An unhealthy health care reform in Switzerland

The Swiss Federal Council plans to ration health care as part of health system reform. The immediate purpose of rationing is to reduce costs. As a patient advocate, I am adding my voice to a broad coalition who criticise this proposal as misguided.

Will rationing health care reduce financial health costs?

And how will rationing affect the costs in terms of human suffering, if it reduces the quality of care?

If you are interested to learn more, please read on…

In Switzerland health care is considered excellent, but it is also very expensive. In addition, the cost contributions for patients are high which make the system regressive: those disadvantaged by illness or low-income bear a relatively higher burden of cost than the healthy wealthy. (The wealthy are per se healthier than the poor: partly because they have the means to buy healthy food, practise sports, and visit doctors at the onset of a health problem rather than wait until it becomes more serious.)

The Swiss health system is highly commercialised – it even drives children’s hospitals towards profit-making – and fragmented, with responsibility for providing health care largely delegated to the local cantons, resulting in 26 different health systems. These systems are governed and organised by various public and private entities (Confederation, cantons, municipalities, health insurers and service providers) each of which assumes different tasks. As a result, the Swiss health system is complicated needing a costly administration to help both patients and doctors negotiate the system.

Effective governance of this complex system is further compromised by the inherently slow decision making of the Swiss political system, as well as the undue influence of private industry. For example, members of the Commissions for Social Security and Health in both the upper and lower houses of parliament attract an impressive list of lobbyists; who work in the interests of the private industries they represent, not in the interest of the public, whom the commission members are mandated to represent. Many Commission members are also active in the governing boards of health industry players creating a conflict of interest with their parliamentary mandate.

Finally, there is no independent public health institution such as the Robert Koch-Institut, as exists in Germany. The Federal Office of Public Health (FOPH) is pressured to serve political decision-makers. As an example, the responsible FOPH medical doctor for Sars-CoV-2 stated early in the pandemic that masks were unnecessary and would not protect the public. Many thought the real explanation was that there were not enough masks even for hospital workers, because regulations for reserving stockpiles had not been adhered to. Whatever the reason, the credibility of the FOPH was compromised.

Given these characteristics, I will argue that despite the passion and dedication of most health professionals, the Swiss health system primarily serves the industries that benefit from it, and not the people it should be there for: the public and specifically, patients.

The Swiss health system primarily serves the industries that benefit from it, and not the people it should be there for: the public and specifically, patients.

Info Box

A common argument against criticism of the Swiss health system is that the system is excellent and the population is satisfied. The most recent assessment by the Commonwealth Fund ranks Swiss health care overall 9th from 11 high income countries, and 3rd most expensive. Switzerland ranks poorly for administrative efficiency and access to care. Surveys of public satisfaction vary widely and do not always match with measures of quality, e.g. the National Health System in the UK rates highly in public esteem, but is considered very critically in Switzerland. On Swiss radio the UK system is explained, and compared with the US.

In 2019 the government published a health strategy called Health2030 which identified many of the issues faced not only by Switzerland but also by health systems worldwide: digitalisation, demographic changes, the increase of non-communicable diseases (NDCs), and rising costs of health care.

One of the proposed measures suggested by an Expert Group is legislation to enable the government to limit the growth of healthcare costs by using “expenditure targets,” i.e. budget restraints on outpatient care. The result is essentially that a target is set for the number of illnesses that can be treated in a given time period, e.g. one year, on an outpatient basis. When expenditures reach the set limit during that year, either services must be cut, waiting times must be introduced, or patients must be shifted from out-patient to in-patient care. A system of budget restrictions has been adopted in other countries e.g., in the UK and more recently in Germany.

This proposal has met with united criticism from all health partners, including the patients, medical clinicians’ association FMH, insurers and industry representatives. Consultation with patient advocacy groups has been cursory, and patients do not have the resources to campaign, which are available to other players. Here I present the patient perspective about these proposed measures. The views are my own but have been discussed with other patients and the Swiss Patients’ Organisation SPO.

Expenditure targets in health care assume that costs can be controlled and predicted. However, illness or accident are by their very nature unwelcome and unplannable events, as the Covid-19 pandemic has clearly shown. Accordingly, treatment costs can only be precisely predicted or regulated, if there is an explicit decision not to treat beyond a set target. (Stefan Felder of Basel University shows the impossibility of this approach and other shortcomings, which I do not explain here.) Nonetheless, this is the strategy: the government proposes to set a budget constraint for medical outpatient care.

