming years, particularly in the areas of new formulations of current drugs, new delivery systems, dual use of drugs for treatment and prevention, and new classes of drugs with novel strategies to treat viruses with resistance to current drug regimens.

Further development of long-lasting HIV prevention measures and treatments remains at the forefront of the NIH research portfolio on HIV/AIDS research.

NIH-funded investigators continue to uncover new details about the virus life cycle, which is crucial for the development of next generation HIV treatment approaches. Additionally, the NIH is focused on developing novel diagnostics to detect the virus as early as possible after infection.

Results in the next two years from ongoing NIH-supported HIV clinical trials will have vital implications for HIV prevention, treatment, and cure strategies going forward. For example, two NIH-funded clinical trials for HIV vaccines, Imbokodo and Mosaico, are evaluating an experimental HIV vaccine regimen designed to protect against a wide variety of global HIV strains. These studies comprise a crucial component of the NIH’s efforts to end the HIV/AIDS epidemic.

As we close on four decades of research, I look forward to the new advances aimed at prevention and treatment in the years to come.

You can play a role in efforts to help raise awareness and get involved with efforts to end the HIV epidemic. Visit OAR’s 40 Years of Progress: It’s Time to End the HIV Epidemic webpage, and use the toolkit of ready-to-go resources.

Dr. Goodenow leads the OAR in coordinating the NIH HIV/AIDS research agenda to end the HIV pandemic and improve the health of people with HIV. In addition, she is Chief of the Molecular HIV Host Interactions Laboratory at the NIH.

A Mother’s Day Message: Time for Action to Improve Maternal Health

Guest post by Diana W. Bianchi, MD, Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development and Janine Clayton, MD, Director, Office of Research on Women’s Health

For many of you, this past weekend likely had its share of greeting cards, flowers, video calls, and, perhaps, even a tasty brunch celebrating the special maternal figure(s) in your life. Maybe it was your mother, grandmother, or another special person who always looked out for you when you were growing up. For others, this past weekend may have been bittersweet—a time to remember a mom or someone special who is no longer with you, but who left an indelible mark on your lives, giving you joy, wisdom, and resilience. Mother’s Day is a wonderful holiday filled with love and appreciation.

Sadly, hundreds of children each year in the United States do not get the chance to celebrate Mother’s Day with their moms because of a growing maternal health crisis. In a wealthy nation like ours, a healthy pregnancy and childbirth should be a given, but it’s not. According to the Centers for Disease Control and Prevention (CDC), nearly 700 women die each year from complications from pregnancy or giving birth. In addition, American Indian/Alaska Native and Black women are 2 to 3 times more likely to die from a pregnancy-related cause than white women. The CDC estimates that two-thirds of maternal deaths are preventable.

Understanding and reducing pregnancy-related deaths and complications—or maternal morbidity and mortality—is a high priority for the National Institutes of Health (NIH). In the past year, with an estimated $223 million in funding, Institutes, Centers and Offices across NIH have worked together, and with their federal and community partners, to support scientific research for this crucial endeavor. In a year dominated by both the COVID-19 pandemic and renewed calls to address health disparities and inequities, NIH is facing these challenges head-on and accelerating efforts to reduce maternal morbidity and mortality.

Engaging the Community to IMPROVE Pregnancy Outcomes

Improving maternal health requires strong partnerships with local communities, particularly with racial and ethnic minority populations that experience stark disparities in access to quality prenatal and postpartum care.

To that end, several NIH Institutes held activities to hear first-hand how patient communities can inform future research and what strategies might enhance local efforts. Workshops and forums included:

A common refrain from these discussions reinforced the importance that research conducted within a community should be developed with and vetted by that community to ensure its success. These exchanges informed the development of NIH’s Implementing a Maternal Health and Pregnancy Outcomes Vision for Everyone (IMPROVE) initiative, which aims to build an evidence base that will enhance maternal care and outcomes from pregnancy through one year postpartum. IMPROVE receives funding support from several NIH Institutes and is co-led by NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development, the NIH Office of the Director, and the NIH Office of Research on Women’s Health.

To date, the IMPROVE initiative has awarded more than $7 million in grants in research areas related to maternal heart disease, hemorrhage or bleeding, and infection (the leading causes of U.S. maternal deaths); contributing conditions, such as diabetes, obesity, mental health disorders, and substance use disorders; and structural and healthcare system factors that may contribute to delays or disruptions in maternal care.

Pivoting to Address COVID-19

Like GRAVID, studies funded by NIH and others continue to produce data to help inform medical care for pregnant women during the pandemic. For example, the CDC’s V-safe registry collects data on COVID vaccine side effects from people across the country. Their recently published findings show that so far, the vaccines are safe and effective for pregnant women, which is reassuring news to people who are undecided about getting the vaccine. 

