Presentations at event “Can we afford our medicines?” 12-11-14

Here you can find the slide presentations given at the event “Can we afford our medicines?” that took place on November 12th, 2014 at the European Parliament.  The webstream of the whole event is here: http://greenmediabox.eu/en/ct/62-Can-we-afford-our-medicines- . Thanks to all who made the event a big success and we hope it will be a turning point in the fight for universal access to quality health treatments in Europe.

MDM Intervention FBerdougo @EP Medicines

Rohit Malpani, Access Campaign MSF

James Love, Implementing Delinkage, Cancer prize fundEU Parliament 12 November 2014 TA

Gonzalo Fanjul, IS Global

version finale Teresa Alves

 

Ten bullet points on the upside down world of pharmaceuticals, prices and access

CAN WE AFFORD OUR MEDICINES?

Notes from introduction to “Can we afford our medicines?” event in EP, 12-11-2014

1. Transparency: Today there is no transparency on prices EU states pay for medicines(taxpayers often don´t know what their state health service is paying for each medicine), no transparency on scientific research/clinical trials or safety and efficacy, nor on R and D costs nor is there clear traceability of the costs of producing a new medicine, We´re in the dark, middle ages. Doctors don´t know, Patients don´t know, Politicians don´t know, Taxpayers don´t know.
2. How many times do we pay? Three is a massive privatization of public investment in research. “I already paid for this drug!” is a reality. Where is the public return on investment in research if there are there no strings attached to our investment as far as IPR, affordability or knowledge exploitaiton? We often re-buy taxpayer research at an astronomical cost and end up paying for a medicine 3,4 or 5 times (taxes, co-payment, medical insurance, tax evasion of pharmaceutical companies, paywalls around public research results, ..)
3. Public Good, not just a commodity: Health is a public good, health knowledge is a public good, part of the global commons. Is access to medicines mainly a competitive business issue or a public health question?
4. Is the present system efficient? Marketing costs dwarf research, most new drugs have little therapeutic value (me toos, evergreening), cost of not sharing data of clinical trials, overprescription and underprescription are two sides of same coin. Safety and efficacy of medicines are often hidden. There is great over-lap and waste in research, marketing and deception.
5. Corruption or unethical practices are massive: Pay to delay practices to prevent generics on market cost public health systmes billions. Massive perks for doctors, unethical lobbying by paid pseudo patient groups, massive tax evasion by big pharma (where is the so called “trickle-down” benefit for all?) and thousands of lobbyists in Brussels that work to place pharma profits ahead of affodable public healh needs.
6. Monopoly and Malice: Patent monopolies do not fuel innovation but often prevent it- thickets, scientific enclosure, fear of sharing, scientific manipulation. In Energy and Telecom: measures for structural unbundling of dominant positions have been proposed or taken in market in favor of consumers, competition and lower prices; but EU patients have no such advantage. There are clear dominant positions in the pharma market: Direct or indirect control of R and D, production, IPR portfolios, marketing and sales- end up moulding and manipulating of whole cycle.
7. It is the EU´s competence!: It is often said that health and pharmaceutical pricing are not direct EU competences but indirectly they are. Fiscal austerity, Transparency, IPR policy, EU innovation and research, non-discrimination..
8. Evidence based EU policy: No econometric studies on different innovation models No impact evaluation of EU promoted austerity cuts in health budgets, No provision of how Europeans will pay skyrocketing medicines expenditures of an aging population and more expensive drugs, No EU project to share health technology assesments. No price caps considered, No socially responsible licensing proposals for EU research..
9. De-linkage and open source dividend: Separate R and D costs from final costs of medicines through prizes, patent pools and open medical research. Fund an open source dividend to incentivize sharing of scientific research. Promote socially responsible licensing when public money is involved.
10. If it is not good for the majority, it is not good. Marginal costs of producing medicines are very low, universal access is possible if there is political will to break monopolies. Access is the best policy: If it doesn´t work for the majority, it simply doesn´t work.

