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.

NLM Announces New Annual Lecture on Science, Technology, and Society

Guest post by Maryam Zaringhalam, PhD, National Library of Medicine Data Science and Open Science Officer and Mike Huerta, PhD, director of the Office of Strategic Initiatives and associate director of the National Library of Medicine.

In October 2019, NLM invited award-winning science journalist Angela Saini to discuss her research on how bias and prejudice have crept into science. Her lecture examined how racist and sexist ideas have permeated science over its history — and how science, in turn, has been contorted to justify and perpetuate pseudoscientific myths of innate inferiority. Saini’s work and insights sparked a crucial conversation within NLM about our role and responsibility as the world’s largest biomedical library and a leader in data science research, situated within the nation’s premiere medical research agency, to question how systemic biases affect our work and determine how we can correct them.

As advancing equity and rooting out structural discrimination in science and technology have become an increasingly urgent federal priority, NLM will build on this discussion, in part, by announcing the launch of an annual NLM Science, Technology, and Society Lecture on March 1, 2021.

Situated at the nexus of the NIH-supported research community and the public, NLM plays a vital role not only in advancing cutting-edge research, but also in acting as a steward of biomedical information in service of society. As leaders in facilitating and shaping the future of biomedical data science, we must understand the implications of our work for society as a whole. We must, for instance, question how biases may creep into algorithms that connect research results with the public and think through the ethical ramifications of emerging technologies that might reinforce and amplify those biases. As a national library, we serve as curators of the history of biomedical science, which must reflect both the great achievements made possible by research and the injustices committed within the scientific community. And as an institution with more than 8,000 points of presence through our Network of the National Library of Medicine, we have the means to fulfill our responsibility to meet the needs and understand the concerns of the communities we serve.

With these responsibilities along with NLM’s unique role and capabilities in mind, the NLM Lecture on Science, Technology, and Society Lecture aims to raise awareness around the societal and ethical implications of the conduct of biomedical research and the use of advanced technologies, while seeding conversations across the Library, NIH, and the broader biomedical research community. NLM sees such considerations as fundamental to advancing biomedical discovery and human health for the benefit of all.

Dr. Kate Crawford is the inaugural Visiting Chair of AI and Justice at the École Normale Supérieure, as well as a Senior Principal Researcher at Microsoft Research, and the cofounder of the AI Now Institute at New York University.

Each spring, we plan to invite a leading voice working at the intersection of biomedicine, data science, ethics, and justice to present their research and how it relates to the mission and vision of NLM, as well as NIH more broadly. This year, we are pleased to host Dr. Kate Crawford, a leading scholar of science, technology, and society, with over 20 years of experience studying large scale data systems and artificial intelligence (AI) in the wider contexts of history, politics, labor, and the environment. Her lecture, “Atlas of AI: Mapping the social and economic forces behind AI”, will explore how machine learning systems can reproduce and intensify forms of structural bias and discrimination and offer new paths for thinking through the research ethics and policy implications of the turn to machine learning.

As the interests, priorities, and concerns of our society continue to evolve, particularly in response to emerging technologies and shifting national conversations, we hope this annual lecture, alongside established lecture series such as NLM History Talks, will provide an invaluable perspective on the societal implications of our work and further establish NLM’s leadership as a trusted partner in health.

Dr. Zaringhalam is a member of the Office of Strategic Initiatives and is responsible for monitoring and coordinating data science and open science activities and development across NLM, NIH, and beyond. She completed her PhD in molecular biology at Rockefeller University in 2017 before joining NLM as an AAAS Science and Technology Policy Fellow.

Dr. Huerta leads NLM in identifying, implementing, and assessing strategic directions of NLM, including at the intersection of data science and open science. In his 30 years at NIH, he has led many trans-NIH research initiatives and helped establish neuroinformatics as a field. Dr. Huerta joined NIH’s National Institute of Mental Health in 1991, before moving to NLM in 2011.

