What only the EU can do with regards to HIV/AIDS

In the yesterday launched Citizen's Summary of the EU Comms Communication on combating HIV/AIDS I learn that: “Only the EU can”:

"• collect data and monitor conditions across Europe, giving national authorities more information on which to base their policies "

I thought the HCP HIV index as well delivered on this one and the DG Sanco actually participated at panel of the launch seminar so they should be aware of the work.)

"• provide political support to member countries and stakeholders across Europe to:
o improve access to prevention, treatment, care and support
o reach migrants from countries with a high prevalence of HIV
o improve policies targeting the populations most at risk."

For example patient associations like the EATG do this and also other stakeholders. Took a look at the EATG site and they recently communicated advice on what the Baltics should be doing to improve as well as arranging several networking meetings.

Not to mention that given how political controversial these issues still are I think that maybe there are other more effective organisations than the big consensus machine called the EU Institutions.

Hospital Acquired Infections - 37000 deaths per year in the EU

Hospital Acquired Infections (HAI) is an increasing problem. The European Centre for Disease Prevention and Control (ECDC) estimates that every year 4.1 million patients, equivalent to one in twenty hospitalised patients acquires infections. They EU Commission also estimates that every year 37,000 patients dies directly because of by hospital acquired infections and as that isn’t enough; an additional 110,000 deaths yearly is thought to be due to contributions to such infections.

So its not strange at all that the EU Commission and ECDC works quite intense with the subject and have both released a Communication as well as a proposal for a Council Recommendation on patient safety that deals with HAIs as well as other topics. Same goes for their Patient Safety & Quality Care Working Group with members from NGOs, Member States and the Institutions. More information about their work can be found here. One find if clicking on the meetings some quite interesting presentations.

Now that’s high level for those on the field a good overview of links to various tools, from guidelines by the Royal College of Nursing in the UK for the professionals to patient adapted versions that all can help preventing HAI´s can be found here.

And worth highlighting is this piece that I picked up from an earlier comment on a similar subject made by Andrew Preston from Harm Reduction Works.

2 Swedish sites ranking and discussing healthcare

Om Vård is an excellent independent site enabling Swedish patients’ choice via given the patient information about waiting times and quality outcomes as well as allowing them to both rank their healthcare providers and compare with the 3 closes alternatives.

Also interesting is the new blog initiative from some people with a centre right background working in the Swedish Governmental administration, the Parliament as well as local politics. All of them in one way or the other working with healthcare or social insurance issues. Gives a hint of where the current Swedish majority is heading when it comes to welfare issues.

Both sites are in Swedish.

Rate your GP in the UK

Physicians have a tendancy to claim that its unethical to rate hospitals etc. For me its obvious that all services needs to be rated and that patients have a right to know what doctors that just do not deliver. And in the UK the NHS now realised that this is the way forward and its possible there to rate ones GP practice. All one has to do is type the postcode, select who to rate and click to add ones comments. Interested - click here.

Omnium rerum primordia sunt dura - also for the EU Commission DG Sanco

The European Commission´s DG SANCO launched an on-line discussion on European health and consumer policy to mark its 10th anniversary. This meant that a channel on the Debate Europe forum was open in all EU official languages 14 September to 9 October 2009. The aim was to “provide Europeans with a good opportunity to make their voices heard on health and consumer policy and share their views with others. They will be able to vote in an online opinion poll and learn more about what the EU is doing in this area.”

Not sure about the learning part – I posted a question on the 21st of September and it was never answered. Maybe already the 21st they had given up on the possibility to pull this off?.

Because for discussion; there basically where none. Most well visited seems to have been the English section – almost 300 postings. Most language sections ended on under 10.

But lets hope they do not give up – running an online fora is a good idea but having it online during such a short time spam makes it more or less impossible to get the word out and discussions going. Better luck next time – with some small changes like having a moderator answering questions/trying to have one discussion and not one in each language/ maybe even having their own staff participating.

They could start by using Swedish MEP Gunnar Hökmark´s recepy for success: If everyone recruits one we will double. For a organisation of Sanco´s size this would give around 900 participants.

Now I only wait for the event where the conclusions will be presented ( a special anniversary seminar) – its promised for the 23 October 2009. This one is said to be attended by current and former Commissioners, stakeholders and the media. And 5 of the participants in the discussion – having scanned some of the postings I really look forward to their announcement naming the lucky ones.