The problem of unaffordable medicines and the need for health-driven innovation are not on EU agenda

Due to the high cost of medicines, millions of citizens of EU member states cannot receive proper medical treatment for a number of very serious illnesses. Practically half of the EU population is excluded from the most effective treatments for cancer, Hepatitis C and other life-saving medicines simply because they (nor their public health systems) cannot pay for them. Despite this fact, there is no clear political reaction to this situation, not even an organized debate nor a coherent search for policy proposals, studies or pilot programmes. Surprisingly, this situation is rarely considered a political and moral scandal. Health inequality is not usually considered any less acceptable than general social inequality. Unfortunately, EU supported austerity measures that have forced health-care budget cuts have made this bad situation even worse.

After many meetings this week with the health attachés from a number of important EU member states that are members of the Council´s working groups on pharmaceuticals and public health, I have reached the depressing conclusion that to date initiatives on the price of medicines and new health-driven innovation models are practically non-existent in the institutional sphere. None of the major EU member states recall ever having discussed any innovation or pricing alternatives to the Pharma patent monopoly driven model. This is in a context in which a number of these same countries admit that their states either cannot afford to buy some of the best life-saving treatments or they are forced to ration them to a small percentage of the patients who need them.

It is surprising that while there are legal EU price caps on telephone roaming rates and data roaming, no one proposes controlling prices of life-saving medicine prices. And it is not just a question of competences but of political will to place health first ahead of the dominant “growth, jobs, innovation” rant.

While there have been some political and parliamentary rumblings that complain about the high price of some medicines, namely the Hepatitis C cure Sovaldi, there are no concrete, viable proposals on the official political table that could bring down the price of life-saving medicines and/or promote new biomedical innovation models driven by real health needs. On the contrary, there are a number of serious proposals on the EU short-term agenda (medicine price Directive, TTIP, greater IPR protection, “personalized, innovative medicines”..) that could even make it more difficult in the future to bring down the price of medicines or introduce health-driven innovation models.

“Access to medicines” is usually understood by the European Commission, EU member states and other policy makers as meaning making new products “available for patients”, getting them “on the market” or “over the regulatory hurdles”, never about being affordable. Aside from some occasional rhetorical, lip-service about patients needs, pharmaceuticals is seen primarily and secondarily as issue of “growth, jobs and industrial innovation” rather that a public good. No one at all contests the constant official EU equivalency of stronger, longer patent protection and data exclusivity with “innovative medicines” nor objects at all to the coupling of high medicine prices with the high research costs of a new generation of “personalized medicine”. There is no consideration of protecting the “public return” of massive public investments in biomedical R and D nor preventing the privatization of public health-related knowledge. The pharma mantra is so pervasive that often European Commission officials from DG Enterprise, DG Research and DG Sanco are “more catholic than the Pope” in defending industry orthodoxy on IPR, transparency and high prices. A rather minor example: the EU policy to promote “open data” research with EU finding has just excluded any research related to health because it would be “too controversial”. The ideological, regulatory and legislative capture by the pharmaceutical industry is almost complete in Brussels with very few exceptions such as the inconclusive, partial victories such as the Regulation on clinical trial transparency.

A few issues now on the table in the EU Council and in the European Commission:

  1. Joint Procurement: France has proposed pooled procurement solely to purchase Hepatitis C treatment Sovaldi. It is not at all clear if this will ever materialize. A number of countries have shown an interest in this initiative but there is a reluctance to share information and many countries such as Spain or France itself have gone on to negotiate secret agreements with the company Giliad on their own. The success of this initiative is very doubtful because of the lack of openness.

  1. Transparency of prices: The Directive on medicine prices (now being considered by the Council) is all about the Pharma industry having access to government procurement processes and health technology actions in each EU member state so the Pharma industry can be able to take action against the lowering of prices on “innovative medicines”. It is not at all about the publication of the real prices each member state pays Pharma for medicines. These procurement prices are kept secret. As a result, the pharmaceutical industry knows perfectly well the prices and conditions negotiated by each European state while each government negotiating prices is totally in the dark about the prices paid by neighboring European countries. By “divide and conquer” the industry is at a great advantage in negotiating prices.

  1. TTIP and pharmaceuticals: like everywhere else, the pharma wish-list – all oriented to market-driven innovation, high prices and higher IPR protection is very present at the negotiating table for both EU and US negotiators.

