ACTIONS

WE PRESENT OUR REPORT ON “PUBLIC INTEREST IN BIOMEDICAL INNOVATION”

At the beginning of the year, we published a report where we spoke of how the State is the largest investor in R+D in the health sector (62% of the expenditure, in contrast to 38% invested by the private sector). Nevertheless, the social returns from this investment are lost, as when this research is transferred from universities and research centres to companies, they do not include public interest clauses that ensure, for example, that the end products will have affordable prices that contribute to the sustainability of the system. This report proposes a series of measures (on intellectual property management, knowledge transfer or accountability, among others) to remedy this situation as soon as possible and to allow greater follow-up and social impact of public investment in R+D.

WE PARTICIPATED IN THE FARMAMUNDI SEMINAR

We were invited to participate in the three-day Farmamundi Seminar “Medications don’t work if you can’t access them” at the Faculty of Pharmacy of the University of Alcalá in April. In our presentation, we described the workings of the Research and Development model in medications and how drug prices are fixed, after projecting the documentary “Houston, we have a problem”

WE PARTICIPATE IN LEGAL PROCEEDINGS TO DEFEND TRANSPARENCY IN THE FUNDING OF MEDICATIONS

In late-2018, the Government announced the approval of Kymriah, a new therapeutic procedure developed by Novartis grouped under cellular immunotherapies (CART). No es Sano (It’s Not Healthy) made a petition to the Ministry of Health through the Transparency Portal to reveal its price and the therapeutic and economic criteria that justified its approval. In January 2019, the Government sent the campaign a communication detailing the price of the treatment, which was a maximum of 320,000 euros in Spain. Nevertheless, the information on the criteria was incomplete and of a generic nature which did not answer the queries made by No es Sano (It’s Not Healthy). Therefore, the campaign approached the General Transparency Council, an independent body in charge of monitoring transparency in public works, which ruled in favour of the campaign and ordered the Government to make available this information. At this point, the pharmaceutical company Novartis decided to take the case to court in order to stall the process with a contentious-administrative appeal to try and prevent by legal means, the campaign’s, and therefore the public’s, access to this information. Right to Health and OCU (the Organisation of Consumers and Users) have decided to participate in these proceedings on behalf of No Es Sano (It’s Not Healthy).

NOVEMBER ELECTIONS: HEALTH COMES FIRST

Prior to the November elections and akin to our efforts in April, we sent various letters to presidential candidates on the need for a firm commitment to the health of all individuals.

WE ASK THE EUROPEAN COMMISSION FOR GREATER TRANSPARENCY AND GREATER MONITORING OF PUBLIC INVESTMENTS

In December we joined over 40 European organisations to sign a letter addressed to the European Commissioners for Research and Health asking that research funded with public money be tailored to public health needs, and to ensure transparency, public returns on the investment made with public money, as well as to promote open science.

WE ASKED THE EMA FOR TRANSPARENCY IN CLINICAL TRIAL REPORTS

More than 30 civil society organisations sent a letter to the European Medicines Agency asking them to ensure transparency in clinical trial reports, in spite of the continued legal efforts of the pharmaceutical industry to hide this information for their own commercial benefits.

WE PARTICIPATE IN A COLLOQUIUM ON TRANSPARENCY

In December, we were invited to participate in a colloquium organised by the Council for Transparency and Good Governance, titled “Health Information: a Citizens’ Right” on the importance of transparency in the health sector.

GETTING OUR ELECTORAL MICROSCOPE OUT: #POLETIKAVIGILA

Given the April elections, we continue the work of Polétika–the political watchdog formed by 500 social organisations, to analyse and monitor electoral messaging and commitments on social issues with objectivity, rigour and independence. With regard to Health, we continue to work and insist that electoral programmes must include proposals for the National Health System to ensure universal access to healthcare and treatment drugs, to reverse the health exclusion imposed by Royal Decree-Law 16/2012 and to promote new models of medical innovation, ensuring public returns on investment in biomedical R+D, transparency in R+D and setting the prices of medicines.

