IN VIVO #12 ENG

Think health

No. 12 – JULY 2017

PATIENTS TELL THEIR STORIES /

RARE DISEASES

IN THE LIMELIGHT / HOSPITALS TAKE ACTION / POLITICAL STRATEGIES

SERGE TISSERON “Empathy’s enemy is the desire to control everything” TABOO The silent scourge of senior abuse REPORT Inside the operating room Published by the CHUV www.invivomagazine.com IN EXTENSO THE SCIENCE OF HAPPINESS

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IN VIVO / NUMBER 12 / JULY 2017

CONTENTS

FOCUS

11 / TIME TO ACT Rare diseases in the limelight Doctors and patients alike are fighting for the development of new treatments

BY JOËLLE CACHIN

MENS SANA

22 / INTERVIEW

BY FABIENNE PINI SCHORDERET

IN SITU

26 / TRENDS

07 / HEALTH VALLEY

Autopsies are long for this world

BY BERTRAND TAPPY

29 / PROSPECTING White coats and grey hair

BY PATRICIA MICHAUD

CORPORE SANO

33 /

TABOO

Shining light on elder abuse

BY ANDRÉE-MARIE DUSSAULT

36 / IN THE LENS Operation: new look

BY MELINDA MARCHESE

Cameras in the cradle

CURSUS

43 / COMMENTARY In favour of medical humanities

44 / TANDEM Psychiatrist Philipp Baumann and neurobiologist Pascal Steullet

The zebra has been a symbol of rare diseases ever since the 1940s, when Dr Theodore Woodward, a professor at the University of Maryland in the United States, incorporated the animal into a metaphor for his medical school students. “When you hear hoof beats, think horses not zebras.”

When faced with certain symptoms, young doctors should first think about common pathologies. A rare disease diagnosis should only be considered at a later stage.

ISTOCK

Serge Tisseron: “Empathy’s enemy is the desire to control everything”

CONTRIBUTORS

JOËLLE CACHIN A recent graduate of the Academy of Journalism and Media, Joëlle Cachin produced this issue’s special report on rare diseases (p. 11–21). For this feature she interviewed about 10 people, including two women with rare diseases who were willing to tell their story.

STÉPHANIE DE ROGUIN For this issue of “In Vivo”, Stéphanie de Roguin, a staff journalist for LargeNetwork, delved into the new technologies that neonatal units are investing in (p. 7).

FABIENNE PINI SCHORDERET Specialised in corporate communication, with a focus on international sport, Fabienne Pini Schorderet joined CHUV in 2013 as communications officer. She went to Paris to interview psychoanalyst Serge Tisseron (p. 22).

BACKSTAGE HEALTH VALLEY Geneva-based illustrator Sébastien Fourtouill engraved a map of French-speaking Switzerland onto linoleum. Using an intaglio press, the image was then pressed onto paper (p. 4).

DR

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2

Editorial

THE FIGHT AGAINST RARITY HAS ONLY JUST BEGUN

DR

BERTRAND TAPPY Project manager

3

“What is rare is valuable.” Whether in reference to ocean access, a gold mine, or a plot of fertile land, this saying summarises nearly all of human history. It has spelled fortune and ruin for entire empires by causing wars and conflicts that have fashioned the modern world.

By changing just one word, we are left with “what is rare is expensive”. This seemingly minor shift nevertheless points to the incredible healthcare challenge posed by orphan diseases. After all, how much can you matter if you are the only one out of more than 10,000 people who needs a treatment? How can you convince the pharmaceutical industry to invest tens of thousands of dollars in research to improve the lives of patients facing the same struggle as you every day? Sometimes, rarity doesn’t convey fame and wealth. It can also mean injustice, patience, and courage. That’s exactly why we decided to write a special report (p. 11) on those who dedicate their lives to helping people suffering from diseases whose names – when they even have a name – more often result in confusion than empathy among the general public.

On a more personal note, I’d also like to tell you how grateful I am for the past few years during which it was my privilege to create and cover “In Vivo” – and to watch it flourish. I’ll be leaving to take on a new challenge, but the memories I’ll keep with me from the magazine are absolutely priceless. ⁄

Thanks to its university hospitals, research centres and numerous start-ups specialising in healthcare, the Lake Geneva region is a leader in the field of medical innovation. Because of this unique know-how, it has been given the nickname “Health Valley”. In each “In Vivo” issue, this section starts with a depiction of the region. This map is a linocut realised by the Swiss illustrator Sébastien Fourtouill.

IN SITU

HEALTH VALLEY Panorama of the latest innovations.

ÉCUBLENS

P. 08

EPFL researchers have invented a touchscreen tablet to help the visually impaired find their way.

GENEVA

P. 06

SÉBASTEIN FOURTOUILL

The company Biostime chose to build its first office outside of China at Campus Biotech.

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BIENNE

P. 06

Optimo Medical, which is developing a technology for corneal surgeries, received the 2017 Vigier Award.

NEUCHĂ‚TEL

P. 08

A pilot project has been launched to help prevent mental health problems among young people.

LAUSANNE

P. 06

A new application now alerts volunteers when a person near their location is suffering from a heart attack.

5

IN SITU

START-UP CELLS

Selexis, a Geneva start-up specialised in manufacturing recombinant proteins, has signed an agreement with the French company Sanofi.

The start-up will develop research cell banks for three biological programmes for the pharmaceutical giant.

BIOINFORMATICS

The Monthey-based start-up SimplicityBio was selected as one of the 100 finalists for the Red Herring Top 100 Europe Award. The BioArk start-up develops and markets bio-IT tools for the diagnostics and pharmaceutical markets.

CORNEA

Optimo Medical, based in Bienne, was one of five winners of the 2017 Vigier Award. This start-up, which developed technology used to perform safer and more precise corneal surgeries, was awarded 100,000 Swiss francs.

Since 1989, the Fondation W.A. de Vigier has awarded this prize every year to encourage young Swiss entrepreneurs to innovate.

SCLEROSIS

GliaPharm, a start-up created at EPFL, moved into Geneva’s Campus Biotech in May. The company, which is developing a treatment for amyotrophic lateral sclerosis, is working on raising two million Swiss francs to finance pre-clinical trials.

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HEALTH VALLEY

“We would like to promote further interactions between Switzerland and China.”

PATRICE MALARD IN MAY THIS YEAR, THE PRESIDENT OF THE CHINESE COMPANY BIOSTIME SPOKE WITH THE “TRIBUNE DE GENÈVE” REGARDING ITS MOVE TO GENEVA’S CAMPUS BIOTECH. THE COMPANY, BASED OUT OF GUANGZHOU, HAS ESTABLISHED A PLATFORM TO PROMOTE SCIENTIFIC DEVELOPMENT IN THE FIELDS OF NUTRITION, PSYCHOLOGY AND HEALTHCARE. THIS IS THE FIRST BIOSTIME OFFICE TO OPEN OUTSIDE OF CHINA.

435

This is how many millions of dollars the American group Boston Scientific spent to purchase Symetis, a company in Vaud specialised in the production of heart valves. The Ecublens company’s IPO, which had been planned for April, has been cancelled. Boston Scientific, its former rival, is seeking to become a heavyweight in the market for transcatheter aortic valves and other cardiac medical devices.

A new antibody to fight cancer

IMMUNOTHERAPY An EPFL laboratory has discovered an effective antibody to block two proteins that regulate the growth of blood vessels within tumours. This antibody, known as A2V, also triggers a process that initiates the patient’s immune response. In addition, A2V can block metastasis, which is often fatal to the patient. The work of Michele de Palma’s team has been published in the journal Science Translational Medicine.

THE APPLICATION

ECHO112-FIRST RESPONDER Jocelyn Corniche, an anaesthesiologist at Lausanne University Hospital (CHUV) and the Bois-Cerf Clinic, designed this application so heart attack victims wouldn’t have to wait for an ambulance before receiving care. The app sends out an alert to a network of volunteers and professionals located nearby.

The actions of these first responders can mean the difference between life and death.

When a person’s heart stops beating, their chances of survival drop by 7% to 10% every minute.

Metabolic boundaries

CONFERENCE Metabolism specialists will meet from 24–26 October at the SwissTech Convention Center for a symposium organised by EPFL. Participants will discuss the latest discoveries in a wide range of fields, including cellular biology, metabolomics, and the treatment of metabolic syndrome. Some conferences will be open to the public.

IN SITU

HEALTH VALLEY

Cameras in the cradle Filming premature babies lets doctors monitor their health and communicate with parents. A closer look.

PHOVEA

NEONATOLOGY New technology consisting of a system of cameras that measures the heart and respiratory rate of premature babies has been developed by the Swiss Center for Electronics and Microengineering (CSEM) and the Swiss Federal Institute of Technology in Lausanne (EPFL) and is currently in testing. “The purpose of this technology is twofold,” explains Virginie Moser, a researcher at CSEM. “It removes the need to attach sensors to the baby’s skin, which cause discomfort and stress, and avoids the large number of false alerts they generate because they are very sensitive to movement.”

The cameras are located inside the incubators themselves and record around the clock. By detecting slight changes in skin colour caused by the baby’s heartbeat, the cameras can measure heart rate. They film the movements of the baby’s heart and stomach to check respiratory frequency.

Real-time processing CSEM, which is specialised in imaging systems, took care of calibrating the devices.

EPFL identified exactly which areas of the skin to measure. In order to fine-tune the cameras, experiments were conducted on the cheeks and foreheads of adults – two highly vascularised areas where skin is thinnest. The two institutes also developed an algorithm to process the data in real time.

“This allowed us to only have a three-second delay after each heartbeat,” says Virginie Moser. “The baby’s healthcare team can therefore intervene immediately in case of an irregular heartbeat or another problem.”

The Neonatal Service at Zurich University Hospital has taken part in the project since the beginning, especially when it comes to providing on-the-ground feedback. A sixmonth pilot phase began at the hospital in mid-June.

“The number of premature babies has risen slightly,” says Riccardo Pfister, director 7

TEXT STÉPHANIE DE ROGUIN

ABOVE: RICCARDO PFISTER FROM GENEVA UNIVERSITY HOSPITALS AND THE BBVISION VIDEOCONFERENCING SYSTEM

of the Neonatal Unit at Geneva University Hospitals. “The chances of survival for the most premature babies have increased and pregnancies are being more closely monitored, which means babies can be delivered earlier in case of a problem. This increase is significant in several countries in Europe.

The figure has risen less sharply in Switzerland, but our country will soon fall in line with this trend.”

Closer through close-ups In Geneva, cameras started being used in the neonatal service a decade ago, but for a different purpose entirely. They served to foster a relationship between the newborn and his or her parents, especially when they couldn’t be in the same room as the baby, such as when the mother was hospitalised, for example. A partnership with the foundation Defitech made it possible to build carts equipped with cameras that nurses could wheel in front of the incubators.

“However, because hospital servers are strongly protected, the systems were too complicated to operate for the care staff,” says Riccardo Pfister. In 2015, the project was modernised and simplified. With the videoconferencing system BBvision, which was also installed inside the paediatric intensive care unit, each incubator is now equipped with its own camera. The device is linked to a secure hospital server that lets parents observe their children from a distance, whether they’re at home or anywhere else, using a mobile application.