“Can we afford our medicines?” November 12th event.

‘’Can we afford our medicines?
The access to medicines crunch in Europe”

European Parliament (room A3G-3), 12 November 2014, 12:30-15:00

We would like to invite you to the conference “Can we afford our medicines? The access to medicines crunch in Europe” under the auspices of MEPsNessa CHILDERS (S&D, IE), Beatriz BECERRA BASTERRECHEA (ALDE, ES), Kostas CHRYSOGONOS (GUE/NGL, EL), Michèle RIVASI (Greens/EFA, FR) with the support of the TransAtlantic Consumer Dialogue (TACD), Salud por Derecho, Health Action International (HAI) Europe, Doctors of the World – Médecins du monde International Network, Universities Allied for Essential Medicines (UAEM).

Health is a fundamental universal right and access to medicines is part of it. The EU and its Member states are committed to universal and equitable access to healthcare. Nevertheless, millions of European patients suffer from the lack of affordability of many life-saving medicines across Europe. The debate will examine the status quo regarding access to medicines in Europe and explore policy recommendations for more affordable medicines. Possible solutions to be considered will be: new forms of pooled procurement, price and data transparency, cost-therapeutic benefit assessment of medical products and greater generic competition. We shall also debate new biomedical R&D strategies that increase the social return of public investments and promote affordable health-driven innovation which “de-links” research costs from final medicine prices.

Programme (12:30-15:00, room A3G-3)

 

Welcoming remarks by sponsoring MEPs

 

Affordable access to medicines: the situation on the ground

Moderated by Jamie Love @jamie_love, Director, Knowledge Ecology International (KEI) & U.S. Chair of the Intellectual Property Committee, TACD 

 

  • Chloé Forette @Chloe_MdM, Harm Reduction Advocacy Officer, Médecins du Monde @MdM_France
  • Gonzalo Fanjul @GonzaloFanjul, Policy Director, IS Global Barcelona Institute for Global Health @ISGlobalorg
  • Rohit Malpani @MSF_access, Director, Access Campaign, Médecins Sans Frontières (MSF)

 

Q&A session

 

What can we do about the high cost of medicines?

Moderated by Ellen ‘t Hoen @ellenthoen, Medicines Law & Policy.

 

  • Teresa Alves, International Policy Adviser, La Revue Prescrire,
  • Prof. dr. Graham Dukes, University of Oslo
  • Prof. dr. Huub Schellekens, University of Utrecht

 

Q&A session

Concluding remarks by sponsoring MEPs

The European Commission will be represented by DG Enterprise & DG SANCO.

Please join the discussion on twitter using #a2mEurope. Also note that the event will be webstreamed live (more information to follow).

We would kindly ask you to register your attendance (please mention title & organisation represented) to a2m.europe@gmail.com by Thursday 6 November 2014. Should you require a badge to access the European Parliament, please do not forget to provide us with your full name, nationality, passport/ID number and date of birth.

 

A light lunch will be served at the start of the event.

European Parliament event: “Can we afford our medicines?” November 12th

‘’Can we afford our medicines?
The access to medicines crunch in Europe”

European Parliament (room A3G-3), 12 November 2014, 12:30-15:00

We would like to invite you to the conference “Can we afford our medicines? The access to medicines crunch in Europe” under the auspices of MEPsNessa CHILDERS (S&D, IE), Beatriz BECERRA BASTERRECHEA (ALDE, ES), Kostas CHRYSOGONOS (GUE/NGL, EL), Michèle RIVASI (Greens/EFA, FR) with the support of the TransAtlantic Consumer Dialogue (TACD), Salud por Derecho, Health Action International (HAI) Europe, Doctors of the World – Médecins du monde International Network, Universities Allied for Essential Medicines (UAEM).

Health is a fundamental universal right and access to medicines is part of it. The EU and its Member states are committed to universal and equitable access to healthcare. Nevertheless, millions of European patients suffer from the lack of affordability of many life-saving medicines across Europe. The debate will examine the status quo regarding access to medicines in Europe and explore policy recommendations for more affordable medicines. Possible solutions to be considered will be: new forms of pooled procurement, price and data transparency, cost-therapeutic benefit assessment of medical products and greater generic competition. We shall also debate new biomedical R&D strategies that increase the social return of public investments and promote affordable health-driven innovation which “de-links” research costs from final medicine prices.

