The right to breathe: how policymakers can tackle severe asthma

Asthma impacts over 330 million people worldwide. While severe asthma makes up only 5-10 percent of cases, it is accountable for over half of asthma-related costs globally.[1] It profoundly affects patients’ lives, undermining their physical, mental and economic well-being, and increasing the risk of preventable deaths. Despite its significance, severe asthma is often overshadowed by other health priorities, leading to inadequate resource allocation and substandard care, further straining already pressured health systems.

Severe asthma outcomes, like many other chronic diseases, are deeply entangled with a wide range of environmental and socio-economic factors. Therefore, addressing it is not merely about medical intervention, but about creating and implementing comprehensive, holistic strategies.

The challenges presented by severe asthma are not beyond our capabilities. Around the globe, there is a wide range of best practices, treatments, and approaches to asthma management. Yet, the path to transformation demands a unified commitment from a broad set of stakeholders, from policymakers to medical professionals, industry, patients and beyond. While the blueprint for a future unburdened by severe asthma exists, it is up to decision-makers to realize it together.

While the blueprint for a future unburdened by severe asthma exists, it is up to decision-makers to realize it together.

And the good news is that progress is already underway. Since autumn 2022, we have collaborated as an international expert group to support the development of the Copenhagen Institute for Futures Studies’ (CIFS) Severe Asthma Index. This tool assesses how 29 OECD countries manage severe asthma across various indicators, such as national strategies, treatment access, hospitalizations, societal costs and air quality, among others.

While the Severe Asthma Index is an important stride in tackling severe asthma, the true test lies in how its insights are applied in practice. Among the many actions needed to be taken to improve severe asthma care, the most pressing concern is policy change.

We have identified three actions, derived from the work we have conducted to date, for policymakers to kickstart strengthening health systems’ approaches to and management of severe asthma:

  1. Development and implementation of national asthma plans and strategies

The Severe Asthma Index has found that less than half of the countries analyzed have a national strategy for asthma, prevention, and management. There is, therefore, a need to formulate and actively implement dedicated national asthma programs, tailored to the unique challenges of individual health systems. These programs should not only emphasize prevention, early detection and diagnosis but also adapt best practices to specific national and local contexts.

Importantly, plans should be situated in the context of long-term strategies for improving population health outcomes.

“In England, work around respiratory illness is gaining traction,” notes Sir David Behan, chair of Health Education England, NHS, and expert group member. “Part of the initiative being developed [is] to ease pressure on the emergency care pathways and hospitals.”  

All approaches should promote awareness on respiratory diseases, support personalized care plans, empower patients and improve training and opportunities for training health care professionals working in respiratory care.

2. Coordination and harmonization of policies and care guidelines

There is a patchwork of country approaches to severe asthma, illustrated by the observation that more than two-thirds of the country guidelines assessed in the Severe Asthma Index do not fully align with the Global Initiative for Asthma’s (GINA) guide for Difficult-to-treat and Severe Asthma in Adolescence And Adult Patients. Policymakers must strive to coordinate their approaches to severe asthma by harmonizing policies and guidelines for asthma care to the greatest possible extent, with the aim of reducing outcome disparities, bolstering equity and promoting health system sustainability.

In doing so, there should be an emphasis on identifying and scaling best practices, promoting cross-border collaboration, and championing holistic solutions informed by the widely-acclaimed Health in All Policies approach.

The Australian National Asthma Council’s Australian Asthma Handbook is a strong example of a best practice in this area that policymakers could draw inspiration from in acting on this point.

3. Supporting improved data collection and the development of a more robust evidence base for severe asthma

Policymakers should incentivize and ultimately mandate improved production, recording and utilization of asthma- and severe asthma-specific data, as well as identifier data such as prescription data, adherence to treatment regimes, lung function analysis and demographic and socioeconomic indicators, following a set of common standards.

Currently, despite the existence of clinical codes for severe asthma, the condition remains significantly underreported in clinical settings due in large part to inconsistent coding practices, leading to an increased probability of patients receiving inadequate care and suboptimal allocation of health system resources. The dearth of severe asthma data and barriers to accessing the few datasets that do exist render it difficult to develop a comprehensive and consistent understanding of the full impact of severe asthma.

National policymakers need to prioritize financial and logistical support for country-level asthma research. Research activities should aim to produce a solid evidence base that will offer a nuanced understanding of each country’s needs, challenges and opportunities regarding asthma care. Support for research activities granted over the long term will enable longitudinal studies so that national trends and progress can be accurately tracked.

Only 3 percent of the European Union’s budget for health [is] spent on lung health, although 13 percent of Europeans have lung disease.

“Only 3 percent of the European Union’s budget for health [is] spent on lung health, although 13 percent of Europeans have lung disease,” says Susanna Palkonen, director of the European Federation of Allergy & Airways Diseases Patients’ Associations (EFA) and expert group member.

The International Severe Asthma Registry (ISAR) initiative provides a strong basis for continued work in this area.

The path ahead requires that these actions evolve in tandem with the latest advancements in respiratory care and approaches to the management and prevention of noncommunicable diseases. This is not simply about updating and developing new policies — it’s about crafting robust and well-rounded solutions that proactively address a health challenge that is both global and local and supporting a much-needed vision for improved respiratory health outcomes.

As we look forward, we cannot just treat asthma. We must transform our approach to ensure that every patient’s right to breathe becomes a global reality.


Author(s):
Patrick Henry Gallen, senior advisor and futurist at Copenhagen Institute for Futures Studies

Bogi Eliasen, director of health at Copenhagen Institute for Futures Studies

Professor Dr. Vibeke Backer, MD, DMSci, chief respiratory physician at Department of ENT and Centre for Physical Activity Research (CFAS), Rigshospitalet, Copenhagen, Denmark

Sir David Behan, chair Health Education England, National Health System (NHS), U.K.​

Dr. Mark Levy, board member, Global Initiative for Asthma (GINA), U.K.​

Mikaela Odemyr, chair European Lung Foundation (ELF) Patient Advisory Committee; chair Swedish Asthma and Allergy Association, Sweden

Susanna Palkonen, director, European Federation of Allergy and Airways Diseases Patients’ Associations (EFA)  

Professor Dr. Arzu Yorgancıoğlu, chair European Respiratory Society (ERS) Advocacy Council; member of Global Initiative on Asthma (GINA) Board; chair of GINA Dissemination and Implementation Committee; chair of the WHO GARD Executive Committee Turkey 


References:
[1] Al Efraij K, FitzGerald JM. Current and emerging treatments for severe asthma. J Thorac Dis 2015;7(11):E522-E525



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It’s time to hang up on the old telecoms rulebook

Joakim Reiter | via Vodafone

Around 120 years ago, Guglielmo Marconi planted the seeds of a communications revolution, sending the first message via a wireless link over open water. “Are you ready? Can you hear me?”, he said. Now, the telecommunications industry in Europe needs policymakers to heed that call, to realize the vision set by its 19th-century pioneers.

Next-generation telecommunications are catalyzing a transformation on par with the industrial revolution. Mobile networks are becoming programmable platforms — supercomputers that will fundamentally underpin European industrial productivity, growth and competitiveness. Combined with cloud, AI and the internet of things, the era of industrial internet will transform our economy and way of life, bringing smarter cities, energy grids and health care, as well as autonomous transport systems, factories and more to the real world.

5G is already connecting smarter, autonomous factory technologies | via Vodafone

Europe should be at the center of this revolution, just as it was in the early days of modern communications.

Next-generation telecommunications are catalyzing a transformation on par with the industrial revolution.

Even without looking at future applications, the benefits of a healthy telecoms industry for society are clear to see. Mobile technologies and services generated 5 percent of global GDP, equivalent to €4.3 trillion, in 2021. More than five billion people around the world are connected to mobile services — more people today have access to mobile communications than they do to safely-managed sanitation services. And with the combination of satellite solutions, the prospect of ensuring every person on the planet is connected may soon be within reach.

Satellite solutions, combined with mobile communications, could eliminate coverage gaps | via Vodafone

In our recent past, when COVID-19 spread across the world and societies went into lockdown, connectivity became critical for people to work from home, and for enabling schools and hospitals to offer services online.  And with Russia’s invasion of Ukraine, when millions were forced to flee the safety of their homes, European network operators provided heavily discounted roaming and calling to ensure refugees stayed connected with loved ones.

A perfect storm of rising investment costs, inflationary pressures, interest rate hikes and intensifying competition from adjacent industries is bearing down on telecoms businesses across Europe.

These are all outcomes and opportunities, depending on the continuous investment of telecoms’ private companies.

And yet, a perfect storm of rising investment costs, inflationary pressures, interest rate hikes and intensifying competition from adjacent industries is bearing down on telecoms businesses across Europe. The war on our continent triggered a 15-fold increase in wholesale energy prices and rapid inflation. EU telecoms operators have been under pressure ever since to keep consumer prices low during a cost-of-living crisis, while confronting rapidly growing operational costs as a result. At the same time, operators also face the threat of billions of euros of extra, unforeseen costs as governments change their operating requirements in light of growing geopolitical concerns.

Telecoms operators may be resilient. But they are not invincible.

The odds are dangerously stacked against the long-term sustainability of our industry and, as a result, Europe’s own digital ambitions. Telecoms operators may be resilient. But they are not invincible.

The signs of Europe’s decline are obvious for those willing to take a closer look. European countries are lagging behind in 5G mobile connectivity, while other parts of the world — including Thailand, India and the Philippines — race ahead. Independent research by OpenSignal shows that mobile users in South Korea have an active 5G connection three times more often than those in Germany, and more than 10 times their counterparts in Belgium.

Europe needs a joined-up regulatory, policy and investment approach that restores the failing investment climate and puts the telecoms sector back to stable footing.

Average 5G connectivity in Brazil is more than three times faster than in Czechia or Poland. A recent report from the European Commission — State of the Digital Decade (europa.eu) shows just how far Europe needs to go to reach the EU’s connectivity targets for 2030.

To arrest this decline, and successfully meet EU’s digital ambitions, something has got to give. Europe needs a joined-up regulatory, policy and investment approach that restores the failing investment climate and puts the telecoms sector back to stable footing.

Competition, innovation and efficient investment are the driving forces for the telecoms sector today. It’s time to unleash these powers — not blindly perpetuate old rules. We agree with Commissioner Breton’s recent assessment: Europe needs to redefine the DNA of its telecoms regulation. It needs a new rulebook that encourages innovation and investment, and embraces the logic of a true single market. It must reduce barriers to growth and scale in the sector and ensure spectrum — the lifeblood of our industry — is managed more efficiently. And it must find faster, futureproofed ways to level the playing field for all business operating in the wider digital sector.  

But Europe is already behind, and we are running out of time. It is critical that the EU finds a balance between urgent, short-term measures and longer-term reforms. It cannot wait until 2025 to implement change.

