Stockholm Info days - will the EU take over Europes HC?

Had today the pleasure of presenting on the topic of how the EU increases its power over the European healthcare step by step to the Stockholm Regions info days in Brussels. The audiance comments where quite spot on: focusing on the problems with HAIs, expensive investments in radio therapies and the workforce. Non seems to be objecting to my thesis that the EU will take over the organisation of our healthcare in 10 years time.

An active glas of water

An article well worth noticing: "Rising tide of drugs, medicines polluting EU waters" published today in EurActiv. EFPIA there says that: “it is certainly appropriate to evaluate the potential environmental risks posed by medicinal products prior to their authorization".

Personally I´m no chemist so I’m not sure how the lifecycle of a drug looks like but it seems like a given one that we look into how active ingredients are being transmitted into our water.

Vote on rheumatic and musculoskeletal diseases recommendations

At EU Presidency Conference on Rheumatic and Musculoskeletal Diseases the representative from the Belgian presidency Olivier Belle, Member of the Cabinet of Laurette Onkelinx, Belgian Deputy Prime Minister and Minister for Social Affairs and Health, declared that their aim had been to organize a conference where the patient can make their voices heard. They seem to have managed, the patient representatives there was given quite a lot of voice by being presenters as well as workshop leaders. And I think they were heard, the conference ended on a vote on if the conference recommendations to the EU should be on rheumatic and musculoskeletal diseases or only musculoskeletal diseases. The patients mostly from rheumatic disease groups who felt a little bit left out by the original proposal won after a tight vote. Find the final press release on the conference and its recommendations here.

Morbidity figures vs. societal costs

Opening the EU Presidency Conference on Rheumatic and Musculoskeletal Diseases the European League Against Rheumatism EULAR President Prof. Paul Emery remarked that the reason the EU institutions focus so little on chronic diseases might be that they in their work mainly focuses on morbidity instead of societal costs. An important point. Its something well worth reflecting upon as well as trying to change.

Rare Diseases

One more that should take Michael Hubels advice....

From Script:

"First, while by definition they tend to be very rare – affecting fewer than 5 in 10,000 people in the EU and less than 200,000 people in the US – the 7,000 known orphan diseases affect up to 8% of the world's population which includes some 25 million US citizens and 30 million Europeans. This is more than the numbers suffering from cancer or cardiovascular disease," added Dr Wilson. .... According to Dr Wilson, the chance of successfully developing a drug for a rare disease is twice as high as for one targeting a common disease. "

Dr Shelagh Wilson is vice-president of business development, GSK Rare Diseases

European Mental Health

Most Europeans experience positive feelings more often than negative says a Eurobarometer report released to mark World Mental Health Day. It reveals that during the 12 months preceding the survey on self perceived Mental Health of European citizens, 15% of respondents across EU Member States sought professional help for psychological or emotional problems and 7% took antidepressants, mostly for depression or anxiety.

Surveyed was beside the consumption of anti-depressants and mental well-being, things like stigma attached to mental disorders, absence from work as well as perception of job security.

Link to the Eurobarometer report here.

New Bulgarian Health Minister

New Minister of Health in Bulgaria is Stefan Konstantinov who replaces Anna-Maria Borisova, who quit last week over a funding row.

Gastein 4 - Health Literacy

John Bowis former health minister in the UK and former MEP just explained that his diabetes actually wasn’t detected by his doctor until his second hand car dealer pointed that he might have diabetes something that convinced Mr Bowis to go and test himself underlining the need for the individual to be health literate...

Gastein 3 - is really all diseases the most deadly one

European Commissions Head of Unit Health Determinants at DG Sanco Michael Hübel just made a statement I longed for long at the forum session called Chronic Respiratory Disease: A Neglected Epidemic. By now we already had several hours of statements from various KOLs of what COPD is and the need for increased awareness of the importance of COPD among policy makers and others. Hubel took a slightly different approach by stating that he actually think that there is a quite high awareness about respiratory disease and that this fight already is won. He underlined that every day he and his colleagues all disease groups claims that they are the most important (cancer, CVD, diabetes, COPD etc) and then asked the groups to not play each other offs like this not the least due to the co-morbidity issues. He also pointed out that if all claims would be true and added up it would show that we all quite soon will be dead.

