New Study Reveals Burden of Post-Sepsis Morbidity Higher Than Previously Thought – ESA Calls for Increased Focus On Post-Sepsis Syndrome

A recent cohort study published in JAMA Network Open based on data from 116 507 survivors of hospital-treated sepsis in Germany sheds light on the heavy burden of long-term effects of sepsis, the most severe complication of infections.

The study reveals that 3 out of 4 sepsis survivors had new medical, cognitive, or psychological diagnoses. Among those younger than 40, more than half are affected. The most common consequences are neuromusculoskeletal diagnosis, i.e. muscular weakness or paralysis followed by problems of the heart, lungs, and other organs. Cognitive disorders, commonly known as ‘brain fog’, lack of concentration, and memory loss are newly diagnosed in up to 20% of patients.

New diagnoses affect sepsis survivors irrespective of preexisting conditions, sepsis severity, and intensive care unit treatment, meaning that post-sepsis morbidity is also in patients who were previously healthy, have not suffered severe organ failure, and were not treated in the ICU. Direct costs for a three-year follow-up can be estimated at €6.8 billion ($7.7 billion) per year. This figure does not include the following indirect costs, like loss of employment by survivors, the need for nursing care, or the life-changing effects on family caregivers.

“These figures date from before COVID-19 and are already staggering. Post-sepsis morbidity is much more common than previously believed. If we add to this the burden that COVID-19 survivors will suffer, as many of them also underwent sepsis, we must expect a tsunami of long-term health problems for which we are not prepared.”, commented Dr. Christiane Hartog, co-author of the study and chair of the ESA Patients and Family Support Working Group.

A systematic review published last year revealed that 78% of COVID-19 patients in the ICU and 33% of COVID-19 patients in the hospital have sepsis, which is the most common cause of death [1]. “Because of the link between COVID-19 and sepsis”, continues Dr. Hartog, “ this study helps explain the scope of health issues linked to long-COVID and the magnitude of the problem that we are facing. People who survived severe infections such as COVID-19 urgently need continued professional care and support.”

The authors analyzed claims data from one of the largest German insurers, covering approximately one-fourth of hospitalized patients in Germany. Sepsis patients were identified by an internationally used coding system. Among survivors, those with pre-existing diseases or conditions were excluded. Further outcomes from the study show that 32% of survivors became dependent on permanent nursing care and 31% died in the following 12 months.

Aurica Pripa, the co-chair of the ESA Patients and Family Working Group, commented on the study: “Often, sepsis survivors and their families are left with no follow-up rehabilitation. For some, recovery can take many years, creating a huge and largely preventable burden on their families. This must be changed. We call for holistic treatment of post-sepsis sequelae in standardized sepsis management practices.”

A recent position paper by the ESA Patient and Family Support Working Group asks that the follow-up must be carried out routinely, at or after hospital discharge, must be multidisciplinary, as patients can be affected by multiple diagnoses after sepsis, and financially sustained by healthcare systems and insurers. The ESA calls for other organizations to support this call.

[1] Karakike, E., Giamarellos-Bourboulis, E. J., Kyprianou, M., Fleischmann-Struzek, C., Pletz, M. W., Netea, M. G., Reinhart, K., & Kyriazopoulou, E. (2021). Coronavirus Disease 2019 as Cause of Viral Sepsis: A Systematic Review and Meta-Analysis. Crit Care Med, 49(12), 2042-2057

Simone Mancini
'Combating Sepsis: Global and National Strategies' – GSA Session at the 2021 World Health Summit Now Available Online

This year’s World Health Summit devoted one session on 24 October to discuss global and national strategies to combat sepsis. The session was jointly moderated by GSA Vice President, Abdulelah Alhawsawi, and GSA Founding President and ESA Steering Committee member Konrad Reinhart. The panel included GSA’s Flavia Machado, from the Latin America Sepsis Institute, Janet Diaz from the World Health Organization, Carolin Fleischmann-Struzek from the Jena University Hospital, as well as Jean-Marc Cavaillon from the Institut Pasteur.

This session provided insights on the role of the immune system in sepsis and the potential of novel immunomodulatory therapeutic approaches, as well as an update on the burden of sepsis and an overview on the effectiveness of quality improvement strategies for sepsis prevention and care at the national and healthcare facility level. The challenges to fight sepsis in resource-limited settings were also discussed, as well as the lessons learned from the current pandemic for the fight against infections and sepsis by other pathogens.