All they have to do is call the nurse, who then sends a link that is only valid for a limited time. “We are currently studying how stressful it would be to allow constant access, both for the parents and the nursing staff,” adds Pfister. While the current system is widely used, physical contact between the baby and his or her parents as soon as possible is still preferred. ⁄

IN SITU

HEALTH VALLEY

3 QUESTIONS FOR

YANNICK BOILLOD

A PILOT PROJECT FOCUSING ON THE MENTAL HEALTH OF YOUNG PEOPLE WAS LAUNCHED IN APRIL IN THE CANTON OF NEUCHÂTEL. IT COULD BE ROLLED OUT TO OTHER SWISS FRANCOPHONE CANTONS.

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WHAT ARE THE MENTAL HEALTH PROBLEMS AFFECTING YOUNG SWISS PEOPLE?

The main issues are feelings of loneliness (which affect young people more than the elderly), harassment on social networks, failure at school, discrimination, and issues related to sexuality, such as an individual’s sexual orientation. None of these are pathological, but it’s important to remember that among our target audience, i.e. young people aged 12 to 20, it is very rare for individuals to be already diagnosed with something like schizophrenia.

THE DEVICE

TABLET FOR THE VISUALLY IMPAIRED EPFL researchers have invented a touchscreen tablet designed to help the visually impaired find their way.

Its 192 magnetic buttons can rise up from the surface of the screen in a few milliseconds to represent the layout of streets, a room, or a building. Users can even zoom in on a part of the map. This device can help the visually impaired have a better understanding of unknown locations and become more independent when travelling.

2.4 WWW.BLINDPAD.EU

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WHAT IS THE PURPOSE OF YOUR PROJECT?

We want to provide struggling youths with information about where they can get help in their region in just a few clicks. We created a website that suggests phrases like “My parents can’t stand each other”, “I want to die,” and “Do I like boys or girls?”. The user can click on each sentence and find advice and contact information for the appropriate services. That’s the main part of the project. Other components have been added to round out the service, including an art competition on mental health, videos about prevention, on-the-ground events during the summer, and pamphlets designed to be passed out in schools.

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WHAT IS INNOVATIVE ABOUT THIS CAMPAIGN?

We got the canton’s various mental health actors to work together on a single campaign, which has not been done elsewhere. It’s also the first time 20,000 Neuchâtel students will receive systematic prevention education on such a wide range of topics.

Up until now, prevention was theme-based and was provided only if the school decided to participate. / Yannick Boillod is the managing director of Pro Juventute Arc Jurassien.

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This is the amount (in Swiss francs) donated by the Bill and Melinda Gates Foundation to iM4TB, a foundation based at EPFL that is developing an innovative drug for the treatment of tuberculosis.

This grant will be used to fund the clinical trials that will be conducted in collaboration with the Clinical Pharmacology Department at CHUV.

IN SITU

CANNABIS ATTEMPTING A COMEBACK Nine years after its decriminalisation was voted down, the debate to legalise the plant is back on the table in Switzerland.

Time to put a stop to the misinformation circulating about cannabis.

That is the message that GREA, a group in French-speaking Switzerland that studies drug addictions, sent out at a conference of experts from Lausanne University Hospital and Geneva University Hospitals held in the spring of 2017 to discuss the therapeutic and psychiatric effects of the substance. The specialists pointed out that cannabis is less addictive than tobacco and alcohol; it does not destroy brain cells – unlike alcohol; and it does not trigger schizophrenia.

Its cannabinoids, i.e. THC and CBD, also feature therapeutic properties and can act as painkillers, stimulate the appetite or regulate anxiety. The experts want all of these factors to be taken into account in the cannabis debate in Switzerland.

New legislation

In May 2017, Switzerland’s Green Party submitted an initiative before Parliament to legalise cannabis, with a law that would regulate the growth, sale and consumption of hemp.

They assert that this legislation would, among other things, provide a way to better control the quality of cannabis on the market and avoid the black market.

The initiative’s supporters believe that cannabis could bring in 300 to 600 million Swiss francs in tax revenues per year. That money could in turn be invested in prevention programmes.

Hanftheke

A shop that sells legal cannabis is set to open soon in Geneva. It would be the first “Hanftheke” in French-speaking Switzerland. The chain created by Swiss Cannabis already has 10 franchises in German-speaking Switzerland. The stores sell cannabis for smoking with low levels of THC, the psychoactive component, and high levels of CBD, the therapeutic chemical.

Their product selection also includes tea, pasta and hemp flour.

DR. FRED HOSSLER, VISUALS UNLIMITED /SCIENCE PHOTO LIBRARY

Unlocking the secrets of embryos

GENETICS EPFL researchers have identified the proteins that initiate the process of genomic expression during the first few hours of embryonic life in humans, mice, and probably all other placental mammals. These results could help scientists understand the cause of certain forms of sterility and lead to new treatments for muscular dystrophy. Their research was published in the journal Nature Genetics.

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IN SITU

HEALTH VALLEY

BENOÎT DUBUIS President of Inartis Foundation

The right ecosystem didn’t exist, so we decided to build it

We are living in a world of change. A changing world is a world of opportunities. In order to seize them, we need entrepreneurs who are capable of seeing the present and shaping the future. Some of us are finishing up or are still in the midst of our studies. Others have decided to dedicate their lives to their ideas. Many of us have stable jobs, but are we using our full potential?

In the Republic of Innovation, we are all entrepreneurs, whether we’re launching our own projects or playing a role in someone else’s idea. This same strong culture of widespread entrepreneurship allows us to explore an unlimited number of new leads and make so much progress.

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Bringing an idea to fruition is not just a matter of work. It’s the product of a community-wide effort rooted in open innovation. In our globalised world, time has sped up and distances have become smaller. Nowadays, knowledge and expertise are everywhere. This collective intelligence is part of our communities.

It allows us to achieve goals that would otherwise be impossible for us to reach individually.

Together, we can find solutions for the challenges we’re facing – starting with finding a purpose for our work on a local scale. After all, even systemic and planetary changes require modest action from ordinary people. In our Republic of Innovation, pooling our forces and growing through diversity allows us to give shape to our ideas, realise our goals, and respond to the challenges we’ve set for ourselves.

Our strength is the sum of the energies we represent divided by the number of goals we want to reach.

At Fondation Inartis, our role is to consolidate, generate, and direct this energy towards projects that will impact not only our future, but also our present and even our past experiences, all with the goal of transforming our reality. /

FURTHER READING

www.healthvalley.ch www.inartis.ch

DR

At the end of June, over 200 people travelled to Renens not just to inaugurate the UniverCité 2.0 site, but also to support a specific way of looking at the world and a new culture of innovation. Successful entrepreneurs, directors of prestigious universities, experienced manufacturers, and creative and passionate innovators attended the event together, all united around the same goal – working with a purpose and helping to create a Republic of Innovation. But wanting something isn’t enough. Our challenge is to build a world in which each person has the tools they need to achieve their own goals. Ideas are never fully formed when they are given voice for the very first time. They take shape as we start to work on them. All we need to do is take the first step and then move forward. It isn’t helpful to wait to have a clear idea – nothing gets done that way. What’s worse is that it means undermining our ability to create new ideas to fill out or even completely reshape the original plan.

The greatest successes come from testing ideas, developing them, and even failing. These tests should take place at designated sites for self-expression and experimentation. That is the kind of ecosystem that exists at Renens’ UniverCité. However, what we’ve created isn’t just a unique place that provides us with the crucial resources we need to get ideas to a lab bench. It’s much more than that.

This site is a meeting place for communities, including Hackuarium, MassChallenge, Be Curious, Made@UC, Digital Switzerland and Health Valley.

FOCUS

RARE DISEASES

TIME TO ACT

RARE DISEASES IN THE LIMELIGHT

/

Rare health disorders affect 7.2% of the Swiss population.

More research and treatments are needed. Patients and the medical profession are fighting to change that.

/ BY

JOËLLE CACHIN 11

“A

FOCUS

RARE DISEASES

s many people suffer from a rare dis- Rare diseases have slowly been gaining recognition ease as from diabetes in Switzerland. over the past 10 years or so in Europe. On the impeFor diabetes, you have specialists, as- tus of patient associations, national plans have been sociations and treatments available in mapped out to bring these isolated disorders on equal a flawlessly organised network. But that’s hardly the footing with more common diseases. In Switzerland, case for rare diseases.” Anne-Françoise Auberson, the rare diseases were the subject of a postulate submitted before Parliament in 2011. In president of ProRaris, fully 2014, the Swiss Federal Council under­s tands that the fight to FIGURES introduced a rare disease policy gain recognition for rare diseases as part of its Health 2020 stratis relentless. The umbrella oregy. Implementation was set for ganisation she heads criticises 2017 but is already two years bethe neglect which these diseases hind schedule. This does not frequently receive from the medMaximum number of people come as a surprise with all the ical community, and the real affected by a disease for it challenges involved, such as headache this represents. Not to be classified as “rare” opening expert centres, providenough patients with each dis/ ing patients with more informaease, or enough experts, scant tion and better care, raising research. “Whatever their disawareness, improving psychosoease, patients never have enough cial integration, financing reinformation,” she says. “It takes 5 search, etc. A long, bumpy road to 30 years to diagnose the disNumber of rare diseases lies ahead. ease and 95% of rare diseases in the world have no treatment available.”

5 out of 10,000 people

Between 6,000 and 8,000 /

580,000 Number of people with an orphan disease in Switzerland Source: Proraris and Swiss Federal Statistical Office 2017

UNDERSTANDING RARE DISEASES FROM DIAGNOSIS TO TREATMENT A disease is classified as rare if it affects less than one out of 2,000 people worldwide. Between 6,000 and 8,000 currently exist. Some of the more widely known ones include cystic fibrosis, forms of amyotrophy and certain forms of leukaemia. Others are more obscure. “Genetics makes you a powerful human being,” says Andrea SupertiFurga, chief of the Genetic Medicine Service at the Lausanne University Hospital (CHUV). “But all it takes is just a tiny little change in letter in a DNA sequence to destroy you on the spot. A small cardiac or pulmonary malformation or lack of a single enzyme can cause irreparable harm.” Eighty percent of rare diseases are genetic. They can be chronic, degenerative and even fatal.

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One of the first obstacles is to identify the disease accurately. Having to go from doctor to doctor, waiting for a relevant diagnosis, is often due to the lack of expertise. “Patients describe their often long list of symptoms that are not directly related to each other,” Dr Superti-Furga says. “That makes diagnosis long and complex. It requires a special form of sensitivity to identify a rare disease.”

When they can’t, doctors address each symptom separately, relieving pain and treating deficiencies. “General practitioners often take a long time before referring patients to the right specialist, sometimes due to a lack of information, sometimes out of pride,” the geneticist says. Doctors sometimes even diagnose mental issues.

“Psychosomatic problems are indeed common, but it’s awful for a person truly affected by a rare organic disease to be labelled with a psychosis.”

An accurate diagnosis always comes as a relief. “A medical explanation is a way of finding out where the real

FOCUS

RARE DISEASES

“FUNDING FOR RESEARCH IS NOT ENOUGH” Rare diseases are the ones left behind by medical research.

It sometimes takes years before treatments are developed.

Explanations with the geneticist Andrea Superti-Furga.