Gastein 2: Transparency workshop

There is no money coming without strings attached underlined Alistair Kent from the Genetic Alliance UK in the Elli Lilly workshop on Transparency at the Gastein Health Forum 2010. He points out that this also goes for governmental money and that whoever gives them money they have to look at what these strings are and if they are acceptable. A very wise position.

When I have done interviews on the subject of patient representation in the HTA process the main issue raised was actually not their links to pharma but that after a while they become too much part of the institutions and the boards where they are supposed to be a different voice compared to the civil servants and scientists.

Sadly no governmental represent was on the panel. The commission declined. Given that their agency EMA will revise its current Policy and Procedure, at their Management Board meeting tomorrow aiming at increasing transparency it would have been interesting to have them there to answer a question or two.

I have not seen the formal proposal only the presentation held for their Scientific Committees in June/July under the headline: Key Principles of a Revised EMA Policy and Procedure on the Handling of Conflicts of Interests of EMA Scientific Committees’ Members and Experts. The new ethical guidelines are said to be so strict that any financial support from pharma industry will disqualify participation as expert in EMAs various committees. And if they are transparent with their funding this would not enough since EMA also are looking at the possibility of a “More proactive approach, e.g. in terms of the search for alternative expertise”. It sounds to me like if they don´t like the funding of specific experts EMA aim to be able to go and try finding some else. It doesn’t seem like a good method to ensure independent voices.

I think industry should give money to good causes and if it is part of their marketing strategy: fine. Funding comes and should come from different sources. Also industry. I think patient organisations with varied funding have a better chance of being independent compared to those that have only money from the government.

As Anders Olausson Chairman of EPF pointed out – in Sweden a lot of patient organizations are fully funded by the government and he didn’t want to say that they are not doing their job but underlined that it is very quiet. He then concluded that diversity is very important.

Gastein 1

This year’s Gastein Health Forum gathers 550 participants according to the participant list. It’s mostly the usual suspects like Antonyia Parvanova, Hans Stein, Helmut Brand, Tamsin Rose – although someone pointed out that it seems to be a younger generation representing the pharmaceuticals industry this year. Noticed on the way here that the only one of all the HC people travelling in business class on my plane was the new Director General for DG Sanco Testori-Coggi.

A new start

Updates have been a bit few lately – this is because I joined Edelman as Director Health Public Affairs Europe. As Edelman is a consultancy I just wasn’t sure how to continue. Now 6 month later I feel I´m learned enough about my role, its opportunities and limitations to be able to start again. I will continue to try to highlight interesting healthcare policy developments across Europe. Naturally I´m influenced by the fact that I work on a daily basis trying to help various clients but by the end of the day my views and opinions expressed here are mine and mine alone. What I write will not be due to any assignment nor will the posts be approved by anyone meaning that nor Edelman nor my client should be blamed for my mistakes or statements :)

Spain, ECJ and cross border care

A French citizen resident (as well as insured) in Spain have won a complaint with the European Commission due to the fact that they have not reimbursed his medical expenses for an unplanned hospital treatment. The Advocate General at the European Court of Justice found that if same reimbursement principles doesn’t apply for the Spanish citizens when they travel in Europe then that is not an acceptable restriction (would force the Spanish residents to return earlier than planned if falling ill) and therefore in bread of the freedom to provide services. That this might trigger health tourism the Advocate General finds unlikely since the conditions only apply to unplanned treatments – medical needs. One could hope this would give a hint to Spain that they must give up their fight against all types of cross border care and accept European case law.

AEDs used by the public saves lifes - lots of them

You double your chance to survive a cardiac arrest if you stay in an area where portable defibrillators (the so called AEDs) are common and the public allowed to use them.

