Active Citizenship Network is glad to announce that an official agreement has been signed with Patients' Rights Association in Kosovo (PRAK), an independent non-profit and non-political association focused on promoting a fair healthcare for patients, engaging citizens and patients as equal partners in healthcare, and mobilizing other relevant actors to provide the best possible care for each patient at all times. ACN and PRAK will collaborate to raise awareness on the needs surrounding patient care and patients’ quality of life and to support each other’s initiatives on the topic of reduction of health inequalities, patients’ empowerment, and promotion of public health as a common good.
In 2022 Cittadinanzattiva, through its European branch Active Citizenship Network, is engaged in an EU project to promote at the European level the importance of access to Advanced Therapy Medicinal Products (ATMPs), which development presents new opportunities for the treatment and prevention of a variety of diseases (gene diseases, oncological diseases and diseases with long prognosis) or for restoring, correcting or modifying compromised physiological functions in humans, including by correcting mutations acquired on a genetic basis. The relevance of these innovative therapies, however, places them at the centre of the discussion on health and health policy choices for the future and the sustainability of the health service. This will pose very delicate problems of choice and rationing in terms of access to treatment for patients, which could result in the treatment of fewer patients than eligible and therefore potentially treatable. A solution in terms of identifying the resources with which to finance them must therefore be tackled today so as not to arrive unprepared.
The "Italian proposal" provides for an installment of the cost of advanced therapies which at the moment are considered current expenses, but which, to be sustainable, should be considered as investments. The project will be developed through an EU training seminar, a policy dialogue with the main EU institutions, and a call to action aimed at European decision-makers to provide greater access to ATMPs.
This project will be carried out with the unconditional contribution of #VITA which includes: Celgene – Bristol-Myers Squibb, Gilead Sciences, PTC, Roche.
Cittadinanzattiva, through its European branch Active Citizenship Network (ACN), has become involved, together with the Spanish association ALCER, in the AMR Patient Alliance, developed by IAPO P4PS Observatory, with the aim to gather the voice of patients and involve all the relevant stakeholders around the issue of antimicrobial resistance (AMR). Patients need to play a much bigger role in the fight against antimicrobial resistance (AMR), as they are directly involved in over-prescribing, overuse and self-medication, the scale and effect of which is still unknown. In order to this global public health threat, ACN has committed to undertake three main activities: a training seminar on the topic; contribution to the development of a repository of AMR-related educational, informative, and awareness-raising materials for patient organizations, patients and caregivers; support to the course “Antimicrobial Resistance: Patient Role in Rational Use” accessible to all EU citizens and developed by IAPO P4PSO and PAIR Academy.
The drafting process of a Global Health Charter, promoted by Cittadinanzattiva, has started and will be presented by the end of 2022. The Global Health Charter, focused on the three central themes of health and well-being, environment, and social justice, wants to be a useful tool in pursuing the goal of global health, with the aim to sanction and protect concrete and enforceable rights and commitments, both by citizens and institutions in every context and territory. The work began with a survey carried out by Cittadinanzattiva at the national (Italy) and, thanks to its EU branch Active Citizenship Network, at the European level too, which involved citizens and associations from 24 different countries to sound out their level of awareness and perception on the theme of global health and to succeed in delimiting a perimeter of macro areas in order to decline the Charter in the most effective way possible. The project is carried out with the unconditional support of Janssen Italia, the pharmaceutical company of the Johnson & Johnson Group.
To actively support work being done at Member State level, the Steering Group on Influenza Vaccination, of which Active Citizenship Network is part, is committed to bring together various different organisations in a EU-wide “Flu Alliance”, a network uniting key national stakeholders to spread messages, share best-practices and work together towards common goals. With the intense focus currently being placed on the pandemic, the Steering Group brings together policymakers, patient group representatives, clinicians, and industry representatives at the EU level to keep ensuring that other infectious diseases like influenza remain a key public health priority and to promote an increased uptake of influenza vaccination across Europe.
Last 18th January 2022, Cittadinanzattiva presented the document "Together for oncology: with feet on the ground and a look into the future", with the support of Novartis and realized thanks to the contribution of about 60 experts, including representatives of institutions, of universities, of the research field, of civic and patient organizations, and of the private sector. To guide the work was also the European Plan against Cancer, built on four pillars (Prevention, Early Diagnosis, Treatment and Quality of Life) and the National Recovery and Resilience Plan (NRRP), which focuses on innovation, digital health, proximity care, social inclusion, management of chronicity. The document aims to draw a long-term strategic vision in the fight against cancer in our country, with the aim of delivering the proposals to the main decision-makers currently engaged in the construction of the new National Oncology Plan. At the center of the debate is the reflection on the Covid-19 pandemic situation and the emergency of suspended or cancelled ordinary treatments due to Covid. Among the proposals contained in the document: realizing screening and vaccines in the places closest to the citizens, implementing cancer registries in all regions, building a national portal of innovation, promoting the law on the right to oblivion.
Active Citizenship Network has recently formalized an official agreement with Confederation of Meningitis Organisations (CoMO), an international network of advocates working to bring together patient groups, health professionals and organisations, meningitis survivors and families from 40 countries to help reduce the incidence and impact of meningitis worldwide. ACN and CoMo have partnered together to support each other on the promotion of the protection of patients’ rights, with particular reference to weak target groups of citizens, and on the advocacy for civic participation in the construction of public policies, with particular reference to vaccination and prevention policies.
Active Citizenship Network has recently formalized an agreement with the Cyprus Federation of Patients' Associations (CyFPA), an umbrella organization representing all the organizations of people with chronic and other diseases. CyFPA aims at supporting patients with a strong voice in the Cypriot community and ensuring that patients have access to holistic and equitable social health care, with quality and patient-centeredness. In this regard, Active Citizenship Network and the Cyprus Federation of Patients' Associations have welcomed the opportunity to collaborate to support each other’s initiatives on the empowerment and protection of patients, in particular those affected by chronic and rare diseases. Moreover, ACN and CyFPA will commit to raise awareness on the needs surrounding patient care and patients’ quality of life.
CONFERENCE ON THE FUTURE OF A HEALTHY EUROPE: “Taking part in the decision-making process on health priorities” (14:30 – 16:00 CEST)
Given the current situation of uncertainty, the conference will be organized in a digital format. To virtually attend the conference, please register here (registration is mandatory).
Active Citizenship Network is glad to announce an official new partnership with euPrevent, a Euroregional network that focuses on promoting cross-border health and sustainable partnerships to increase the quality of life of residents in the border region between the Netherlands, Belgium and Germany. In this regard, ACN and euPrevent have agreed to collaborate to increase protection of patients’ rights, diminish health inequalities among European Member States, and raise awareness on the needs surrounding patient care and patients’ quality of life.