Such a strategy opens frightening perspectives for patients. If one day you receive the diagnosis of cancer, you will want to be treated immediately and not wait. 10% of women worldwide suffer from breast cancer some time in their lifetime. Currently in Switzerland, when a woman is suspected of having breast cancer based on mammography, she will get a biopsy and begin treatment within two weeks of the suspected diagnosis. What if she gets a suspicious mammography in October, but the budget for that year is exhausted? Will she have to wait until January to get the biopsy or out-patient lumpectomy or radiotherapy?  I, who have personally benefited from prompt care, would not want other women to be delayed because of budget restraints.

Delays in treatment may lead to poorer outcomes. As an analogy, in Switzerland (and in other countries) the Covid pandemic led to the postponement of many treatments. The future losses in years or quality of life are unknown. The consequences in terms of poorer outcomes have yet to be evaluated. The ethical dilemmas for medical staff – having to choose which patients to prioritize – were enormous. What will be the effect on the morale of medical staff when such dilemmas are built into the system, not just the result of a worldwide catastrophe?

Apart from the consequences for those needing health care, it seems unlikely that this measure will achieve long-term sustainable cost savings. Let us assume that budget constraints are introduced, medical costs reach the cost ceiling and the rationing of care kicks in. This will lead to other health care costs. In the case of cancer, it is well understood that any delay increases the risk that the cancer will spread and cannot be cured at all, or only at greater cost. In fact, this will be true for most other chronic diseases. Delaying or postponing appropriate care may or may not save costs in the short run, but it seems hard to believe that it will not reduce the quality of care and lead to poorer outcomes with costs in human suffering.

Delaying or postponing treatment may or may not save costs in the short run, but it seems hard to believe that it will not reduce the quality of care and lead to poorer outcomes with high costs in human suffering.

The government strategy also overlooks many other opportunities to save costs and improve the quality of care. The cost-saving opportunities presented by listening to patients – something that I have written about in this and other blogs – are enormous, if the right incentives and structures are made available.

Finally, chronic non communicable diseases like mine are the biggest cost factor in the Swiss health system, as the strategy Health2030 acknowledges. It seems likely that the chronically sick will be most adversely affected by this reform, perhaps creating new systemic inequities in access to health care.

In my next blogs I will examine how the chronically sick will be affected by this reform, and how patients could contribute to a health system which reducing costs without leading to poorer care outcomes.

To be continued ……

Another Patient Journey: 2019 was a good year

Picking up the story from my last blog Was 2019 really that bad? my doctors advised that I should stop the TNF blocker drugs, that had enabled me to live a normal life for the past three years, before undergoing cancer surgery. That made sense. These drugs work by dampening the immune system. I could understand that my immune system should be as strong as possible for the operation, so I would have to go off them…. for a while.

However, after the operation I was told that I wasn’t supposed to stop the TNF blockers just for the operation. I was supposed to stop them forever, or at least for a few years, because TNF blockers might enable the cancer to come back. TNF = Tumour Necrosis Factor – the blockers stop these messengers in the immune system, which are thought to play a role in suppressing cancer.

My doctors all seemed to be saying “stop TNF blockers”. I couldn’t believe it. I read the patient information for my medication, and it said the same thing: Do not take this medication if you have been diagnosed with cancer.

I was absolutely devasted.

Until I spoke to one doctor, by whom I felt understood, and who said, “What do you want? What is Quality of Life for you?” I thought of my trips to the mountains, of laughing with family and friends and all the love of life that had come back to me with TNF blockers. After the trauma of diagnosis and the surgery, I felt so confused and helpless. I needed that input to start thinking for myself.

I posted a question on the Facebook AS patients’ page of which I am a member. One woman commented that she was in cancer treatment and had to change medication. She wrote, “I got my life back with humira [brand name of a TNF blocker drug] and now it’s the 💩💩💩.”

Then I looked for relevant research results, my oncologist sent me a paper, I opened the discussion with different experts, and discovered …that there was no relevant, reliable data to guide my decision. The risk of cancer caused by TNF blockers in my situation is theoretical, because it would not be admissible to run clinical trials with patients to find out. There is also no scientific literature showing that I will reduce the risk by stopping TNF blockers now.

