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.

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.

Am I really what I eat?

In the bad old days when life seemed to be filled only with pain, I used to comfort myself and find moments of peace with the thought: „I am not my body!“ If I could see myself at a level of consciousness where my soul and not my body was in charge, then the pain lost its power over me. That was rare, but it did happen.

If I am not my body, then I am also not what I eat, right? Up to now I believed that medication, exercise and stress-reduction are more important for my well-being, than food. However, the more I learn about diet, the more I think that it may be important too. Diet seems to be the question that interests people the most.

The leading Swiss charity for musculoskeletal disorders, the Swiss League against Rheumatism, recognises that many patients would like advice about diet, but do not know where to find reliable information. They publish an excellent series of articles explaining the different views (German, French, Italian). Many rheumatologists are sceptical of or reject any significant dietary influence on the development of chronic disease, and fear that special diets may lead to nutritional deficiencies, and make things worse for patients. At the other extreme there are holistic physicians, and health advisors who believe that diet can even replace medication.

When the disease flares up, I would try almost anything to alleviate the pain; and it seems intuitively plausible that what we eat may affect the progress of disease. It is well-known that a poor diet can lead to other health problems, such as Diabetes or cardiac disease. But what about Arthritis? Health care specialists who believe that diet has no influence, point out that there is no clear evidence that diet makes a difference. But that could be because the subject has not been adequately researched yet. We still don’t understand what triggers arthritis, so in my view it’s too early to eliminate diet from the list of suspects.

But where can patients like myself find the information to make their own decisions?

My General Practitioner sent me to a nutritional consultation at the local University Hospital. I was amazed to learn that they even have a leaflet for people with inflammatory arthritis (published by the Swiss Society for Nutrition in German and French). There I was told that many elements of a Mediterranean diet can help reduce inflammation.

The picture shows me with my kids eating a Mediterranean diet on holiday in 2014. We were doing it years ago!

Family holidays in Sicily

The first thing is to guard against Osteoporosis. I‘ve had reduced bone density since my mid-forties, so that means making sure I get enough calcium (Fish, cheese, yogurt, various seeds – you can find information on the web) and Vitamin D (supplements and going out into the sunshine).

People affected by inflammatory arthritis need a lot of protein, which is contained in meat, fish, eggs, dairy products, beans and pulses. Some of those foods may promote inflammation, as I explain below.

If there are foods that promote inflammation, then people like me should avoid them, and eat more foods that are anti-inflammatory. That’s where the Mediterranean food comes in. As is well-known many Western diets contain high levels of Omega-6 fats, in particular arachidonic acid. These are considered to promote inflammation and are found in meat, eggs and high fat dairy products. Our Western diets contain a lot of arachidonic acid. So according to the advice I received, these should be reduced as much as possible. The anti-inflammatory „good“ foods contain Omega-3 fatty acids, like fish – so cod-liver oil really is good for you! – and certain oils. Oils that are particularly good are Linseed (we had that at home when I was a child, but it was only used to grease Cricket bats), walnut oil and rapeseed oil. To my disappointment olive oil is good, but not amongst the very best.

The last advice is to eat things containing something called Antioxidants because they scavenge „bad guys“ called oxygen radicals (who would think that something with the word oxygen in it would be bad for you?). You get your antioxidants if you eat lots of fruit and veg, and whole grain products, and nuts and seeds.

I was delighted with this advice, except it described quite well the way I eat anyway, and I‘ve still got active AS. What can I change?

I suspect that I still eat a lot of unhealthy food, even when I think that I am eating healthily. Ten years ago I visited Japan for 2 weeks.

Vegetable seller in Japan
Vegetable market in Japan
Pasta chef in Japan
Fresh pasta chef in Japan

The food was absolutely amazing, lots of weird greens and freshly made pasta. It was before my AS diagnosis, although I‘d had symptoms already for many years. I remember well how astonishingly energised and healthy I felt. I had no idea why but vowed to eat Miso soup for breakfast from then on. My promise to myself didn’t even hold a week! In the rural area in Switzerland where I live it was hard to find Miso for the soup, and my family preferred to start the day with traditional Swiss breakfasts…

Brunch bei Marlene und Sämi Wyss Rubi, Hagiboden
Traditional Swiss farmers’ breakfast

Maybe writing this blog will motivate me to try again and report in more detail in a later blog, on what I discover. The whole subject of diet is huge, and I find it quite complex.