Today is the Global Hand Washing Day

It’s a bit sad that campaigns promoting hand washing properly is still needed. Well at least when those needing the info are educated healthcare professionals as with the Clean Your Hands campaign that I written about before. But I join in anyway this day since the London school of Tropical Hygiene have proven that information about hand washing does increase the frequency. And the goal of this year’s campaign for hand washing with soap is to train children. So if you want to join in on the effort some more info on the benefits of hand washing with soap from the site of The global Public-Private Partnership for Handwashing:

”UNICEF estimates that diarrhea kills one child every 30 seconds. Scientific research shows that hand washing with soap prevents disease in a more straightforward and cost-effective way than any single vaccine. Hand washing with soap thus represents a cornerstone of public health. It can be considered an affordable, accessible “do-it-yourself” vaccine.”

If you want to join in on the Global Handwashing Day this is the campaign site.

The Timbro newsletter on Swedish welfare reform

Just received the latest newsletter on welfare reform from Timbro a swedish think tank.

In the newsletter one find interesting links to for example reports showing that staff in privatedly owned healthcare providers are more satisfied compared to those working for the governmentally owned ones, Jacob Arwedssons new book on Health Technology Accounts and a range of articles on the consequences of allowing for private profits in healthcare.

US Health Reform Hub - for reforms with a patient-centred approach

Curious about the discussions in the US about health reforms from a market based point of view? Then you should take a look at the Health Reform Hub (www.HealthReformHub.org) a new site that have been launched by the Galen Institute . The goal is that the site will serve as a central access point for discussions and the latest news and information about ideas for reform with ”a patient-centered approach”.

Links updated

Luxemburg best on HIV care - Sweden and Italy among the worst

A couple of year back when I still worked for the Health Consumer Powerhouse we were in discussions with the World Bank about doing an HIV Index. I think this is one of the more obvious areas for the HCP to do an index over since it’s an area where so many more factors needs to be taken into account beside the pure clinical ones. It really is an area where you need to take a consumer point of view when measuring.

When I then in Gastein a year ago asked Armin Fidler what happen with the World Bank index he explained that one of the member states had blocked the report since they didn’t like the findings. And that is what happens from time to time when national agencies as well as the international ones like the WHO, the World Bank etc produce material. Its a common missunderstanding that their work is objective. Its not - they work in line with the governmental political agendas. This is one of the reasons why it’s so essential that independent private initiatives like the Health Consumer Powerhouse exist.

If nothing else it’s proven when today they do what they World Bank could not by publish their Euro HIV Index ranking the performance of the European healthcare systems with regards to HIV care.

The number of the people living with HIV increases in every member state of the EU. But I do not think that the way to deal with the increase in risky sexual behaviour is to prosecute for unintentionally and unknowingly transmitting the virus as is the practice in for example Denmark and Germany! A special problem is that harm reduction strategies in prisons often is just talk not being implemented. But maybe even worse is that discrimination of people living with HIV is frequent at work and in schools across Europe!

Luxembourg wins the ranking among European 29 countries with 857 points (out of 1,000), followed by Malta (791) and Switzerland (775). Sweden (24th), Italy (27th) and Greece (28th) should be especially embarrassed about the result! You might discuss the relevance of automatic testing the few TB cases you have in Sweden for HIV but its quite clear that the situation with regards to rights is not good. And looking at the score for Italy one gets the impression that HIV is just not on the healthcare agenda. They end up in the bottom by scoring pretty mediocre all over.

The European HIV Index measures 28 indicators, covering 4 sub-disciplines that are key to HIV: Involvement and rights, Access, Prevention, and Outcomes. Each sub-discipline is weighted for importance in contribution to the overall Index score. The full report, the matrix and press material will be available on the http://www.healthpowerhouse.com/ site.

Use bad or good news to raise money for charity?

According to the the FT supplement How to Spend It the UK Prostate Cancer Charity have proven that bad news does not encourage donations to good causes. I am not sure it is that easy. The organization sent out letters to the 33000 supporters. 50 % of recipients got a letter explaining that due to the recession a decline in donation was expected thereby risking important research. The other 50 % got a letter explaining the achievements that had taken place due to their previous donations. Guess what: Those that got the positive news about what impact their money had gave in average 45 % more compared to those that had gotten the bad news mail. I think the others got an excuse not to continue giving. I’m not surprised that a letter stating that ”we know you are having a hard time but please give anyway” result in less money than one playing on the pride of donors ”you are so important and what you do matters”...