BASED ON AN INTERVIEW WITH

I

JOËLLE CACHIN

in vivo Does identifying an unknown disease happen often in a geneticist’s lifetime? andrea superti-furga It’s not all that rare. Doctors in paediatrics often deal with hereditary diseases. A considerable number of patients have a condition that hasn’t been identified. However, when you discover similar symptoms in several people, it’s often due to the same genetic mutation. We’ve become very good at discovering sick genes. But finding therapies is, oddly, more complicated.

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was identified in 1995.

The first clinical trials for a therapeutic drug were tested on adult patients in 2015. The positive result showed increased growth, but it took 20 years to develop that treatment!

But the time gap is much shorter for more common diseases... asf Of course. There’s what the pharmaceutical industry calls “blockbusters”. A new aspirin, allergy drug, treatment for a certain type of cancer. For example, someone gets cancer, and it doesn’t look good. Six months to two years later, a new drug hits the market targeting that exact type of mutation.

Precision medicine in oncology works well and pays very well.

Industries are amazingly good at exploiting that. iv

Why is that?

It’s about getting funding for research that involves only a handful of people. The Swiss National Science Foundation supports projects, but aid is hard to come by. Foundations that back research for rare diseases also exist, but it’s not enough.

iv

asf

Once a research project is accepted and financed, how long does it take before a treatment is found? asf The time gap between discovery of a disease and access to a treatment that works is very long.

The gene that causes dwarfism iv

ANDREA SUPERTI-FURGA IS CHIEF OF THE GENETIC MEDICINE SERVICE AT THE LAUSANNE UNIVERSITY HOSPITAL (CHUV).

GILLES WEBER

n the spring of 2016, a team of scientists in Lausanne, which included Andrea SupertiFurga, discovered a new disease that causes a severe developmental delay and bone growth issues. The scientist says he is confronted with genetic abnormalities every day. The hard part is understanding how they are expressed to come up with a treatment.

FOCUS

RARE DISEASES

blame should go. It triggers the psychological process that eventually leads to acceptance of their illness,” the physician says. In the 1950s, genetic disability was sometimes attributed to “the father who was drunk when the child was conceived. These shameful explanations are still floating around in the back of people’s minds.”

Medication used to treat rare diseases is also rare, as demand is low. To stimulate the market and research, the Orphan Drug Act passed in the United States in 1983 introduced incentives, offering “orphan” drug manufacturers tax breaks and a multiyear monopoly. In Switzerland, similar advantages are granted to pharmaceutical companies that develop these drugs. For example, the process is simplified and less costly to bring drugs to market, and less scientific red tape needs to be submitted to Swissmedic, the Swiss medical watchdog that monitors the market for therapeutic products.

THE DEBATE RAGES OVER THE PRICE OF MEDICINE EXPENSIVE TO DEVELOP, HARD TO REIMBURSE “Orphan drugs used to treat rare diseases are extremely expensive, and that’s not going to change. What we have to do is find a human way of reimbursing them.” Anne-Françoise Auberson blames insurance companies that baulk at the idea of reimbursing costly treatments.

HALF OF THOSE AFFECTED

BY A RARE DISEASE ARE CHILDREN Rare diseases are part of everyday life in paediatric units. And they come with a unique set of needs and challenges. “Drugs used to treat rare diseases can generally be administered starting at age 12, 16 or even 18,” says Michaël Hofer, senior physician in charge of the paediatric immunology and rheumatology unit in French-speaking Switzerland. “But there is not enough specialised literature to allow us to prescribe certain drugs for our young patients.

So we have to negotiate with insurance companies to get them to reimburse the treatment.”

Another challenge is the transition of young patients into adult patients. “Teen years are a difficult time.

At this age, patients often reject their illness or refuse to take their treatment. They hope that by not thinking about it, the disease will go away,” the paediatrician says. Dr Hofer organises consultations with the adult specialist to make sure the transition goes as smoothly as possible. “We do that to build the patient’s trust in the new doctor and make sure the medical records are transferred properly.” An international team has recently devised a transition checklist aimed at the different paediatric services to improve these transfers. For example, as of age 12, the doctor is advised to discuss the disease with the patient to make sure they understand everything involved.

A LONG STRUGGLE TO GAIN RECOGNITION

Scientists and doctors have been talking about rare diseases for only the past 20 years or so.

These neglected diseases have gone from a total lack of expertise to the introduction of a national concept, and are slowly carving out a place for themselves in Swiss medicine and healthcare.

But the price of orphan drugs is hotly debated. Interpharma, the organisation that represents Swiss pharmaceutical companies, says that the sales price is high because production costs are high. That assertion is based on a study by the Office of Health Economics, a British healthcare research and consultancy institute, estimating it at 1.3 billion Swiss francs.

Others in the industry say that is much too high.

“That figure is hugely exaggerated, especially if you factor in the incentives granted with the status of orphan drug,” says Andreas Schiesser, head of the drug project at the organisation Santésuisse. “Prices aren’t based on research costs but on expected benefits of the drug for patients.”

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Orphanet website established in France. First online encyclopaedia of diseases and specialists.

Switzerland joins the Orphanet consortium and begins classifying expert centres in the country.

1997

2001

ProRaris founded, an umbrella organisation for patients.

2010

RARE DISEASES

JEANNE MARTEL

FOCUS

“MY DISABILITY HAS MADE ME WHO I AM” Ségoleine Schmutz was born with spondyloperipheral dysplasia.

One of the consequences of this genetic disorder is abnormally short stature. Living with this disability is a daily struggle.

“When the friends of my 6-year old daughter ask me about my height, I tell them that I didn’t eat enough soup when I was their age!” At age 43, Ségoleine Schmutz is 1.32 metres tall. She talks about her physical appearance with humour and resilience. “You never totally come to terms with the way others look at you.

It’s hard on those days when you’re tired. It’s easier when your mood is brighter.” When she was born, the Vaud native suffered from malformations in her legs and feet. “I was first diagnosed with achondroplasia, a bone growth disorder that is the most common cause of dwarfism. But I never felt comfortable with that label because my physical features didn’t fit the description.”

In 2003, a more in-depth genetic test came up with a new diagnosis, spondyloperipheral dysplasia, a genetic disease that affects less than one person out of a million. “I knew that it wouldn’t change the treatment, because there is none, but it helped me accept my disability.”

Eleven years ago, Ségoleine Schmutz and her husband were confronted with the dilemma of pregnancy. “I had a 50% chance of passing on the gene responsible for my illness to my child.” The decision wasn’t an easy one, but we went ahead with the adventure of parenthood despite it all.”

In 2006, she gave birth to a healthy baby boy. The couple then adopted a little girl to avoid “tempting fate a second time”.

Today, Ségoleine Schmutz works as a medical advisor with a health insurance organisation. She has had to adapt her profession to her disability, as patient consultations are physically too exhausting. Just one of many adjustments. “Store shelves, supermarket trolleys, ATMs. Nothing is designed for me. But with some resourcefulness, some humour and a stool, I can do it!”

First rare disease awareness day held in Switzerland. The same year, the Swiss Federal Supreme Court ruled in favour of a health insurer in its decision not to reimburse a patient with Pompe disease. Politicians get involved in the issue. Ruth Humbolt from the Christian Democratic People’s Party submitted a postulate before Parliament.

The university hospitals in Geneva and Lausanne (HUG-CHUV) launch a strategy spanning French-speaking Switzerland with the website for rare diseases. The two hospitals evolve into expert centres.

2010

2013

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In 2015, two students set up an organisation for people of short stature as part of their graduation project.

“These young women prompted the creation of an organisation for persons of short stature in Frenchspeaking Switzerland, in May 2016.”

Ségoleine Schmutz is president. “By sharing with parents of children affected by short stature, I’m becoming aware of everything I myself have accomplished. Despite the arthritis and pain, I wouldn’t change my situation for anything in the world. My disability has made me who I am.”

The Ice Bucket Challenge contributed to raising awareness about amyotrophic lateral sclerosis (ALS).

A number of celebrities participated in the event widely covered on social media, raising $100 million.

2014

Deadline set for the implementation of the National Plan for rare diseases. The project is running two years behind schedule. A national coordination team has been set up to address the situation.

2017

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RARE DISEASES

Olivier Menzel, president of Blackswan, a foundation specialised in research on rare diseases, agrees: “The most costly stage in developing a new drug is the clinical trials. But with rare diseases, there are so few patients to start with that costs are automatically lower.”

Meanwhile, Interpharma points out that the 1.3 billion Swiss francs is an average, and stark differences exist depending on drug indications. But the organisation doesn’t provide any specific figures for orphan drugs. Menzel says, “We also have to be careful not to put too many restrictions on manufacturers by capping prices. Firms should continue investing in research for rare diseases. But ever yone, both manufacturers and insurance companies, should play their part by setting reasonable margins.”

THE CHALLENGE OF REIMBURSEMENT With such high prices, orphan drugs that are not included on the positive list (liste des spécialités or LS), established by the Swiss Federal Office of Public Health, are not systematically reimbursed by health insurance (see infographic p. 17). Research on rare diseases, being limited in terms of patients and specialists, does not always meet the strict criteria for inclusion. Health insurers refer to the criteria set out in Switzerland’s health insurance ordinance (OAMal) to decide whether to reimburse a drug. The treatment must be effective, appropriate and economical. “Unfortunately, when pharmas raise the price of a drug, some insurance companies refuse to reimburse it, but these treatments are often vital for patients,” Anne-Françoise Auberson laments.

Even health insurance providers realise how complex reimbursement is. “Some special cases are tough to assess,” Andreas Schiesser says. “When a disease is not fatal, and the pain and inconvenience are relative, where should we draw the line? Reimbursing overpriced treatments is not fair for other patients.”

Meanwhile, health insurers readily shift the blame to drug manufacturers. “Take the case of the drug used to treat porphyria (a rare metabolic disorder, see personal account p. 18). The Australian laboratory that developed the treatment didn’t even file the approval application with Swissmedic, which would simplify the procedure for reimbursement,” Santésuisse says.

Reforms to the health insurance ordinance, in effect since March 2017, have improved the care provided on a case-by-case basis, the president of ProRaris says. If a request comes in from the general practitioner, the insurance company has to consult its medical advisor and issue a response within two weeks.

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EXAMPLES OF RARE DISEASES CYSTIC FIBROSIS Prevalence 1/8,000 to 1/10,000 depending on the country Cause Genetic Symptoms Digestive and respiratory issues, abnormal secretions and infections in the bronchial tubes and pancreas Treatment No cure

MARFAN SYNDROME Prevalence 1 to 5/10,000 depending on the country Cause Inadequate production of fibrillin, a protein found in connective tissue Symptoms Gradual dilation of the aorta and risk of rupture, heart failure, stretch marks, ocular complications Treatment Multidisciplinary care

BRITTLE BONE DISEASE Prevalence 1/10,000 to 1/20,000 depending on the country Cause Genetic Symptoms Fragile bones and sometimes bone deformation, fractures Treatment Orthopaedics and physiotherapy

AMYOTROPHIC LATERAL SCLEROSIS (ALS) Prevalence 1/20,000 Cause Genetic Symptoms Gradual muscle paralysis, deterioration of motor neurons, respiratory failure Treatment No cure, symptom management and palliative care

STILL’S DISEASE IN CHILDREN Prevalence 1/20,000 Cause Unknown, genetic factors suggested Symptoms Chronic fevers, early onset of arthritis, systemic inflammations Treatment Mainly anti-inflammatory medicine

ATRESIA OF BILE DUCTS IN CHILDREN Prevalence 1 to 9/100,000 depending on the country Cause Unknown Symptoms Obstruction of bile flow in infants, which leads to cirrhosis within a few months Treatment Surgery or liver transplant

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0 1 Research

The research phase takes place in an independent, university or pharma­ceutical laboratory. The active substance is tested on animals (preclinical phase), then healthy humans (clinical phase I), a few sick people (clinical phase II) and finally a broader sample of patients (clinical phase III).