Programme (12:30-15:00, room A3G-3)

 

Welcoming remarks by sponsoring MEPs

 

Affordable access to medicines: the situation on the ground

Moderated by Jamie Love @jamie_love, Director, Knowledge Ecology International (KEI) & U.S. Chair of the Intellectual Property Committee, TACD 

 

  • Chloé Forette @Chloe_MdM, Harm Reduction Advocacy Officer, Médecins du Monde @MdM_France
  • Gonzalo Fanjul @GonzaloFanjul, Policy Director, IS Global Barcelona Institute for Global Health @ISGlobalorg
  • Rohit Malpani @MSF_access, Director, Access Campaign, Médecins Sans Frontières (MSF)

 

Q&A session

 

What can we do about the high cost of medicines?

Moderated by Ellen ‘t Hoen @ellenthoen, Medicines Law & Policy.

 

  • Teresa Alves, International Policy Adviser, La Revue Prescrire,
  • Prof. dr. Graham Dukes, University of Oslo
  • Prof. dr. Huub Schellekens, University of Utrecht

 

Q&A session

Concluding remarks by sponsoring MEPs

The European Commission will be represented by DG Enterprise & DG SANCO.

Please join the discussion on twitter using #a2mEurope. Also note that the event will be webstreamed live (more information to follow).

We would kindly ask you to register your attendance (please mention title & organisation represented) to a2m.europe@gmail.com by Thursday 6 November 2014. Should you require a badge to access the European Parliament, please do not forget to provide us with your full name, nationality, passport/ID number and date of birth.

 

A light lunch will be served at the start of the event.

Notes on new EC Commissioners about access to knowledge

Notes on access to knowledge and IPR challenges of the new European Commission

 

 

Carlos Moedas, Commissioner for Research, Science and Innovation

 

It is generally accepted that copyright constitutes a barrier for EU researchers and weakens their ability to access published research results. The new commissioner, though it is not his direct competence, will probably support a EU copyright reform that includes some kind of EU-wide copyright exception for scientific researchers.

 

The new Research Commissioner will also have to deal with the application, very partial to date, of the EU´s new mandatory policy of open access to EC funded scientific published research results and the promotion of open data policies to become the norm by 2020. This also includes an alignment of EU member states open access policies through the European Research Area.

 

It will also be interesting to see how Moedas uses the mechanism of innovation inducement prizes in the area of biomedical research of Horizon 2020 after a few pilot projects have been launched.

 

The transparency, IPR rules and social return of the public-private partnership Innovative Medicines Inititative, particulary concerning antibiotic resistance, is also important to follow. The EU´s positions on the WHO process on new models of R and D for medicines will also be important to monitor.

 

Gunther Oettinger, Commissioner for Digital Economy and Society

 

Oettinger has committed himself to presenting an EU copyright reform proposal within a year. It is important to note that the competence over EU copyright has moved from the DG Internal Market to DG Connect that will be headed by Oettinger. The copyright unit headed by Maria Martín Prat will now move under a more copyright reform regime. The big challenge will be to try to overcome very different national copyright and licensing rules to conform a single digital market. Harmonizing exceptions and limitation to copyright, including exceptions for Text and Data mining as well as for libraries, might be some of the issues.

 

The regulation of cloud computing, big data and data protection will also be big challenges that will partially be considered with the context of the TTIP negotiations and trans-Atlantic business parctices.

 

It will be interesting to follow if the new Commissioner mandates any changes in EU strategy at WIPO on both the proposed broadcasting treaty and exceptions to copyright for libraries. To date the EU has been radically opposed to copyright reform for libraries at WIPO, to the point of blocking any progress at the UN institution. Another important issue will be the pending EU ratification of the Marrakesh Treaty for visually impaired persons that is blocked due to procedural issues over EU/member state competences.

 

 

Vytenis Andriukaitis, Commissioner for Health and Food Safety

 

While competence over pharmaceuticals, including the European Medicines Agency, has been moved to the Industry DG, the new Health Commissioner has insisted that he would make joint proposals with the Industry Commissioner and that his opinions would carry equal weight.