Simone Mancini
Sign Up Now for the 2021 Web Conference of the European Shock Society on Nov 5-6
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On 5 and 6 November, the European Shock Society will host its 19th congress. On Saturday 6 November, a session organised with the Global Sepsis Alliance and ESA will take place. Consult the program below.

It has been 18 months since the COVID-19 pandemic ruptured our world. The pandemic remains a constant natural pressure that leads to important adaptations. One salient adaptation is the need to secure continuing medical education. That is why the conference of the European Shock Society will take place as a free web conference this year.

Our everyday difficulties impose the need to become better. Following this mantra, the ESS has decided to seize this opportunity and offer a completely revamped conference, fitting for this day and age and more attractive younger colleagues. Major changes are:

  • the inclusion of short slots of presentations by world leaders in the field

  • the integration of basic, translational, and clinical research

  • the widening to other societies including the sister Shock societies, the Global Sepsis Alliance and the European Sepsis Alliance but also to the European sepsis research consortium ImmunoSep

  • the use of a web platform that allows interaction between attendees in private rooms in parallel

  • the publication of the presentations as a supplement in the journal Shock

For more details, please visit the conference website. Free registration is available via the link below.

Marvin Zick
4th Annual Meeting of the European Sepsis Alliance Now Available to Rewatch

Thank you all for joining the 4th Annual Meeting of the European Sepsis Alliance last week - it was a pleasure to have you. The event – incl. all presentations, panels, and keynotes – can now be rewatched above or directly on YouTube, including chapter markers so you can jump right to the speaker you are most interested in. A special thanks to all speakers, panelists, and everybody behind the scenes who helped to put the event together. If you want to become involved in the work of the European Sepsis Alliance, please contact us.

Marvin Zick
Join for Free: French Ministry Hosts Sepsis Symposium on WSD, September 13

On the occasion of World Sepsis Day on 13 September 2021, the FHU SEPSIS*, a French federation of university hospitals for sepsis, will organize the symposium "SEPSIS, the true face of COVID-19: Better understand and better care". It will take place at the Ministry of Health in Paris. The morning sessions, in English (livestream as of 9:30 CET), is mostly targeted to medical professional and researchers, whereas the afternoon sessions, in French (starting at 14:00 CET), will be also aimed at the general public.

No registration is need. To join this symposium from remote via Zoom click on the button below. Password: 759279.

*Fédération Hospitalo-Universitaire - This university hospital federation brings together academic and industrial partners in the search for personalized care for patients with sepsis.

Simone Mancini
The First ESA European Sepsis Report
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Today, at its annual meeting, the ESA is launching a report collecting best practices in the fight against sepsis across Europe.

Announcing the report, Evangelos J. Giamarellos-Bourboulis, ESA Chair, said: “We hope that this report will demonstrate what practical and cost-effective measures can be undertaken by European countries, regions, and hospitals. We want to inspire other countries to take action and we call on the European institutions to allocate more resources to sepsis research, education, and awareness, and facilitate the exchange of best practices.”

As illustrated in the report, some European countries have put in place national action plans to improve awareness and management of sepsis, in line with the 70.7 WHA resolution from 2017 which asks UN member states to integrate sepsis in their national health systems. Others have started developing guidelines or processes to improve the quality of care for sepsis. In others, patient groups are taking the lead in engaging with policymakers and stakeholders to start a national dialogue and trigger action.

The report includes initiatives from Belgium, France, Germany, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom. Consult it, and please share it within your network. We want as many people as possible to know about sepsis, its burden, prevention, and mitigation solutions. If your country or region’s initiatives are not displayed in this report, please contact us, we will be happy to include them and enhance the sharing of experiences.

Simone Mancini
ESA Annual Meeting, September 9 - Register Now!
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Update, September 13, 2021:

The recording of the 4th Annual Meeting of the ESA is now available:


Original article:

We are excited to invite you at the 4th ESA annual meeting! Join us on September 9, 2021 for this free event that will be held completely online. It will provide an opportunity to hear from policymakers, experts, and patients about how sepsis can fit into the European health agenda and what are the solutions to the lack of awareness and knowledge about sepsis.

Sepsis Continues to Cost Lives

Despite some advances in some European countries, the limited attention offered to sepsis continues to undermine the efforts to improve its prevention, recognition, and management – and is costing lives. As described in a recent publication by the Global Sepsis Alliance and other scientific societies, most patients admitted in the ICU with COVID-19 progress into viral sepsis, making of sepsis the main cause of death in this pandemic. Health systems that are resilient against sepsis and severe infection will be resilient against future such pandemics.