RARE DISEASES

0 5

0 5

Drug included in the LS Reimbursement by basic national health insurance (LAMal) is guaranteed. The FOPH negotiates with insurance companies and manufacturers, and compares prices applied abroad and prices of similar drugs in Switzerland before setting the maximum amount that can be reimbursed.

Drug not included in the LS Reimbursement is on a case-bycase basis according to three criteria set by the health insurance ordinance (OAMal): the drug’s effectiveness, appropriateness and cost-efficiency. A medical advisor reviews each case and issues an opinion.

Reimbursement

GENESIS OF AN ORPHAN DRUG Before a patient can take them, drugs pass through a series of phases of testing and administrative approval.

0 2 Production and commercialisation The final product is prepared for release on the market. Once commercialised, additional clinical trials and a monitoring phase are planned (clinical phase IV).

The Swiss Federal Office of Public Health (FOPH) decides whether a drug is included in the positive list (liste des spécialités or LS) based on recommendations from the Federal Drug Commission.

0 4

Approval

0 3

The manufacturer files an application with the Swiss agency for therapeutic products (Swissmedic) to prove the drug is safe and effective. The product is then approved or not.

Some laboratories do not file an application.

They are still authorised to sell their drugs when no alternative therapy exists.

Patients associations Different patients associations and the umbrella organisation ProRaris push for progress at every level of the drug manufacturing chain. They encourage laboratories and manufacturers to do research in rare diseases, despite their low profitability. They

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work with Swissmedic and the FOPH to simplify the approval process to bring new drugs to market and get orphan drugs on the LS. They negotiate reimbursements with insurance companies and day-to-day support for patients.

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RARE DISEASES

Nadia Coutellier suffers from an extremely rare disease, erythropoietic protoporphyria (EPP), a genetic intolerance to sunlight.

Costly treatments exist, but reimbursement is not guaranteed.

Nadia Coutellier’s disease was diagnosed when she was five.

“I remember being on a family outing on the train to Morges.

My feet started swelling so much that they wouldn’t fit into my shoes. I was screaming and hanging onto my dad, but even the contact with his skin hurt me. I was burning up.”

Now 26, the young woman works as a medical assistant and shares her memories with emotion. She was deprived of her childhood and adolescence, she says, because of the mocking, restrictions and physical

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pain she had to endure because of her illness, erythropoietic protoporphyria (EPP). Less than 80 patients in Switzerland have EPP. In some cases, just a few minutes of even indirect exposure to light leaves burns that can last up to four or five days.

“When I found out that research was under way to develop a treatment, that someone was interested in my disease, it was magic.” In 2012, the Australian laboratory Clinuvel launched a test phase for a unique drug. Nadia takes Scenesse, delivered via a subcutaneous implant that is changed every two months. Results have been spectacular. “Now I can work, go on bike rides, ski, without pain every day. Live like a normal person. The only thing that influences my decision to do something is my determination, not my disease.”

The drug was officially launched on the market in early 2016 at 19,000 Swiss francs a dose. Nadia’s health insurance offered to reimburse 7,000 Swiss francs. “I told them that basically meant I was trapped. I sent letters, I personally contacted the medical advisor who supported me. After months of negotiations and media coverage, Nadia won her case. The celebration was short-lived. In late 2016, her health insurance informed her that it would stop reimbursing her treatment. Another struggle, another victory. But the threat is always hanging over her head. When Nadia talks about it, her voice trembles, “I can’t imagine my future without that drug. That would send me back to the nightmare of my old life, deprive me of a future. Keep me from being myself.”

FRANÇOIS WAVRE / LUNDI13

“LIGHT BURNS MY SKIN”

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RARE DISEASES

“That’s progress, but treatment differs between cantons, and it’s still hard to find experts capable of giving a well-informed opinion,” Auberson points out.

STRATEGIC NATIONAL PLAN WHERE DOCTORS, PATIENTS AND POLICY COME TOGETHER “Patients have taken things into their own hands to come out of their isolation and demand rights,” Anne-Françoise Auberson says. “Rare diseases have been brought to the attention of policymakers thanks to intense lobbying efforts.” As a result, the Federal Council came out with a plan to implement the national concept for rare diseases in 2015. The backbone of the project is the implementation of expert centres. These hubs located throughout Switzerland are to be set up by type of disease to pool the right expertise and enhance synergies. “We want to create teams of different specialists, cardiologists, lung specialists, psychologists and especially geneticists,” says Loredana D’Amato Sizonenko, coordinator of the Orphanet website in Switzerland, a partner in implementing the national policy (see inset). “Some organised care is already available. Now we just have to get all those involved to agree so that this expertise is distributed strategically.”

DIFFERENT INTERESTS INVOLVED Under the supervision of the Swiss Federal Office of Public Health, a wide range of organisations are part of the implementation of this national policy: the Swiss Academy of Medical Sciences, university hospitals, the board of healthcare directors representing cantons, the Swiss National Science Foundation, the umbrella organisation representing patients ProRaris and the platform Orphanet.

“The implementation of the concept is falling behind schedule,” Auberson says. “Lots of interests are at play. ProRaris, which defends patients, is just one of the many sides. I hope its voice will be heard.”

The associate medical director of CHUV, Jean-Blaise Wasserfallen, is confident and believes in the network set up by the university hospitals in French-speaking Switzerland. In 2013, the CHUV and Geneva Univer19

A WEBSITE FOR PATIENTS AND DOCTORS Some 6,000 health disorders are listed on the information website on rare diseases for Frenchspeaking Switzerland (www.info-maladies-rares. ch). This platform set up in 2013 by CHUV and HUG provides useful information including the care services available in the region for each disease. Patients and specialists can also seek assistance using the website’s hotline. Loredana D’Amato Sizonenko is in charge of the platform for HUG and covers its coordination aspect. “We work with specialists and encourage them to work together. When collecting information, we sometimes realise that two areas of expertise are working on the same issue without talking to each other. The idea is to improve collaboration and make their work visible to others.” The website for French-speaking Switzerland collaborates closely with the Swiss branch of Orphanet, an international platform that provides useful information about managing rare diseases in about 40 countries, including Switzerland.

sity Hospitals (HUG) implemented a joint strategy, which led to the creation of a website on rare diseases (see inset). “The point of this collaboration was to bring down the barriers that prevent doctors, patients and the public from having access to the information they need.”

The associate medical director is sure that progress will be made in the region. “We compare our different departments based on specific, quantitative criteria: how many patients are currently being treated, what expertise is involved on both sides, are we publishing in scientific journals on the subject, and so on.” For example, in 2013 CHUV opened a centre specialised in molecular diseases, recognised, along with the centre in Zurich, as highly specialised medicine. It is gaining recognition as a provider of expertise in the area.

“We are supposed to proceed based on the gentlemen’s agreement for the network of expert centres in Switzerland, i.e. based on the expertise already available at each hospital. I can’t wait to see how that will work out in practice.” The idea is for these diseases gradually to be rare only in terms of prevalence but not neglected in terms of care and treatment. ⁄

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BASED ON AN INTERVIEW WITH

SOPHIE GAITZSCH

RARE DISEASES

INTERVIEW “DRUG PRICES SHOULD BE SET BASED ON THEIR USEFULNESS”

The Swiss physician Christian Kind says pharmaceutical companies should be held more accountable.

Are rare diseases being overlooked by our healthcare system?

Treatments for rare diseases, if they exist, are often very expensive. Who should pay?

in vivo

iv

It’s hard to think of rare diseases as a single category. The only thing they have in common is that they’re rare. It’s a fundamental problem. Some rare conditions are not being researched, and patients are neglected, while others are well known and treated properly because they interest pharmaceutical companies and can advance research. That applies for example to certain childhood cancers for which the industry is getting involved. It’s easy to draw support and collect funds to do something about these tragedies that affect our youngest.

Meanwhile, we mustn’t forget that some diseases that are not rare, such as cerebral palsy or Down syndrome [editor’s note: a chromosomal abnormality], raise questions for which we don’t have the right answers, but they don’t attract a lot of attention. Rare or not, diseases that don’t have their place in public awareness often end up overlooked.

ck These days, the reasoning goes as follows: if the treatment is proven effective, if it’s the most economical option available on the market, and if the person needs it, our national health insurance should cover it.

christian kind

Biography Christian Kind chaired the Central Ethics Committee of the Swiss Academy of Medical Sciences from 2009 to 2016.

A professor of paediatrics, he held the position of physician-in-chief at the Children’s Hospital of Eastern Switzerland in St. Gallen until 2012. Dr Kind co-authored the book “Sélectionner ou accepter?” on prenatal and preimplantation diagnosis, published in 2010.

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iv

How much should the community pay?

In Switzerland, solidarity is part of our mindset.

And it’s strong. People think that the community should also get involved financially for expensive treatments. ck

But some patients are in a constant battle with their insurance company for their treatment to be recognised. What should we do about that?

iv

ck Different health insurers have different rules for similar situations. From that point of view, a single health insurer makes sense to create a fairer system. But I think the main point in this issue lies in the healthcare industry. The prices charged for treatments are only partially justified by development costs. These days, pharmaceutical companies should be held more accountable.

How can we get pharmaceutical companies to change their attitude?

iv

ck Ethics experts and philosophers think an international model should be created in which drug prices are set based on their usefulness, not on their development costs. In that kind of system, pharmaceutical companies would no longer be free to set their prices as they do today.

The current system is not transparent. But if we compare prices charged in other countries, we

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RARE DISEASES

DR

Christian Kind chaired the Swiss Central Ethics Committee for seven years.

see that the industry in Switzerland has a huge amount of leeway. The idea is obviously hard to implement and for now remains theoretical, but would create a model that would work better in the long term. New drugs hit the market every day at exorbitant prices, and pharmaceutical companies are making ridiculous amounts of money. The situation can’t last.

How could the money invested be used differently to make the development of these drugs more profitable?

iv

ck The money used to treat one person with a rare disease could theoretically be used to cover the expenses of many other patients with a similar illness with cheaper treatments. In a case involving the treatment of Pompe disease [editor’s note: a genetic disorder that causes progressive muscle weakness and respiratory problems] in 2010, the Swiss Federal Supreme Court ruled that the amount of money needed to treat one person with this disease for a limited time could finance a better treatment for many patients suffering from different types of chronic respiratory conditions.

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Have you noted a positive change in the perception of rare diseases?

iv

ck They’re talked about a lot more than they used to be. And that’s a good thing. However, patients still often face an uphill battle before they get an accurate diagnosis. I hope that the development of information platforms, planned under Switzerland’s concept of rare diseases (see p. 19), will improve the situation and that patients will be able to find the best specialist for them, and faster. I’m more sceptical about the lack of research on some diseases. The industry goes where the profits are, and that’ll be hard to change. ⁄

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“For healthcare staff to show empathy for patients, they have to be shown empathy themselves.”