As reported by Reuters Dr. Tetsuhisa Kitamura, of the Kyoto University Health Service have published a study in New England Journal of Medicine analyzing information on more than 300,000 Japanese adults who suffered cardiac arrest between 2005 and 2007. The study shows that only 14 percent of the12,631 people that suffered a cardiac arrest in front of witnesses survived and had minimal brain damage one month later. Better odds for those receiving treatment with an AED by one of those witnesses: of those who got an AED shock from a witness it wasn’t 14 but instead 32 percent that survived with little to no brain damage.

And availability is the key: from 2005 to 2007 the rate of those treated by a public AED rose from 1.2 percent to 6.2 percent and cardiac arrest survival was greater in geographic areas with more AEDs.

We have to get away from the perception that healthcare is something mere for the profession to deliver in line with what the government have planned.

The EU says no to financial incentives for prescribers

The European Court of Juistice advocate general Niilo Jääskinen har issued an opinion that condemns financial incentives for prescribers also by state authorities. The background is that the Association of the British Pharmaceutical Industry (ABPI) has complained about the prescribing incentive schemes the UK Medicines and Healthcare products Regulatory Agency in the UK runs. The incentive scheme reward doctors for prescribing specific named medicinal products. This would be against the ban on promotion of medicinal products by gift, pecuniary advantage or benefits in kind to persons qualified to prescribe them. Not uncommon that the authorities try to regulate what the doctors prescribe – in Sweden so called ethical lists are compiled by the regions. Positive and negative lists are still allowed though according to the advocate general. I would assume that this means that the penalty system in Germany is ok. It seems that it’s not forcing the doctors to prescribe the medicines preferred that is illegal – no carrots only sticks…

Granström Grubblar

Excellent new blog on pharma language/info/advertising by Anders Granström - in Swedish

Patient View on Patient Info

Today also FT picks up on the excellent report Patient View have presented on Patient Information.

Rare Disease Day 2010

Today is Rare Disease Day 2010. The theme of the day is "Patients and Researchers: Partners for Life!". Anyone hesitating on patients importance in and for reaseach should read their survey Survey on "European Rare Disease Patient Groups in Research: current role and priorities for the future". Read about the survey here.

Are your medicines safe - hardly if you live in China, India or Turkey

The Stockholm Network have done an excellent comparison of the Drug Regulatory Authorities in five countries; China, Brazil, Turkey, Argentina and India. The aim is to see if the framework ensures that no fake or substandard drugs reaches the patients. The individual regulatory systems are compared in four key categories and capabilities are ranked as: High, Medium or Low. Their findings are rather scare and the report is well worth reading for everyone also since its a good effort in defining how a good regulatory system should be built.

In the summary they conclude: "Counterfeiting is the deliberate production of illegal, unsanctioned and mostly harmful medicines. Substandard drugs, by contrast, can be produced, sold and distributed by completely legitimate and authorised entities who are often unaware of their product being (or becoming) substandard."

I would be curious to see a follow up where they look at all the EU countries to see to what extent substandard drugs can reach patients also in the EU.

The full report can be found here.

Patients' perspectives of pharma - PatientView survey

Patients' perspectives of pharma is a global survey from Patient View. Its the 2nd edition and its interesting to notice some changes. Just to give you some examples:
On the question if pharma activites benefits patients the rate that answered yes have gone from 74% to only 62% - minus 19 procentage in what the companies claims to be their mission! On the other hand there is an increase of 19 procentage in the trust in that pharmaceutical companies pricing policies benefit patients.

With regards to the trust in the companies information about their information only 18% in Eastern Europe find it trustworthy – same figure 18% when it comes to the companies information about their own R&D. Western Europe is less suspicious about the product information 30% finds it trustworthy while when it comes to information about their R&D the figure goes down to 23 %.

The trust in the monitoring of product safety post approval is also going down but only with 6 procentage.

More to be found here.

US health reform

I find it difficult to really understand the US debate on healthcare reform – their current system quite obviously do not work and changes are needed but what changes due to what system errors are not so clear for me. But found today a for me helpful overview of various US think tank, including the powerful Americans for tax reform, positions on the latest proposals here.