Countries and regions have started taking encouraging actions, but this is not enough. We need to engage with more stakeholders to ensure that sepsis becomes a priority in the public health agenda for all countries across the whole European Union and continent.

Join the discussion on 9 September with representatives from WHO, European Parliament, Commission, Council, ECDC, renowned experts and patient groups.

Simone Mancini
What Do Sepsis Patients Need? Sepsis Survivors Discuss at World Sepsis Congress 2021

On April 22, Aurica Pripa, coordinator of the ESA Patients and Family Support WG, moderated the session “The Missing Stories: Families and Survivors of Sepsis and COVID-19” at the World Sepsis Congress 2021. This moving discussion amongst some resilient and brave people who shared their stories of surviving sepsis or COVID-19 has shown that:

  1. Education and empowerment of the general public is key. People need to know about sepsis, act on this knowledge, and advocate for themselves and their families. Sepsis needs to be known by its name and mainstreamed. Healthcare practitioners need to be (re)trained to know how to spot sepsis as early as possible and act fast and coordinated. They must rule sepsis IN before ruling it OUT.

  2. A culture change in healthcare is required so that families and patients are treated as partners. Empathic communication is the key: listening actively, not downplaying symptoms, taking patients and family members seriously. Patient-centered care and the ICU/hospitals should become the norm.

  3. Holistic post-sepsis/long-covid rehabilitation and aftercare is required, being deeply conscious of people who are living with these syndromes and disabilities.

All the panelists believe that this pandemic is a key moment in human history and an opportunity to fight for a more equitable, inclusive, and sustainable society. 

Share the links and don't hesitate to contact us for any questions or suggestions.

Simone Mancini
Hellenic Institute for the Study of Sepsis reports that use of anakinra improves by 64% treatment of COVID-19 pneumonia

Swedish Orphan Biovitrum AB (publ) (SobiTM) (STO:SOBI) and the Hellenic Institute for the Study of Sepsis yesterday announced positive top line results from the Investigator-sponsored SAVE-MORE study, which assessed the effect of anakinra in moderate to severe COVID-19 pneumonia patients. Early and targeted use of anakinra in addition to current standard of care in hospitalised patients with poor prognosis prevented either death or progression to severe respiratory failure, whilst increasing the number of patients who were discharged from hospital with no evidence of COVID-19 infection.

SAVE-MORE is a large, randomised controlled trial in over 600 hospitalised patients that specifically identifies those at risk of severe respiratory failure by the measurement of elevated suPAR (soluble urokinase plasminogen activator receptor), a plasma biomarker that reflects immune activation and has been previously associated with poor prognosis in a number of conditions. The study is sponsored by the Hellenic Institute for the Study of Sepsis (HISS) in Greece and led by its President and Chairman, Professor Evangelos J. Giamarellos-Bourboulis. Giamarellos-Bourboulis is Professor of Internal Medicine and Infectious Diseases at the National and Kapodistrian University of Athens, President of the European Shock Society and Chairman of the European Sepsis Alliance. Sobi intends to discuss these results with regulatory authorities to evaluate the possibility of approval.

“This is the first study to specifically evaluate an at-risk patient population before admission to intensive care unit (ICU). The results provide a significant step forward in the search for additional treatment options to prevent progression to a more critical state,” said Professor Giamarellos-Bourboulis. “My thanks go to the many patients and clinicians who have contributed across Italy and Greece.”

Simone Mancini
Announcing World Sepsis Congress 2021 – Online, Free, and Live on April 21st and 22nd, 2021
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Today, the Global Sepsis Alliance has announced the ‘World Sepsis Congress 2021 - Advancing Prevention, Survival, and Survivorship of Sepsis and COVID-19’, taking place live, free of charge, and completely online on April 21st and 22nd, 2021.

Over the course of two days and 15 diverse and highly relevant sessions, over 90 speakers from more than 30 countries will give trenchant talks on all aspects of sepsis, from the impact of policy, the role of artificial intelligence and big data, patient safety, and long-term sequelae through to novel trial design, the latest research, and much more. We will give equal voice to clinicians and researchers, patients and caregivers, and policymakers; as well as to those working, living, and driving change in high-income and in low- and middle-income countries.

Just as with the previous World Sepsis Congresses in 2016 and 2018 and WSC Spotlights in 2017 and 2020, this free online congress brings together highly ranked representatives of international and national healthcare authorities, non-governmental organizations, policymakers, patients, patient advocacy groups, clinical scientists, researchers, and pioneers in healthcare improvement.