The Europa Donna - Breast Health Day

Europa Donna have launched a campaign aiming at increasing awareness of breast health leading up to the October 15 Breast Health Day. Their key message is that physical activity can be a lifesaver since 10-16 % of all breast cancer estimates originate from inactivity. As breast cancer is the most common cancer in women worldwide with an estimated 430.000 new cases, only in Europe every year their campaign if successful could potentially save 40.000 women every year from breast cancer. My favorite from the campaign material is the little checklist available in the leaflet “More active today for your breast health tomorrow”.

I love checklists and hands on fill out guides that encourage immediate action. It engages and involves much more than the usual one-way information. They also give advice on 7 things women can do for their breast health. One of them is sending your friends this card.

Now interesting is that self-examination is not one of these 7 points. In Sweden the organizations active in the area still promote self examination since it engages and involves women but research at Danish Rikshospitalet by Peter C Gøtzsche do show that it is mostly damaging and leading to unnecessary surgery and worry. When doctors start talking about unnecessary worry I usually have a problem with anyone who think we have an over consumption of healthcare or that patients should not worry about their health. They should.

Doctors on the other hand should be able to ensure that there is no unnecessary surgery - also when women worries.

Benchmark against Nintendo in order to enable more health investments and increase choice?

“The opposite to focus on the citizen seems to be failure” Robert Madelin Director General at DG Sanco opened up at the MedTech Forum 2009 Summit. He then continued by explaining that key for the future will be to look at how companies like Nintendo build their business. This since that in the future funding will originate “not necessarily from health budgets but from peoples willingness to pay”.

Spot on. I must admit I think its strange that everyone seems to manage to find money for their own mobile phones but when it comes to even more important things like healthcare products and processes these essential products needs to be funded via governmental budgets. Since governmental budgets per definition are limited this is must be putting a effective cap on citizens health investments.

Dr Miroslav Palat seemed to also take special notice of Mr Madelins Nintendo statement taking the discussion a bit further by pointing out that we all now agree upon patient empowerment but that “the we still need to hear how are we going to open up the healthcare system as a true market for the patient to make informed choices?” And right he is. Choice is a key component in real empowerment and how can choice really be implemented as long as healthcare is a centrally planned service to the citizens by the government? Not all believes in choice since some citizens will fail when making their own choices but as former UK Health Minister and MEP John Bowis stated as a response to Mr Palats questions: “ those that make difficult choices makes a lots of mistakes but those that avoid choices makes the biggest mistake of all”.

Maybe because he´s 5 years mandate that cannot be prolonged have come to its end Mr Madelin he could be quite outspoken and when he responded to Dr Palat he explained that there is clearly people in Brussels that hate the concept of market in healthcare but that for him the Directive on patients rights at cross border care is clearly a step forward in this direction. He continued that the reality is that this part of empowerment is growing.

Lets hope he is right since the only ones that really will focus on the citizens are the citizens themselves.

ECJ decision on GSK vs European Commission on parallel trade of pharmaceuticals

The European Court of Justice yesterday told the Commission, see the full decision here, to review the GSK case on parallel trade. The background is that GSK in Spain have had two tariffs to limit parallel trade. Now the court have clearly stated that efforts to limit parallel trade is illegal but that the Commission should have done a better investigation on GSK application for exemption in this case.

Parallel trade as I see it is when it applies to jeans or wii games a natural development of the market. I would have expected the European Commission to grant an exception in this case since when it comes to the area of pharmaceuticals the situation is slightly different compared to the products paid for by the consumers directly. Pharmaceuticals prices are regulated by the governments and some countries can afford or are prepared from cultural geographical etc reasons to pay more than others. And they should in order to facilitate for poorer countries to get a better price. This means that richer countries healthcare systems should not be allowed to free-ride on these countries lower prices. See my earlier blog on differentiated pricing here.

Some of the legal comments can be found here from Morgan Lewis and from the EU law blog here.

Virtual Museum of Medical Technology

Is a seriously nice new site. Visiting the museum I learn about Nano Technology and what Replacement Organs are as well as what various medical devices there is to support Diabetes care. Still the museum needs more floors covering more disease areas but its a very good foundation to build on.