Hispanic Heritage Month: Improving Access to Health Information

Hispanic Heritage Month (September 15 to October 15) celebrates the many contributions to U.S. society of people originating from Spain, Mexico, the Caribbean, and South and Central America.

Today, there are almost 60 million Latinx-identifying or Spanish-speaking people in the United States (about 18% of the total U.S. population). Representing our nation’s largest ethnic or racial minority, the median age of the Hispanic population is 29.5 years, which is younger than the median age of about 38 years for the overall U.S. population. About 50% are female, almost half are married, and, unlike their non-Hispanic counterparts, they tend to live in households with children. The number of U.S.-born Hispanics is growing faster than the number of Hispanic immigrants.

The Centers for Disease Control and Prevention reports that people of all races who identify as Hispanic are more likely to develop chronic conditions such as cardiovascular disease, type 2 diabetes, and obesity. Each of these conditions can be managed, or even delayed or prevented, by engaging in healthy lifestyle behaviors that include physical activity, healthy eating, and regular check-ups.

So, the health and the health information needs of Hispanics in the United States, and the well-documented disparities that exist between the Hispanic population and other populations, is of critical importance to NLM.

Our powerful consumer health information resource, MedlinePlus, and our Spanish-language version, MedlinePlus en Español, are trusted sources of accurate health information, and we strive to make them culturally sensitive, relevant, and accessible. Our amazing PubMed literature citation database promotes access to research literature in both English and Spanish, and our molecular resources allow for exploring the intersection of genetics and nationalistic identity.

In addition to these online resources, NLM supports Hispanic individuals, families, and groups through our National Network of Libraries of Medicine (NNLM). Serving diverse communities, the NNLM provides another pathway for providing linguistically and culturally relevant health information.  

The NNLM is a powerful human network of over 7,000 academic health science libraries, hospital and public libraries, and community organizations that provide a point of presence in almost every county in the United States. Its eight Regional Medical Libraries (RMLs) make sure that up-to-date information about NLM’s resources are accessible to communities that are often underrepresented in biomedical research. Although all the RMLs provide access to information in English and Spanish, I’d like to highlight the efforts of two of our regions: the South Central Region, serving Arkansas, Louisiana, New Mexico, Oklahoma, and Texas, and the Pacific Southwest Region, serving Arizona, California, Hawaii, Nevada, and the U.S. Territories in the Pacific. Together, these two regions serve 28 million Hispanics — reaching almost half of the Spanish-speaking population in the United States.

The South Central Region supports the Spanish-speaking community specifically through many programs, including outreach to Presbyterian Española Hospital in Española, New Mexico, a special award to the University of North Texas Health Science Center to support a Library School student from a minority community, and emergency funding for Mobile Programming/Pop-up Program Resources & Tools to support disaster relief and response. The Pacific Southwest Region offers programs that engage community health workers/promotores through activities that address social determinants of health as an approach to health education and promotion in the Hispanic community.

But service to the Spanish-speaking public is not limited to the South Central and Pacific Southwest regions. The Middle Atlantic Region offers Spanish language health information resources on topics ranging from AIDS to cancer to diabetes. An interesting program from the Pacific Northwest Region is a grant to bring health information and access to MedlinePlus en Español over the airways from local public libraries to the region.

Because NNLM members are embedded in their communities, they can utilize NLM resources to meet the particular needs of that community. The professional librarians in these communities provide a feedback loop that helps NLM appreciate both the professional terminology associated with critical health concerns and the need to map local colloquial language for Medical Subject Headings (MeSH) to index the literature.  

The NNLM not only helps us extend the amazing federal investment from Washington, DC, to local communities, but also helps ensure that federal staff in Washington understand, in the vernacular, the health concerns of this important population.

During Hispanic Heritage Month — and throughout the year — it’s important to think about how NLM can better engage with the populations we serve. I welcome your suggestions to ensure that our vast and trustable resources serve everyone, everywhere.