Every End has a New Beginning

Last week Francis Collins, MD, PhD, announced his plans to step down as the Director of the National Institutes of Health after serving in this position for 12 years. Francis is a force of nature — a tall man with a gigantic vision of how science can serve and improve society. I could recount for you the many ways Francis and his wife, Diane Baker, enhanced NIH.

It was Francis’ vision to establish the National Center for Advancing Translational Sciences at NIH, launch the All of Us Research Program – uniting one million people throughout the United States to advance science through the study of everyday health, and mobilize NIH and a network of partners to mount an effective campaign against the COVID-19 pandemic. Blending his scientific expertise with a deep love for music, Francis launched the Sound Health Initiative between NIH and the John F. Kennedy Center for the Performing Arts, in association with the National Endowment for the Arts, to bring together neuroscience and music to explore the potential for music to treat a wide range of conditions resulting from neurological and other disorders. 

Diane made it her mission to be sure that the children, patients, and families who came to the NIH Clinical Center for with hopes of life-saving therapeutics felt the support of the entire NIH community. Whether it was mobilizing volunteers to cook a Sunday dinner for families at The Children’s Inn at NIH or organizing fundraisers to provide free lodging and support for families whose children were undergoing treatment, Diane was there. Personally, Diane reached out to me when I arrived at NIH and encouraged me to find ways NLM could enhance its support to patients and families. This very invitation led to some wonderful connections that resulted in making NLM’s resources more valuable to more people.

Francis taught me what it means to have a boss with passion and vision. His personal engagement with data science and molecular biology made him keenly aware of the value of NLM’s mission to advance science. He listened carefully as NLM leadership made a case for modernizing our important resources that support broad access to genomic data and enable researchers, clinicians, patients, and the public find clinical trials information. Francis had a knack for putting NIH Institute and Center directors in front to tell the story of NIH’s accomplishments to Congress and the public. It is this very strategy that helped me recognize that the best spokespeople for NLM are those leaders who provide our services every single day.

We are at the dawning of a new era — for Francis and Diane, for NIH, and for NLM. Francis is not leaving NIH – he will continue to lead his research laboratory at the National Human Genome Research Institute, with a focus on the genomic basis for diseases such as type 2 diabetes. I am sure Diane’s passion for public service will continue to find new expressions.

Under new leadership, NIH will grow in new ways that I know will be grounded in our decades of accomplishments in understanding the basic mechanisms of disease, mobilizing research to improve public health, and data-driven discovery. NIH will persist in its commitment to advance health equity while addressing structural racism. NLM will continue to expand its investments in scientific communication, large-scale data resources, and the network needed to be sure that the opportunities and benefits of science reach people in communities across the country through our Network of the National Library of Medicine.

I send my best wishes to Francis and Diane with my deepest respect, gratitude for your support of the NLM and its mission, heartfelt thanks for what you have taught me, and a great blessing of the Irish:

May the blessings of each day
Be the blessings you need most
.

– Irish Proverb

THANK YOU, FRANCIS!

Thanks, Dr. Fauci!

Perhaps the most famous NIH staffer right now is Anthony Fauci, MD, Director of the National Institute of Allergy and Infectious Diseases (NIAID), and one of the leading voices throughout the COVID-19 pandemic. Prepared by more than 50 years of government service and research on infectious diseases, Dr. Fauci is a public servant who brings reason, expertise, and a keen sense of how to mobilize the public health sector to act against this unprecedented threat to public health.

Like many others around the country and the world, my family and I think of Dr. Fauci as “our doctor.” He speaks to us, giving a personal response to ensure the public’s health. He understands the challenges of having family at a distance during times when travel and family gatherings are discouraged to reduce the spread of infection. He shares the joys of those reunions—full of hugs from family and friends—so long missed. It’s amazing to me that Dr. Fauci has been able to convey such warmth and concern to the world and be the deliverer of trusted knowledge in such a personal manner. More than once, conversation at a family dinner or on a family phone call has included the question, “But what does Dr. Fauci think about . . .?” followed by heartfelt wishes of gratitude from my mother and siblings!

I am privileged to be part of the NIH leadership team who meets weekly to advance the mission of the world’s largest research enterprise. While we address wide ranging issues from advancing biomedical science to NIH infrastructure and operations, discussions about NIH’s response to the COVID-19 pandemic still dominate. Like others, I find Tony a wise and experienced colleague, thoughtful in his contributions, and quick to bring a sometimes much-needed touch of humor into complicated conversations. I marvel at his stamina and the breadth of issues that engage his mind.

Tony Fauci has built a superb team of scientists, clinicians, and administrators within NIAID. The dedication and intellectual generosity evident in his contributions to our efforts are evident across NIAID – clearly an inspirational leader motivates and inspires!

So please join me in expressing gratitude to my colleague, Tony Fauci – a national treasure!

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.