I find the statement from Sally Pipes of Pacific Research Institute most interesting: “President Obama's health care proposal released today in advance of the Feb. 25 Summit is more of the same. It relies on increased taxes, mandates, subsidies, and regulation. It will not achieve the goal of affordable, accessible, quality health care for all. The cost estimate will greatly exceed the $950 billion over 10 years and will most likely be in excess of $2 trillion. All Americans will face higher taxes and quality will decline. Ultimately, this will set the stage for a total government takeover of our health care system-a single-payer, Canadian style system which I believe is the long-term goal of the President."

If she is right and Obama and his advisors have decided to not form the new system based on the good Dutch reform experiences but on the single payer systems in Canada and the UK for example they really should rethink. The Health Consumer Powerhouse various index over healthcare systems outcome from a consumer point of view shows systematically over the years how the UK and Canada do deliver below the expected standard in Europe.

But its important to see and work with the problems of insurances. The Economist recently published a good overview that you find here.

28th is the World Rare Disease Day

The aim is to help raise awareness for patients, families and carers living with rare diseases worldwide. In Brussels a workshop is held on March 1st on the topic of Bridging Patients and Researchers' to Build the Future Agenda for Rare Disease Research in Europe. More info about activities in various countries and how you can help can be found on www.rarediseaseday.org/

A nudge from the King

When checking out from our hotel in Jordan we have to let them know if we don’t want to pay 1 Dinar to the Kings Cancer fund. A good and well needed nudge given that everyone seem to be smoking in this country. I would like to see more of nudges like this – like it more than the European model where everything is assumed to be the state responsibility. Better when the authorities point out what should be done instead of just doing it them self.

All these events - so little impact

There is a lot of talk in Brussels about patients: patient empowerment, patient safety, patient information and patients’ rights. I think the one liner of the day is: we have to put patients at the center of things. This may be just talk, but there is a lot of it, as there is a bottom-up pressure for change. So on 23 February the think tank Stockholm Network will hold a conference under the headline Are Your Medicines Se? Its aim is to address “the serious problem: ensuring their safety for patients”. This is a smart move, as most agree on the importance of patient safety. Then next on 24 February the European Voice Health Check Debate on “The right to know? Should information to patients be restricted?” take place.

Now its starting to become controversial, but as long as the information is objective and preferably given by physicians or the EU, most people will say that patients should indeed be allowed more information. Well it would be surprising if they did not agree that patients who are more health-literate will manage their health better.

So safe and informed that seems to be ok with all. But on March 2nd when then approximate same (Brussels isn’t that big) crowd gather again– I don’t think it will be so cosy..

The topic of German Liberal MEP Jorgo Chatzimarkakis Life Circle meeting is “Patient Empowerment – a New Paradigm in Disease Management”. This suggests the pressure is on. Discussion at the Life Circle event should be lively, at least if Member States’ representatives from the Member States show up and participate. Not necessarily always the case – when the EU Commission last year arranged a Patients’ Rights day the room where remarkably free from health attaches.

Patient empowerment was accepted without discussion as something positive until recently, but it seems that in the new financial situation governments have gotten cold feets since they assume it would mean higher costs. This questioning of if patient empowerment is really desirable seems to have begun at the Czech presidency conference on the financial sustainability of healthcare in 2009. During the panel debate on “Defining Sustainability in Health Systems, Josep Figueras, Director, European Observatory on Health Systems and Policies as well as Melinda Medgyaszai, Secretary of State for Health Policy, Ministry of Health, Hungary. Maria de Belem Roseira Pina, Chair of the Parliamentary Health Committee, Asseimbleia da República, Portugal all questioned if all demands from patients should really be met.

After this at various conferences fears have been raised that patients may increasingly seek healthcare cross-border, thereby undermining the finances as well as the principle of the European equal (meaning everyone should have the same thing) and solidaric healthcare systems have been raised until finally the Spanjards managed to ensure a blocking minority for the Directive of Patients Rights on cross-border care. There are even fears that patients may demand treatments that are not good for them.

