European Parliament office in Athens, 13 December 2013
Event summary report
130 people showed for the event from all sectors (news agencies, medical associations, doctors’ associations, patients’ associations, pharmacists and numerous representatives of the pharmaceutical industry). The conference was attended by the parliamentary representative of the leading opposition party SYRIZA Mr. Panayiotis Kouroumplis. European Commission’s Task Force for Greece (TFGR) was represented by Ms Giulia Del Brenna who flew from Brussels. Moreover, presentations were given by the author of the latest law on medicines in Greece Mr. Maniadakis and from Mr. Charalambos Karathanos, pharmacist and close advisor to the Minister of Health Mr. Adonis Georgiadis.
Médecins Sans Frontières (MSF), Médecins du Monde (MdM Greece), PRAKSIS NGO, Greece’s leading consumer association and TACD member EKPIZO, the Greek cancer patients’ association DEDIDIKA, MEP Nikos Chrysogelos (Greens/EFA, EL) and the European Public Health Alliance (EPHA) all actively supported and promoted the event.
About 50 patients’ representatives coming from all over Greece attended the conference and participated in the afternoon workshop.
The conference’s webpage had 6.000 visits (10/11-30/12/2013) while 115 people registered in advance.
There were articles in the press leading up to the conference as well as a detailed report of the work of the conference on the same day published by one of Greece’s largest news portals (www.news247.gr). An article also appeared in one of the country’s largest dailies “Efimerida ton syntakton” on Monday 16 December 2013 (47.000 followers on FB). Overall, the event received considerable publicity despite the fact that on the same day, there was a major high-level conference organized in Athens by the Greek Ministry of Health in cooperation with the WHO and the European Commission’s Task Force (TFGR) on the heath reforms in Greece.
The event was webstreamed live. Intensive live tweeting took place the days before and on the day of the conference (twitter analytics).
Our save the date/invitation was widely circulated by the office of MEP Nikos Chrysogelos (Greens/EFA, EL), Médecins Sans Frontières (MSF), Médecins du Monde (MdM Greece), PRAKSIS NGO, Greece’s leading consumer association and TACD member EKPIZO (it was sent to its 23.000 members across the country) as well as by the Greek cancer patients’ association DEDIDIKA. In addition to the above, it was published in numerous news & medical websites (see indicative list below).
Health Daily (the country’s largest daily health newsletter reaching 7.000 professionals – the invitation & press releases were published 3 times leading up to the conference)
Synopsis of presentations’ main points
In his opening remarks, MEP Nikos Chrysogelos (Greens/EFA, EL) spoke of the need to have a universal health coverage system in place. He emphasized the role of prevention as it reduces the future cost of treatment. He underlined the fact that there are many cases reported in Greece of people whose health has deteriorated considerably due to the fact that they either a) cannot afford to take their treatments properly or b) they do not have access to primary health care.
David Hammerstein, Senior advocate, TransAtlantic Consumer Dialogue, Brussels He highlighted the importance of the Greek Presidency of the Council of the European Union (first half of 2014). He referred to the budget reduction measures put forth by the European Commission for which there are no evaluation-impact studies. He described fight against corruption and transparency as key elements in dealing with medicines in Greece. Last but not least, he underlined the lack of concrete data regarding various dimensions of the health crisis in the country.
Eleni Alevritou, President of EKPIZO stressed the importance of collective action in times of crisis. She described the Greek civil society movement as a weak and disorganized one which nevertheless needs to better organize itself in order to become more efficient.
Policy-making session I: The situation on the ground in Greece concerning access to life-saving medicines moderated by David Hammerstein, Senior advocate, TransAtlantic Consumer Dialogue, Brussels
Dr. Kostas Athanassakis, Research Fellow, National School of Public Health (ESDY) gave an overview of the agreements between the Greek government and the Troika over the past years. He started by saying that public pharmaceutical spending will be reduced to 2bn euro in 2014 i.e. a 60% reduction in comparison to the 5bn euro spent in 2009. He then presented the basic reforms concerning medicines in Greece namely the active ingredient-based prescription and the prices of reference for the national insurance organization EOPYY. He explained that if the 2bn euro threshold is not respected, the agreements foresee additional measures such as increasing co-payment percentages as well as moving more medicines to the “negative list” i.e. list of medicines which are not reimbursed. According to the latest agreements between the Troika and Greece, generics will need to cover 60% in pharmacies’ sales and 50% of the use in hospitals. Moreover, he referred to all of the mistakes made in the operation of EOPYY which have resulted among others in many people losing their social coverage over the past three years. According to Dr. Athanassakis hospitals have become the primary focus of the reforms along with the future role of EOPYY. Since the start of the agreements, cutting pharmaceutical spending has been the top priority. This was to be achieved by a) slashing the prices of medicines, thus reducing the profits for suppliers and b) cost-sharing thus making things worse for patients. He commented that the cost-sharing tool is very common, can be efficient in reducing pharmaceutical spending (average co-payment in Greece before 2009 = 9%, today around 23%) but can also be extremely dangerous for health, as patients decide to forego certain types of medicines which leads to immediate worsening of their health status. Furthermore, deteriorating health conditions increase the cost of future treatment while chronic diseases become lethal as regimens are not taken properly. He concluded by saying that reforms introduced so far serve almost exclusively the goal of saving money today which will end up costing more tomorrow.