SERGE TISSERON

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INTERVIEW

SERGE TISSERON The psychiatrist and psychoanalyst offered

In Vivo his insights about the role of empathy in hospitals. In our day and age, the fast-pace development of highly specialised medicine is bound to dehumanise patient care.

INTERVIEW: FABIENNE PINI SCHORDERET PHOTO: JEAN-LUC BERTINI / PASCO AND CO

“Empathy’s enemy is the desire to control everything” Are you pessimistic about empathy? SERGE TISSERON IV CHUV has closely studied the issue of dehumanisation of medical care. What do I’m against bad interpretations of empathy. For example, sayyou think? ST The risk for the patient is not ing that empathy means putting yourself in someone else’s place. Let’s be modest, it’s simply not possible! And would being listened to, understood or taken into we even want that? If so, I can’t help my patients. I want consideration, or of being treated like a liver to show that empathy is much more complex than we imor a heart, which has been accentuated with agine. Although it can be a quality focused on altruism the fragmentation of disciplines. Patients often and helpfulness, it can also be a weapon of manipulafeel they’re dealing with medical professionals tion. Empathy is a mental construct. I try to understand who act like mechanics repairing an organ. We someone else’s situation based on my own interpretahave a long way to go to develop more integrated tion and personal history. medicine. Some discoveries support this shift. For example, the fact that our gut flora affects brain function might help alter that concept. It’s also imIV As a patient, what type of care provider would portant to explain to students that anxiety amplifies you like to have? ST A care provider that keeps me somatic problems, and vice versa. informed about the progression of my illness by giving me their time to talk about it. Progress has been made in this area, but the truth is too often anIV We hear more and more about personalised mednounced to patients as if it’s a burden that medical icine. What do you think of steps taken by Google staff want to get rid of. The patient won’t necesand Apple to develop algorithms to better detect dissarily be less traumatised by hearing the truth. ease and improve care for patients? ST It’s both a wonI’d also like medical professionals to be punctuderful opportunity and a terrible danger. For example, if al. It creates anxiety when they’re late for an retinitis pigmentosa can be diagnosed with a smartphone, appointment. I can’t trust someone with the action can be taken much earlier. The problem will come treatment if I can’t trust them to be on time. when artificial intelligence can diagnose health issues and IN VIVO

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INTERVIEW

cover. People have the right to decide not to suggest customised treatment in the place of doctors. “Personbe treated. And doctors often have trouble alised medicine”, in referring to adapting patient treatment to accepting that. Some doctors have a probtheir physiological or biological characteristics, will lead to lem, not with disease but with recovery. huge misunderstandings. People are much more than just They’ve forgotten that the doctor treats, but their biological characteristics! it’s the patient who recovers. And there are patients who don’t want to recover. And that’s their right. Medical studies exalt the curative potential of doctors. Students go through their education with the idea that, with the help of progress, they will eventually be able to cure anything. That may be the case for diseases, but not patients!

“THE DOCTOR TREATS, BUT IT’S THE PATIENT WHO RECOVERS.”

We must teach medical students that some patients are truly suffering without objective causes based on our current state of knowledge. Empathy means acknowledging a person’s suffering beyond what we can do for them. Doctors and healthcare providers must also be aware of their own limitations and be modest when it comes to the services they can provide. Some patients need to put the effectiveness of the treatment into perspective to be able to accept it. We have to develop more therapeutic education and hold patients accountable about the care they are given.

I see two possible outcomes. Either governments and hospitals will decide that there are fewer staff, doctors and care providers; or, the other point of view is that, through technology, doctors will be able to IV Can the patient-actor model, as a counter-balconcentrate more on the relational side of care and ance, prevent care from being dehumanised? ST better integrate the psychological implications of Empathy means acknowledging that we’re reliable huthe illness. We can’t have a machine spitting man professionals and that the other huout a piece of paper that says “when you reman, the patient, is as reliable as we are, turn home, here is the advice to follow”. No BIOGRAPHY and we are in it together to deal with the The French one will follow it. same disease. Empathy is based on trust, psychiatrist and mutual exchange and collaboration with psychoanalyst the patient. Doctors are not the commandIV An American study published in 2009 Serge Tisseron is ers of a treatment ship with a patient loadshowed that empathy in medical students also a researcher ed like cargo. diminished drastically in the third year of with the Centre medicine, precisely when they come into for Research in Psychoanalcontact with patients. What do you think ysis, Medicine IV How can health professionals become of the way doctors and healthcare profes- and Society at more empathetic? ST By teaching them to sionals are trained? ST In medicine, the Paris Diderot recognize their negative emotions and express them. Patients can be difficult. We main enemy of empathy is the desire to con- University 7. His work focuses on need to set up support groups and departtrol everything and be all-powerful. It’s the three main areas: ment meetings so that health professionals idea of having total control over care path- secrets due to can talk about their negative experiences. ways, controlling patients so that they re- trauma, relations with image and the impact of new technology on relationships with others.

He is also a comic book artist and illustrator for children’s books.

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INTERVIEW

If they can’t do that they feel guilty, not for feel supported. This involves reinstating the importance of the feeling of belonging to a group, in order to fight burnout not doing enough for a patient, but for reand recognise what makes each profession different. For senting patients for not recovering. That example, I can’t believe that training for healthcare providpartly explains why healthcare professionals ers is perceived as training for medical sub-tasks. It doesn’t burn out. They end up resenting patients, work that way! There’s not a more prestigious professionwear themselves out trying to treat them, al category, i.e. doctors, and then people below them who not so that they recover, but to avoid being work with illness, i.e. nursing staff. confronted with the fact that they’re tired of them. Sometimes we have to accept that we’d rather the patient died. Support systems IV What should we do to make sure health professionwould help bring out shameful emotions that als succeed in the future? ST Require future doctors to doctors feel and work with them. do six months of nurse training that is integrated into their university programme. And during that training time, they should work as a team, espeIV Have you thought of other ways of cially with nurses. Then, in the field, fighting the increase in burnout among everyone at all levels needs to undermedical professionals? ST Healthcare READ stand that they can’t give empathy if providers often burn out due to a conflict “Empathie et manipulations, les pièges de la they’re not getting any themselves. Emwith empathy. It’s when their working compassion”, Serge Tissepathy isn’t something you demand of conditions force them to choose between ron, Albin Michel, 2017 those below you, “Be empathetic so that empathy for their patients and empathy “Le jour où mon robot patients recover”. It doesn’t work that for their colleagues or the institution. m’aimera, vers l’empathie way! Showing empathy as part of the Empathy isn’t just an individual thing, artificielle”, Serge Tissestructure of an organisation means beit’s a collective responsibility. It some- ron, Albin Michel, 2015 ing concerned about the well-being of times requires major institutional chang- “Fragments d’une psychanalyse empathique”, your team. Bosses who have teams that es that free up time for patients.

Serge Tisseron, Albin work well are often generous and posiMichel, 2013 tive, and listen to them.

These days, we should avoid staff restrictions, make sure they’re paid properly TO KNOW MORE Discover the empathy and recognise the value in the work ship model developed IV If anything was possible, what healthcare providers do, because we keep by Serge Tisseron on would you do? ST I would develop asking more of them, and they end up www.invivomagazine.com meeting times where everyone can talk burning out. I also think that using exoabout their struggles in an environment skeletons attached to the belt to help of mutual kindness. A team can’t functhem lift heavy loads would be useful. We should start tion by only showing concern for patients’ by using them in hospitals to lift or turn over bedridden well-being. It also has to think about its own patients. well-being and be at peace with itself. ⁄ In other words, for different levels of staff to show empathy for patients, they have to be shown empathy themselves. Care was traditionally administered by nuns who didn’t look for recognition from their supervisor, but from God, which they found in prayer. Today, staff are not part of the church and need their supervisors to recognise and value their work, even in a time of economic austerity! We also need to make recreational time available within the department where people can get together and where they

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TEXT: BERTRAND TAPPY ILLUSTRATION: PAWEŁ JOŃCA FOR “IN VIVO”

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TRENDS

AUTOPSIES ARE LONG FOR THIS WORLD

Despite improved imaging techniques, dissecting the human body is still standard practice for determining the exact cause of death.

B

eneath a white sheet, a lifeless body lies atop a stainless steel table in a refrigerated room bathed in harsh light. While we might all be able to picture an autopsy room, the general public is most often unaware of what actually happens inside.

First, a word to our more sensitive readers – the goal of this article is not to give a detailed description of every step in an autopsy, which in fact hasn’t changed much since the anatomist André Vésale’s days in the sixteenth century. The process still consists of removing the organs, “fixing” them in an organ bath, and analysing them one by one. Instead, we will consider whether or not pathologists and medical examiners will still be using autopsies fifteen to twenty years from now.

There are currently three reasons why a deceased person ends up going beneath

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FINDINGS AFTER THREE TO SIX MONTHS You might think the results from an autopsy come in a few minutes after the procedure is complete – or even instantly, like we see on television.

This is false. In forensic pathology, a complete report includes the results from the CAT scan, external exam, autopsy, MRI, angioscan, and histology and toxicology testing (see In Vivo no. 1). Between the time it takes to perform the tests, write the report, and have the findings checked by a colleague, the results aren’t ready for another three to six months.

The patient’s body is examined for no more than 24 hours so it can be returned to the family as soon as possible.

a doctor’s scalpel one last time. In forensic pathology, the public prosecutor can request an autopsy if the cause of death is suspicious or if an external cause of death is proven or cannot be ruled out. In pathology, a patient’s physician or loved ones can request an autopsy for the purposes of scientific research or to conduct more in-depth investigations into the natural cause of death (following a hospital stay, for example). Finally, in anatomy, students can perform autopsies on individuals who had elected to donate their bodies to science for training purposes.

In all three cases, it appears autopsies will be around for a long time to come. But the question remains – why? According to Silke Grabherr, chief of the Swiss Francophone University Centre of Forensic Pathology, the technique is becoming increasingly common. “If you really want to know what someone died from, you have to open them up. Imaging techniques can answer a lot of questions, but in many cases, they can’t solve everything. For example, if someone has drowned, we can clearly see liquid in their lungs. However, it could be blood, water, or something else. And in the case of strangulation, we can see damage

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TRENDS

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TRENDS

to the bones and cartilage around the neck, but a lot of the small haemorrhages in the muscles can only be seen in an autopsy. In the last few years, the number of autopsies has only gone up. I can count the number of weekends I’ve been on call and not had to perform an autopsy on one hand!”

At the University Institute of Pathology, the situation is slightly different. “If you think about it in terms of supply and demand, there’s no doubt autopsies will continue to be used in forensic pathology for a long time to come,” says Samuel Rotman, a physician at the University Institute of Pathology at CHUV (Lausanne University Hospital). “The law still requires a forensic autopsy to be performed, and a patient’s family cannot refuse a request from the authorities.

For us, the issue is more complicated.

In addition to performing medical autopsies, we also work a lot with living patients. Nearly 80% of our work consists of testing samples taken from hospitalised patients or even patients who are undergoing operations. We do an autopsy when the family or physician wants to know more about the cause of death of their patient, partner, child, grandmother, etc.”

The request to perform an autopsy is a difficult process that is often hindered by stereotypes perpetuated by television.