Europeans deserve better communications technology | via Vodafone

When Marconi sent that message back in 1897, the answer to his question was, “loud and clear”. As Europe’s telecoms ministers convene this month in León, Spain, their message must be loud and clear too. European citizens and businesses deserve better communications. They deserve a telecoms rulebook that ensures networks can deliver the next revolution in digital connectivity and services.



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Harnessing innovation in robotic-assisted surgery


For nearly three decades, Intuitive has been developing innovative approaches in the field of minimally-invasive care. We are guided by the belief that minimally-invasive care can be life changing, that patient outcomes can be profoundly improved and that enhanced clinical outcomes can sustainably lower the total cost of comprehensive care.

Our focus is on helping customers in Europe and around the world achieve better outcomes, better surgeon and care team experiences, better patient experiences and lower cost of care. Positive impact in these areas requires a holistic effort that includes not only leading-edge, integrated systems and software, but also an ecosystem of education and support that extends across the patient care pathway and the broader health care system.

What is robotic-assisted surgery?

27 years ago, Intuitive launched the da Vinci robotic-assisted surgical system, transforming the field of minimally-invasive surgery.

Robotic-assisted surgery is a form of minimally-invasive surgery performed by a surgeon using a computer-assisted system to operate through small incisions using tiny, wristed instruments. Robotic-assisted surgical systems do not perform surgery on their own and they do not replace surgeons. Surgeons completely control da Vinci robotic-assisted surgical systems, while seated at an ergonomic console that uses high-definition, 3D vision to magnify the patient’s anatomy. The surgical system translates the surgeon’s hand movements in real time to bend and rotate the instruments with greater flexibility, precision and range of motion than the human hand. This approach can augment a surgeon’s skills and capabilities while allowing them to continue to apply their judgment and experience.

To date, more than 12 million da Vinci robotic-assisted surgical procedures have been performed worldwide — including more than 1.2 million in Europe — across a range of procedures including urology, gynecology, colorectal, thoracic, general surgery and more.

Robotic-assisted surgery is a form of minimally-invasive surgery performed by a surgeon using a computer-assisted system to operate through small incisions using tiny, wristed instruments.

A growing body of research, including more than 34,000 peer-reviewed studies, suggests that minimally-invasive, robotic-assisted surgery can offer patients benefits in many cases, depending on the procedure, including one or more of these benefits: less blood loss, fewer complications, shorter hospital stays, and less chance of hospital readmission.[i]

The added value of robotic-assisted surgery for European health care systems

Since the first robotic-assisted da Vinci prostatectomy was performed in Germany nearly 20 years ago, more than 1,500 da Vinci systems have been installed in Europe, highlighting Europe’s strong demand for this innovative technology. But, while Europe has helped drive this technology forward, more can be done to help hospitals in Europe become world leaders in the 21st century.

Similar to health care systems around the world, Europe faces challenges including rising health care costs, a pressured workforce, aging populations and increasing burdens of disease. At the same time, patients across Europe are seeking equitable access to innovative, high-quality care.

Using our more than two decades of experience working with hospitals and health care systems across Europe, we strive to offer solutions to these multifaceted challenges that are aligned with our customers’ clinical and economic capabilities and goals. A key insight from our experience is that we must provide more than a “robotic-assisted surgical system”; we must be a “technology-enabled solutions partner and provider”. Robotic-assisted surgery as a modality can help drive better patient outcomes; robotic-assisted surgical programs as a key part of a hospital’s care pathway can help optimize the cost and efficiency and advance the delivery and quality of care.

As one example, we collaborate with hospitals to examine opportunities to sustainably increase throughput and introduce efficiencies that can allow them to treat more patients and reduce patient backlogs. Solutions that our customers have enacted as a result of these engagements include improving operating room set up time, scheduling optimization, standardizing pre-operative planning for care teams, and starting surgical days earlier. 

In all cases, we work to assure that any effort is seamlessly integrated into the workflows of our hospital customers and their broader patient care pathways, and that our success is defined and measured in alignment with their goals.

Training

Central to our holistic approach is our technology training, which is essential to maximize patient safety and a vital part of any successful robotic-assisted surgery program. Our four-phase training pathway combines skills and technology training with opportunities for health care professionals around the world to learn from their peers. Our robust training offerings include a combination of simulation, virtual learning, in-person observation and hands-on training, with high-quality tissue models and peer-to-peer mentoring, proctoring and advanced learning opportunities. The training tools and technologies we offer are informed by our unique understanding of best practices and can help users build their skills by targeting individualized areas for improvement.

We believe that our robust training programs are contributing to the development of the next-generation health care workforce.

Last year, we became the largest provider of robotic-assisted surgical technology training to have our full global training portfolio accredited by The Royal College of Surgeons. And, our industry-leading offerings are more available than ever across both virtual and in-person opportunities; we now have more than 25 training centers and partnerships across Europe.

Looking forward, we believe that our robust training programs are contributing to the development of the next-generation health care workforce and motivating existing surgical staff to stay within our health care systems. We will continue to evolve and innovate our training offerings by listening to and learning from surgeons and teams to identify the practices that lead to better results and hone our efforts to offer meaningful interoperative guidance.

Total cost to treat

While there is an upfront investment in robotic-assisted technology, the experience of hospitals across Europe shows that da Vinci systems can help realize a return on this investment. The benefits of minimally-invasive care — fewer complications and readmissions, less blood loss, less pain — help to avoid higher ‘downstream’ costs and resource use associated with traditional, or “open” surgery, which typically requires longer hospital stays and presents a greater risk of post-operative complications.[ii] Robotic-assisted approaches, like the da Vinci system, can therefore help to reduce the costs and resources associated with a complete patient journey, or ‘episode of care’.

An important indicator of the economic value of this cost avoidance can be found in hospitals’ investment decisions in recent years. Based on their own medical records, financial data, and unique reimbursement and cost structures, hospitals are increasingly choosing to commit to robotic-assisted technology. Our own data shows that the number of hospital Integrated Delivery Networks, or IDN’s, with more than seven da Vinci systems has increased by more than 150 percent in the past five years.[iii] We believe this demonstrates a trend from cautious adoption to standardization based on recognized value. This trend brings the benefits of minimally-invasive care to an increasingly larger number of users, helping to accelerate and compound the potential savings to the health care system over time.

A vision for 2030: a future of European health care excellence

The next European Commission term will almost reach the end of this decade, serving as a useful marker for us to imagine where Europe could be in health care delivery by 2030.

Looking ahead, it will be essential that policymakers create an environment where advancements in robotic-assisted tools and technology, digital health and patient-focused innovation can be seamlessly integrated in a way that prioritizes patient safety and facilitates equitable access to and adoption of innovative technology.

The infrastructure and tools needed for future success are already present. Europe can lead the way in creating this environment, in part by avoiding policies which inhibit this kind of integration and innovation through duplicative or conflicting regulatory structures. We look forward to contributing to an ambitious agenda to bring cutting-edge health care, training, and innovations to European patients and health care professionals.

This material may contain estimates and forecasts from which actual results may differ.


[i] Bhama, A. R., et al. (2016). “Comparison of Risk Factors for Unplanned Conversion from Laparoscopic and Robotic to Open Colorectal Surgery Using the Michigan Surgical Quality Collaborative (MSQC) Database.” Journal of Gastrointestinal Surgery: 1-8

Oh, D. S., et al. (2017). “Robotic-Assisted, Video-Assisted Thoracoscopic and Open Lobectomy: Propensity-Matched Analysis of Recent Premier Data.” Annals of Thoracic Surgery 104(5): 1733-1740.

Ran, L., et al. (2014). “Comparison of robotic surgery with laparoscopy and laparotomy for treatment of endometrial cancer: a meta-analysis.” PLoS ONE 9(9): e108361.

Speicher, P. J., et al. (2014). “Robotic Low Anterior Resection for Rectal Cancer: A National Perspective on Short-term Oncologic Outcomes.” Annals of Surgery.

Tam, M. S., et al. (2015). “A population-based study comparing laparoscopic and robotic outcomes in colorectal surgery.” Surgical Endoscopy and Other Interventional Techniques.

Pilecki, M., et al. (2014). „National Multi-Institutional Comparison of 30-Day Postoperative Complication and Readmission Rates Between Open Retropubic Radical Prostatectomy and Robot-Assisted Laparoscopic Prostatectomy Using NSQIP (National Surgical Quality Improvement Program)“ Journal of Endourology, 430 – 436.

Tewari A, et al. “Positive Surgical Margin and Perioperative Complication Rates of Primary Surgical Treatments for Prostate Cancer: A Systematic Review and Meta-Analysis Comparing Retropubic, Laparoscopic, and Robotic Prostatectomy,” Eur Urol. 2012 Feb 24.7.

Carbonell, A. M., et al. (2017). “Reducing Length of Stay Using a Robotic-Assisted Approach for Retromuscular Ventral Hernia Repair: A Comparative Analysis from the Americas Hernia Society Quality Collaborative,” Annals of Thoracic Surgery.

Lim, P. C., et al. (2016). “Multicenter analysis comparing robotic, open, laparoscopic, and vaginal hysterectomies performed by high-volume surgeons for benign indications,” International Journal of Gynecology and Obstetrics.

O’Neill, Michelle, et al. “Robot-assisted hysterectomy compared to open and laparoscopic approaches: systematic review and meta-analysis,” Archives of gynecology and obstetrics 287.5 (2013): 907-918.

Geppert B, Lönnerfors C, Persson J. “Robot-assisted laparoscopic hysterectomy in obese and morbidly obese women: surgical technique and comparison with open surgery.”  Acta Obstet Gynecol Scand. 90.11 (2011): 1210-1217. doi: 10.1111/j.1600-0412.2011.01253.x. Epub.

[ii] Id.

[iii] Intuitive internal data measuring from year end 2017 to year end 2022.



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Labs: the (overlooked) building block of Universal Health Coverage

Hepatitis C (HCV) — a potentially life-threatening virus that infects 1.5 million new people around the world every year — is highly treatable if diagnosed early.[1]

Unfortunately,  access to quality screening is far from universal. Countries like Egypt — one of the countries with the highest prevalence of HCV in the world — demonstrate the impact screening can have. In 2015, HCV was prevalent in an estimated 7 percent of the country’s population and accounted for 7.6 percent of the country’s mortality, presenting a significant health care and societal burden.[2]

But since then, Egypt has turned a corner. In 2018, the Egyptian Ministry of Health and Population launched a massive nationwide HCV screening and treatment campaign as part of its 2014-2018 HCV action plan.[3] The campaign’s results were inspiring: by July 2020, Egypt had screened more than 60 million people[3] and treated 4 million residents.[2] Today, Egypt is set to be the world’s first country to eliminate HCV within its borders.[2]

The results of Egypt’s HCV screening program speak to diagnostics’ power in contributing to improved health outcomes around the world. Among the essential components of any health system is the capacity for prevention, which includes timely screening and detection. But a preventive approach based on timely diagnosis won’t work without the right infrastructure in place.