Simone Mancini
The European Sepsis Alliance Supports the John Snow Memorandum
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The European Sepsis Alliance supports the John Snow* Memorandum. This Memorandum is a collaborative and inclusive initiative to protect public health in this COVID-19 pandemic and the work of a group of international researchers with expertise spanning public health, epidemiology, medicine, pediatrics, sociology, virology, infectious disease, health systems, psychology, psychiatry, health policy, and mathematical modeling. Said group felt moved to deliver a clear and simple message about how best to manage the COVID-19 pandemic.



THE JOHN SNOW MEMORANDUM

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has infected more than 35 million people globally, with more than 1 million deaths recorded by the World Health Organization as of Oct 12, 2020. As a second wave of COVID-19 affects Europe, and with winter approaching, we need clear communication about the risks posed by COVID-19 and effective strategies to combat them. Here, we share our view of the current evidence-based consensus on COVID-19.

SARS-CoV-2 spreads through contact (via larger droplets and aerosols), and longer-range transmission via aerosols, especially in conditions where ventilation is poor. Its high infectivity(1) combined with the susceptibility of unexposed populations to a new virus, creates conditions for rapid community spread. The infection fatality rate of COVID-19 is several-fold higher than that of seasonal influenza(2) and infection can lead to persisting illness, including in young, previously healthy people (ie, long COVID(3)). It is unclear how long protective immunity lasts(4) and, like other seasonal coronaviruses, SARS-CoV-2 is capable of re-infecting people who have already had the disease, but the frequency of re-infection is unknown(5). Transmission of the virus can be mitigated through physical distancing, use of face coverings, hand and respiratory hygiene, and by avoiding crowds and poorly ventilated spaces. Rapid testing, contact tracing, and isolation are also critical to controlling transmission. The World Health Organization has been advocating for these measures since early in the pandemic.

In the initial phase of the pandemic, many countries instituted lockdowns (general population restrictions, including orders to stay at home and work from home) to slow the rapid spread of the virus. This was essential to reduce mortality(6),(7) prevent health-care services from being overwhelmed, and buy time to set up pandemic response systems to suppress transmission following lockdown. Although lockdowns have been disruptive, substantially affecting mental and physical health, and harming the economy, these effects have often been worse in countries that were not able to use the time during and after lockdown to establish effective pandemic control systems. In the absence of adequate provisions to manage the pandemic and its societal impacts, these countries have faced continuing restrictions.

This has understandably led to widespread demoralisation and diminishing trust. The arrival of a second wave and the realisation of the challenges ahead has led to renewed interest in a so-called herd immunity approach, which suggests allowing a large uncontrolled outbreak in the low-risk population while protecting the vulnerable. Proponents suggest this would lead to the development of infection-acquired population immunity in the low-risk population, which will eventually protect the vulnerable. This is a dangerous fallacy unsupported by scientific evidence.

Any pandemic management strategy relying upon immunity from natural infections for COVID-19 is flawed. Uncontrolled transmission in younger people risks significant morbidity(3) and mortality across the whole population. In addition to the human cost, this would impact the workforce as a whole and overwhelm the ability of healthcare systems to provide acute and routine care.

Furthermore, there is no evidence for lasting protective immunity to SARS-CoV-2 following natural infection(4) and the endemic transmission that would be the consequence of waning immunity would present a risk to vulnerable populations for the indefinite future. Such a strategy would not end the COVID-19 pandemic but result in recurrent epidemics, as was the case with numerous infectious diseases before the advent of vaccination. It would also place an unacceptable burden on the economy and healthcare workers, many of whom have died from COVID-19 or experienced trauma as a result of having to practise disaster medicine. Additionally, we still do not understand who might suffer from long COVID(3). Defining who is vulnerable is complex, but even if we consider those at risk of severe illness, the proportion of vulnerable people constitute as much as 30% of the population in some regions(8). Prolonged isolation of large swathes of the population is practically impossible and highly unethical. Empirical evidence from many countries shows that it is not feasible to restrict uncontrolled outbreaks to particular sections of society. Such an approach also risks further exacerbating the socioeconomic inequities and structural discriminations already laid bare by the pandemic. Special efforts to protect the most vulnerable are essential but must go hand-in-hand with multi-pronged population-level strategies.