“People often refuse to consent to a medical autopsy because they think they won’t be able to see the body again or that it will be completely unrecognisable. That’s not true. We take great pride in treating the body with the utmost respect. For example, there’s a very specific way to expose the brain without leaving any visible scars, even when the patient doesn’t have hair. Autopsy technicians work with expert precision day

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COMPARING PRE- AND POST-MORTEM EXAMS In order to better understand the family’s needs after a loved one has passed away, Geneva University Hospital (HUG) has just started a largescale analysis.

The study, which includes the Forensic Medicine, A&E, Radiology, and Pathology Departments, will also allow the hospital to assess the effectiveness of patient in-take exams by comparing them to the results of post-mortem exams. Indeed, after death, a person’s body can be irradiated to a much higher extent, which will always yield better quality images.

in and day out to ensure the scars will be as little visible as possible.”

Another common misconception is the idea that the medical examiner works alone. “Of course, that’s completely false,” says the CHUV pathologist. “Our pathology unit includes laboratory technicians who can expertly operate our specialised technical equipment. They can do everything from standard histologies [editor’s note: cell examinations] to molecular techniques used in genomic analysis [editor’s note: testing cellular DNA], which is necessary for studying resistance mechanisms in tumours. This specialised personnel plays a key role in reaching a diagnosis.”

Once the autopsy is performed, the findings are sent to a physician selected by the family. The results are sometimes surprising. “The elderly are rarely suffering from a single pathology,” explains Samuel Rotman. “If a patient is said to have died from cardiac and respiratory arrest following a long illness, that doesn’t tell you much. Did the prescribed medicine have an effect? Were the diagnoses correct? A medical autopsy can help answer those questions. Even though they can give families answers and help hospitals improve, there are fewer and fewer autopsies being performed in Europe. This is not due to technological progress, but rather because autopsies cost the institution a lot of money and are sometimes subject to misconceptions.”

However, CHUV has been the exception to this trend for the past three years because it helped implement our project. Nevertheless, there is still much work that needs to be done if we want to get rid of the stereotypes. If they don’t want to put an end to autopsies, maybe CSI should stop showing them altogether! ⁄

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PROSPECTING

WHITE COATS AND GREY HAIR

LYNN JOHNSON, MAHN CENTER FOR ARCHIVES AND SPECIAL COLLECTIONS, OHIO UNIVERSITY LIBRARIES

MORE DOCTORS ARE CONTINUING TO PRACTISE PAST THE AGE OF 65 IN SWITZERLAND. ARE PENSIONERS THE ANSWER TO THE COUNTRY’S DOCTOR SHORTAGE? ACCORDING TO SPECIALISTS, IT MIGHT BE ONE OPTION, BUT IT’S NOT THE SOLUTION.

TEXT PATRICIA MICHAUD

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The American paediatrician Leila Denmark is a legendary figure in medicine. Born in 1898, she continued practising until she was 103. She is also known for contributing to the development of the whooping cough vaccine.

Dr Denmark died in 2012 at the age of 114.

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hen he began studying medicine, Roger had his career all planned out. “I’d work as much as possible for thirty years, then retire early to enjoy a hard-won salary.” Today, the 68-year-old Basel resident continues to work at his family practice office. Of course, he is working “somewhat less”, but he’s “more motivated than ever” and will doubtless continue to work for years to come.

Roger is far from an exception in Switzerland. “The age of doctors is clearly on the rise in our country,” notes Christoph Bosshard, vice president of the Federation of Swiss Physicians (FMH). “This increase is especially evident among doctors aged 60 and over,” he says.

The most recent data published

by FMH is quite clear, especially with regards to general practitioners working in the outpatient sector. In 2016, the average age was 54.6 compared to 52.6 in 2008. The number of doctors (in the same category) aged 65 to 69 has more than tripled in eight years, increasing from 279 to 854. A similar rise has occurred in the number of doctors aged 74 and over

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PROSPECTING

(2008: 48 people; 2016: 134 people). The increase is even more drastic for physicians between the ages of 70 and 74 (288 doctors in 2016 compared to 82 to 2008).

THE THORNY QUESTION OF SUCCESSION “Of course, doctors working past the retirement age don’t continue to work full time,” says Christoph Bosshard.

Indeed, the fact that it is now easier to practise medicine part time (for example as part of a group practice) partially explains the increase in the number of senior-aged physicians. It should also be noted that many doctors, once they’ve reached a certain age, decide to leave curative medicine in favour of other sectors, such as insurance consulting. “You’ll probably have a hard time finding a 60-year-old doctor working in the A&E Department,” jokes the vice president of FMH. “Medicine is such a wide discipline that there are many ’calmer’ options available to doctors when they approach the end of their careers.”

But why are more and more doctors continuing to treat patients even after they earn the right to a well deserved retirement? “The fact that people are staying healthy for longer should be taken into account,” says Christoph

A WIDESPREAD PHENOMENON “Doctors aren’t the only ones who continue working past the legal retirement age,” says Magdalena Rosende. “Data from the Federal Statistics Office indicate this phenomenon affects all sectors in Switzerland,” says the occupational sociologist and author of a thesis on the medical profession in Switzerland.

The same trend is being seen throughout Europe, but our country is among those with the highest rate of employed seniors, after the Scandinavian countries. Working (or not working) after the age of 65 is linked to factors that “vary widely between fields and individuals”. In some sectors, people in their sixties mostly choose to work for economic reasons, while in others, the prestige related to their profession pushes some to delay retirement. “It’s possible that this second reason applies to some doctors,” says Rosende.

Bosshard. However, according to the FMH’s research, one of the main reasons why 60-year-old and even 70-year-old GPs continue to work is the trouble they have with “turning over their practice” to the next generation. Rather than giving their “baby”, as well as their clients, to a stranger, doctors often prefer working until they find a suitable successor.

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The FMH doesn’t object. After studying the skills of doctors over the age of sixty, it concluded they presented no increased risk to their patients. On the contrary, Christoph Bosshard points out that senior-aged physicians have many advantages over their younger colleagues.

In addition to their vast practical and theoretical experience, they have a “strong network, which is very important in our line of work”.

AN EXCEPTION FROM THE SWISS COUNCIL OF STATES The average age of doctors working in the hospital sector has increased as well, rising from 41.5 in 2008 to 43.2 in 2016. Although the number of hospital physicians aged 60 and over is increasing, there are far fewer than in the outpatient sector. Of course, the fact that it is in theory impossible to continue working in the public sector past the age of retirement helps explain this difference.

A tall tale? “In reality, it is possible to obtain exemption, at least in the canton of Vaud,” says Antonio Racciatti, human resource director at CHUV. This extension, which allows a doctor to work until the age of 70, implies the approval of “the hospital board of directors as well as the Swiss Council of States”. In 2016, the establishment had only 11.5 full-time

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PROSPECTING

equivalents aged 65 and over among its managing physicians (excluding visiting physicians), 0.6 among its chief residents, and 1.4 among its visiting physicians. This number has remained low and relatively stable over the past few years.

sectors in Switzerland, policies to keep seniors in the labour market have been implemented (see inset). Why is this not the case in Switzerland’s medical field, given that France has already implemented such policies?

“They are mostly highly qualified specialists that are continuing to practice at CHUV until their replacements are hired, or they’re colleagues involved in ongoing research projects,” says Antonio Racciatti. Christoph Bosshard reports the same phenomenon in private hospitals. There are more doctors over the age of 65 (some of which have transferred from public establishments) since the retirement age is not as regulated as in the public sector. However, “these doctors are mostly the ’bigwigs’ in their fields, which confers a certain notoriety to their clinics”.

Nevertheless, the human resources director warns that even if Switzerland decides to move in this direction, it should only be “a temporary solution”. In the long term, the way to solve the doctor shortage is to train students.

“Training is precisely where we need to take advantage of the experience and knowledge of older practitioners,” argues the director. “Their skill, multi-disciplinary approach to health and their networks make them ideal mentors.”

FOCUSING ON TRAINING YOUNG DOCTORS According to the human resources director at CHUV, the employability of senior-aged physicians will become more and more of an issue in the not-too-distant future. Given that the shortage of specialists has become a pressing problem, the use of older doctors could constitute a “temporary solution”. Antonio Racciatti notes that in many other business

Magdalena Rosende, an occupational sociologist and author of a thesis on the medical profession in Switzerland (read inset), also believes it is crucial to implement targeted actions to increase the number of young physicians.

Whether it’s the vice president of FMH or the director of human resources at CHUV, one thing is clear – no one wants to pressure older physicians to continue working at all costs.

“That would be dangerous,” warns Christoph Bosshard. ⁄

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COMMENTARY

GUY VALLANCIEN Surgeon and member of the National Academy of Medicine

The red line between repair and augmentation Transhumanism, with its technical and scientific approximations, has made more than a few dreams about living a less difficult life. The trend has rushed to fill the vast gap left by religion’s loss of authority and the world’s major socialist and communist experiments, which failed to make people intrinsically better. This new movement recalls the teachings of the 19th century by drawing on cursory preconceptions to form a troubling and muddled whole. Transhumanism is the belief that the growing power of digital technologies, artificial intelligence, and robotics will cover over all our shortcomings, correct all our weaknesses, and resolve every problem affecting our bodies and minds. The golden age of digital technologies and big data, which can be used to predict, know, do, and think of everything, is already upon us. In a transhumanist world, living beings would be reduced to impotency, insects unable to oppose the irrefutable dictates of impersonal machines capable of thought but devoid of feelings and ideals. What a truly terrible reality that would be.

Yes, some of us have become “cyborgs”, that is, a combination of flesh and machine, in order to repair a physical defect, compensate for a disability, heal an injury, or cure a disease. In these cases, technology was used to make up for a deficit, thereby restoring a sick person’s ability to think and act as before and enjoy the same degree of freedom and autonomy. In no way should we curtail such research into refining our knowledge of who we truly are. No principle of precaution should prevent us from studying the physical, chemical, biological and psychic mechanisms that contribute to our presence in this world.

Anything beyond that, however, is a departure from repairing the injured, disabled, or sick and instead constitutes the augmentation of our raw physical and cognitive abilities. Why would I ever accept such an intrusion into my personal self, and for what purpose? Who would benefit in the end from injecting me with “digital steroids” when I’m prohibited from using the biological equivalent in We must challenge those who declare that sports? Am I supposed to be tempted by the idea of humans are already being augmented and point profit and, in time, domination, all in the name of to the use of Viagra, plastic surgery, vaccines, the free market? No one knows the answer, and the prosthesis, and implanted objects as proof. secretive nature of the major technology companies who run the world from behind their data collections worries me. They ask for transparency in others, but never require it of themselves. We can’t continue down this path for much longer without stopping to PROFILE A professor of urology at Paris study these questions together. Now more than ever, Descartes University from our personal and collective future is at stake. I call for 1992 to 2015, Guy Vallancien a Digital Conference of Parties to be convened so we is the founder of the executive can establish the boundaries for what is acceptable and board of the European School of Surgery. He has written in doing so protect our humanity. ⁄

DR

La santé n’est pas un droit: manifeste pour une autre médecine (2007) and La médecine sans médecin?

Le numérique au service du malade (2015).

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FURTHER READING

“Homo artificialis, plaidoyer pour un humanisme numérique”, Ed. Michalon, 2017

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SHINING LIGHT ON ELDER ABUSE Twenty percent of people over the age of 65 are subjected to abusive treatment.

This phenomenon is widely ignored and still considered taboo.

A

frail, grey-haired woman is knocked aside by a harried caregiver.