Strong laboratories as a cornerstone of building better health care

Matt Sause, CEO Roche Diagnostics | via Roche

The World Health Organization (WHO) highlights the critical role well-functioning laboratory services play in health systems with good reason.[4] Around the world, clinicians increasingly rely on  laboratory tests for diagnostic and treatment decisions. These tests help them make more informed decisions that result in better care and potentially improved outcomes for patients.

The challenges facing labs today — and tomorrow

Two key challenges facing laboratory systems today are underfunding and insufficient resources. Despite their central importance, laboratories struggle to garner the political and financial support they need to be as effective as possible. For example, it’s estimated that while lab results drive approximately 70 percent of clinical decision making, laboratories make up only 5 percent of hospital costs.[5]

After all, it’s the health care systems with strong, resilient labs that will be best placed to manage future pandemics and ever-growing health threats like heart disease and dementia.

What’s needed is a political commitment to provide everyone with access to accurate and timely diagnosis that paves the way to effective treatment and health. And putting this commitment into practice can only be achieved and sustained through coordinated multistakeholder efforts and public—private partnerships. This is not just a worthwhile investment for patients, but also the wider health care system in the long run. After all, it’s the health care systems with strong, resilient labs that will be best placed to manage future pandemics and ever-growing health threats like heart disease and dementia.

Another challenge is the health care workforce. Effective use of diagnostics requires qualified people to drive it, with expertise in pathology and laboratory medicine. Yet the world currently faces a laboratory staffing shortage. For diagnostics in particular, baccalaureate degree programs in laboratory science have previously been on the ‘endangered list’ of allied health professions.[6] In the end, inadequately trained staff, frequent turnover and scheduling problems all make quality lab results more difficult to guarantee.

This UHC ambition is only possible when backed by a network of strong laboratories that help ensure individuals can access high-quality diagnostics services without financial burden in all health care systems.

And that’s not all: inadequate infrastructure and staffing shortages are more present in low-income, rural communities, which exacerbate the broader diagnostics gap troubling global health care today. Many low-income countries lack an integrated laboratory network that can fully provide high-quality, accessible and efficient laboratory testing services for the entire population. In fact, a commission convened by The Lancet concluded that 81 percent of these populations have little or no access to diagnostics.[7]

The path to Universal Health Coverage

Put simply, innovative diagnostics are only meaningful if they reach people where and when they’re needed. Advancing this equity is at the heart of the WHO’s vision for Universal Health Coverage (UHC) by 2030. The goal? To guarantee all people have access to high-quality services for their health and the health of their families and communities, without facing financial hardship.

This UHC ambition is only possible when backed by a network of strong laboratories that help ensure individuals can access high-quality diagnostics services without financial burden in all health care systems. To do this, UHC should explicitly include diagnostics services. Financially, it’s savings from screening, early diagnosis and targeted treatment that make UHC feasible. Health care systems will have to undergo a systemic shift from focusing on treatment to focusing on prevention. And that’s just not possible when clinicians don’t have access to fast, accurate and cost-efficient lab results to inform their clinical decision-making. Policies and regulations that safeguard UHC goals of access and health equity are essential to make progress toward UHC.[8] The Saving Access to Laboratory Services Act (SALSA), in the United States, is an example of how national policies can help to ensure sustainable laboratory networks and contribute to equitable access to essential healthcare.

Stronger labs can not only help health care systems make savings in the routine management of population health; investing in them also helps to reduce costs and prepare in advance for any future public health crises.

This year has already seen encouraging progress toward achieving UHC through enhanced diagnostics capacity. The adoption of the resolution on strengthening diagnostics capacity at the World Health Assembly in May was an important signal of growing international political support for diagnostics. It was also a call to action. The next step for this month’s United Nations General Assembly and Sustainable Development Goals (SDG) Summit is channeling political support for diagnostics into the development of an action-oriented declaration.

To put us closer to UHC, this declaration should commit to ensuring that national health plans include access to timely detection and prevention. That starts with supporting laboratory systems and establishing National Essential Diagnostics Lists that identify the most critical diagnostic tests to help diagnose patients quickly and accurately so that they can receive needed treatment. At Roche, we’re advocating that governments, industry, civil society and other policy stakeholders will come together around concrete plans and shared resources that strengthen diagnostics and the lab infrastructure that makes them effective. In line with our commitment to increase patient access to important diagnostic solutions by 2030, we plan to do our part.


[1] Hepatitis C. World Health Organization. Available at: https://www.who.int/news-room/fact-sheets/detail/hepatitis-c (Accessed 22.08.2023)

[2] Egypt’s Ambitious Strategy to Eliminate Hepatitis C Virus: A Case Study. Hassanin, A. et al. Available at:   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8087425/ (Accessed 22.08.2023)

[3] Hepatitis C in Egypt – Past, Present, and Future. Roche Diagnostics. Available at: https://diagnostics.roche.com/global/en/article-listing/egypt-s-road-to-eliminating-hepatitis-c-virus-infection—a-stor.html (Accessed 22.08.2023)

[4] Monitoring the Building Blocks of Health Systems. World Health Organization. Available at: https://apps.who.int/iris/bitstream/handle/10665/258734/9789241564052-eng.pdf (Accessed 14.07.2023)

[5] The Cost-effective Laboratory: Implementation of Economic Evaluation of Laboratory Testing. Bogavac-Stanojevic N. & Jelic-Ivanovic Z. J Med Biochem. Volume 36, Issue 3, 238 – 242. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287218/

[6] Ensuring Quality Cancer Care through the Oncology Workforce: Sustaining Care in the 21st Century: Workshop Summary. National Academy of Sciences. Available at: https://www.ncbi.nlm.nih.gov/books/NBK215247/ (Accessed 14.07.2023)

[7] Essential diagnostics: mind the gap. The Lancet Global Health. Available at: https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(21)00467-8/fulltext (Accessed 14.07.2023)

[8] Private Sector Commitments To Universal Health Coverage. UHC Private Sector Constituency 2023 Statement. https://www.uhc2030.org/fileadmin/uploads/UHC2030_Private_Sector_Commitments_Statement_April2023.pdf (Accessed 29.08.2023)



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Black or ‘Other’? Doctors may be relying on race to make decisions about your health | CNN

Editor’s Note: CNN’s “History Refocused” series features surprising and personal stories from America’s past to bring depth to conflicts still raging today.



CNN
 — 

When she first learned about race correction, Naomi Nkinsi was one of five Black medical students in her class at the University of Washington.

Nkinsi remembers the professor talking about an equation doctors use to measure kidney function. The professor said eGFR equations adjust for several variables, including the patient’s age, sex and race. When it comes to race, doctors have only two options: Black or “Other.”

Nkinsi was dumbfounded.

“It was really shocking to me,” says Nkinsi, now a third-year medical and masters of public health student, “to come into school and see that not only is there interpersonal racism between patients and physicians … there’s actually racism built into the very algorithms that we use.”

At the heart of a controversy brewing in America’s hospitals is a simple belief, medical students say: Math shouldn’t be racist.

The argument over race correction has raised questions about the scientific data doctors rely on to treat people of color. It’s attracted the attention of Congress and led to a big lawsuit against the NFL.

What happens next could affect how millions of Americans are treated.

Carolyn Roberts, a historian of medicine and science at Yale University, says slavery and the American medical system were in a codependent relationship for much of the 19th century and well into the 20th.

“They relied on one another to thrive,” Roberts says.

It was common to test experimental treatments first on Black people so they could be given to White people once proven safe. But when the goal was justifying slavery, doctors published articles alleging substantive physical differences between White and Black bodies — like Dr. Samuel Cartwright’s claim in 1851 that Black people have weaker lungs, which is why grueling work in the fields was essential (his words) to their progress.

The effects of Cartwright’s falsehood, and others like it, linger today.

In 2016, researchers asked White medical students and residents about 15 alleged differences between Black and White bodies. Forty percent of first-year medical students and 25% of residents said they believed Black people have thicker skin, and 7% of all students and residents surveyed said Black people have less sensitive nerve endings. The doctors-in-training who believed these myths — and they are myths — were less likely to prescribe adequate pain medication to Black patients.

To fight this kind of bias, hospitals urge doctors to rely on objective measures of health. Scientific equations tell physicians everything from how well your kidneys are working to whether or not you should have a natural birth after a C-section. They predict your risk of dying during heart surgery, evaluate brain damage and measure your lung capacity.

But what if these equations are also racially biased?

Race correction is the use of a patient’s race in a scientific equation that can influence how they are treated. In other words, some diagnostic algorithms and risk predictor tools adjust or “correct” their results based on a person’s race.

The New England Journal of Medicine article “Hidden in Plain Sight” includes a partial list of 13 medical equations that use race correction. Take the Vaginal Birth After Cesarean calculator, for example. Doctors use this calculator to predict the likelihood of a successful vaginal delivery after a prior C-section. If you are Black or Hispanic, your score is adjusted to show a lower chance of success. That means your doctor is more likely to encourage another C-section, which could put you at risk for blood loss, infection and a longer recovery period.

Cartwright, the racist doctor from the 1800s, also developed his own version of a tool called the spirometer to measure lung capacity. Doctors still use spirometers today, and most include a race correction for Black patients to account for their supposedly shallower breaths.

Turns out, second-year medical student Carina Seah wryly told CNN, math is as racist as the people who make it.

The biggest problem with using race in medicine? Race isn’t a biological category. It’s a social one.

“It’s based on this idea that human beings are naturally divided into these big groups called races,” says Dorothy Roberts, a professor of law and sociology at the University of Pennsylvania, who has made challenging race correction in medicine her life’s work. “But that’s not what race is. Race is a completely invented social category. The very idea that human beings are divided into races is a made-up idea.”

Ancestry is biological. Where we come from — or more accurately, who we come from — impacts our DNA. But a patient’s skin color isn’t always an accurate reflection of their ancestry.

Look at Tiger Woods, Roberts says. Woods coined the term “Cablinasian” to describe his mix of Caucasian, Black, American Indian and Asian ancestries. But to many Americans, he’s Black.

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“You can be half Black and half White in this country and you are Black,” says Seah, who is getting her medical degree and a PhD in genetics and genomics at the Icahn School of Medicine at Mount Sinai in New York. “You can be a quarter Black in this country — if you have dark skin, you are Black.”

So it can be misleading, Seah says, even dangerous, for doctors to judge a patient’s ancestry by glancing at their skin. A patient with a White mother and Black father could have a genetic mutation that typically presents in patients of European ancestry, Seah says, but a doctor may not think to test for it if they only see Black skin.

“You have to ask, how Black is Black enough?” Nkinsi asks. And there’s another problem, she says, with using a social construct like race in medicine. “It also puts the blame on the patient, and it puts the blame on the race itself. Like being Black is inherently the cause of these diseases.”

Naomi Nkinsi is a third-year medical and masters of public health student at the University of Washington in Seattle. She has been advocating for the removal of race correction in medicine.