He has suggested coordinating among EU member states to lower the high price of life-saving medicines, possibly through pooled procurement. No mention of IPR was made during his hearing.

He was adamant about supporting transparency and preventing conflict of interests.

 

 

 

Access to life saving medicines debate in plenary of European Parliament

European Parliament Strasbourg Plenary Session

Subject: Commission statement – Access to life-saving medicines in Europe

Date: September 16 2014

 

Connie Hedegaard, European Commissioner for Climate Action said that the Commission shared the concerns regarding the affordability of new medical products and the related risk of inequalities. She added that the Commission Communication in April 2014 on resilient health systems focuses on increasing accessibility to health services. At the June health ministers’ Council, France raised the issue of the new Hepatitis C treatment. Member states will discuss pricing and reimbursement in the coming months. This new treatment is not an isolated case. Therefore, the Commission is looking forward to the debate on the therapeutic innovation at next week’s health ministers’ Council. As regards, support to medical innovation, the Commission believes in the contribution of the Innovative Medicines Initiative (IMI). She commented that the European pharmaceutical legislation includes a wide spectrum of measures to guarantee access to necessary medicines. The Commission has however no competence to regulate the level of prices. Thus there can be no price caps but it can nonetheless help with the exchange of information between member states. She concluded by saying that another way in which the European Commission could assist member states is through the use of the joint procurement mechanism.

Miroslav Mikolasik (EPP, SK) stated that this is an important topic for patients and saving lives. He emphasized the fact that the situation is not the same across all member states. He added that the high prices of medicines reflect the research that led to their development. Nevertheless, ppharmaceutical companies should not misuse nor abuse their unique position. In the period 2000-2009, public spending for medicines has increased by 76% and this is unprecedented. The EU population is ageing and the prices of new medicines are constantly increasing.

Biljana Borzan (S&D, HR) said that medical progress leads to efficient but expensive medicines. Millions of euros are used to save banks in Europe today while Europeans lack access to necessary medicines. Public funds should be used to promote medical research and development. She called for shorter patents because prices go down when patents expire.

Beatrix Von Storch (ECR, DE) stated that on the 18th of October 2011 the European Court of Justice made that human life begins at the stage when the semen touches the egg. She therefore criticized stem cell research. The European Commission should discourage stem cell research because this equals destruction of human life.

Beatriz Becerra Basterrechea (ALDE, ES) said that Hepatitis C is an infectious disease that constitutes a public health crisis. She favoured the issuing of a compulsory license that will enable the manufacturing of a generic. The EU should challenge the patent legally. She added that the option of joint public procurement should be examined. Egypt imports the generic equivalent of the new Hepatitis C treatment at a price 100 times lower. Another 90 developing countries will benefit from India’s decision to produce generic equivalents. In her view, the Commission should defend the general interest of European citizens. She gave the example of price caps for roaming and wondered what is more important public health or a matter like roaming costs.

Kostas Chrysogonos (GUE/NGL, EL) said that pharmaceutical companies push for ever higher prices through their monopolies. High prices are not the only obstacle to people’s access to life-saving medicines. In reality, the competent bodies inside the EU are not only indifferent towards these prices but also impose spending cuts on health services. The worst situation is faced by those countries under memoranda where the Troika demands continuously cuts in public health expenditure.

Michele Rivasi (Greens/EFA, FR) stated that the new treatment against Hepatitis C affects millions of Europeans. It therefore becomes a real public health question. She called for compulsory licenses against long patents and monopolies. She explained that compulsory licenses will open the markets. There is also the question of medical research. In this respect, the current Western African Ebola crisis is due to the fact that no pharmaceutical company has invested in developing a vaccine because it would not be profitable. In other words, public health becomes a market-driven policy.

Dario Tamburrano (EFD, IT) welcomed the debate. He criticized the fact that DG Industry will be responsible for health matters in the new Commission.

Eva Kaili (S&D, EL) argued that human rights are more important than intellectual property rights. She called for more transparency in order to know what is happening with medical innovation inside big pharmaceutical companies. She called for shorter patents. In her view, the EU should act against these ridiculous prices of medicines. Moreover, she favoured the use of generics.