Once again, we face rapidly accelerating increase in COVID-19 cases across much of Europe, the USA, and many other countries across the world. It is critical to act decisively and urgently. Effective measures that suppress and control transmission need to be implemented widely, and they must be supported by financial and social programmes that encourage community responses and address the inequities that have been amplified by the pandemic. Continuing restrictions will probably be required in the short term, to reduce transmission and fix ineffective pandemic response systems, in order to prevent future lockdowns. The purpose of these restrictions is to effectively suppress SARS-CoV-2 infections to low levels that allow rapid detection of localised outbreaks and rapid response through efficient and comprehensive find, test, trace, isolate, and support systems so life can return to near-normal without the need for generalised restrictions. Protecting our economies is inextricably tied to controlling COVID-19. We must protect our workforce and avoid long-term uncertainty.

Japan, Vietnam, and New Zealand, to name a few countries, have shown that robust public health responses can control transmission, allowing life to return to near-normal, and there are many such success stories. The evidence is very clear: controlling community spread of COVID-19 is the best way to protect our societies and economies until safe and effective vaccines and therapeutics arrive within the coming months.

We cannot afford distractions that undermine an effective response; it is essential that we act urgently based on the evidence.



*ABOUT JOHN SNOW

John Snow is considered one of the founders of modern epidemiology. He developed the water theory of transmission of cholera. In 1854, he famously persuaded authorities to remove the handle of a water pump to try to curtail transmission of cholera during an outbreak in London. He devoted much of his life to improving public health…

Simone Mancini
Tuscany Region Issues Sepsis Treatment and Management Guidelines
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The Tuscany Region has presented a comprehensive document that presents strategies for sepsis recognition and treatment in the various contexts in which sepsis can occur, as well as for the prevention of this serious pathology and of the infections that cause it.

The document is the result of the work of a pool of clinical experts selected within the regional health authorities. The effort is coordinated by the Regional Clinical Risk Management and Patient Safety Centre (GRC) and the Agenzia Regionale di Sanità (ARS, Tuscany Region Healthcare Agency). The editors of the document are Giulio Toccafondi from the Quality Improvemnet Committee of GSA and Giorgio Tulli.

This document is based on the Surviving Sepsis Campaign guidelines and on evidence reported in the literature concerning microbiology, clinical care, human factors, quality and safety of care. It proposes a vision of the critical issues that sepsis brings with it to the healthcare system, a vision not attributable to a single disciplinary perspective but rather an expression of multiple viewpoints of team members. The document suggests and indicates approaches that are integrated on both a strategic-organizational level and in clinical-care practice.

The Global Sepsis Alliance welcomes the thorough work of Tuscany Region and is keen to learn about its implementation, including achievements and challenges.

This is a great example of what national, but also regional authorities can do to support their health system’s preparedness to prevent, manage and treat sepsis, as recommended in the WHA 70.7 Resolution on sepsis. The GSA strongly exhort national and regional authorities to undertake similar efforts and stands ready to support such efforts.

Simone Mancini
Life After Sepsis Guide, Now Also Available in French, German, Dutch, and Romanian
Jamila Hedjal lost her son Farès to sepsis in 2018, which led her to form the France Sepsis Association.

Since the launch of the brochure in March, we have received positive feedback across numerous countries, that confirmed the need for translating it in different languages. In the past months we have worked on a number of translations that today we make available on our website here.

This guide aims at guiding sepsis survivors and their families and at informing the general public, patients, their relatives, and healthcare professionals about sepsis. It explains that there is a need for an urgent response, considering the potential consequences of sepsis, including lifelong disabilities.

Sepsis affects the whole body, so recovery also involves the whole body. Most patients who survive sepsis will eventually fully recover. Others may face long-term consequences. It is important to know that recovery may take months or years. After-sepsis effects, often called Post-Sepsis Syndrome or Post-Sepsis Symptoms, can present very diverse consequences that sometimes appear even years later.

Severely ill COVID-19 patients and those affected by sepsis from other pathogens — such as bacteria, other viruses, fungi, or parasites — are indistinguishable on clinical grounds. Further, post-sepsis syndrome and long COVID-19 signs overlap. We hope that this guide can be of use also for those suffering long term effects of COVID-19.

The more people know about sepsis the better we can prevent it, treat it, and manage it. Please download and share the guide on social media or, if you are an organization or an authority, consider embedding it on your web site (see the Life After Sepsis Guide on the Romanian Health Ministry website here, for example).

Simone Mancini
Michael’s Sepsis Story – Starting a Sepsis Patient Group in Belgium After Surviving Sepsis in 2016
Jamila Hedjal lost her son Farès to sepsis in 2018, which led her to form the France Sepsis Association.