After she learned about the eGFR equation in 2018, Nkinsi began asking questions about race correction. She wasn’t alone — on social media she found other students struggling with the use of race in medicine. In the spring of 2020, following a first-year physiology lecture, Seah joined the conversation. But the medical profession is nothing if not hierarchical; Nkinsi and Seah say students are encouraged to defer to doctors who have been practicing for decades.

Then on May 25, 2020, George Floyd was killed by police in Minneapolis.

His death and the growing momentum around Black Lives Matter helped ignite what Dr. Darshali A. Vyas calls an “overdue reckoning” in the medical community around race and race correction. A few institutions had already taken steps to remove race from the eGFR equation. Students across the country demanded more, and hospitals began to listen.

History Refocused BLM White Coats

Four days after Floyd’s death, the University of Washington announced it was removing race correction from the eGFR equation. In June, the Boston-based hospital system Mass General Brigham where Vyas is a second-year Internal Medicine resident followed suit. Seah and a fellow student at Mount Sinai, Paloma Orozco Scott, started an online petition and collected over 1600 signatures asking their hospital to do the same.

Studies show removing race from the eGFR equation will change how patients at those hospitals are treated. Researchers from Brigham and Women’s Hospital and Penn Medicine estimated up to one in every three Black patients with kidney disease would have been reclassified if the race multiplier wasn’t applied in earlier calculations, with a quarter going from stage 3 to stage 4 CKD (Chronic Kidney Disease).

That reclassification is good and bad, says Dr. Neil Powe, chief of medicine at Zuckerberg San Francisco General Hospital. Black patients newly diagnosed with kidney disease will be able to see specialists who can devise better treatment plans. And more patients will be placed on kidney transplant lists.

On the flip side, Powe says, more African Americans diagnosed with kidney disease means fewer who are eligible to donate kidneys, when there’s already a shortage. And a kidney disease diagnosis can change everything from a patient’s diabetes medication to their life insurance costs.

Dr. Neil Powe says by simply removing race from the eGFR equations,

Powe worries simply eliminating race from these equations is a knee-jerk response — one that may exacerbate health disparities instead of solve them. For too long, Powe says, doctors had to fight for diversity in medical studies.

The most recent eGFR equation, known as the CKD-EPI equation, was developed using data pooled from 26 studies, which included almost 3,000 patients who self-identified as Black. Researchers found the equation they were developing was more accurate for Black patients when it was adjusted by a factor of about 1.2. They didn’t determine exactly what was causing the difference in Black patients, but their conclusion is supported by other research that links Black race and African ancestry with higher levels of creatinine, a waste product filtered by the kidneys.

Put simply: In the eGFR equation, researchers used race as a substitute for an unknown factor because they think that factor is more common in people of African descent.

Last August, Vyas co-authored the “Hidden in Plain Sight” article about race correction. Vyas says most of the equations she wrote about were developed in a similar way to the eGFR formula: Researchers found Black people were more or less likely to have certain outcomes and decided race was worth including in the final equation, often without knowing the real cause of the link.

“When you go back to the original studies that validated (these equations), a lot of them did not provide any sort of rationale for why they include race, which I think is appalling.” That’s what’s most concerning, Vyas says – “how willing we are to believe that race is relevant in these ways.”

Vyas is clear she isn’t calling for race-blind medicine. Physicians cannot ignore structural racism, she says, and the impact it has on patients’ health.

Powe has been studying the racial disparities in kidney disease for more than 30 years. He can spout the statistics easily: Black people are three times more likely to suffer from kidney failure, and make up more than 35% of patients on dialysis in the US. The eGFR equation, he says, did not cause these disparities — they existed long before the formula.

“We want to cure disparities, let’s go after the things that really matter, some of which may be racist,” he says. “But to put all our stock and think that the equation is causing this is just wrong because it didn’t create those.”

In discussions about removing race correction, Powe likes to pose a question: Instead of normalizing to the “Other” group in the eGFR equation, as many of these hospitals are doing, why don’t we give everyone the value assigned to Black people? By ignoring the differences researchers saw, he says, “You’re taking the data on African Americans, and you’re throwing it in the trash.”

Powe is co-chair of a joint task force set up by the National Kidney Foundation and the American Society of Nephrology to look at the use of race in eGFR equations. The leaders of both organizations have publicly stated race should not be included in equations used to estimate kidney function. On April 9, the task force released an interim report that outlined the challenges in identifying and implementing a new equation that’s representative of all groups. The group is expected to issue its final recommendations for hospitals this summer.

Race correction is used to assess the kidneys and the lungs. What about the brain?

In 2013, the NFL settled a class-action lawsuit brought by thousands of former players and their families that accused the league of concealing what it knew about the dangers of concussions. The NFL agreed to pay $765 million, without admitting fault, to fund medical exams and compensate players for concussion-related health issues, among other things. Then in 2020, two retired players sued the NFL for allegedly discriminating against Black players who submitted claims in that settlement.

01 race correction Kevin Henry Najeh Davenport SPLIT

The players, Najeh Davenport and Kevin Henry, said the NFL race-corrected their neurological exams, which prevented them from being compensated.

According to court documents, former NFL players being evaluated for neurocognitive impairment were assumed to have started with worse cognitive function if they were Black. So if a Black player and a White player received the exact same scores on a battery of thinking and memory tests, the Black player would appear to have suffered less impairment. And therefore, the lawsuit stated, would be less likely to qualify for a payout.

Race correction is common in neuropsychology using something called Heaton norms, says Katherine Possin, an associate professor at the University of California San Francisco. Heaton norms are essentially benchmark average scores on cognitive tests.

Here’s how it works: To measure the impact of a concussion (or multiple concussions over time), doctors compare how well the patient’s brain works now to how well it worked before.

“The best way to get that baseline was to test you 10 years ago, but that’s not something we obviously have for many people,” Possin says. So doctors estimate your “before” abilities using an average score from a group of healthy individuals, and adjust that score for demographic factors known to affect brain function, like your age.

Heaton norms adjust for race, Possin says, because race has been linked in studies to lower cognitive scores. To be clear, that’s not because of any biological differences in Black and White brains, she says; it’s because of social factors like education and poverty that can impact cognitive development. And this is where the big problem lies.

In early March, a judge in Pennsylvania dismissed the players’ lawsuit and ordered a mediator to address concerns about how race correction was being used. In a statement to CNN, the NFL said there is no merit to the players’ claim of discrimination, but it is committed to helping find alternative testing techniques that do not employ race-based norms.

The NFL case, Possin wrote in JAMA, has “exposed a major weakness in the field of neuropsychology: the use of race-adjusted norms as a crude proxy for lifelong social experience.”

This happens in nearly every field of medicine. Race is not only used as a poor substitute for genetics and ancestry, it’s used as a substitute for access to health care, or lifestyle factors like diet and exercise, socioeconomic status and education. It’s no secret that racial disparities exist in all of these. But there’s a danger in using race to talk about them, Yale historian Carolyn Roberts says.

We know, for example, that Black Americans have been disproportionally affected by Covid-19. But it’s not because Black bodies respond differently to the virus. It’s because, as Dr. Anthony Fauci has noted, a disproportionate number of Black people have jobs that put them at higher risk and have less access to quality health care. “What are we making scientific and biological when it actually isn’t?” Roberts asks.

Vyas says using race as a proxy for these disparities in clinical algorithms can also create a vicious cycle.

“There’s a risk there, we argue, of simply building these into the system and almost accepting them as fact instead of focusing on really addressing the root causes,” Vyas says. “If we systematize these existing disparities … we risk ensuring that these trends will simply continue.”

Nearly everyone on both sides of the race correction controversy agrees that race isn’t an accurate, biological measure. Yet doctors and researchers continue to use it as a substitute. Math shouldn’t be racist, Nkinsi says, and it shouldn’t be lazy.

“We’re saying that we know that this race-based medicine is wrong, but we’re going to keep doing it because we simply don’t have the will or the imagination or the creativity to think of something better,” Nkinsi says. “That is a slap in the face.”

Shortly after Vyas’ article published in The New England Journal of Medicine, the House Ways and Means Committee sent letters to several professional medical societies requesting information on the misuse of race in clinical algorithms. In response to the lawmakers’ request, the Agency for Healthcare Research and Quality is also gathering information on the use of race-based algorithms in medicine. Recently, a note appeared on the Maternal Fetal Medicine Units Network’s website for the Vaginal Birth After Cesarean equation — a new calculator that doesn’t include race and ethnicity is being developed.

Dorothy Roberts is excited to see change on the horizon. But she’s also a bit frustrated. The harm caused by race correction is something she’s been trying to tell doctors about for years.

“I’ve taught so many audiences about the meaning of race and the history of racism in America and the audiences I get the most resistance from are doctors,” Roberts says. “They’re offended that there would be any suggestion that what they do is racist.”

Nkinsi and Seah both encountered opposition from colleagues in their fight to change the eGFR equation. Several doctors interviewed for this story argued the change in a race-corrected scores is so small, it wouldn’t change clinical decisions.

If that’s the case, Vyas wonders, why include race at all?

“It all comes from the desire for one to dominate another group and justify it,” says Roberts. “In the past, it was slavery, but the same kinds of justifications work today to explain away all the continued racial inequality that we see in America… It is mass incarceration. It’s huge gaps in health. It’s huge differences in income and wealth.”

It’s easier, she says, to believe these are innate biological differences than to address the structural racism that caused them.



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Conjoined Twins Fast Facts | CNN



CNN
 — 

Here’s a look at conjoined twins.

Conjoined twins are physically connected to one another at some point on their bodies.

Conjoined twins occur once every 200,000 live births, according to the University of Minnesota.

About 70% of conjoined twins are female.

Conjoined twins are identical – they are the same sex.

According to the Mayo Clinic, conjoined twins may be joined at any of these areas: chest, abdomen, spine, pelvis, trunk or head.

Scientists believe that conjoined twins develop from a single fertilized egg that fails to separate completely as it divides.

The term “Siamese twins” originated with Eng and Chang Bunker, a set of conjoined twins who were born in Siam (now Thailand) in 1811. They lived to age 63 and appeared in traveling exhibitions. Chang and Eng both married and fathered a total of 21 children between them.

In 1955, neurosurgeon Dr. Harold Voris of Mercy Hospital in Chicago performed the first successful procedure separating conjoined twins.

Lea and Tabea Block
Born August 9, 2003, in Lemgo, Germany, to Peter and Nelly Block. They are joined at the head. On September 16, 2004, the girls are separated. Tabea dies shortly thereafter.

Jade and Erin Buckles
Born February 26, 2004, to Melissa and Kevin Buckles at National Naval Medical Center in Bethesda, Maryland. They share a liver. On June 19, 2004, they are successfully separated.

Tatiana and Anastasia Dogaru
Born January 13, 2004, in Rome to Romanian parents Claudia and Alin Dogaru. They are connected at the head. In August 2007, doctors at University Hospital’s Rainbow Babies & Children’s Hospital in Cleveland announce that they will not perform a separation of the girls because the surgery is too risky.