WE PRESENT #LASALUDESLOPRIMERO

For the Spanish general election in April, we launched this campaign to remind future members of parliament and presidential candidates of the need to commit to providing healthcare for all. We recorded an original video and sent a letter asking for universal access to healthcare, universal access to medication and health technologies, pharmaceutical and biomedical policies tailored to the public interest and the sustainability of the healthcare system, and the fight against AIDS, tuberculosis and malaria pandemics.

WE PROPOSE CHANGES TO THE MODEL OF PHARMACEUTICAL INNOVATION TO MEMBERS OF THE EUROPEAN PARLIAMENT

Within the framework of the European elections, in collaboration with ten organisations, we asked national political parties to commit to revising pharmaceutical policy and the exorbitant prices of many medications. After the analysis of their electoral programmes, and given the lack of many necessary measures, we published a letter asking for European policies that promoted biomedical R+D tailored to the health needs of the population.

WE PRESENT THE POPULAR LEGISLATIVE INITIATIVE “MEDICINES AT A FAIR PRICE”

In June, after three months of work, 19 organisations and professionals came together to present Parliament and the society with proposals for transparency in health and to promote independent research and training. This was done by means of a Popular Legislative Initiative that proposed amendments to the Law on Guarantees and Rational Use of Medicines and Healthcare Products, and which, once admitted for processing–three months later- would require 500,000 signatures within a period of nine months to be admitted for debate in the Congress of Deputies.

WE ORGANISE A WEBINAR ON KNOWLEDGE TRANSFER

After the publication of the report “Public interest in biomedical innovation”, we began a dialogue with different political and social actors. In October, apart from other activities, we organised an online seminar with REDTRANSFER, an organisation of knowledge transfer professionals whose mission is to strengthen the impact of research in society and in the economy by supporting knowledge transfer, innovation and research management carried out by universities and R+D centres.

MEETING WITH EUROPEAN CIVIL SOCIETY

In September we headed to Brussels for the annual members’ meeting of the European Alliance for Responsible R&D and Affordable Medicines, where activists and organisations that focus on access to medications share our experiences, plan strategies and find common ground in our different visions to continue to work for a world with universal access to healthcare and medications.

WE TRAVEL TO GENEVA FOR THE TECHNICAL SYMPOSIUM OF THE WHO, THE WTO AND THE WIPO

In late-October we travelled to Geneva to participate in the technical symposium organised by the World Health Organisation, the World Trade Organisation and the World Intellectual Property Organisation, on the opportunities and challenges of cutting-edge health technologies, in order to ensure progress towards universal health coverage and the fulfilment of the Sustainable Development Goals.

WE RECEIVE A DESALAMBRE AWARD

The first edition of the Desalambre Awards was held in December. They are awarded by eldiario.es, and acknowledge the work of journalists and social organisations in the defence of human rights. Right to Health and No es Sano (It’s Not Healthy) received the awards for best research and documentation thanks to our reports on drug prices and the power of the pharmaceutical industry, which “document the speculation with prices of treatments for serious illnesses, threatening sustainability and universal access to health systems all over the world, and in Spain”. The award also acknowledged our work “in drafting reports that journalists and responsible politicians use as a primary source”.

WE SEND AN OPEN LETTER TO CANDIDATES FOR THE EUROPEAN PARLIAMENT ELECTIONS

With a view to the European parliament elections in May 2019, we joined forces with 10 other national organisations to ask the political parties to commit to the inclusion of proposals for reforming the R+D system for medications in their electoral programmes and to promote, for example, guaranteed access to products financed with public money, open science, innovation separated from intellectual property and incentives for patents, or policies for transparent price fixing, among others.