I first came in contact with the European Sepsis Alliance in 2018 through a friend who was chairing the ESA annual meeting that year and knew of my sepsis experience.  At the ESA virtual annual meeting in March 2020, I spoke as a panelist of my experience with sepsis after previously participating in the ESA Policy and Stakeholder Engagement work group. I had fully retired, aged 69, from an international career with PwC in 2015, except for working pro bono as the Executive Director of the Belgian Chapter of Transparency International (TI B). I was then a long-term patient for colon cancer since 1990 when I had undergone a successful surgery at a leading Belgian teaching hospital.

My experience with sepsis started after a regular check-up in early 2016 when it was decided to remove what was left of my colon in a procedure that would avoid the need for a stoma. I was operated on in mid-March 2016 by a successor to the professor who had operated on me in 1990 and had followed me up until his recent retirement. He had become a good friend.

After the operation, I started to run a temperature and my blood pressure was falling. My wife queried the slow response of the medical staff in the absence out of the country of the professor who had operated. She contacted our medical friend. By then I had suffered a septic shock and was in a coma. Our friend monitored the remedial treatment, which included a second operation and the placing of a permanent ileostomy. During the three weeks that I was in the intensive care unit, I suffered a cardiovascular accident and two heart stoppages before my situation was stabilized. After two months, I was moved to an independent, specialized revalidation points clinic, Inkendaal. I was largely immobile and officially classified as handicapped in Belgium with an ileostomy, hemianopsia on the right side (120° field of vision), impaired balance (no ladders, bicycles, mopeds, etc.), residual problems with one finger and toes, and some loss of memory. I was treated at Inkendaal until January 2017, first as a resident for four months, and then three days a week as an outpatient.

Now, after four years since my septic shock, I am able to swim regularly around 500 m and walk up to 10 km with Nordic sticks. I drive around 20,000 km a year and regularly spend up to five hours gardening in our large wild garden. I had to stop working as the Executive director of TI B but I am now working again a little with them. My very successful recovery was in large part thanks to the excellent revalidation program I followed at Inkendaal.

After the 2020 ESA annual meeting, I participated in the Patient and Family Support work group. I had noted that in Belgium there was no equivalent national sepsis patient and survivor group. Through Idelette Nutma, who leads the ’Sepsis en daarna’ initiative in The Netherlands, I have been able to enlist the considerable support of Carine Nelissen, a sepsis survivor, and Hans Hellinckx, Public Policy and Governmental Affairs manager of Becton Dickinson (BD Benelux). Carine had also suffered a septic shock after becoming unwell after a minor operation to deal with a kidney stone. She required ICU treatment before recovering. Carine returned to work but now, some five years later she finds that there are still sequels, particularly becoming more easily physically tired than before. Carine, with the help of her son, has been key in developing our website and Facebook page.

Hans has been very helpful in promoting our SEPSIBEL initiative with several of his relevant contacts, as he has made it his personal ambition to put sepsis high on the Belgian political agenda. Hans facilitated the meeting with Belgian politicians who have shown their support for the idea of a national action plan against sepsis. Hans plans to inform the various experts and professional (scientific) associations of specialists and nurses (intensive care, emergency care, infection prevention, and microbiology) while calling on them to support this initiative and creating an expert reflection Task Force.


The article above was written by Michael Clarke and is shared here with his explicit consent. The views in the article do not necessarily represent those of the European Sepsis Alliance. They are not intended or implied to be a substitute for professional medical advice. The whole team here at the ESA and World Sepsis Day wishes to thank Michael for sharing his story and for fighting to raise awareness for sepsis.

Simone Mancini
World Sepsis Congress Spotlight, 9 September - A Free Online Congress by WHO and GSA
Jamila Hedjal lost her son Farès to sepsis in 2018, which led her to form the France Sepsis Association.

In just one week, on 9 September, the WHO and the GSA will host the “World Sepsis Congress Spotlight: Sepsis, Pandemics, and Antimicrobial Resistance – Global Health Threats of the 21st Century”. This free online congress is a great opportunity to connect to and learn from over 30 high level speakers and leading experts from around the globe.

The European Sepsis Alliance is excited to support the event and invites you to attend. Participation is free of charge and can be done from wherever you have an internet connection. To register and to find out more about the program, speakers, time zones, and much more, please visit wscspotlight.org.