Living with chronic disease is life on a knife-edge

With my condition I live on a knife-edge, and I want to stay on it, living a normal life. This is me, on a mountain called the Lyskamm. It’s a knife-edge ridge, about 5 km long, and the idea is to stay on it, to walk right over it. I walked over it on my mountain tour of August 2017. I tell that story in my TED talk or my blog 16 x 4,000m summits in 5 days.

Traverse of Lyskamm, 16 4,000m peaks in 5 days
Me standing on the knife edge of the Lyskamm on the border of Switzerland and Italy

When you stand on that ridge on the right is Italy, and a drop of 1000 m. On the left is Switzerland, and a drop of 1000 m.

Italy is happy go lucky, living for the now. “La Dolce Vita”. For me it stands for continuing TNF blockers. But maybe I will fall to my death, because taking the drugs might allow the cancer to come back!

Switzerland is the sensible place to be. If in doubt, choose the conservative option, wait and see. It stands for stopping TNF blockers. But maybe I will fall to my death because if I stop taking the drugs, the autoinflammatory conditions will probably flare up again! I had experienced this a year before, when the medication stopped working, see The Luxury of Despair. Furthermore, it is known that chronic inflammation increases cancer risk, as does a lack of regular exercise.

How would you choose? ……Which way would you lean on that ridge?

“What is Quality of Life for you?”

The words of that doctor were my guiding light. She saw my integral, holistic needs beyond the inflexible, “one size fits all” recommendations of a health system that generally places mortality and prolonging life above quality. In Switzerland I can choose my doctors and over the years I have sought out dedicated carers who are attentive to my experiences and needs and do everything in their power to help me.

I want doctors to give me the facts, listen to me, guide me, but recognise that this is my patient journey.

I could explain my perspective to my doctors and win their understanding, respect and agreement. I decided to continue TNF blockers and live as healthy and strong a life as I can, even if my decision might be increasing the risk of cancer. Life feels good right now, and that’s all I need.

A new F-word: FASTING – Love or Hate?

Next week is Ash Wednesday when the Christian fasting period called Lent begins.  I’ve never fasted.  It always seemed rather uncomfortable and difficult.  Until now I couldn‘t see any benefit and feel that managing AS I have enough to do.

The more I read and try things out, the more convinced I am that diet is important to my condition.  We know that AS is about 95% hereditary, so I couldn’t have stopped it breaking out.  But what I eat can maybe influence the progress of the disease, and most importantly how I feel on a day to day basis.  A good diet should also help to keep other health issues at bay, which result from chronic inflammation.

But not eating at all?!   NOT TOO SURE THAT I WANT TO STOP EATING ENTIRELY!

Beautiful organic lettuce
I love my lettuces – this one was grown organically in my garden!

So what is fasting all about?!  HERE IS WHAT I FOUND OUT

The first thing I found out is that I could fast in many different ways.  I could not eat for just 8-12 hours, which is called “interval fasting” and seems the same as eating early in the evening; or fast for perhaps as long as 3 weeks.  I could eat nothing at all, or just limit my diet, for instance to juices or fruits.

The second thing that I realised is that not only Christians of practically all denominations, but also every other leading wisdom tradition, such as Hindus, Muslims, Buddhists, Jews, observe fasting at certain ceremonies or times of the year.  These are traditions which have held for thousands of years, and are based on collective and accumulated knowledge.  Such customs are a spiritual practice but also often developed for practical reasons.  In Western Europe before global trade and industrial greenhouses, food was getting scarse by Spring, so there were good reasons to eat less!  But maybe there were health reasons for these practices too, which could not be scientifically proved, but were observed.  The ancient Greeks believed in fasting.  Indeed Hippocrates is quoted as saying: “Instead of using medicine, rather, fast a day.”

The third thing I found is that Western medicine does not advise fasting, particularly for people who suffer from serious chronic disease.  The fasting article in Wikipedia discusses fasting in religious practice at great length.  Medical applications are referred to only with reference to fasting before surgery or medical tests. 

Alternative medicine gets a one liner in Wikipedia: “Although practitioners of alternative medicine promote “cleansing the body” through fasting, the concept is quackery with no scientific basis for its rationale or efficacy.”