Abbigail and Isabelle Carlsen
Born November 29, 2005, in Fargo, North Dakota, to Amy and Jesse Carlsen. They are joined at the abdomen and chest. On May 12, 2006, a team of 30 people, including 18 surgeons from various specialties at the Mayo Clinic in Rochester, Minnesota, perform a successful operation to separate the girls.

Regina and Renata Salinas Fierros
Born August 2, 2005, in Los Angeles to Sonia Fierros and Federico Salinas. Born facing each other and joined from the lower chest to the pelvis, they are fused in several places including the liver and genitals, and they share a large intestine. Regina is born with one kidney. On June 14, 2006, the twins are separated during a day-long surgery at Children’s Hospital Los Angeles.

Abygail and Madysen Fitterer
Born August 8, 2006, to Stacy and Suzy Fitterer from Bismarck, North Dakota. They are born joined at the abdomen and share a liver. On January 3, 2007, they are separated in a surgery at the Mayo Clinic.

Preslee Faith and Kylee Hope Wells
Born October 25, 2008, in Oklahoma City to Stevie Stewart and Kylie Wells. They are attached at the chest and are believed to be the first Native American conjoined twins. On January 19, 2009, they are separated at Children’s Hospital at OU Medical Center in Oklahoma City. On February 19, 2011, Preslee Faith dies.

Arthur and Heitor Rocha Brandao
Born April 2009 in Bahia, Brazil, to Eliane and Delson Rocha. They are joined at the hip and share a bladder, intestines, liver and genitals. The twins only have three legs between them. On February 24, 2015, the five-year-old twins undergo a 15-hour separation surgery after months of preparation. Arthur dies three days later after he suffers cardiac arrest.

Angelica and Angelina Sabuco
Born August 2009 in the Philippines to Fidel and Ginady Sabuco. They are joined at the chest and abdomen. On November 1, 2011, they are successfully separated after a 10-hour surgery at Lucile Packard Children’s Hospital in San Jose, California.

Hassan and Hussein Benhaffaf
Born December 2, 2009, in London to Angie and Azzedine Benhaffaf from East Cork, Ireland. They are attached at the chest but share no major organs. On April 8, 2010, they undergo a 14-hour separation surgery at Great Ormond Street Hospital. Both survive.

Maria and Teresa Tapia
Born April 8, 2010, in the Dominican Republic to Lisandra Sanatis and Marino Tapia. They are joined at the lower chest and abdomen and share a liver, pancreatic glands, and part of their small intestine. On November 8, 2011, they are successfully separated following a 20-hour procedure.

Joshua and Jacob Spates
Born January 24, 2011, in Memphis, Tennessee, to Adrienne Spates. They are joined back to back at the pelvis and lower spine, each with separate hearts, heads and limbs. On August 29, 2011, they are successfully separated after a 13-hour surgery. In October 2013, Jacob passes away.

Rital and Ritag Gaboura
Born September 22, 2010, in Khartoum, Sudan, to Abdelmajeed and Enas Gaboura. They are joined at the head. On August 15, 2011, they are successfully separated after a four-stage operation. Two operations took place in May, one in July and the final operation in August.

Allison June and Amelia Lee Tucker
Born March 1, 2012, to Shellie and Greg Tucker. They are attached at the lower chest and abdomen and share their chest wall, diaphragm, pericardium and liver. On November 7, 2012, they are successfully separated after a seven-hour surgery at Children’s Hospital Philadelphia.

A’zhari and A’zhiah Lawrence
Born October 10, 2012, in Virginia to Nachell Jones and Carlos Lawrence. They are joined from the chest to the abdomen and have a conjoined liver. On April 22, 2013, they are successfully separated following 14 hours of surgery. On October 14, 2013, A’zhari passes away.

Emmett and Owen Ezell
Born July 15, 2013, in Dallas to Jenni and Dave Ezell. They are joined at the liver and the intestine. On August 24, 2013, they are successfully separated.

Knatalye Hope and Adeline Faith Mata
Born April 11, 2014, in Houston to Elysse and John Matta. They are joined at the chest, sharing a liver, heart lining, diaphragm, intestines and colon. On February 17, 2015, a team of 12 surgeons separate the twins during a 26-hour procedure.

Erika and Eva Sandoval
Born August 10, 2014, in California to Aida and Arturo Sandoval. They are joined at the lower chest and upper abdomen and share a liver, bladder, two kidneys and three legs. On December 6-7, 2016, they are successfully separated after 17 hours of surgery at Lucile Packard Children’s Hospital Stanford in California.

Acen and Apio Akello
Born September 23, 2014, in Uganda to Ester Akello. They are joined at the hip and pelvis. On September 3, 2015, more than 30 medical specialists help separate the twins’ spinal cord during a 16-hour surgery at Nationwide Children’s Hospital in Ohio. To prepare for the surgery, medical specialists used 3-D printing to create anatomies similar to the girls.

Carter and Conner Mirabal
Born December 12, 2014, in Jacksonville, Florida, to Michelle Brantley and Bryan Mirabal. They are joined at the sternum and abdomen and share a liver and part of their small intestines. On May 7, 2015, the twins are successfully separated after 12 hours of surgery at Wolfson Children’s Hospital in Florida.

Scarlett and Ximena Torres
Born May 16, 2015, in Corpus Christi, Texas, to Silvia Hernandez and Raul Torres. Scarlett and Ximena are connected below the waist, sharing a colon and a bladder. On April 12, 2016, the twins are separated during a 12-hour procedure at the Driscoll Children’s Hospital in Texas.

Anias and Jadon McDonald
Born on September 9, 2015, in Chicago to Nicole and Christian McDonald. They are joined at the head. On October 13-14, 2016, Anias and Jadon are successfully separated after 27 hours of surgery at the Children’s Hospital at Montefiore Medical Center in New York.

Dawa and Nima Pelden
Born on July 13, 2017, in Bhutan to Bhumchu Zangmo. They are joined at the abdomen. On November 9, 2018, Dawa and Nima are successfully separated after a six-hour surgery at Melbourne Royal Children’s Hospital in Australia.

Safa and Marwa Ullah
Born January 7, 2017, in Pakistan to Zainab Bibi. They are joined at the head. On February 11, 2019, Safa and Marwa are successfully separated after 50 hours of surgery, that took place over a four month period, at London’s Great Ormond Street Hospital.

Ervina and Prefina Bangalo
Born June 29, 2018, in the Central African Republic to Ermine Nzutto. They share a skull and a majority of blood vessels. On June 5, 2020, the twins are successfully separated during an operation in Vatican City lasting 18 hours and involving 30 doctors and nurses.

Abigail and Micaela Bachinskiy
Born December 30, 2019, in Sacramento, California. The twins are joined at the head. On October 23-24, 2020, the twins are successfully separated during a 24-hour operation at UC Davis Children’s Hospital in Sacramento, California.

Siphosethu and Amahle Tyhalisi
Born January 30, 2021, in South Africa to Ntombikayise Tyhalisi. They are joined at the head. On February 24, 2021, the twins are successfully separated during an operation at Red Cross War Memorial Children’s Hospital in Cape Town.

Hassana and Hasina
Born in January 12, 2022 in Kaduna, Nigeria to Omar Rayano. They share an abdomen, pelvis, liver, intestines, urinary and reproductive system, and pelvic bones. On May 18, 2023 the twins are successfully separated during an operation at King Abdullah Specialized Children’s Hospital in Riyadh, Saudi Arabia.

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New approach gets newborns with opioid withdrawal out of the hospital sooner and with less medication | CNN



CNN
 — 

Rates of neonatal abstinence syndrome surged in recent years, but a newer approach to caring for newborn babies exposed to opioids during pregnancy gets them out of the hospital sooner and with less medication, according to a study published on Sunday in the New England Journal of Medicine.

Newborns in opioid withdrawal may experience upset stomach, inconsolable crying, seizures and extreme discomfort. The study looked at the impacts of the Eat, Sleep, Console care approach on 1,300 infants at 26 US hospitals, and compared them with the current standard for caring for infants exposed to opioids.

Eat, Sleep, Console encourages involvement from parents, and prioritizes care that doesn’t involve medication, such as swaddling, skin-to-skin contact and breastfeeding. The usual approach involves a nurse measuring a baby’s withdrawal symptoms – such as their level of irritability, pitch of crying, fever or tremors – before providing treatment such as methadone or morphine.

“Compared to usual care, use of the Eat, Sleep, Console care approach substantially decreased time until infants with neonatal opioid withdrawal syndrome were medically ready for discharge, without increasing specified adverse outcomes,” the researchers wrote in the study.

The infants assessed with the Eat, Sleep, Console care method were discharged after eight days on average, compared with almost 15 days for the infants who were cared for by the standard approach, the researchers said. Additionally, infants in the Eat, Sleep, Console care group were 63% less likely to receive opioid medication – 19.5% received medication compared with 52% in the group receiving usual care.

The current approach to usual care “is a very comprehensive and nurse-led way of assessing the infant, whereas the Eat, Sleep, Console approach involves the mom in the way that you assess the infant, and allows the mom to take part in trying to soothe the infants and see if the infant is able to be soothed or is able to eat or is able to sleep,” according to Rebecca Baker, the director of the NIH HEAL Initiative, which provides grants to researchers studying ways to alleviate the country’s opioid health crisis.

“So, in that way, it’s a little bit more functional, like looking at the abilities of the infants versus how severely the infant is affected.”

Assessment results determine whether a baby should receive medication to control withdrawal symptoms, Baker said.

“So even with Eat, Sleep, Console, some infants that were exposed to a lot of opioids during a mother’s pregnancy, they’ll still need medication-based treatment for withdrawal. It’s just fewer of them need it and when they need it, they need less medication to manage the withdrawal symptoms,” she said.

The Eat, Sleep, Console method was developed about eight years ago, and some hospitals have already implemented it. But Baker said the study’s findings could change how more hospitals practice caring for infants with neonatal abstinence syndrome, which primarily occurs in infants who were exposed to opioids while in utero.

“The rise of really powerful fentanyl, the synthetic opioid, means that if a mother has used drugs during pregnancy, the baby will be exposed to more powerful drugs, which likely has an effect. We haven’t had a chance to study it in detail yet, but it will affect how they feel when they’re born and separated from the mom,” Baker said.

Findings from the study, which were presented at the PAS 2023 Meeting on Sunday, could have a big impact on hospitals by freeing up bed space in the neonatal intensive care unit and boosting morale among nurses at risk of burnout.

“We trained over 5,000 nurses as part of the study. They felt really empowered to help the mom care for the infant to help the infant recover, and so I think from a morale perspective, that’s incredibly important and valuable,” Baker said. “And as you know, nurses are facing really severe staffing shortages and morale challenges so having this tool available to them where they are kind of able to do something positive in the life of the infant and the connection with the mom is really important.”

The researchers are currently following up with a subgroup of the infants from the study for up to two years to see how they grow and develop.

“One of the things that we want to be really sure of is that there are no negative consequences associated with taking less medication, so we’ll be looking for that,” Baker said.