Simone Mancini
Exclusive Interview with Jamila Hedjal, Founding President of the France Sepsis Association
Jamila Hedjal lost her son Farès to sepsis in 2018, which led her to form the France Sepsis Association.

Jamila Hedjal lost her son Farès to sepsis in 2018, which led her to form the France Sepsis Association.


You set up the organization due to the tragic loss of your son Farès in 2018 - in his memory what purpose/direction does the France Sepsis Association have?

I created the France Sepsis Association in November 2018 right after the death of my son Farès, who died after a ‘septic shock’ caused by appendicitis.

I did not know the term ‘sepsis’ or ‘septic shock’ then. As I embarked on research, I discovered that sepsis – according to the WHO resolution in May 2017 – is a global health priority. It is an emergency and causes about 11 million deaths per year worldwide, thereof at least 30,000 in France, which is huge! Moreover, I understood that this pathology is little known to the general public and to some health professionals, except from intensivists, emergency room attendants, etc. Therefore, I saw the need and had great motivation to bring the France Sepsis Association to life. The primary objective should be to raise awareness and educate the general public, and health professionals, in particular general practitioners, caregivers, pharmacists, firefighters, referral nurses at the hospital, and more.

The priority is to diagnose sepsis quickly to ensure the optimal treatment because every minute counts. The earlier sepsis is recognized, the more likely one is to survive. It is absolutely urgent to educate and sensitize the general public and health professionals so they can be involved in the care journey.
This education will also involve the training of patients, families of patients, and healthcare professionals.

The France Sepsis Association is for patients and relatives affected by sepsis. It has the role of accompaniment and support in the follow-up of the care of patients with sepsis, it carries their voices in different instances to improve and ensure their comfort, and the quality and safety of care.

When did the France Sepsis Association come to be?

Officially, the France Sepsis Association was established on April 7th, 2020, during the first stages of the lockdown here in France.

Who else is involved in the France Sepsis Association?

Many people are becoming involved. Currently, most are relatives of sepsis patients and family members of those who died of sepsis, as well as resuscitation and healthcare professionals.

Have you connected with other survivors or families affected by sepsis in the process? What organizations and groups have you connected with?

Yes, absolutely, we are in contact with the families of survivors. The organizations with which we are in contact with are the Ministry of Health, the Regional Health Agency, the High Authority of Health, local authorities, hospitals, the council of the Medical Association, and of course the European Sepsis Alliance Working Group Patient and Family Support.

From your own experience, what do you feel are the current issues causing preventable deaths in France, Europe, and worldwide?

Based on my analysis, I think there are several factors:

  1. The underestimation of sepsis and its fatal impact has made it impossible to attract more attention from the public authorities, as a result they are not equipped with the necessary means to stop preventable deaths.

  2. The lack of knowledge of how to recognize the symptoms of sepsis combined with the lack of training necessarily lead to late treatment. The lack of safety and quality in care can also cause nosocomial infections.

  3. The priority is to focus on general medicine and chronic disease specialties (for people at risk) and to implement all appropriate means in the patient’s care journey to enable the rapid diagnosis of sepsis and to ensure its timely treatment.

What do you think needs to happen to stop preventable deaths from sepsis particularly in France and Europe? What role will the France Sepsis Association play?

Sepsis must be recognized as an imminent emergency as well as cardiovascular diseases. We must act quickly! In the medical jargon, a sepsis patient without treatment in the ‘golden hour’ dies.

For this, it is necessary to inform and educate the general public and health professionals about sepsis through awareness campaigns, media coverage, advertising spots, social media, conferences, carrying out actions for all audiences – children, adolescents, adults, and elderly people.

The collaboration of all health actors, health system institutions, associations, and organizations is a key to success in effectively fighting sepsis and thus preventing deaths. It should be noted that the awareness of public authorities remains an unavoidable lever.

The France Sepsis Association will work in synergy with French, European, and other health bodies and organizations to develop information and communication on sepsis to recognize signs and severity to reduce mortality.

How can the wider network of actors leading the fight against sepsis support the France Sepsis Association in its development?

Thanks to the popularity of the Global Sepsis Alliance and the European Sepsis Alliance’s network, I’m able to learn from the knowledge and experience of other countries. The different actions carried out in all parts of the world should encourage countries like France to develop education and awareness programs on sepsis to reduce mortality. Joint actions such as World Sepsis Day in the four corners of the globe are an opportunity to fight together and have the potential to achieve a high level of awareness in the world. Moreover, a pooling and close collaboration with such a global organization with a common objective is an asset to fight with force this scourge throughout the planet.