This might all be due to the financial crisis but I don’t think so. I think that its also because they really do not like to let go of the power they currently enjoy of being able to tell patients where and when and whether they should receive care. In Europe healthcare is still provided only to the extent that governments think it will benefit society as a whole. Think-tanks, a few politicians and the media might think differently, but they still have a long way to go to convince the Member States.

More health equity?

The www.equitychannel.net, is a new online community where you can get updates on the EU policy developments affecting health and equity and participate in the the Equity Channel Forum. The Equity Channel is a new project aiming at bringing together stakeholders and bodies working in health related sectors with the goal to improve health equity. The project is initiated by EuroHealthNet - a Brussel based network of public health and health promotion agencies in EU countries.

Off Topic - What´s in the Milk?

New column in L´Anglophone.

House of Cancer Self-Help in Bonn

I learned from the latest HSCNews Bulletin that Eight German patient organisations that specialise in cancers of various types have decided upon a new way to work together. Realising that really effective networking demands quite a lot of contact they have now offices in the same building in Bonn creating a House of Cancer Self-Help. This way they can “encouraging each other in work; coming together for the preservation and improvement of the quality of medical and psycho-social care; developing common approaches to common concerns (and to representing them jointly in public); and working together to strengthen the ability of patients to self-manage their conditions.” The House of Cancer Self-Help will also run four patient conferences a year in Germany and will work to ensure “that the patients who are attending the conferences have sufficient time to question the expert speakers”. More information can be found here.

It is a winning concept – in Sweden a lot of the patient associations share a couple of corridors in the same building in Stockholm where also the main umbrella association have its head quarter. I would guess that over the year this have meant quite a lot with regards to information exchange and knowledge building for example for the smaller organizations with maybe only one person working for them.

Social networking seems to still need to be also taking place in real life or as some now say: outside of keyboard. Even if new media certainly enables and helps!

Pfizer no 1 on patient information 2nd year in a row

PatientView have conducted a global survey of 655 patient groups from 46 different countries on the topic of patient information. The findings where partly presented at the Patient Information by the Health Consumer Powerhouse seminar hosted in the European Parliament by Christofer Fjellner last week.

One of the questions asked where: How well do you believe the following companies performed in 2009 in their ability to provide information to patient groups? It turns out that Pfizer takes the lead for the second year in a row. On second place comes AstraZeneca (+6) and on third place Novartis (-1). The ranking do seem to partly correlate with how well known the companies are and its therefor maybe not surprising that out of 15 companies on shared 13th place comes the rather unknown Amgen and Boehringer-Ingelheim. The full list can be found in Alex Wykes presentation here.

A little self promotion

German Aerzte Zeitung have written about the Swedish Presidency and interviewed me.

The question I hope Dalli gets at the EP hearing

The most important change in EU Health care policies have not been done by the Council or the Parliament but as I concluded in my previous post about the Swedish Presidency they didn’t really impact future healthcare policy during their last 6 month of power. Instead if anyone in the future will say that in second half of 2009 this happened and it really changed healthcare policy it will not be something that the Presidency did but what Barroso did when he moved several responsibilities from DG Industry to DG Sanco and appointed Dalli as health commissioner. The appointment of someone with a background in finance etc could show to be very important for the development of European healthcare policy.

This week Dalli will be heard/questioned in the EP. The answers will give us the first indication towards what direction the EU commission now will take in the area of public health. Ie if the changes will be more than formalities.

I'm quite sure most of the questions will be on the Directive for Patients Rights at cross border care but that also the Patient Information issue will be raised. One or two disease areas will most likely get their 15 min in the spotlight. Business as usual for the main part.

But what I hope someone will ask is:

- Will DG Sanco now take a real responsibility for the facilitation of a sustainable European health sector with empowered healthcare consumers trusted to really take their health into their own hands - instead of merely in all healthcare policy issues take the position that patients needs to be safeguarded and taken care off.

But that will most likely not happen. Not yet. Maybe next time. When the effects of the organisational changes starts to set in.

What did the Swedish Presidency do for your future health?