Branislav Skripek (ECR, SK) said that medicines should be available to all and not only to the privileged ones. He defended people’s access to health care services.

Marian Harkin (ALDE, IE) said that countries undergoing austerity programs are faced with the most serious challenges. The Commission admits that these cuts in health expenditure affect the most vulnerable parts of the society. She called on European Commission president Junker to revisit his decision about assigning health issues such as pharmaceutical products to DG Enterprise and Industry.

Marisa Matias (GUE/NGL, PT) said that these prices are scandalous especially for countries forced to cut their public health budget. She argued that this is shameful profiteering on behalf of big pharmaceutical companies and has nothing to do with funding innovative research. The European Commission might not be able to do much about prices but it can certainly put an end to patent monopolies, if there is political will.

Margrete Auken (Greens/EFA, DK) said that the greed of the pharmaceutical industry is unlimited. Even though, it is a fact that most of medical innovation comes from publicly funded research, industry is allowed to profit from European taxpayers’ money. She added that moving the pharmaceutical industry dossier to DG Enterprise is a cynical idea. Human lives should not be sacrificed for more money.

Giorgos Grammatikakis (S&D, EL) stated that over the past few years, there has been a serious access to medicines crisis in Greece. He explained that many pharmaceutical companies blackmailed the country with shortages and stock-outs. He stressed that small countries like Greece cannot stand up against the big pharmaceutical interests and thus called for increased European cooperation on this matter.

Angela Vallina (GUE/NGL, ES) called for better checks of pharmaceutical companies in the EU. She called for lower prices of medicines. The EU should not be a silent witness when people are dying despite the fact that there is a treatment.

Soledad Cabezon Ruiz (S&D, ES) said that the EU should investigate the profits of pharmaceutical companies. Everyone in Europe should have access to life-saving treatments. She also called for a review of intellectual property rights when it comes to medical innovation and research.

Catch the eye procedure

Joao Ferreira (GUE/NGL, PT) criticized the Commission for not doing more than just talking. He said that the European Commission is part of the Troika which imposes the strictest public health spending cuts.

Connie Hedegaard, European Commissioner for Climate Action reminded that the European Commission has no competence over pricing of medicines. She nevertheless stressed that the Commission can do other things such as promote the exchange of information between member states. She added that it is up to member states to take these matters forward and expressed her certainty that the informal health ministers’ council will have this item on its agenda at their next meeting.

 

 

 

 

Joint civil society letter to Juncker over placing pharmaceuticals under industry

Dear Mr. President-elect,
We are writing to express our astonishment and concern regarding your decision to move the competence for medicinal products and health technologies from the Commissioner in charge of Health to the Commissioner in charge of internal market and industry within the new Commission.
The economic crisis, the ageing of the population, technological advances, and new health threats, including environmental pollution, are all challenging the sustainability of European health systems, and health inequalities between and within European Union (EU) Member States are increasing.
The European Commission, as the guardian of the Treaty, plays an important role in “ensur[ing] a high level of human health protection”. This necessitates an unwavering vision for public health, along with consistent and coherent policymaking to support it.
People living in Europe have the right to high quality, safe, affordable and effective treatments. Pharmaceuticals and medical devices are not – and should not – be considered as any other internal market product because they safeguard people’s health.
The main driver of EU policies concerning pharmaceuticals and health technologies should be promoting and protecting health and patient safety. The Commissioner for Industry and Internal market, however, is mandated to promote the competitiveness of the industry and the European economy. This distinction is an important one to make with delicate issues, such as information to patients and medicine pricing, where the needs of patients can be in conflict with the interests of industry. The shift you are proposing sends the wrong signal to European citizens and patients – namely that economic interests come before their health. This is not the sort of signal the EU wants to send.
In 2009, responsibility for medicines and medical devices were moved into the hands of the health Commissioner to harmonize pharmaceutical governance within Member States and facilitate emergency preparedness. Returning them to the Commissioner for Enterprise and Industry is unjustified and represents a major step back.
Please reconsider this decision – we believe that medicinal products and health technology belong under the responsibility of the Commissioner for health.
We urge you to show bold leadership and to put health interests first.
Yours Sincerely,