WE CONDEMNED THE ATTEMPT AT BLOCKING GREATER TRANSPARENCY IN R+D AND IN DRUG PRICING

Along with Doctors Without Borders and 100 other civil organisations and health experts in May, we signed an open letter that condemned how nine OECD countries were attempting to derail the resolution for “Improving the transparency of markets for medicines, vaccines, and other health products” that was pending approval in the forthcoming World Health Assembly, and which sought to be a major step towards achieving affordable prices for essential drugs all over the world.

WE TRAVEL TO THE 72ND WORLD HEALTH ASSEMBLY

Members of the civil society and activists from all over the world attended the 72nd World Health Assembly in Geneva, Switzerland, to listen to the stances and speak out together for the right to health. A highlight of the Assembly was the continued declarations and commitments made by the nations –including Spain- with regard to transparency in prices and Research and Development costs of drugs. After more than 70 hours of negotiations, the WHO approved the resolution “Improving the transparency of markets for medicines, vaccines, and other health products”. Unfortunately, it was much less ambitious than was necessary, as the pressure exerted by countries such as the UK, the US and Germany removed the topic of transparency with regard to R+D costs and public investment from the final text.

WE PARTICIPATE IN THE FARMAMUNDI SUMMER COURSE AT THE UCM

In July, as part of the Complutense University summer courses, we were invited to participate in the course “The price of medication: contributions from the perspective of the right to health” within the framework of the Farmamundi chair “Right to health and access to medicines” at the Complutense University of Madrid. The course sought to analyse the global, regional and national policies that influence the price of this precious good for all.

MEETING WITH DONORS AND CIVIL SOCIETY IN SALZBURG (NOVEMBER)

In October, our collaboration with the Open Society Foundations gave us the chance to share with activists from different places, the work carried out within Spain. Sharing successful experiences and identifying common interests was one of the main results of the meeting. The connections between the organisations and the pooling of tasks has helped to promote joint work and to endow the organisation’s work with a wider scope.

PARTICIPATION IN INTERNATIONAL NETWORKS

Networking is one the principal lines of action at Right to Health and it is especially relevant within the scope of access to medications. Right to Health has been an active participant in the European Alliance for Responsible R&D and Affordable Medicines alongside civil European society. We have also participated in the global network for access to medications and in Latin American networks. Finally, the Health Action International network has also been a meeting space where we have exchanged information and experiences and thus contributed to the cohesion of the movement and to reflections on the topic of access to medications.

WE COLLECT SIGNATURES FOR THE DEBATE ON DRUG PRICING AND TRANSPARENCY TO BE ADMITTED INTO CONGRESS

In November, the organisations and professionals behind the Popular Legislative Initiative (ILP in Spanish) “Medicines at a fair price” began a campaign at the entrance to the Congress of Deputies to collect the 500,000 signatures required to proceed with this legislative project, which seeks to change the current system of drug price fixing, to promote measures for transparency in healthcare and to create an independent fund for research and training.

(IT’S NOT HEALTHY)

WE SHARED THE NO ES SANO (IT’S NOT HEALTHY) MODEL WITH EUROPEAN CIVIL SOCIETY

No es Sano (It’s Not Healthy) held a two-day workshop in Barcelona with the representatives of civil European society from 7 countries: Italy, France, Belgium, Portugal, United Kingdom, the Netherlands and Spain. A total of 12 organisations participated in the event: Right to Health, Altroconsumo, Medecins du Monde, Test Achat, DecoProteste, Doctors of the World, Wemos, AAJM, OCU, Médicos del Mundo, PLAFH and ARES. Additionally, PLAFH and ARES also shared their vision from the perspective of medical residents and patients, with the workshop. The No es Sano model was held up as an example of collaborative networking with regard to access to medications, and participants shared their experiences from all angles, organisations and countries. It was a very enriching experience and served to highlight the value of No es Sano, to inspire others to create similar networks in their countries of origin, increase closeness with civil society in other countries, and also to strengthen our national network.