The United States has seen an explosion in the number of infants born with neonatal abstinence syndrome in recent years, swelling by about 82% between 2010 and 2017, according to the US Centers for Disease Control and Prevention. The number of maternal opioid-related diagnoses is also on the rise, increasing by 131% during that same time frame.

Nearly 60 infants are diagnosed with NAS each day, based on data from the U.S. Agency for Healthcare Research and Quality in 2020.

The United States’ opioid epidemic has been expanding in recent years and opioid deaths are the leading cause of accidental death in the US.

More than a million people have died of drug overdoses – mostly opioids – in the two decades since the US Centers for Disease Control and Prevention began collecting that data. Deaths from opioid overdoses rose more than 17% in just one year, from about 69,000 in 2020 to about 81,020 in 2021, the CDC found.

Most are among adults, but children are also dying, largely after ingesting synthetic opioids such as fentanyl. Between 1999 and 2016, nearly 9,000 children and adolescents died of opioid poisoning, with the highest annual rates among adolescents 15 to 19, the CDC found.

Opioid use during pregnancy has been linked to maternal mortality and risk of overdose for the mother, according to the CDC, while infants risk preterm birth, low birthweight, breathing problems and feeding problems.

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Amid contradictory laws, hospitals in one state were unable to explain policies on emergency abortion care, study finds | CNN



CNN
 — 

Oklahoma’s laws restricting abortions have created a confusing, contradictory environment that may have a chilling effect on health care, new research says.

After the US Supreme Court overturned the right to an abortion last year with the Dobbs v. Jackson Women’s Health Organization decision, several states quickly passed laws that restricted such procedures. A report released Tuesday and described in the medical journal the Lancet finds that the laws in at least one state left workers at many hospitals confused about how to proceed.

When the court made its decision, the Oklahoma law that criminalized abortion in 1910 went back into effect, according to the state’s attorney general. Lawmakers then created multiple overlapping laws that further criminalized abortion and increased penalties for those who performed or assisted in an abortion procedure, according to the new report from Physicians for Human Rights, Oklahoma Call for Reproductive Justice and the Center for Reproductive Rights.

The Oklahoma laws allow abortion in the case of a medical emergency, but one doesn’t define a medical emergency. Another says it allows for the “preservation of life in a medical emergency,” defined as causing “substantial and irreversible body of bodily impairment” – which is not a medical term, experts say.

To understand exactly how well Oklahoma hospitals understood the laws, the researchers used a “secret shopper method,” study co-author Dr. Michele Heisler said.

Researchers posed as prospective patients and called 34 hospitals to ask about the emergency pregnancy care they offered.

Heisler said that when the researchers designed the study, she expected the hospitals to tell the patients that they could get help in an emergency but that a second provider might have to sign off on an abortion or that a doctor would have to get the decision past an “onerous” hospital oversight committee.

“What we weren’t expecting is that there would be so much confusion and contradictory information and really not clear information,” said Heisler, who is medical director at Physicians for Human Rights and a professor of internal medicine and public health at the University of Michigan.

The researchers said that none of the hospitals they contacted in Oklahoma was totally able to articulate clear, consistent policies for emergency obstetric care to potential patients.

Specifically, 65% – 22 of the 34 hospitals – were unable to provide information about policies, procedures or the support provided to doctors when it is clinically necessary to terminate a pregnancy to save the life of a pregnant patient.

In 14 of the 22 cases, hospital representatives provided unclear and/or incomplete answers about whether doctors require approval to perform a medically necessary abortion.

Three of the hospitals said they do not provide abortions at all, even though it remains legal in the case of a medical emergency or to “preserve the life” of the pregnant person. Four others provided information that was factually wrong, the report says.

Four hospitals said they had formal approval processes that clinicians must go through if they have a situation in which it is medically necessary to terminate a pregnancy; they cannot make that decision on their own.

Three hospitals indicated that they have policies for these situations but refused to share any information about them.

“Unfortunately, it is being just left up to individual health systems and clinicians to try to make sense of these laws and provide guidance and support,” Heisler said.

The Oklahoma Hospital Association said it has been in conversations with Oklahoma’s medical licensure boards to seek clarity about the state’s conflicting abortion laws.

The association sent guidance to its members in September to explain what it interpreted as “saving the life of a pregnant woman” and what the laws would mean for a person made pregnant through rape or incest, among other issues. The guidance explains that the state’s criminal laws do not make an exception for these circumstances unless it is to save the life of someone who is pregnant in a medical emergency.

The guidance also warns that a person convicted of “administering, prescribing, advising, or procuring a woman to take any medicine drug or substance, or a person convicted of using or employing any instruction or ‘other means whatever,’ with the intent to procure an abortion, shall be guilty of a felony punishable by two (2) to (5) years imprisonment. From August 27, 2022, forward, a person convicted of performing or attempting to perform an abortion shall be guilty of a felony punishable by a fine not to exceed One Hundred Thousand ($100,000.00) and/or imprisonment not to exceed ten (10) years.”

The guidance says the “persons potentially liable” are the provider, not the pregnant person.

Study co-author Rabia Muqaddam, a senior staff attorney at the Center for Reproductive Rights who is working on multiple cases challenging the abortion bans in Oklahoma, called the overlapping laws a “bizarre” situation.

“Aside from the fact that there are so many of them is that they all conflict,” she said. “All of the laws have inconsistent definitions, which is where a lot of the confusion comes from for health care providers. What’s most dangerous for patients is the fact that the definitions of medical emergency and life-preserving abortions is unclear and inconsistent.”

“If I was the hospital general counsel and I was looking at these laws, I have absolutely no idea what my physician could or could not do in any particular circumstance,” she said.

When there is a lack of clarity and when penalties are involved, “what you get is massive chill.”

“Physicians are terrified. They’re terrified that if they make the wrong decision, they’re going to go to jail. They’re going to lose their license. And at the other end of that is that patients are being seriously harmed,” Muqaddam said.

Sonia M. Suter, a professor of law at George Washington University who was not involved in the new research, said recent abortion laws have created “such a mess.”

“You are telling physicians that they have two conflicting obligations,” said Suter, whose scholarship focuses on issues at the intersection of law, medicine and bioethics, with a particular focus on reproductive rights.

There is an obligation to stabilize patients in emergencies that may not always qualify as “life-threatening,” but doctors and hospitals could also risk being sued because the doctors are not following the standard of care, “which you can’t do with how some of these exceptions are worded.”

She said hospitals also don’t know how the laws will be applied. Lawyers typically will instruct institutions to interpret the law as conservatively as possible, and physicians may be equally conservative because they don’t want to risk their licenses or face stiff penalties.

“It’s just devastating for everybody,” Suter said. “It’s just cruel.”

Molly Meegan, general counsel for the American College of Obstetricians and Gynecologists, said state laws to restrict abortion with emergency exceptions are not comprehensive.

“They can’t be applied in a medical situation. They just aren’t practical,” she said. “They have an ethical and personal duty to their patients to do what is best for their patients. It can at times be in direct conflict with whatever the laws are, especially if they’re vague, and most of the ob/gyns throughout the country, including in Oklahoma, are in an impossible situation.”

Meegan and Suter both believe the confusion will lead to the deaths of more women. Those who survive may be left with dire health problems, including losing the ability to have children in the future.

“They already have horrific maternal mortality and infant mortality rates,” Suter said. “It feels like the end of evidence-based medicine.”

According to the US Centers for Disease Control and Prevention, Oklahoma persistently ranks among the states with the worst rates of maternal deaths, even before the new abortion laws went into effect. The state had a maternal mortality rate of 25.2 deaths per 100,000 live births for 2018-20, well above the national average.

For communities of color, the rate is significantly worse, according to the Oklahoma Health Department.

White women had 23.2 maternal deaths per 100,000 live births for 2018-20, the lowest rate overall in Oklahoma. The rates for Black women and Native American women were about twice as high: 49.4 and 44.4, respectively.

Oklahoma is not alone. The 13 states where most abortions are banned generally have some of the highest infant and maternal mortality rates in the country, Heisler said. Even more states could be restricting abortion access soon, the experts believe, with potentially more problems to come.

“The hostile climate many states are creating for the health care field by enacting criminal and other penalties for abortion care is an outcome whose reverberations we are only just beginning to see,” said Kelly Baden, vice president for public policy at the reproductive health nonprofit Guttmacher Institute.

Heisler noted that the researchers don’t blame the hospitals or the doctors for this confusion. Overall, she said, the staffers who talked to the researchers “were wonderful,” despite the circumstances.

“They were empathetic. They said, ‘I completely understand.’ They tried to give answers. They acted in good faith. But really, none of the hospitals were really able to say what we were hoping for, which is to unequivocally state that they would stand behind their clinicians and that clinicians at their facilities would be able to use their best clinical judgment for the individual case and that it would be made as medical decisions should be in collaboration with the patient, taking into account to their needs, their preferences and their values,” she said.

“We are recognizing that hospitals and clinicians are in an untenable situation,” Heisler added.

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Maternity units are closing across America, forcing expectant mothers to hit the road | CNN



CNN
 — 

In picturesque Bonner County, Idaho, Leandra Wright, 40, is pregnant with her seventh child.

Wright is due in August, but three weeks ago, the hospital where she had planned to deliver, Bonner General Health, announced that it would be suspending its labor and delivery services in May.

Now, she’s facing a potentially precarious drive to another hospital 45 minutes from her home.

“It’s frustrating and worrisome,” Wright said.

Wright has a history of fast labors. Her 15-year-old son, Noah, was born on the way to the hospital.

“My fifth child was born on the side of the highway,” Wright said. “It was wintertime, and my hospital at the time in California was about 40 minutes away, and the roads were icy, so we didn’t make it in time.”

By the time she and Noah got to the hospital, about 15 minutes after he was born, his body temperature was lower than normal.

“It worries me not to have a doctor there and worries me to have to go through that,” Wright said.

Residents of Bonner County aren’t the only ones dealing with unexpected maternity unit closures.

Since 2011, 217 hospitals in the United States have closed their labor and delivery departments, according to a report by the health care consulting firm Chartis.

A CNN tally shows that at least 13 such closures have been announced in the past year alone.

Services provided at maternity units vary from hospital to hospital. Most offer obstetrics care in which an obstetrician will deliver a baby, either vaginally or via cesarean section. These units also provide perinatal care, which is medical and supportive care before and after delivery.

Other services provided may include lactation specialists and private delivery rooms.

After May 19, Bonner General Health will no longer offer obstetrical services, meaning there will be zero obstetricians practicing there. Consequently, the hospital will no longer deliver babies. Additionally, the unit will no longer provide 24-hour anesthesia support or post-resuscitation or pre-transportation stabilization care for critically ill newborns.

Some hospitals that have recently closed their maternity units still offer perinatal care, along with routine gynecological care.

Bonner General is planning to establish a clinic where perinatal care will be offered. Gynecological services – such as surgical services, preventative care, wellness exams and family planning – will still be provided at a nearby women’s health clinic.