Prof. Christos Lionis, Director, Clinical Social and Family Medicine, faculty of Medicine & the University Hospital of Heraklion (Crete) spoke of primary health care in Greece, a highly controversial issue in the country since the government is in the process of introducing reforms in this field too. He presented the data collected at the first primary care unit in the city of Heraklion run by the University. This unit has been providing healthcare services to people with no insurance, low income as well as migrants. He analyzed the profiles of patients visiting the unit concluding that most of them are uninsured for over two years, they do not take their medicines as they are supposed to either because their medicines are not available or they cannot afford them. He emphasized that medical schools curricula need to change, become socially accountable and to engage patients and other stakeholders.
Giorgos Zarkotos, President, Greek Association of Drugs and Substitutes Users commented that the crisis has deteriorated the problems that many marginalized social groups are faced with such as prostitutes, substitute uses, prisoners, roma people, homeless, immigrants. He stated that most of them apart from the social stigma have no access to health services. Moreover, state funding into harm reduction programmes has been dramatically reduced. This has resulted in deteriorating health situations such as a considerable increase in HIV cases in the country among drug users. Syringes distribution has fallen to almost zero levels leading to this increase in HIV and Hepatitis C cases. He emphasized that most Hepatitis C patients belonging to these social groups receive no treatment. He called upon the Greek government to: a) support more needle and syringes programmes, b) strengthen HIV testing and counseling, c) provide comprehensive and sustainable ART treatment, d) focus on vaccination, diagnosis and treatment of viral hepatitis and e) reinforce prevention, diagnosis and treatment of tuberculosis.
Liana Mailli, President, Médecins du Monde Greece presented valuable data from the MdM’s activities on the ground. She said that more and more people visit the clinics & medical centres run by MdM Greece in order to receive not only health services but also food and clothing. During the first nine months of 2013, more than 13.000 people have used the mobile medical units of MdM Greece. She emphasized that there is a 20% annual increase in the number of people using the various services of MdM Greece. Vaccines constitute the number one type of medicine that people who turn to MdM Greece ask for which demonstrates that children are also very much affected by the austerity crisis. In the first nine months of 2013, around 7.000 children were vaccinated. She added that more than 2.500 people visit the main MdM clinic in Athens on a monthly basis. Most people using MdM services are Greeks who have fallen off the social safety net. This means that these people and their families do not have access to any health services anymore.
Policy-making session II: Benchmarks ahead moderated by Tassos Telloglou, Reporter, Kathimerini newspaper & Star Channel
Rohit Malpani, Director, Policy and advocacy, Doctors Without Borders’ Access Campaign explained that patent monopolies lead to extreme prices for life-saving treatments. He gave the example of the recently approved Hepatitis Cdrug which will be sold at 60.000 euro for a 12-week course even though the cost of manufacturing it ranges between 50-100 euro. He criticized the view that tiered-pricing is the way forward stating that price reductions are not always sufficient, it is usually implemented in an arbitrary manner and all of the above; usually unfold in complete lack of transparency. In relation to the issue of patents, he stated that these should only be granted for true innovations and ever-greening should be avoided. In this respect, he mentioned that a generic equivalent of the famous cancer drug Herceptin was recently approved in India. He stressed that most innovation stems from publicly-funded research which should not be given as a present to pharmaceutical industries. In addition to the above, he criticized the European Commission for exercising pressure on developing countries that employ compulsory licensing and other safeguards to ensure affordable treatment. In his view, the European Commission should refrain from supporting tiered pricing as the solution to access. Moreover, he expressed the view that free trade agreements should not limit the ability of EU Member States to use public health safeguards. Last but not least, he reminded everyone that anti-competitive intellectual property strategies cost EU consumers 2 billion Euros between 2000 and 2007.