I’m convinced that together we can raise the attention on the importance and urgency of sepsis and on its impact on the world, by addressing public authorities and the public opinion via all possible means.

Lastly, I would like to thank the GSA and the ESA for supporting me in creating the France Sepsis Association. Their work and moving sepsis stories were a source of inspiration.


This interview was conducted by Siobhan Donnachie and Katja Couball via email on Monday, August 10th, 2020. It has been edited for clarity and brevity. A big thanks to Jamila for agreeing to speak with us.

Marvin Zick
ESA responds to the WHO European Work Program 2020-2025
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The European Sepsis Alliance (ESA) welcomes the WHO European Work Program (EWP) 2020-2025 and believes that the program’s priorities respond to the main challenges that society is facing and that need a strong and globally coordinated response. We thank the WHO Europe Office for the opportunity to comment on the document and wish the WHO Regional Director for Europe, Dr. Kluge and his team much success in the coming years. The ESA is keen to support the EPW 2020-2025 with our pool of experts with different medical backgrounds from all over Europe.

The COVID-19 crisis reminds us that infectious diseases and sepsis present a major global health threat. It is important to note that from 2 to 5% of patients with COVID-19, and as many as 25-50% of those hospitalized, develop complications such as sepsis and septic shock, tragically contributing to the already enormous burden of deaths from sepsis. Sepsis affects yearly between 47 and 50 million people worldwide and causes 11 million deaths[1]. According to the latest estimates, sepsis affects around 3,4 million Europeans and causes almost 700.000 deaths yearly[2], the majority of which is preventable. Sepsis care must be part of standard infectious disease and pandemic response.

Therefore, ESA suggests including under Core priority 2, point 2. “Enhance country preparedness and response capacity”, national infection management plans, that would include sepsis prevention, diagnostic and treatment, as already recommended by the 2017 WHA Resolution 70.7 on sepsis.

Regarding core priority 3, point 3 “Safer health care”, ESA suggests including the promotion of early recognition systems, standardized emergency treatments, and allocation of necessary resources to prevent and treat sepsis.

You can consult ESA’s full response to the public consultation below.

[1] Global, regional, and national sepsis incidence and mortality, 1990–2017: analysis for the Global Burden of Disease Study – The Lancet

[2] Mellhammar L, Wullt S, Lindberg Å, Lanbeck P, Christensson B, Linder A. Sepsis Incidence: A Population-Based Study. Open Forum Infect Dis. 2016;3(4):ofw207. Published 2016 Dec 8. doi:10.1093/ofid/ofw207

 


Simone Mancini
The Story of Farès – Taken by Sepsis at Only 13 Years of Age
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On Saturday, November 24th, 2018, I tragically lost my son Farès, a child just 13 years old, to sepsis caused by appendicitis.

 Farès was a brilliant student attending 4th grade of a college in the Paris region, France.

 The week preceding his death, he suffered from abdominal pain and vomiting. During this week, Farès underwent several consultations with both general practitioners and hospital doctors. Everyone came to the same medical finding. According to the doctors, Farès suffered from gastroenteritis. It was a chaotic journey!

 Finally, after the fourth doctor visit, Farès was hospitalized, but unfortunately, he did not undergo a radiological examination, only a biological assessment which showed inflammation that did not raise concern for the medical team.

 Farès had two major abdominal pain attacks in the night of his hospitalization, which were not seen as an emergency, while I kept actively requesting the presence of a doctor. Eventually the next morning, Farès had a septic shock, and even though I was present and alerted the team immediately so that he would be taken care of, the team persisted in saying that it was an anxiety attack.

 However, at this point, Farès was at only 60% oxygen saturation, his skin began to mottle and his blood pressure was low. It was then when he would have a cardiac arrest and died in front of me.

 Following this drama, I started my research on sepsis and it was then when I discovered that it is a major global public health problem. That's how I got in touch with both the Global Sepsis Alliance and the European Sepsis Alliance. Thanks to these organizations, the latter will mark the beginning of my fight.

I created the France Sepsis Association, an association of patients and families affected by sepsis whose objectives are to raise awareness among the general public and health professionals. Our goal is to avoid deaths caused by sepsis thanks to rapid treatment and early recognition by general practitioners, who should refer patients to the appropriate care unit.

My ambition is to help European and global organizations to lower the mortality rate. Sepsis deaths are preventable if taken care of early and through active education.


Simone Mancini