Press contact: pierrechirac@aol.com

Question and debate in EP (16-9-2014) on high prices of life-saving medicines

Oral Question posed by French MEP Michelle Rivasi (Greens)

Access to medicines has repeatedly made the headlines in many EU countries over the past 3 months (in France, the UK, Spain, Greece, etc.). The reason for that is the price charged for Sofosbuvir, a drug that can cure hepatitis C. It is sold by the pharmaceutical firm Gilead, which charges generally between 50 000 and 60 000 euros per patient for a 12 weeks course in the Eurozone.

The situation with Sofosbuvir is urgent, but unfortunately it is not an isolated case. This level of prices not only is a new trend but it is becoming a new norm for serious diseases. As a consequence, we, for example, see how it is becoming harder and harder to ensure access to drugs to cancer patients in Europe. It is happening with Kadcyla® a drug for breast cancer, for Nexavar® a drug for kidney and liver cancer. And we are all affected, or soon will be.

The less innovation the pharmaceutical industry brings to the market, the more it prices the new drugs. Abuses of monopoly rights and patents is harming innovation and crushing health systems. We are seeing doctors and medical authorities forced to compromise their professional code of ethics and to invent false reasons of cost-effectiveness to justify sentencing people to death.Nothing in the chain of development of these drugs justifies these prices.

Rationing of life saving medicines in Europe is not acceptable. It is high time to reform a system that is increasingly dysfunctional, and to honestly address the issue of the research and development model we need for medical innovation.

Today 10 to 15% maximum of the price of a medicine will go towards research. Is that really the most effective way to proceed? Instead of paying 100 euros to endure that 10-15 euros will go to research, citizens, communities or States could pay directly the same share for research without having to bear the cost of monopoly.

France raised the issue of Sofosbuvir at the Council and before the Commission during the Summer. What are the Council and the Commission planning on doing to break this deadlock which is becoming deadly for an increasing number of EU citizens? When will we seriously discuss options that do not necessarily please a handful of multinationals but would serve the EU public interest, such as funding mechanisms and financial incentives that are not tied to the granting of exclusive rights and monopolies? When will we impose price caps on medicines the same way we were able to do for roaming?

Gobal Broadcast Treaty and public interest

Statement to WIPO SCCR 28 on Broadcasting Treaty by TransAtlantic Consumer Dialogue

 

Broadcaaster lobby material

Broadcaster lobby material

 

Broadcasting Treaty: Collateral damage to public access

 

Consumers and users around the world do not want new layers of complications, barriers and costs added to their access to information, news and knowledge. The strong push towards a binding Broadcasting Treaty with a wide scope is in stark contrast with the rigid opposition on the part of a number of member states to even discussing new global norms to facilitate the essential cultural and scientific role played by libraries and archives. This contradiction is not understood by millions of consumers and citizens around the world.

Do we want to follow the greatest success stories with regards to public broadcasting that are based on flexible, fair copyright frameworks or do would we like to create new complicated and expensive legal barriers that inhibit innovative and plural public broadcasting?

If we consider public broadcasting a public good, is it acceptable to move toward creating a new global binding legal standard of copyright protection for broadcasting signals without first making clear exceptions and limitations to this new norm that are essential to the flow of information and culture?

We would like to know if the Broadcasting Treaty will threaten the right to freely quote broadcasts or circulate snippets of news. Consumers and users must know if the concrete scope of this legal norm will mean new obstacles to what we often access and share daily. We are afraid we might be opening up an endless, incomprehensible pandora box of overlapping rights on content between non-creators (broadcasters) and creators. We are also concerned that the protection of post-fixation rights can have a very negative impact in the online use of culture, news and information by consumers and users.

In the consideration of a new international legal norm for broadcasters we must not forget the common good of the free flow of information for citizens. The focus of our work should not be limited to satisfying the wish-list of one special interest group while ignoring the possible unintentional negative consequences on normal users.

Very clear public interest red-lines need to be drawn up, the scope of rights must be narrowly, clearly defined and the social impact of these new rights must previously be evaluated by independent experts.

David Hammerstein, TACD