An 80-year-old man who can no longer move on his own is ignored when he asks to go to the bathroom. A woman with Alzheimer’s disease is given excessive medication by her son to make her go to sleep. These are just a few examples of the abusive treatment the elderly are subjected to every day. Even though this violence is commonplace, we do not talk about it enough. According to the World Health Organization (WHO), around 20% of people aged 65 and older experience abusive treatment.

Experts suspect this figure is just the tip of the iceberg because many cases are never reported. Nathalie Romain-Glassey, chief physician at the Violence Medical Unit at Lausanne University Hospital (CHUV),

IN CORPORE SANO

TEXT: ANDRÉE-MARIE DUSSAULT

explains that people who have experienced violence don’t always realise it, and even if they do, not everyone will report it. “It’s not always easy to tell the difference between abusive treatment and acceptable behaviour. What is unthinkable in one context might not be in another.”

What is elder abuse? According to the declaration on the prevention of elder abuse, which was adopted by WHO in 2002, elder abuse is “a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person”.

Nathalie Romain-Glassey explains that the abuse can be physical, mental, sexual, or financial, or it can take the form of intentional or unintentional negligence. “For example, treating an adult like a child or certain

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forms of humiliation might be simultaneously offensive and done with the best intentions.”

65 and over live at home, sometimes in isolation,” she explains.

According to the data collected by the hotline run by the Swiss Francophone charity Alter Ego, which works to prevent elder abuse, the types of abuse reported are most often psychological (27%) and financial (33%), followed by negligence (19%) and physical violence (8%). Over 60% of victims are women over the age of 80. In 36% of cases, the abusers are part of the victim’s family. In 28% and 23% of cases, the abusers are health professionals and children, respectively.

A doctor in psychology and a professor at La Source Medical School in Lausanne, Delphine Roulet Schwab recalls that elder abuse has been in the public eye only since the end of the 1990s following a rash of scandals reported by the media.

“However, these reports give the wrong impression that violence is especially common in healthcare establishments – hospices, daycare centres and hospitals – where there is the most oversight.

Yet, 90% of people aged

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Over half the calls Alter Ego receives concern at-home abuse, while only 34% of calls are about abuse in healthcare establishments. Nevertheless, according to a study conducted by Roulet Schwab in 2011, three-quarters of healthcare establishment managers reported having to deal with this problem. In over half the cases, the abuse involved personnel from their establishment. The professor points out that since these forms of violence have become a topic of public discussion, tolerance for elder abuse has dropped significantly. “Practices that were considered acceptable just a few decades ago – like binding seniors to their chairs to prevent falls – are unanimously condemned nowadays, even if they are tolerated in exceptional circumstances under very strict conditions defined by law.”

IMPROVED TRAINING

What is the best way to prevent elder abuse? Every two years, Nathalie Romain-Glassey and Delphine Roulet Schwab run a seven-day training module together entitled “Elder abuse: medical and legal care and perspectives” for professionals involved in healthcare, social work and law. The goal is to teach participants about the scope of the problem and help them address it.

“One of the great advantages of the training is that it’s interdisciplinary in nature, and that goes for the teachers as well as the participants,” explains Nathalie RomainGlassey.

TABOO

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“The first module in September 2015 was attended by hospice workers, at-home caregivers, a prosecutor, a police captain, and a geriatrician, among others. Most participants were healthcare professionals, but there were also legal experts, social workers, and hospice managers.”

A specialised clinical nurse at the CHUV Geriatrics and Geriatric Rehabilitation Service, Christophe Nakamura is also a firm believer in the training programme’s benefits. His Master’s dissertation, which was awarded by the Foundation for Healthcare Research, focuses on uncovering elder abuse. According to Nakamura, nurses can play an important role in spotting the early signs of abuse if they are properly equipped to do so.

Armed with this knowledge, he adapted an assessment grid for use in Francophone Switzerland so at-home healthcare providers can better identify suspicious situations. “Like the famous British nurse Florence Nightingale said, the most important skill to teach a caregiver is how to observe,” he says. There are several signs that can point to abuse.

A change in the patient’s behaviour should be a red flag. “For example, a patient might suddenly develop poor self-esteem, talk about suicidal thoughts, or withdraw from the outside world.”

This should be a cause for concern and lead to further investigation. Seniors will not speak about their treatment without prompting.

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TABOO

IN 36% OF CASES, THE ABUSERS ARE PART OF THE VICTIM’S FAMILY. worry about how their abuser might react or if they will have to leave their home.”

When it comes to prevention and detection, some countries are more proactive than others. In the United States, ever since the 1970s, several states have ruled that abusive situations must be reported to the relevant authorities. In Canada, there is even a Research Chair on Mistreatment of Older Adults.

Christophe Nakamura believes Switzerland still has a long way to go. “Efforts to prevent abuse are not coordinated on a national level. One such motion was rejected by the National Council in 2010, which thought the subject should be handled by the cantons.” Putting an end to this taboo will certainly help rekindle the debate. /

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OPERATION: NEW LOOK Surgery In March, CHUV inaugurated its newest operating room unit. Read on for a tour of the new facilities.

TEXT: MELINDA MARCHESE, IMAGES: PHILIPPE GÉTAZ

In March 2017, the CHUV operating room unit moved to its new home. Staff now receive and operate on patients in a new wing located above the A&E department. “The old unit, which was built in 1982, was in desperate need of renovation,” explains François Marguet, site manager. “We opened these 16 rooms so construction operations could run smoothly over the three-year period.” However, the temporary site will continue to be used. “By 2020, the operating room unit will include 22 rooms divided between two sites.”

In total, 105 million Swiss francs will be invested to design and equip each room, including the recovery rooms, resting rooms, operating rooms, and technical areas at each site. “We worked hard to make the staff’s work as easy as possible and ensure patients’ comfort and safety,” says Julien Didier, biomedical engineer. “The equipment is now more sophisticated, lighter, more compact, easier to use, and more environmentally friendly.”

/1

HIGH-TECH EQUIPMENT

The ceilings of the new operating rooms are outfitted with the latest equipment, including screens, cameras, operating lamps, and other sources of various types of energy (gas, electricity, IT system, etc.), all of which are situated above the floor. The floors are now clear of any cables or equipment, making the rooms easier to clean and increasing the OR team’s freedom of movement.

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IN THE LENS

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IN THE LENS

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IN THE LENS

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2/

3/

CLEANROOM

Above each surgical table, a unidirectional airflow diffuser provides optimal air management.

Air is captured, filtered and kept in the cleanroom where the operation is taking place. This system prevents germs from exiting the operating room and reduces the risk of infection in the patient.

All operating lamps are equipped with LEDs. “This is incredibly helpful,” says Julien Didier. “LEDs offer a better-quality light and last longer than traditional bulbs.

Most importantly, they don’t emit heat and therefore don’t dry out tissue as much during the operation.”

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IN THE LENS

MULTI-TASKING SCREENS

Multiple screens have been installed around the surgical table, allowing the surgeon to easily see both the x-rays and vitals of the patient he or she is operating on. The laboratory can also send test results to the screens during the operation.

Other team members, from the anaesthesiologist to the surgical instrument technician, can thus watch the operation in real time.

“This way, everyone can anticipate the surgeon’s actions,” says Julien Didier. “A camera videotapes the surgery, which lets us show it live on the room’s screens for training purposes. If needed, the feed can also be shown outside the operating unit.”

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4/

RECOVERY ROOM

A central office located in the middle of the recovery room unit lets the care team monitor each patient.

A computer next to each patient’s bed lets nurses add information about the patient to his or her digital file.

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IN THE LENS

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ISABELLE LEHN

CHUV Healthcare Director and SIDIIEF* Executive Board Vice President

Healthcare personnel, a key component in the prevention of and care for AIDS

It bears repeating that the stakes could not be higher. The current global HIV target stipulates that 90% of all people living with AIDS will know their HIV status, 90% of people living with HIV will receive long-term antiretroviral treatment, and 90% of people undergoing antiretroviral treatment will have viral suppression.

The strategy aims to prevent 21 million AIDS-related deaths and 28 million new infections by 2030.

Despite the incredible progress made over the past three decades, two million new HIV infections occur every year, and the epidemic continues to devastate at-risk populations. At the same time, AIDS is receiving less attention and international funding, and some regions in the world are falling behind in their efforts to curb the disease.

In Switzerland, where access to effective treatment is less problematic, testing continues to pose an obstacle. According to estimates, one out of every five people living with HIV has not yet been tested.

Healthcare professionals are working to address this issue by organising large-scale testing and prevention campaigns within the community and providing continuous support to individuals who are undergoing treatment but still struggling with the effects of the disease in their daily lives.

WHO and UNAIDS recommend that community-based actors become involved and receive training in every aspect of the fight against HIV, from the roll-out of new prevention strategies like oral pre-exposure prophylaxis to at-home testing and antiretroviral prescriptions. In Africa, there aren’t enough doctors, and existing healthcare services are stretched to the limit. Nurses play a crucial role in providing decentralised healthcare; they can With or without the support and attention help prevent the spread of the disease within of the media and political class, in Africa, a community as well as provide testing and Switzerland, and throughout the world, the quick access to treatment. In a recent position coordinated efforts of nurses are essential. ⁄ paper entitled “Counting on Nursing: A Winning Strategy,” SIDIIEF* members and over 15 African associations from 34 French-speaking countries called on governments to centre their efforts around nursing in order to promote greater access to treatment.

SAM

*INTERNATIONAL NURSING SECRETARIAT FOR FRENCH-SPEAKING COUNTRIES

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COMMENTARY

W

ith its tiny white flowers perched atop a flimsy stem, thale cress will never be a favourite among florists. If it shows up in a garden or tries to grow between paving stones, it’s pulled up like any weed. But “Arabidopsis thaliana” couldn’t care less. Its fan base is the scientific community. At the University of Lausanne alone, a hundred researchers spend their days studying this plant.

NAME ARABIDOPSIS THALIANA OR THALE CRESS SIZE 30 TO 40 CM TALL CHARACTERISTICS LIFE CYCLE OF AROUND 10 WEEKS

Thale cress The perfect plant for research.

TEXT: MARTINE BROCARD

A cousin to rapeseed and a member of the cabbage family, Arabidopsis is the gold standard in plant studies, just like the mouse, fruit fly and roundworm are when it comes to animal studies. The plant reproduces itself every two months and is well suited to genetic studies because it has a relatively low number of genes. “For a plant, CORPORE SANO

FAUNA & FLORA

it has a very small genome – around 135 megabase pairs.

For comparison, the human genome contains 22 times more pairs,” says Christian Fankhauser, professor at the Integrative Genomics Centre at UNIL. This Eurasian species, which has also colonised the Americas, is especially useful for agronomic research. Scientists study how the plant responds to drought, salinity and bacteria. But thale cress can teach us much more.

“Arabidopsis has furthered our study of innate immunity, circadian rhythms and epigenetics.

We know more about this plant than any other, and it’s incredible to see how much that information can be applied to other plants and more.” ⁄

SCANNING ELECTRON MICROSCOPE, RALF J. SOMMER, JÜRGEN BERGER / MAX PLANCK INSTITUTE FOR DEVELOPMENTAL BIOLOGY.