But the fourth thing is that I found an article on the effects of fasting on rheumatoid arthritis in the renowned medical journal “The Lancet” in 1991.  Its conclusion is: “Fasting is an effective treatment for rheumatoid arthritis, but most patients relapse on reintroduction of food.”  But then, after 7-10 days fasting, patients were put on gluten-free vegan and then lactovegetarian diets.  A control group ate an ordinary diet.  The final result: “The benefits in the diet group were still present after one year, and evaluation of the whole course showed significant advantages for the diet group in all measured indices.  This dietary regimen seems to be a useful supplement to conventional medical treatment of rheumatoid arthritis.”

Has this research on rheumatoid arthritis (RA) been followed up?  Yes, a bit!  I found an interesting article from 2014 called “Fasting: Molecular Mechanisms and Clinical Applications“, which states that the positive effects of fasting on RA have been supported by four differently controlled studies.  The authors write: “..for many [RA] patients able and willing to endure long-term fasting and to permanently modify their diet, fasting cycles would have the potential not only to augment but also to replace existing medical treatments.”

Is fasting really “quackery” as Wikipedia claims, or has not enough research been done to establish its value?  And what about the effects on AS?

My fifth thought comes from new knowledge gained in basic medical research.  A process which might have played a key role in the positive effects of fasting for patients with rheumatoid arthritis is Autophagy.  This is a sort of automatic biological cleaning programme.  The removal of waste products and old debris is essential for the cellular and organic fitness of any living organism.  Autophagy describes a fundamental process to degrade and recycle old cells, and then use them for new purposes or as a source of energy.  Yoshinori Ohsumi who discovered the processes and elucidated the basic mechanisms of how autophagy works, was awarded the Nobel Prize for Medicine in 2016 for his work.

Autophagy, as a recycling and cleaning act, is essential in many physiological processes.  It is triggered by the need to adapt to a lack of food caused by starvation or intentional fasting, but it is also a response to infection.  Furthermore, it is now known that mutations in autophagy genes can cause disease, and that the autophagic process is involved in several conditions including arthritis, cancer and neurodegenerative diseases.  But nobody yet understands how.So perhaps the view of fasting will change in the next years.  More research is needed to understand autophagy and how exactly it may be connected to arthritis.  We might  find out that autophagy could contribute to the treatment of diseases, perhaps even by fasting!

The Luxury of Despair

The Welsh singer-songwriter Martyn Joseph sang at a music festival in our village last August. A song was about the conflict in Palestina and the fate of those innocent civilians living there. „Despair is a luxury,“ he sang. (There’s the link – check the song out!)

Martyn Joseph singing
Martyn Joseph singing at our annual music festival in August 2018

Those lyrics struck a chord with me. I remembered how a neighbour met me in a train last May. My hand and arm were bandaged with a dressing of anti-inflammatory cream. The medication that had transformed my life since Christmas 2015 had been working less well in the previous months. Now it had stopped working entirely, and alternately my wrists, arms, knees swelled up. I had backache and felt exhausted, drained of  energy, not rested after sleep. We talked a little, and she said, „You are brave.“  I said, „I’m not. I have no choice.“

Inside I didn’t feel brave. I was frightened. Frightened that the joy of life, given back to me by the treatment, was lost. Frightened that I would go back to chronic pain, frightened that I might not be able to work, frightened that I would be too tired to go out into the world, and loose the social life that keeps my soul afloat.

Six months on, one of the alternatives that are currently available, does seem to be working. The swelling disappeared in June and the back ache that plagued July is gone too. Side effects are being controlled with another medication. I am energised again, able to get up early, go hiking, swim, go out in the evening and generally feel good about myself again. I’ve just been on holiday for two weeks of swimming, diving, reading, eating, fun with friends, and generally had an amazing time.

In retrospect, it‘s a shame that I allowed several months to be marred by feeling miserable. My doctors are caring and will do their best to find a treatment that will help me. I am incredibly lucky to live in a country where my treatment will be paid for, more or less whatever it costs. (Think of the people in poorer countries, where this is not the case; and for the Americans with disorders like mine, who told me that they will not get insurance cover, if President Trump’s health care reforms are enacted).  I have a job and an understanding employer. I have a secure home, and a loving family. There are plenty of things I can still do, even if I have aching joints. Things could be so much worse.

Despair is a luxury” sings Martyn Joseph. If you can‘t change anything, then despair has no use – it’s like a luxury. That’s how I understood the words of the song, So, if despair can galvanise me to go into action and change something, then it’s useful. If not, despair is only destructive and will never end. Acceptance and trust are the keys; enjoying every moment, when nothing is seriously wrong – and of course even during a flare-up, there are such moments.