Recently I went on a alpine trip collecting wild herbs. In the evening we prepared a wonderful 5-course meal with these plants. It was delicious, and again I felt marvellous afterwards. I’ll leave you with a picture of our starter.

Herbs from mountain meadows are delicious
Mountain meadows are a source of delicious herbs

Do I believe that I can be healthy?

The short answer to this question is “Yes, biologicals gave me back my life”. I’m lucky that I can give that answer, but that topic is for another blog.

But many people, including myself, who suffer from chronic disease feel that their medication is not the only important thing. Tragically, for others there is still no medication that really helps. So we search for other ways to find well-being. In my last blog I named four things that help me: diet, sport, managing stress, experiencing beauty and joy.

Healthy Vegetables alexandr-podvalny-unsplash
Healthy vegetables

These are all important for happy living. But do I think that these things can make a difference to my AS? One thing is for sure, I would like to believe that I can influence my own health. I want to feel empowered and to control my disease.

Western medicine is responsible for the administration of medication. We have specialist doctors, who we hopefully trust and confide in. But, with health choices outside our medication they often can’t help us much, because they don’t know. The knowledge is simply not there, and good clinicians will not engage in unproven theories. It is understandable that a doctor who is trained in Western medicine will generally not recommend treatments, which are not scientifically proven to work. In fact, if a doctor believes that an alternative therapy is harmful, which some quack remedies undoubtably are, then she will try to stop her patient using them.

Most of us know lots of people who offer advice about “alternative treatments”, or eating differently,  which sports are best, or how to reduce stress, and so on. And there is no shortage of stuff in the internet, about people who claim to have “cured” AS. We search through the jungle of literature, different alternative treatments, perhaps finding things that really seem to help, but maybe wasting precious energy and money with things that don’t work, or even fall for a Charlatan and make ourselves worse with something harmful.

At the end of the day most of us believe that we have found some things that work for us. One friend with AS drinks a whisky every evening. That’s his tonic. My belief is that I feel worse the next day, if I drink alcohol. But, I still drink a glass of wine occasionally!

Not so healthy processed vegetables! christin-hume-unsplash
Not so healthy processed vegetables!

If there is any serious research on the subject of whether an evening whisky helps reduce AS symptoms, it would probably say it doesn’t, or at best that the evidence is inconclusive. What makes many therapies work, is that we believe in them. I think this is true of many alternative treatments, such as homeopathic pills, which contain no measurable therapeutic substances. It is belief when patients react positively after receiving placebos in clinical trials. Indeed sometimes they even know they are receiving a placebo, and still feel better.

People suffering from serious or chronic disease need hope. They don’t want to feel helpless. They need to believe that they can influence their health.

Alternative therapies, which are not scientifically based, can give this hope. They can harness the power of belief in cure or at least improvement. They don’t have to keep within the boundaries of scientific knowledge, which may make believing in recovery harder. And many people who offer these treatments, do indeed have great powers to make people feel better: about themselves in their body, mind and soul.

A treatment that harnesses both the powers of belief and of science, and gives patients hope would be the best therapy in my opinion. Until the biologicals worked I had no hope; in a state of despair I could not mobilize any healing powers. Shamans give belief and hope, and there are many documented examples of how they can work wonders. But science is not the focus of shamanic healers, and when it comes to HIV/Aids for example, anti Retroviral therapy prevents a lingering death, and nothing else reliably does.

Can medical doctors also harness the power of belief and hope, without losing the science? I believe that they can and should, but that needs a view of the patient as a whole person in a system and in her environment, and not letting the insights of technology and science reduce a patient to a sick organ. Only a person seen in their entirety will respond to hope.

Finally, medicine starts with scientific health research, so that also needs to broaden its perspective. One way in which that is happening will be the subject of my next blog.

And by the way, my TEDx Talk is also finally online. Please do watch it and pass it on to anybody who might be interested.

Thanks to Dr. Jody Staehlin for feedbacks and helping me to clarify my thoughts… and I would welcome your comments on what I’ve written, please feel free to start a conversation about these subjects close to our hearts.