Eucomed the European Trade association for Medical Device industri pays for it.

Interview with Dr Antonyia Parvanova MEP

Dr Parvanova was appointed member of the European Parliament by the Bulgarian Parliament when Bulgaria first joined the EU; she then failed to be elected but the electorate probably realised their mistake and she did manage this time around. She have been assigned Vice-President of the Alliance of Liberals and Democrats for Europe (ALDE) and is a Member of the Committee on the Environment, Public Health and Food Safety (ENVI) as well as the ALDE group coordinator for the Committee on Women's Rights and Gender Equality (FEMM).

Starting our discussion on the dossier on health inequalities she notices that it might be postponed a bit but it is a very important initiative. The outcome of this initiative will influence several if not all other healthcare related files in the EU. This area in combination with Rare Diseases is certainly the area where she will create the most discussion during the current mandate period. Dr Parvanova wants to ensure a common fund to cover for specific rare diseases in order to reduce the inequalities in the EU. It’s very hard not to agree that if Europe claims solidarity something needs to be done as it’s certainly not the case that all patients with rare diseases gets the appropriate treatment in all member states. No surprise given how expensive treatments of rare diseases can be. Even a wealthy country like Sweden has a burden sharing mechanism to ensure that all regions can afford expensive treatment to all patients in need. But I’m not sure I agree that a EU fund for treatments of rare diseases is the right way forward – for me the best would be to prioritize healthcare within the use of cohesion funds (funds to help poorer parts of Europe to catch up). That way those countries in need of support could get resources without any risk of the EU taking over the responsibility for financing of treatment of rare diseases in the long run. Unfortunatelly Dr Parvanova explains that this is not possible since these funds are for infrastructure investments and that therefore her idea needs to find a mechanism that allows for investment in individual patients for specific period. Well I look forward to see what she comes up with.

She points out that there are several other interesting issues on the agenda that she will get involved in such as Diagnostics, the role of tobacco as primary prevention for example cancer as well as organ donation.

My main curiosity with regards to her future activities beside the inequality dossier though has to deal with the fact that when Dr Parvanova last sat in the European Parliament she was a driving force in the area of Patient Rights – an issue she intends to continue to drive. Not the least because she will be shadow rapporteur for the Directive on cross border care is on the table although that directive also comprises other issues. But she explains that to her patient rights goes beyond this – over quality, access, affordability and safety all the way to information about medical services.

Another area of great concern for her is IVF. She explains that her interest is based on the fact that reproductive health is an area of huge differences in the member states. Invitro fertilisation is for example often not recognized as a speciality because as in Bulgaria it is only offered by private health providers. And reproductive issues are medical problems – to not help is according to Dr Parvanova to discriminate patients.

When our meeting is ending, I get a quick reminder of how down to earth and practical she is. She underlines the importance of a common reasonable approach to the swine flu. She says it is an important issue but the approach has to be consistent with other efforts. For her it is equally important with the normal flu vaccination for elderly. I must say that I understand her hesitation to the costs as she underlines that it’s not only to buy vaccines, the administration of the vaccines needs to be taken into calculation when decisions are made.

In conclusion I realise that she has as high ambitions for her mandate this time as the last time around and will be one of the most interesting MEPs to follow – where she goes things starts to happen. Maybe because she is not only nice and engaged - she knows her stuff as well.

Off Topic - Educating the Eurobrats

New column in L´Anglophone.

New danish site for pharmaceutical information to patients

Today a Danish site for patients about all pharmaceuticals on the danish market as well as discription of 200 diseases including treatment options goes live. Its a project by the Danish Pharmaceutical industry and its really good! Seems like the current European legislation on pharmacuetical information do allow for quite good online info already today… Take a look at it here.

Court of Auditors critical report on DG Sanco's work

Just listened to MEP Christofer Fjellner in the Budget Control Committee in the European Parliament. He introduced the report, previously mentioned here, to his colleagues as Rapporteur on the European Court of Auditors very critical report on DG Sanco's work with the Public Health Programme 2003-2007. The amazing thing was that after his introduction and a short statement from the Court there was not one single question or remark! Well if the budget control guys’ dont realise how important it is to get the public health work in shape I hope Christofer manages, as he intends to try, to get the report discussed in the ENVI committee.