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CURSUS

COMMENTARY

CURSUS

CAREER AT THE CHUV

In favour of medical humanities

Jean-Daniel Tissot Dean of the FBM

In response to the increasingly technical nature of medicine, we need a place to Vincent Barras consider these developments Director of the IUHMSP with the necessary critical Elena Martinez perspective. We need people & Nicolas Berlie who will think about how FBM Dean’s Office these changes will impact patients, medicine and ow more than ever, we society and anticipate, steer, and even challenge them. That is why the FBM is creating need history, espethe Medical Humanities Institute (IHM) in cially given how fast 2018. This new institute will be founded on the world we live in is the same structure of the current IUHMSP, changing. History lets us take a step back and but will focus on a wider scope. The IHM gain some perspective. will promote the role of social science in medicine, including issues related to hospital It’s hindsight, or even – though it may be communications and spirituality, and will wishful thinking – foresight. The Faculty incorporate the academic aspect of cliniof Biology and Medicine (FBM) has a cal and research ethics. A part of the IHM’s powerful tool at its disposal in the form of work will be hospital-focused because it is the University Institute for the History of closely related to the practice of healthcare.

Medicine and Public Health (IUHMSP).

At a time when everyone is talking about However, the IHM will serve as an agora in the ancient sense of the term, i.e. a place for “personalised healthcare” and gearing up research, exchange and ideas. in response, this institute places the FBM The only way the FBM will be able to in a valuable position from which it can complete its project is by working closely objectively evaluate this important question. with the other UNIL faculties. The IHM Because make no mistake – it is important. will not be successful unless it can pull from It is, as yet, unclear whether we find ourselves at the dawn of a social and medical history, social sciences, the humanities, law, economics and theology. This space for revolution, or if all the hype is simply exaggerating progress. Only time will tell, but evaluating how the medical field is changing will also serve as a mouthpiece for the genit’s true that genetics, genomics, transcriperal public. If we are to put “people at the tomics and metabolomics are already a part centre,” as stakeholders in the personalised of medicine. In addition, many of the legal, medicine industry so often promise, society ethical, economic and societal questions must be an integral part of the process. ⁄ these fields have raised will remain relevant.

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PASCAL STEULLET

TANDEM

PHILIPP BAUMANN

CURSUS CURSUS

P

CAREER AT THE CHUV

sychiatry is “Over time, this Psychiatrist Philipp Baumann and a complex research will reveal neurobiologist Pascal Steullet branch of abnormalities that medicine in which could be used to work together to research partnerships with identify the various cerebral abnormalities associated clinicians and stages of the disease with schizophrenia. neurobiologists are and predict how it essential. Philipp will evolve,” says the TEXT: WILLIAM TÜRLER, PHOTOS: ÉRIC DÉROZE Baumann, a practising neurobiologist. psychiatrist and research clinician, works with Pascal Steullet, Philipp Baumann, who also directs the TIPP a neurobiologist and research director, as part (Treatment and intervention in the early stages of the research programme established between of a psychotic disorder) programme, helps treat the General Psychiatry Service (PGE) and the young patients dealing with a psychotic condition.

Psychiatric Neurosciences Centre at CHUV. “My role is to provide the project with clinical “We are working on an interdisciplinary project expertise and identify the important questions to better understand the role of the thalamus we need to ask to improve treatment and patient [editor’s note: an anatomical structure within the care. I also coordinate the neural imaging part brain] in schizophrenia,” says Philipp Baumann. of the project in collaboration with the CHUV “Our approach involves close collaboration medical imaging analysis laboratory (MIAL) in between clinical and fundamental research. order to study the thalamus of any young patient Abnormalities observed in patients can be who presents with a first psychotic episode.” reproduced in mice models in order to study the pathological mechanisms involved, and research Pascal Steullet uses his expertise as a neurobiologist using animal models can also help guide our to support the clinical research portion of the hypotheses when it comes to patient testing.” project. “We will pursue our research to improve our knowledge of abnormalities in the thalamus Recent results from the studies conducted by caused by oxidative stress and of the molecular Pascal Steullet and his fellow researchers indicate mechanisms involved in the process. The results that a key region in the thalamus (thalamic from this research will help us refine and pinpoint reticular nucleus) is very vulnerable to oxidative our investigations with patients.” ⁄ stress, or cell damage caused by oxidising molecules, and might be affected in patients suffering from schizophrenia. The goal is to use imaging technology to identify potential abnormalities in the thalamus in a cohort of young patients who are developing a psychotic disorder.

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CURSUS

Sharing logistics On 26 June 2017, CHUV and HUG laid the first stone for a new shared logistics complex in Bussigny in the canton of Vaud. This platform will bring together the central stores of the two university hospitals by the end of 2018. CHUV and HUG have decided to combine their inventories of goods (not including medicine) to solve problems of space, modernise infrastructure and optimise operating costs.

CHUV-HUG

RP

Lung cancer therapy

Professor Solange Peters, chief of the Service of Medical Oncology and president of ESMO, has recently released the findings of lung cancer research in the prestigious publication, the New England Journal of Medicine. The study covered a new targeted therapy, the drug alectinib, which stops disease progression for more than two years. The chemical also reduces the risk of the illness spreading to the brain by 84%.

ONCOLOGY

MM

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NEWS

Getting through labour trauma with Tetris The famous video game reduces symptoms of post-traumatic stress following an emergency caesarean.

RESEARCH

Enduring an emergency C-section can be a traumatic experience for a mother.

Video games offer a promising solution for reducing the difficulties of this form of labour.

Antje Horsch, a psychologist and head of research with the Woman-Mother-Child Department at CHUV, and her team have found that playing Tetris in the six hours following the birth of a child can reduce post-traumatic stress symptoms.

One-third of women develop post-traumatic stress after an emergency caesarean, a medical procedure performed in about 15% of cases. This disorder causes intrusive memories, flashbacks or even nightmares, and can affect the bonding between the mother and her baby.

Swiss researchers, collaborating with scientists from Karolinska

Institute in Sweden and the universities of Oxford and Cambridge, worked on how to prevent PTSD. They tested the hypothesis that a cognitive task capable of disrupting the formation of memory could prevent traumatic memories from settling.

In all, 56 mothers participated in the study. Half played Tetris for 15 minutes in the six hours following childbirth, on top of standard care, while the other half only received the typical care. The women in the first group showed fewer intrusive memories in the first week post-partum, and not as many were diagnosed with post-traumatic stress after one month.

SG

CURSUS

New head of Department Professor Alain ORTHOPAEDICS Farron will take over as the new chair of the Department of the Musculoskeletal System at CHUV on 1 July 2017.

“With longer life expectancy, this will be a key area in public health for the 21st century,” the expert says. The orthopaedic doctor specialised in the problems of the shoulder and elbow has been with CHUV since 1990, in particular as chief of the Service of Orthopaedic Surgery and Traumatology since 2008. SG

New chief of Service

Professor Solange Peters was appointed chief of the Service of Medical Oncology at CHUV, after acting as the unit’s interim chief. She will take on her duties starting on 1 July 2017. Solange Peters is specialised in immunotherapy of thoracic tumours and their molecular characterisation. Her advances in the personalised treatment of lung cancer has made Lausanne a European centre of expertise in thoracic oncology. SG ONCOLOGY

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NEWS

Dual honour Professor Jean Bourhis received a dual award at the annual conference held by the European Society for Radiotherapy and Oncology, or ESTRO, in May 2017 in Vienna. The first was the Jens Overgaard Legacy Award in recognition for the most frequently cited original articles in radiation oncology. This was the first time the award was given. The article in question – which appeared in 2009 – cited more than 1,500 times highlighted the benefits of combining radiotherapy and chemotherapy in treating cancers of the head and neck.

RADIATION ONCOLOGY

The ESTRO Regaud Award, handed out every two years, is the highest honour granted by ESTRO. With this award, the society recognises the overall contribution of Professor Bourhis to progress made in his area of research. His academic and clinical fields of interest apply to all of radiation oncology, as well as innovation and translational research in radiotherapy.

RP

European award for Thierry Calandra Professor Thierry Calandra, chief of the Infectious Diseases Service at CHUV, received the 2017 Excellence Award from the European Society of Clinical Microbiology and Infectious Diseases.

This nod to the Swiss doctor acknowledges his career achievements and “exceptional contribution” to his area of research. Thierry Calandra, a graduate of the universities of Lausanne and Utrecht, focuses his work on natural immunity, sepsis and bacterial and fungal infections in intensive care units and immune-deficient patients.

The researcher has written nearly 300 papers that have appeared in prestigious publications such as the New England Journal of Medicine, Nature and The Lancet.

MICROBIOLOGY

SG

IN VIVO

Magazine published by the Lausanne University Hospital (CHUV) and the news agency LargeNetwork www.invivomagazine.com

PUBLISHER

CHUV, rue du Bugnon 46 1011 Lausanne, Switzerland EDITORIAL AND GRAPHIC PRODUCTION T. + 41 21 314 11 11, www.chuv.ch LargeNetwork, rue Abraham-Gevray 6 redaction@invivomagazine.com 1201 Geneva, Switzerland T. + 41 22 919 19 19, www.LargeNetwork.com CHIEF EDITORS

Béatrice Schaad and Pierre-François Leyvraz PROJECT MANAGER AND ONLINE EDITION

Bertrand Tappy THANKS TO

PUBLICATIONS MANAGERS

Gabriel Sigrist and Pierre Grosjean PROJECT MANAGER

Melinda Marchese

Alexandre Armand, Francine Billote, Valérie Blanc, GRAPHIC DESIGN MANAGERS Gilles Bovay, Virginie Bovet, Darcy Christen, Muriel Cuendet Teurbane, Jelena Cvetanovic, Diana Bogsch and Sandro Bacco Stéphanie Dartevelle, Diane De Saab, Frédérique Décaillet, Muriel Faienza, EDITORIAL STAFF Marisa Figueiredo, Pierre Fournier, LargeNetwork (Martine Brocard, Joëlle Cachin, Andrée-Marie Dussault, Katarzyna Gornik-Verselle, Aline Hiroz, Joëlle Isler, Sophie Gaitzsch, Melinda Marchese, Stéphanie de Roguin, William Türler), Nicolas Jayet, Emilie Jendly, Eric Joye, Fabienne Pini Schorderet, Bertrand Tappy Cannelle Keller, Simone Kühner, Anne-Renée Leyvraz, Elise Méan, Laurent Meier, Eric Monnard, Brigitte Morel, Thuy Oettli, ICONOGRAPHIC RESEARCH Manuela Palma de Figueiredo, Odile Pelletier, Bogsch & Bacco, Sabrine Elias Ducret Isabel Prata, Sonia Ratel, Myriam Rege, Marite Sauser, Dominique Savoia Diss, COVER Jeanne-Pascale Simon, Elena Teneriello, Bogsch & Bacco Aziza Touel, Vladimir Zohil and the CHUV’s Communications Service.

IMAGES

SAM (Éric Déroze, Philippe Gétaz, Jeanne Martel, Gilles Weber), Bogsch & Bacco, Paweł Jońca, Sébastien Fourtouill

DISTRIBUTION PARTNER

BioAlps

LAYOUT

Bogsch & Bacco for LargeNetwork TRANSLATION

Technicis PRINTING

PCL Presses Centrales SA 18,000 copies in French 2,000 copies in English The views expressed in “In Vivo” and “In Extenso” are solely those of the contributors and do not in any way represent those of the publisher.

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IN EXTENSO

The science of happiness