The Chartis report says that the states with the highest loss of access to obstetrical care are Minnesota, Texas, Iowa, Kansas and Wisconsin, with each losing more than 10 facilities.

Data released last fall by the infant and maternal health nonprofit March of Dimes also shows that more than 2.2 million women of childbearing age across 1,119 US counties are living in “maternity care deserts,” meaning their counties have no hospitals offering obstetric care, no birth centers and no obstetric providers.

Maternity care deserts have been linked to a lack of adequate prenatal care or treatment for pregnancy complications and even an increased risk of maternal death for a year after giving birth.

Money is one reason why maternity units are being shuttered.

According to the American Hospital Association, 42% of births in the US are paid for by Medicaid, which has low reimbursement rates. Employer-sponsored insurance pays about $15,000 for a delivery, and Medicaid pays about $6,500, according to the Health Care Cost Institute, a nonprofit that analyzes health care cost and utilization data.

“Medicaid funds about half of all births nationally and more than half of births in rural areas,” said Dr. Katy Kozhimannil, a public health researcher at the University of Minnesota who has conducted research on the growing number of maternity care deserts.

Kozhimannil says communities that are most likely to be affected by maternity unit closures tend to be remote towns in rural counties in states with “less generous Medicaid programs.”

Hospitals in larger cities are often able to offset low reimbursement rates from Medicaid births with births covered by employer-sponsored insurance, according to Dr. Sina Haeri, a maternal-fetal medicine specialist and CEO of Ouma Health, a company that provides virtual prenatal and perinatal care to mothers living in maternity care deserts.

Many large hospitals also have neonatal intensive care units.

“If you have a NICU, that’s a substantial revenue generator for a hospital,” Haeri said.

Most rural hospitals do not have a NICU, only a nursery where they care for full-term, healthy babies, he said. Due to that financial burden, it does not make financial sense for many rural hospitals to keep labor and delivery units open.

A low volume of births is another reason for the closures.

In announcing the closure, Bonner General noted that in 2022, it delivered just 265 babies, which the hospital characterized as a significant decrease.

Rural hospital administrators providing obstetric care say it takes at least 200 births annually for a unit to remain safe and financially viable, according to a study led by Kozhimannil for the University of Minnesota’s Rural Health Research Center.

Many administrators surveyed said they are working to keep units open despite low birth rates.

“Of all the folks that we surveyed, about a third of them were still operating, even though they had fewer than 200 births a year,” Kozhimannil said. “We asked why, and they said, ‘because our community needs it.’ ”

Another issue for hospital administrators is staffing and recruitment.

The decision to close Bonner General’s labor and delivery unit was also directly affected by a lack of experienced, qualified doctors and nurses in the state, said Erin Binnall, a Bonner General Health spokesperson.

“After May 19th, Bonner General Health will no longer have reliable, consistent pediatric coverage to manage neonatal resuscitations and perinatal care. Bonner General’s number one priority is patient safety. Not having board-certified providers certified in neonatal resuscitation willing to provide call and be present during deliveries makes it unsafe and unethical for BGH to provide these services,” Binnall told CNN by email.

The American Hospital Association acknowledges the staffing challenges some hospitals face.

“Simply put, if a hospital cannot recruit and retain the providers, nurses, and other appropriately trained caregivers to sustainably support a service then it cannot provide that care,” the association said in a statement. “Such challenges are only magnified in rural America, where workforce strain is compounded by aging demographics that in some communities has dramatically decreased demand for services like Labor and Delivery.”

Wright is considering moving because of the lack of maternity and pediatric care available in Bonner County.

More stringent abortion laws may be playing a role in the closures, too.

Bonner General said in a news release last month that due to Idaho’s “legal and political climate, highly respected, talented physicians are leaving. In addition, the Idaho Legislature continues to introduce and pass bills that criminalize physicians for medical care nationally recognized as the standard of care.”

According to the Guttmacher Institute, Idaho has one of the strictest anti-abortion laws in the country: a complete ban that has only a few exceptions.

Idaho requires an “affirmative defense,” Guttmacher says, meaning a provider “has to prove in court that an abortion met the criteria for a legal exception.”

No matter the reason, Kozhimannil said, closures in rural communities aren’t just a nuisance. They also put families at risk.

“That long drive isn’t just an inconvenience. It actually is associated with health risks,” she said. “The consequence that we saw is an increase in preterm births. Preterm birth is the largest risk factor for infant mortality. It is a huge risk factor for developmental and cognitive delays for kids.”

Haeri says the decline in maternal care also has a clear effect on maternal mortality rates.

The maternal death rate for 2021 – the year for which the most recent data is available – was 32.9 deaths per 100,000 live births in the US, compared with rates of 20.1 in 2019 and 23.8 in 2020, according to a report from the National Center for Health Statistics. In raw numbers, 1,205 women died of maternal causes in the US in 2021.

Conditions such as high blood pressure, obesity, and diabetes may raise a person’s risk of complications, as can being pregnant with multiples, according to the National Institutes of Health. Pregnant women over the age of 35 are at a higher risk of pre-eclampsia.

As labor and delivery units continue to shut their doors, possible solutions to the growing problem are complex, Haeri says.

“I think anyone that comes to you and says the current system is working is lying to you,” he said. “We all know that the current maternity system is not good.”

Kozhimannil’s research has found that many women who live in maternity care deserts are members of minority communities.

“When we conducted that research, we found the communities that were raising the alarm about this … tended to be Black and indigenous, or tribal communities in rural places,” she said. “Black communities in the South and East and tribal communities throughout the country, but especially in the West, Mountain West and Midwest.”

Haeri says one possible solution is at a woman’s fingertips.

“I always say if a woman’s got a cell phone, she should have access,” he said.

A 2021 study found that women who live in remote areas of the US could benefit from telehealth visits, which would decrease the number of “in-person prenatal care visits and increase access to care.”

The American College of Obstetricians and Gynecologists recommends 12 to 14 prenatal care appointments for women with low-risk pregnancies, and the study suggests that expansion of prenatal telehealth appointments could help women living in remote areas better adhere to those guidelines.

Ouma works with mothers who are typically remote and high-risk, Haeri says.

He also believes that promoting midwifery and doula services would help bolster maternity care in the US.

Certified nurse midwives often assist remote mothers who are high-risk or who decide to give birth at home, he says.

Midwives not only deliver babies, they often work with medical equipment and can administer at-home physical exams, prescribe medications, order lab and diagnostic tests, and assess risk management, according to the American College of Nurse Midwives. Doulas – who guide mothers through the birthing process – are often present at home births and even hospital births.

“That midwifery model shines when it comes to maternal care. [And] doula advocacy involvement leads to better outcomes and maternity care, and I think as a system, we haven’t made it easier for those two components to be really an integral part of our maternity care in the US,” Haeri said.

After living in Idaho for 10 years, Wright says, she and her fiancé have considered leaving the state. The lack of maternity and pediatric care at Bonner General Health is a big reason why.

“I feel safe being with [my] doctors. Now, I have to get to know a doctor within a couple of months before my next baby is born,” Wright said.

As she awaits the arrival of her new son, she feels doubtful that there is a solution for mothers like her.

“Everywhere – no matter what – everybody has babies,” she said. “It’s posing a problem for people who have babies who don’t have the income to drive or have high risk pregnancies or first-time mothers who don’t even know what to expect.”

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Pediatric hospital beds are in high demand for ailing children. Here’s why | CNN



CNN
 — 

Effie Schnacky was wheezy and lethargic instead of being her normal, rambunctious self one February afternoon. When her parents checked her blood oxygen level, it was hovering around 80% – dangerously low for the 7-year-old.

Her mother, Jaimie, rushed Effie, who has asthma, to a local emergency room in Hudson, Wisconsin. She was quickly diagnosed with pneumonia. After a couple of hours on oxygen, steroids and nebulizer treatments with little improvement, a physician told Schnacky that her daughter needed to be transferred to a children’s hospital to receive a higher level of care.

What they didn’t expect was that it would take hours to find a bed for her.

Even though the respiratory surge that overwhelmed doctor’s offices and hospitals last fall is over, some parents like Schnacky are still having trouble getting their children beds in a pediatric hospital or a pediatric unit.

The physical and mental burnout that occurred during the height of the Covid-19 pandemic has not gone away for overworked health care workers. Shortages of doctors and technicians are growing, experts say, but especially in skilled nursing. That, plus a shortage of people to train new nurses and the rising costs of hiring are leaving hospitals with unstaffed pediatric beds.

But a host of reasons building since well before the pandemic are also contributing. Children may be the future, but we aren’t investing in their health care in that way. With Medicaid reimbursing doctors at a lower rate for children, hospitals in tough situations sometimes put adults in those pediatric beds for financial reasons. And since 2019, children with mental health crises are increasingly staying in emergency departments for sometimes weeks to months, filling beds that children with other illnesses may need.

“There might or might not be a bed open right when you need one. I so naively just thought there was plenty,” Schnacky told CNN.

The number of pediatric beds decreasing has been an issue for at least a decade, said Dr. Daniel Rauch, chair of the Committee on Hospital Care for the American Academy of Pediatrics.

By 2018, almost a quarter of children in America had to travel farther for pediatric beds as compared to 2009, according to a 2021 paper in the journal Pediatrics by lead author Dr. Anna Cushing, co-authored by Rauch.

“This was predictable,” said Rauch, who has studied the issue for more than 10 years. “This isn’t shocking to people who’ve been looking at the data of the loss in bed capacity.”

The number of children needing care was shrinking before the Covid-19 pandemic – a credit to improvements in pediatric care. There were about 200,000 fewer pediatric discharges in 2019 than there were in 2017, according to data from the US Department of Health and Human Services.

“In pediatrics, we have been improving the ability we have to take care of kids with chronic conditions, like sickle cell and cystic fibrosis, and we’ve also been preventing previously very common problems like pneumonia and meningitis with vaccination programs,” said Dr. Matthew Davis, the pediatrics department chair at Ann & Robert H. Lurie Children’s Hospital of Chicago.

Pediatrics is also seasonal, with a typical drop in patients in the summer and a sharp uptick in the winter during respiratory virus season. When the pandemic hit, schools and day cares closed, which slowed the transmission of Covid and other infectious diseases in children, Davis said. Less demand meant there was less need for beds. Hospitals overwhelmed with Covid cases in adults switched pediatric beds to beds for grownups.

As Covid-19 tore through Southern California, small hospitals in rural towns like Apple Valley were overwhelmed, with coronavirus patients crammed into hallways, makeshift ICU beds and even the pediatric ward.

Only 37% of hospitals in the US now offer pediatric services, down from 42% about a decade ago, according to the American Hospital Association.

While pediatric hospital beds exist at facilities in Baltimore, the only pediatric emergency department in Baltimore County is Greater Baltimore Medical Center in Towson, Maryland, according to Dr. Theresa Nguyen, the center’s chair of pediatrics. All the others in the county, which has almost 850,000 residents, closed in recent years, she said.