I was asked to comment on the Swedish Presidency by a journalist recently and after having given it some thought, looked at some of the material released this last 6 month and talked to a couple of people I must come to the conclusion that there have been no major achievements impacting the life of European healthcare consumers and professionals. But that we might see some changes anyway.

So why didn’t the Swedish Presidency rock the boat more? I see 2 major reasons for this besides the Swedes being Swedes – more about this in my LÁnglophone column from early autumn.

1. The first reason being structural: We had a rather weak EU commission since it was to be exchanged, for long waiting to be relieved. Also it didn’t help that the presidency in waiting (Spain) was working quite active and successfully against several of the Swedish key issues. Not so surprising given that the ministers do come from very different political backgrounds. We saw this division for example in the case of the Directive for Patient Rights. More concretely this meant that the Spaniards managed to gather a blocking minority partly by promising better deals during their presidency. I.e. that under their presidency governments would not have to hand over so much power to the patients.

2. The second reason is the Swine Flu - Now I think media and politicians alike over reacted – 1. – but no matter what you think about the focus on this issue one cannot deny that quite a lot of time and efforts by key healthcare people have been spent on this unexpected situation, time and focus that otherwise would have been spent on other issues. But what I can see the efforts around the Swine Flu showed that when needed the international community really can act fast and united. If the learning’s from this is used well by those that would like to see more international co-operation on health issues we might see surprising effects in other areas as well.

In one area where for example I do not think Industry expected or even still really understands what happened with is the info issue, i.e. the EU commissions' proposal for Information to Patients – a part of the Pharmaceutical package. It seems like still some analysts believe that if only industry says ok to pre-vetting then the issue is solved. It’s because they have not understood that the Swedes themselves have put the very controversial issue on hold not because they agree with countries like Spain or France who thinks that the EU Commission proposal is to liberal – Quite the opposite. The issue the Swedes have with the proposal is that their constitution on freedom of speech doesn’t allow for censorship – governmental pre-vetting of information. If Industry thinks this is ok sort of doesn’t help:) Makes me happy that my government stands up for principles.

Still, in some areas there have been achievements: On MRSA for example where the commission now has been asked to come forward with a proposal for new incentives for development of new antibiotics by 2012. Small steps have also been taken concerning organ donation and alcohol policies etc. And on organ donation Spain will probably do all they can to find a solution. Spain is best in the class and will probably take the opportunity to shine in this field.

Another achievement that might be considered a big step forward for public health is the council recommendation to the Member States to introduce smoking restrictions in public places. But I think this was a given and something they just could not loose. I firmly believe that smoking will be banned altogether. It just doesn’t make sense to let people destroy their health and our common healthcare budgets by allowing smoking. Would we have an insurance system where the fees could be adapted to smoking habits or they paid themselves for their healthcare I think they should be free to kill themselves? But as long as I pay…

A small issue but with high importance is that the Swedes managed to get the council to support the European Court of Auditors very critical report on DG Sanco's work with the Public Health Program 2003-2007. This is important for all future efforts on EU level. Targets for all efforts needs to be set. There will have to be focus. We can already see the effects in for example the Work program published by DG Sanco in December. In short the budget is tighter, the focus clearer and the demands on output orientation higher. And warnings are raised that last year already only 20% of the applications where granted – this year it will be even fewer. Having previously seen some excellent but also some very, very basic work being funded in all possible and impossible areas I think this is great step forward.

On a final note most interesting is maybe that now finally the Swedes are free to say what they want. For quite some time also before their presidency they have been diplomatic in the hope that this would enable them being good chairmen. Now they will have no such restrictions and I would hope this means they can finally really take a stance for patient’s rights to choose etc. This is areas where the current government back home in Sweden has been very active. I would think the Spaniards will have quite a match with the Swedes since they do have quite different views on who should be in power in healthcare. Sometimes it's said that health issues we can all agree upon but when one looks at the Swedish and Spanish health policies it becomes quite obvious that one country thinks that the patients are taxpayers and should be in charge and that the other country believe that it’s the role of the government to ensure best possible care for all.