WE RECEIVE RESPONSES TO OUR PETITIONS FOR TRANSPARENCY

In July, the Inter-Ministerial Commission on the Price of Drugs (from the Spanish Comisión Interministerial de Precios de los Medicamentos), the body in charge of authorising and fixing the prices of drugs in Spain, published information on the criteria used to greenlight medications to be included in the National Health System; drugs that were not included and the reasons why, for example, their minimal therapeutic value or the high price of the medication. This was an essential step and an important result of the demands made to the Ministry of Health on the topic of transparency by Right to Health in recent years through its campaign No es Sano (It’s Not Healthy). Because it is only with transparency that we shall successfully change this model and place the right to health above market interests.

WE ANALYSE THE ELECTORAL PROGRAMMES IN SPAIN AND PROPOSE MEASURES FOR THE SUSTAINABILITY OF OUR HEALTH SYSTEM

Prior to the April elections, we carried out an analysis of the electoral programmes of the major political parties and concluded that they did not sufficiently consider the significantly increased public spending in medications which were becoming progressively more expensive. Therefore, after the No es Sano (It’s Not Healthy) analysis (as well as the Polétika analysis, the political watchdog of which Right to Health is a member) of each programme, we drafted different proposals for controlling pharmaceutical costs for each political party, and to provide our national health system with the resources required to cover the needs of patients and medical personnel.


10N ELECTIONS: WE CAN WAIT NO LONGER

Prior to the elections in November, we asked the principal political parties to take urgent steps to guarantee access to medications with fair prices and under equal conditions in all Autonomous Communities. By means of a letter, we reminded the principal candidates that the future of the healthcare system was at risk and therefore, it was essential to emerge from this political paralysis and face the challenges of Healthcare.

[NO ES SANO] OUR TALKS TO RAISE AWARENESS

As part of our efforts to raise awareness on behalf of the No es Sano (It’s Not Healthy) campaign, we have participated in talks and events to take our messages to a wider public and to shine the spotlight on students who have also become important allies and are committed to defending the right to health and access to medicines. We have passed through various areas of Barcelona, Albacete and Madrid in collaboration with students’ and residents’ associations such as CEEM, IFMSA and ARES. We also imparted a class within the Master’s degree course on Cooperation at Miguel Hernández University in Alicante.

WE DEMAND GREATER TRANSPARENCY BETWEEN PUBLIC HEALTHCARE AND THE PHARMACEUTICAL INDUSTRY, FOCUSING ON THE KEY ROLE OF THE AUTONOMOUS COMMUNITIES

Within the framework of the regional elections in 2019, we condemned how the unstoppable increase in the price of medications, especially the most innovative medicines and those aimed at treating serious illnesses such as cancer, had increased pharmaceutical and hospital expenditure by 31% in all Autonomous Communities, thus reducing the budget for other hospital needs. We drafted a letter to the principal political parties asking them to commit to the implementation of measures (transparency, accountability, alternative models, etc.) to remedy this situation.


POLITICAL DIALOGUE WITH THE AUTONOMOUS COMMUNITIES AND POLITICAL REPRESENTATIVES AT THE NATIONAL LEVEL

All year long, we have worked intensively to take our petitions and recommendations on access to medications to policy-making spaces, both at the national and the regional level. Along these lines, our efforts have focused on creating spaces for dialogue where fundamental aspects that require change, both in the model of biomedical innovation and in the pharmaceutical policy on innovative medications, may be communicated to the relevant parties in Congress and in the Government. Given that Right to Health and the No es Sano (It’s Not Healthy) initiative coordinate and work with other associations of consumers, professionals and members of civil society, it is also essential that our petitions reach and are discussed among those responsible for pharmaceutical policy at the regional level. Between October and December, we spoke with representatives of Aragón, Navarre, Cantabria, the Canary Islands, Castilla y Leon and Castilla - La Mancha.
WE ARE A NON-PROFIT FOUNDATION THAT DEFENDS HUMAN RIGHTS SO THAT ALL PEOPLE,
WHEREVER THEY LIVE, CAN EXERCISE THEIR RIGHT TO HEALTH.