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.