Looking Ahead

Many factors contribute to maternal morbidity and mortality, and NIH will continue to fund projects to develop tailored, evidence-based solutions for pregnant women across the country. This year, IMPROVE will fund new research to understand the effects of SARS-CoV-2 infection and the COVID-19 pandemic on maternal mental health, well-being, functioning, and quality of life. These research awards also seek to address the impact of structural racism and discrimination on maternal health outcomes in the context of COVID-19.

Every maternal death is one too many.

We encourage pregnant women to get care as early as possible in pregnancy, and to discuss their health and lifestyle habits with their health care providers. In turn, health care providers (including non-obstetricians) should take a health history that includes recent pregnancies and listen to women, especially if they have health factors that increase the risk of complications.

NIH will continue to advance research to help ensure healthy pregnancies and reduce maternal morbidity and mortality. For researchers, whether you’re studying fundamental science, leading clinical studies, conducting population or social/behavioral research, or developing new technologies, an important opportunity exists to improve maternal health and help families across the country.

What opportunities do you see to improve maternal health in your community?

Dr. Bianchi is a co-lead of the NIH’s IMPROVE Initiative. As director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), Dr. Bianchi oversees NICHD’s research on pediatric health and development, maternal health, reproductive health, intellectual and developmental disabilities, and rehabilitation medicine, among other areas.

Dr. Clayton is a co-lead of the NIH’s IMPROVE Initiative. As director of the NIH Office of Research on Women’s Health (ORWH), Dr. Clayton has strengthened NIH support for research on diseases, disorders, and conditions that affect women.

Thank You, My Nurse Colleagues

Writing these blog posts gives me a chance to showcase some of the great work done by our team at NLM, and reflect on the roles I play as part of the NIH leadership team, Director of the National Library of Medicine, a mother-daughter-sister-aunt-friend, and an advocate for self-care management education and support for all people. Yet, nothing compares to the opportunity that this blog gives me to reflect on my chosen profession, nursing.

This year for National Nurses Day, I want to acknowledge the enormous contributions made by all health care professionals in response to the COVID-19 pandemic, particularly by the nurses and members of nursing care teams. I want to express my sorrow and deepest sympathies to the friends, families, and co-workers of nurses who faced health issues or died from work-acquired COVID-19 infections. I am grateful to front line care providers, ranging from nursing home aides to emergency department staff, particularly the nurses whose creative problem solving and attention to complex patient needs helped so many over the past year.

Nurses are well known for their ability to innovate—finding just the right way to make one patient more comfortable or address the respiratory distress of another. The perplexities brought about by the unfamiliarity of the coronavirus infection required innovation at warp speed in nursing units across the country.

I thank you, my nurse colleagues, for what you did over this past year and what you continue to do in the face of tremendous personal risk and self-sacrifice. May your accomplishments give you the strength you need to continue, and your contributions be acknowledged and treasured by those for whom you care.

For my part, I’m not on the front line physically, but the role NLM played this past year was focused on finding ways to support people who are on the front lines of this pandemic. Whether it was providing patient-specific COVID-19 information through our MedlinePlus Connect service, or expanding access to and making available coronavirus-related journal articles to support evidence based practice approaches, NLM has been here for YOU!

We collaborated with publishers to drop paywalls, so that the literature could be available to anyone who needed it. We accelerated processing of genomic sequences to speed up the process of tracking variants and identifying new drug targets. Our team at NLM helped mount the NIH’s response to the COVID pandemic with new research programs, particularly designing advanced data systems to make sure we learn as much from this experience to prepare for the next. While literature cannot provide the comfort of a hug, it can provide ideas that can aid in supporting someone through the process of grief.

My thoughts turn to my nurse colleagues who have witnessed so much death this year—among your patients, co-workers, and communities at large. I extend my wishes for resilience and comfort. I can offer little, but the acknowledgement that your experience of COVID-19 was so different from mine, and the assurance that NLM’s programs of research and offerings of significant literature resources will continue to make available the information needed for practice, and the learning that comes from practice.

In April 2020, as the pandemic was emerging, our colleagues from the United Kingdom offered some helpful hints in this Journal of Clinical Nursing article, one of the freely accessible articles made available through NLM’s Public Health Emergency COVID-19 Initiative. The authors encouraged nurses to address their own psychological and safety needs through peer and team support. This includes looking after each other’s well-being and encouraging temporary and long-standing teams to check-in on each other—particularly at the beginning of a shift, where such contact can activate a sense of social support. The authors also exhort that the stress response to staffing shortages, a sense of futility, and unrelenting grief is normal and will resolve – and yet each person responds differently, so make sure you check in with yourself!

For every one of you who greets each workday with the worry of exposing your family to COVID-19 or putting yourself in harm’s way, I thank you for persisting, and for what you are doing for patients. I trust that the next few months will be a time for resetting your practice to something that is manageable and less fraught with risks.

As we celebrate Nurses Day, we do so with sadness arising from the strains experienced by our profession over the past year, the loss from too many deaths, and the exuberance of the enduring strength of nursing! My hope for Nurses Day 2022 is that our common paths lead to a healthier, safer world. 

Please let me know how NLM can join you on this journey.

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