The nearby MedStar Franklin Square Medical Center consolidated its pediatric ER with the main ER in 2018, citing a 40% drop in pediatric ER visits in five years, MedStar Health told CNN affiliate WBAL.

In the six months leading up to Franklin Square’s pediatric ER closing, GBMC admitted an average of 889 pediatric emergency department patients each month. By the next year, that monthly average jumped by 21 additional patients.

“Now we’re seeing the majority of any pediatric ED patients that would normally go to one of the surrounding community hospitals,” Nguyen said.

In July, Tufts Medical Center in Boston converted its 41 pediatric beds to treat adult ICU and medical/surgical patients, citing the need to care for critically ill adults, the health system said.

In other cases, it’s the hospitals that have only 10 or so pediatric beds that started asking the tough questions, Davis said.

“Those hospitals have said, ‘You know what? We have an average of one patient a day or two patients a day. This doesn’t make sense anymore. We can’t sustain that nursing staff with specialized pediatric training for that. We’re going to close it down,’” Davis said.

Registered nurses at Tufts Medical Center hold a

Saint Alphonsus Regional Medical Center in Boise closed its pediatric inpatient unit in July because of financial reasons, the center told CNN affiliate KBOI. That closure means patients are now overwhelming nearby St. Luke’s Children’s Hospital, which is the only children’s hospital in the state of Idaho, administrator for St. Luke’s Children’s Katie Schimmelpfennig told CNN. Idaho ranks last for the number of pediatricians per 100,000 children, according to the American Board of Pediatrics in 2023.

The Saint Alphonsus closure came just months before the fall, when RSV, influenza and a cadre of respiratory viruses caused a surge of pediatric patients needing hospital care, with the season starting earlier than normal.

The changing tide of demand engulfed the already dwindling supply of pediatric beds, leaving fewer beds available for children coming in for all the common reasons, like asthma, pneumonia and other ailments. Additional challenges have made it particularly tough to recover.

Another factor chipping away at bed capacity over time: Caring for children pays less than caring for adults. Lower insurance reimbursement rates mean some hospitals can’t afford to keep these beds – especially when care for adults is in demand.

Medicaid, which provides health care coverage to people with limited income, is a big part of the story, according to Joshua Gottlieb, an associate professor at the University of Chicago Harris School of Public Policy.

“Medicaid is an extremely important payer for pediatrics, and it is the least generous payer,” he said. “Medicaid is responsible for insuring a large share of pediatric patients. And then on top of its low payment rates, it is often very cumbersome to deal with.”

Pediatric gastroenterologist Dr. Howard Baron visits with a patient in 2020 in Las Vegas. A large portion of his patients are on Medicaid with reimbursement rates that are far below private insurers.

Medicaid reimburses children’s hospitals an average of 80% of the cost of the care, including supplemental payments, according to the Children’s Hospital Association, a national organization which represents 220 children’s hospitals. The rate is far below what private insurers reimburse.

More than 41 million children are enrolled in Medicaid and the Children’s Health Insurance Program, according to Kaiser Family Foundation data from October. That’s more than half the children in the US, according to Census data.

At Children’s National Hospital in Washington, DC, about 55% of patients use Medicaid, according to Dr. David Wessel, the hospital’s executive vice president.

“Children’s National is higher Medicaid than most other children’s hospitals, but that’s because there’s no safety net hospital other than Children’s National in this town,” said Wessel, who is also the chief medical officer and physician-in-chief.

And it just costs more to care for a child than an adult, Wessel said. Specialty equipment sized for smaller people is often necessary. And a routine test or exam for an adult is approached differently for a child. An adult can lie still for a CT scan or an MRI, but a child may need to be sedated for the same thing. A child life specialist is often there to explain what’s going on and calm the child.

“There’s a whole cadre of services that come into play, most of which are not reimbursed,” he said. “There’s no child life expert that ever sent a bill for seeing a patient.”

Low insurance reimbursement rates also factor into how hospital administrations make financial decisions.

“When insurance pays more, people build more health care facilities, hire more workers and treat more patients,” Gottlieb said.

“Everyone might be squeezed, but it’s not surprising that pediatric hospitals, which face [a] lower, more difficult payment environment in general, are going to find it especially hard.”

Dr. Benson Hsu is a pediatric critical care provider who has served rural South Dakota for more than 10 years. Rural communities face distinct challenges in health care, something he has seen firsthand.

A lot of rural communities don’t have pediatricians, according to the American Board of Pediatrics. It’s family practice doctors who treat children in their own communities, with the goal of keeping them out of the hospital, Hsu said. Getting hospital care often means traveling outside the community.

Hsu’s patients come from parts of Nebraska, Iowa and Minnesota, as well as across South Dakota, he said. It’s a predominantly rural patient base, which also covers those on Native American reservations.

“These kids are traveling 100, 200 miles within their own state to see a subspecialist,” Hsu said, referring to patients coming to hospitals in Sioux Falls. “If we are transferring them out, which we do, they’re looking at travels of 200 to 400 miles to hit Omaha, Minneapolis, Denver.”

Inpatient pediatric beds in rural areas decreased by 26% between 2008 and 2018, while the number of rural pediatric units decreased by 24% during the same time, according to the 2021 paper in Pediatrics.

Steve Inglish, left, and registered nurse Nikole Hoggarth, middle, help a father with his daughter, who fell and required stiches, inside the emergency department at Jamestown Regional Medical Center in rural North Dakota in 2020.

“It’s bad, and it’s getting worse. Those safety net hospitals are the ones that are most at risk for closure,” Rauch said.

In major cities, the idea is that a critically ill child would get the care they need within an hour, something clinicians call the golden hour, said Hsu, who is the critical care section chair at the American Academy of Pediatrics.

“That golden hour doesn’t exist in the rural population,” he said. “It’s the golden five hours because I have to dispatch a plane to land, to drive, to pick up, stabilize, to drive back, to fly back.”

When his patients come from far away, it uproots the whole family, he said. He described families who camp out at a child’s bedside for weeks at a time. Sometimes they are hundreds of miles from home, unlike when a patient is in their own community and parents can take turns at the hospital.

“I have farmers who miss harvest season and that as you can imagine is devastating,” Hsu said. “These aren’t office workers who are taking their computer with them. … These are individuals who have to live and work in their communities.”

Back at GBMC in Maryland, an adolescent patient with depression, suicidal ideation and an eating disorder was in the pediatric emergency department for 79 days, according to Nguyen. For months, no facility had a pediatric psychiatric bed or said it could take someone who needed that level of care, as the patient had a feeding tube.

“My team of physicians, social workers and nurses spend a significant amount of time every day trying to reach out across the state of Maryland, as well as across the country now to find placements for this adolescent,” Nguyen said before the patient was transferred in mid-March. “I need help.”

Nguyen’s patient is just one of the many examples of children and teens with mental health issues who are staying in emergency rooms and sometimes inpatient beds across the country because they need help, but there isn’t immediately a psychiatric bed or a facility that can care for them.

It’s a problem that began before 2020 and grew worse during the pandemic, when the rate of children coming to emergency rooms with mental health issues soared, studies show.

Now, a nationwide shortage of beds exists for children who need mental health help. A 2020 federal survey revealed that the number of residential treatment facilities for children fell 30% from 2012.

“There are children on average waiting for two weeks for placement, sometimes longer,” Nguyen said of the patients at GBMC. The pediatric emergency department there had an average of 42 behavioral health patients each month from July 2021 through December 2022, up 13.5% from the same period in 2017 to 2018, before the pandemic, according to hospital data.

When there are mental health patients staying in the emergency department, that can back up the beds in other parts of the hospital, creating a downstream effect, Hsu said.

“For example, if a child can’t be transferred from a general pediatric bed to a specialized mental health center, this prevents a pediatric ICU patient from transferring to the general bed, which prevents an [emergency department] from admitting a child to the ICU. Health care is often interconnected in this fashion,” Hsu said.

“If we don’t address the surging pediatric mental health crisis, it will directly impact how we can care for other pediatric illnesses in the community.”

Dr. Susan Wu, right, chats with a child who got her first dose of the Pfizer-BioNtech Covid-19 vaccine at Children's Hospital Arcadia Speciality Care Center in Arcadia, California, in 2022.

So, what can be done to improve access to pediatric care? Much like the reasons behind the difficulties parents and caregivers are experiencing, the solutions are complex:

  • A lot of it comes down to money

Funding for children’s hospitals is already tight, Rauch said, and more money is needed not only to make up for low insurance reimbursement rates but to competitively hire and train new staff and to keep hospitals running.

“People are going to have to decide it’s worth investing in kids,” Rauch said. “We’re going to have to pay so that hospitals don’t lose money on it and we’re going to have to pay to have staff.”

Virtual visits, used in the right situations, could ease some of the problems straining the pediatric system, Rauch said. Extending the reach of providers would prevent transferring a child outside of their community when there isn’t the provider with the right expertise locally.

  • Increased access to children’s mental health services

With the ongoing mental health crisis, there’s more work to be done upstream, said Amy Wimpey Knight, the president of CHA.

“How do we work with our school partners in the community to make sure that we’re not creating this crisis and that we’re heading it off up there?” she said.

There’s also a greater need for services within children’s hospitals, which are seeing an increase in children being admitted with behavioral health needs.

“If you take a look at the reasons why kids are hospitalized, meaning infections, diabetes, seizures and mental health concerns, over the last decade or so, only one of those categories has been increasing – and that is mental health,” Davis said. “At the same time, we haven’t seen an increase in the number of mental health hospital resources dedicated to children and adolescents in a way that meets the increasing need.”

Most experts CNN spoke to agreed: Seek care for your child early.

“Whoever is in your community is doing everything possible to get the care that your child needs,” Hsu said. “Reach out to us. We will figure out a way around the constraints around the system. Our number one concern is taking care of your kids, and we will do everything possible.”

Nguyen from GBMC and Schimmelpfennig from St. Luke’s agreed with contacting your primary care doctor and trying to keep your child out of the emergency room.

“Anything they can do to stay out of the hospital or the emergency room is both financially better for them and better for their family,” Schimmelpfennig said.

Knowing which emergency room or urgent care center is staffed by pediatricians is also imperative, Rauch said. Most children visit a non-pediatric ER due to availability.

“A parent with a child should know where they’re going to take their kid in an emergency. That’s not something you decide when your child has the emergency,” he said.

Jaimie and Effie Schnacky now have an asthma action plan after the 7-year-old's hospitalization in February.

After Effie’s first ambulance ride and hospitalization last month, the Schnacky family received an asthma action plan from the pulmonologist in the ER.

It breaks down the symptoms into green, yellow and red zones with ways Effie can describe how she’s feeling and the next steps for adults. The family added more supplies to their toolkit, like a daily steroid inhaler and a rescue inhaler.

“We have everything an ER can give her, besides for an oxygen tank, at home,” Schnacky said. “The hope is that we are preventing even needing medical care.”

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