Dr. Christos Ntellos, Director, Cardiac surgical dept. Tzanio public hospital (Pireaus) stated that doctors overprescribe medicines in Greece. He stressed that innovative medicines which are highly promoted by the pharmaceutical industry are not truly innovative while they cost a fortune for the national health budget. He criticized the role of doctors in joining those glorifying innovative medicines even though they know very well that there is no substantial difference. To this end, he gave the example of medicines against cholesterol which are profusely prescribed even though it is clear that exercise is much more effective in the fight against cholesterol. This is why; there is still a lot of space for corruption. He called on doctors to stop playing with patients’ sense of agony and hope when it comes to generics and new innovative medicines. In his view, reliable generics are the way forward. He commented that people need to realize that expensive medicines do not necessarily equal better treatments. He concluded by pointing out the following: a) patients’ real needs in medicines are much smaller than the medicines prescribed and consumed today, b) there need to be strict therapeutic protocols in place, c) priority should be given to the use of generics and d) older and cheaper medicines should not be sidelined.
Prof. Nikos Maniadakis, Associate Dean, National School of Public Health (ESDY) author the latest pricing law on medicines gave an in-depth presentation of the piece of legislation. He analyzed the spectrum of measures implemented by the Greek government in relation to medicines in Greece (new lists of medicines, strict budget thresholds, new pricing scheme, e-prescription, generics, guidelines and therapeutic protocols). In terms of patent medicines, their price will be defined according to the three lowest prices in EU member states. As regards, off patent medicines, their price will be halved following the expiry of the patent. As for generics, their price will be further reduced and will be determined at 65% of the off patent medicine with a similar active ingredient. He added that the law anticipates the possibility for some dynamic pricing i.e. the higher the sales of a generic medicine are, the cheaper they can get. Editor’s note: This is considered by Greek pharma as the most threatening provision. In their view, dynamic pricing is the Ministry’s present to foreign pharma as it will enable the latter to lower their generics’ prices tremendously and consequently wipe Greek companies off the map.
Giulia Del Brenna, Adviser, Task Force for Greece, European Commission thanked the NGO community for providing data on the real situation in Greece while she criticized the Greek Government for not giving any reliable data on health coverage and access to medicines. Sheexplained that the work of the Task Force is to ensure universal health coverage through a social safety net with the use of clinical guidelines and protocols. She stressed that what is needed in Greece is transparency. She highlighted the importance of primary health care reform. She reiterated that it is up to the Greek government to decide which measures to implement in putting the reforms in place. She acknowledged that “in an ideal world” there should have been impact assessment studies of the reforms put forth. E-Health constitutes one of the main focal points of the technical assistance when it comes to hospital management.
Charalambos Karathanos, Pharmacist, Advisor to the Minister of Health on medicines issues clearly stated that the 2bn euro target for 2014 is neither feasible nor realistic. He repeated the government’s position that 2.5 bn euro will be needed for 2014 and reiterated that the final figure is still under negotiation with the Troika. He reaffirmed the government’s determination to encourage the use of generics in the Greek NHS and criticized those who question the safety and quality of generics. He reminded everyone that most generics used in Greece come from Greek pharmaceuticals that produce excellent quality products. On the issue of the uninsured people living in Greece, he stated that the government is seeking to find solutions. Last but not least, he referred to the presentation of Oliver Moldenhauer (TACD event in Athens, 31 May 2013) regarding the prospect of using WTO provisions and flexibilities in order to allow for cheaper medicines to enter the Greek market.
The Q&A session that followed was dominated by questions addressed to the TFGR representative and the Minister’s advisor. Discussion was very much heated between the Minister’s advisor and patients’ representatives.
Civil society empowerment workshop/advocacy capacity-building
(about 40 patient representatives coming from all over Greece)
Session 1: Towards an effective patients’ movement in Greece
Alex Wyke, Patient View, founder and Managing Director explained the reasons why policy-makers need to listen to patient groups: a) Health costs are governed by the demands that patients place on the national healthcare system, b) Such systems need to spend wisely—but also to understand patients (and thereby not waste resources on unnecessary services) and c) Patient groups understand patients. They can support patient empowerment, and help make the best use of resources outside healthcare systems. She added that patients can play a crucial role in the following areas: a) influencing the doctors’ environment, b) lobbying for budget, c) helping to set prescribing guidelines, d) shaping government priorities and e) defining professional accountability. There are numerous sources of information for patients; all they have to do is know where to look. In addressing the Greek patients associations, she emphasized that fragmentation is their biggest challenge and enemy. Policymakers have little time, and do not want to speak to hundreds of patient groups. They also believe that disease-oriented patient groups have vested interests, and are prejudiced. Last but not least, fragmented patient groups are not as effective as networked patient groups that present a unified image. She gave the example of cancer patients where PatientView has identified 50 different types of patient groups which tend to act independently of one another. Nevertheless, she commented that an ever-closer integration process is unravelling while cross-stake holder coalitions are now increasingly happening.