Meditation is the greatest tool I know to instantly get into a mind-frame of acceptance, trust and happiness. But exactly when I’m in pain and feeling bad about myself, is the time when I don’t use it! If I have backache, or other aching joints, I find meditation most difficult….. Will I manage better next time? I’m working on it.

When things don’t go according to plan – An April Fool’s Day Joke?

It’s time to come out with it! In January I broke my leg skiing. Now it’s April, and I STILL have a sort of plastic brace on my leg. I’ve barely been out of the house since the accident, except to go to the doctor’s or physiotherapy. But I’ve been to many places inside my head and – thank goodness – I’ve come back again. Life is still an adventure, even within the constraints of hoping around the house. But this is an adventure I could probably do without.

Skiing below the Eiger North Face
Below the Eiger North Face minutes before my accident

So here is the photo of me just before it happened. I’m looking at camera in my orange jacket and black helmet. To the left is the Eiger North Face. We are a group of friends planning to ski down a long descent just under that iconic mountain. We even had a wonderful local guide/teacher with us. Now, on Easter Sunday, it seems such a long time ago.

I was concentrating on practising my new improved short turns in deep snow, and didn’t notice a sort of drop to my right, someone came too close and to avoid a collusion I veered right and at the moment of falling into the drop, I couldn’t decide whether to brake and fall sideways or try to jump cleanly into it, so I fell straight into it and at that angle my touring ski bindings didn’t open.

Just the day before I’d seen Tom Cruise on the Graham Norton Show breaking his ankle and then running on. I was so impressed, but somehow something uncanny resonated with me that evening. So when a similar thing happened to me the next day, I was very aware of what was happening and knew instantly that I had broken my leg (tibia for people who know about bones), and that this was going to be a long story.

My friends helped me back to the main slope where a sort of motor bike on skis picked me up and took me to the Alpine train station called Scheidegg. I was put on a train back down to Grindelwald. During the train journey a middle-aged man, who was obviously used to telling people what to do, hit my leg with his ski stick and told me to take it off the seat. I breathed deeply and managed to remain courteous, but my explanation caused him to beat a rapid, wordless retreat to another seat. At Grindelwald the ambulance was not there as promised, so two station masters carried me to a taxi, which took me to a local doctor, who seems to earn a good living in winter x-raying people and encasing their injuries into plaster. The doctor also gave me a bottle of an opiate based pain-killer that I know from serious AS flare ups, so I chatted nonstop and cheerfully to the woman in our group who kindly drove me home. Goodness knows what I found to talk about!

At home a neighbour helped me set myself up with cushions in bed and an office chair to scoot around the kitchen. Over the next weeks my son visited regularly and helped with things like putting the rubbish out and filling the bird-feeders, neighbours shopped, and the Red Cross taxi service took me to the doctors. The ice and snow only melted in mid-March, so until very recently it was almost impossible to go out safely .

My well-being is very dependent on lots of movement and sport, and when after 10 days I was suffering from acute backache, I was terrified that a AS flare was starting. I started taking NSAIDS (Nonsteroidal anti-inflammatory drugs) regularly again, and they upset my stomach and made me feel sick. However, massage and physiotherapy managed to relieve the pain, so I could stop taking medication.

I got very lonely sometimes. Many friends visited and that saved me. But my daughter had only just moved out two weeks before and was abroad, so I was living alone for the first time in about 30 years. Morning meditation was difficult at first because of the pain, but I kept writing a journal and trying. That time in the morning is special, because it helps me to reframe negativity, create intentions and a purpose for the day, and live in the present moment. An example: on days when I saw nobody was to pose the question: “Am I lonely, or do I have the opportunity to enjoy a day of solitude?” Around me are so many people who are stressed out by the demands of their jobs and other people, and who would love a day by themselves.

One of my friends who told me that she’d never broke a bone, promptly broke her left leg skiing too. So we are thinking of forming a Facebook group. Anybody else?

Andrea and Judith broke their legs skiing
Andrea and me both broke our legs skiing in Winter 2018

Now the weather is a bit warmer and the snow has melted. I can put weight on my leg. Next week is another X-ray and if the bone has mended, I will loose the brace. Only downside is a sort of wandering Arthritis. Yesterday my right index finger and left elbow were swollen and painful. Today it’s my right knee and a bit in my right wrist. I’ve had this twice before – anybody else know it?

But otherwise life is looking up.