Kathi Apostolidis, President, DE.DI.DI.KA. & Vice-president, European Cancer Patients Coalition (ECPC) guided the audience through the social media world and its use today. In her view, patient groups need to take advantage of the potential that social media has to offer. She stressed that efficient social media use requires commitment, time and money as it usually takes a staff member working exclusively on setting up and most importantly, sustaining in the long term an organization’s social media platforms. These means can be used among others to raise public awareness, attract attention and publicity, raise funds and recruit new members. For example, social media platforms could be employed to recruit some additional volunteers in light of an event that the organization is planning to host or to build new relationships with influential figures who can act as multipliers for the organisation’s messages. She mentioned the following rules regarding the use of social media: 1) Listen. Social Media is not about you. It is about people’s relationships with you. Listen before you speak. 2) Get involved. Social Media is about conversations and building relationships. It takes effort. 3) Don’t just talk about yourself. Ask questions, engage people and link. Most of all be inspiring. 4) Give up control. You cannot control the conversation. If you want people to spread your message, you have to trust them. 5) Be honest. You can’t spin the truth with Social Media. Be open, honest and authentic in everything you say and do.
Following the two presentations, patient representatives were split into two working groups of about 15 people and were called upon to brainstorm on one question each. Working Group A was instructed by Alex Wyke to present the main priorities of the patients’ movement in Greece while Kathi Apostolidis instructed Working Group B to work on a social media strategy for their respective organisations.
Debate in Working Group A was rather heated as participants found it difficult a) to comprehend what was asked of them, b) to think beyond the narrow limits of their own organization and c) agree on common priorities of mutual concern and interest. Nevertheless, they listed the following as overarching priorities for all patients in Greece:
Universal public health coverage in Greece with special attention to chronic diseases
Access to health services irrespective of one’s employment status for everyone living in the country
Training of patients so as to be able to better participate and engage
Raising public awareness – prevention – diagnostics
Transparency at all levels when it comes to medicines a) safety & quality (cost-benefit analysis & efficacy) and b) affordability (both for the patient as well as the state budget)
Affordable medicines & treatments
Right to work for handicapped people & people with chronic diseases
Session 2: “Weapons” of the patients’ movement in times of crisis
Gaelle Krikorian, Adviser on Intellectual Property & Access to Knowledge-Greens/EFA, European Parliament spoke about the special features of the following semester for Greece having the EU presidency in combination with the European elections in May. She expressed the view that people have a say in EU affairs through parliamentary questions, questions addressed to the European Commission, the citizens’ initiative as well as the Troika enquiry. Therefore, she called on participants to elect good parliamentarians next May. She then commented that expensive medicines can be dealt with through good quality generics which nevertheless, do not solve the issue of patent monopolies and outrageous medicines’ prices. She explained that it is a very sensitive subject which when implemented causes a series of retaliations from both governments and the pharmaceutical industry. She nonetheless explained that it is a goal worth pursuing as Thailand did. Thailand took the political decision to issue a compulsory-license on heart, HIV and cancer medicines. Strong social mobilization on behalf of patient groups, NGOs working on public health, academics and other civil society stakeholders rallied behind the Thai government’s decision. Workshop participants were encouraged to examine compulsory-licensing in the case of Greece.
Maria Moudatsou, Forensic Psychologist, Director of Institutional & Vertical Fundraising, NGO PRAKSIS guided patient groups through the process of fundraising. She explained everything ranging from where to look for grants and funding opportunities, how to approach sponsoring entities such as foundations, organizations and others, how to present an organization, how to apply for a grant etc. She emphasized the need for synergies and forging alliances with other stakeholders. Strategic planning & management constitute another pillar for the organization of a patient group.
Dimitris Kremalis, Partner, Kremalis Law Firm & President, Greek Health Law Association provided a brief overview of the legal framework for patients in times of crisis.