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Fighting chronic disease The power of partnership

The experience of Cittadinanzattiva Active Citizenship Network

Mariano Votta
Director Actvice Citizenship Network
Istanbul, September 24th, 2013

1. Presentation of my organization 2. The context in my Country starting from the point of view of patients 3. Chronic diseases and bureaucratic problems 4. Chronic diseases and economic problems 5. Chronic diseases and chronic pain 6. Chronic diseases and training of leader of patients organizations 7. Chronic diseases and patients rights 8. An invitation

An Italian non-profit organization founded in 1978

Independent from political parties, trade unions, private companies or public institutions
Recognized as consumers organization
Our mission: Civic participation & Protection of citizens rights

A Network of Networks: Health, Consumer rights, Education, Justice, Corporate Social Responsibility, European citizenship

Who we are
107.539 members on voluntary basis, organized in 273 Local Assemblies 21 Regional Congress and 1 National Congress 8 Federated Associations Headquarter in Rome with 40 employees / 8 units

50,000 phone contacts per year

300,000 monthly website visits

Read more:

Promotion of network
Active Citizenship Network
more Read

Is a EU network of 90 citizens organizations from 30 countries, created in 2001 with the aim to develop a European active citizenship and promote the participation of citizens in policy making especially in the health-care field. In 2002, ACN, drafted the EU Charter of Patients Rights which has become a reference for EU rights in the healthcare and, in 2007, ACN launched the EU Patients Rights Day, celebrated every year on 18th April through local, national and EU events organized all over Europe.
National Coalition of Associations for Patients suffering Chronic Diseases

(CnAMC) created in 1996, it represents an example of crosscutting alliance between associations of people with chronic and rare diseases, for the protection of their rights. It has about 100 member associations. From 2000, it publish a:

Examples: Charter


European Patients rights Charter Charter of rights against unnecessary pain Colombian Patients right Charter

Chronic disease in Italy

Increase : 38,8% of citizens is suffering from at least one chronic disease (35,9% of the population in 2001). Among the c. d., the most common are: arthrosis/arthritis (17.8%), hypertension (15, 8%), allergic diseases (10,2%), osteoporosis (7,3%), chronic bronchitis and bronchial asthma (6,2%), diabetes (4,8%). 4 many problems: late diagnosis, lack of community care/ lack of health care at local level, the access to medicines is difficult and unequal throughout the country, increasing private costs.

Causes of missed / late diagnoses

Delayed sending the patient to the specialist
Scarcity of specialized Centers


Absence of defined diagnostic care pathways 44% for each pathology Waiting list for visits and diagnostic tests 42%

Source: CnAMC-Cittadinanzattiva, 2010 Data collected with the contribution of 48 member associations of CnAMC

Lack of community care/ health care at local level & inadequate home care
Discharged from hospitals, patients reported no activation of local services Community care: Dissatisfaction related rehabilitation Community care: Dissatisfaction related prosthetic assistance Community care: Lack of integration between health interventions and social interventions Home care: Limited involvement of the family doctor Home care: the personnel involved is not always considered to be adequately competent

69% 63% 59% 59% 59%

Home care: the team is devoid of specific professional figures for the disease


Source: CnAMC-Cittadinanzattiva, 2010 Data collected with the contribution of 48 member associations of CnAMC

Lack of access to medicines

Uneven distribution between Regions and local health unit 50% Limitation by hospitals and local health unit due to budget 50% Difficulty in issuing and renewal of the Treatment Plan Non-reimbursement of some drugs, although they are essential for the health of chronic patients Limitation of prescription by physicians and pediatricians Restrictions due to Regional decisions
Source: CnAMC-Cittadinanzattiva, 2010 Data collected with the contribution of 48 member associations of CnAMC

50% 50% 38% 35%

In addition, over the counter drug (such as dietary supplements, special foods, creams artificial tears) considered indispensable for the treatment of the disease, but despite this, paid by the patients. The consequence are increasingly costs for families living with chronic patients. Read more

What can citizens Some examples ofobtain success stories relevant to the
as a result of

Italian and European milieu Cittadinanzattiva leadership.

Many were initiated after suffering unjust treatment. But not for vengeance. Only because others should not go through our same experience

Chronic diseases and bureaucratic problems Chronic diseases and economic problems Chronic diseases and chronic pain Chronic diseases and empowerment of leader of patients organizations Chronic diseases and patients rights

Chronic diseases & bureaucratic problems

Context: The odyssey of citizens to access civil invalidity in Italy
72% of citizens still find excessively complex and long the procedure to establish civil invalidity 80% consider that the criteria for access to cares allowance have been unjustly tightened.

What we have done:

Communication campaign I National Report on civil disability and bureaucracy

Read more

What we have achieved:

Simplify bureaucratic procedures: (less time for citizens, less cost to the public): for some diseases is not necessary to came back for a visit; to receive the free mobility pass No interruption of the economic benefits between one visit and the other

Chronic diseases & economic problems (I)

Context: The recent growing phenomenon of fuel poverty It is estimated that between 50 and 125 million European citizens are the edge of the fuel poverty or at least at risk of being affected. Fuel poverty is caused by a convergence of several factors: low income, high fuel prices, poor energy efficiency of a home and, of course, illnesses at home. What we have done: The first civic survey in Italy on the economic impact of energy costs on the income of families affected by disability, conducted in partnership with the State-owned company Acquirente Unico and 5 patient associations linked to our Chronic Diseases network The survey limited the phenomenon of fuel poverty to families with people suffering from chronic disabling diseases: muscular dystrophy (42.5%), multiple sclerosis (30%), patients afflicted by chronic obstructive pulmonary disease (17.5%) and Amyotrophic Lateral Sclerosis (10%)

Chronic diseases & economic problems (II)

Some relevant data: An annual average spending of 1.152: this is the amount of the energy bill that a family forced to use electro-medical equipment has to pay. Practically, more than double that one of a family type. And sometimes these costs come to 3.000. Taking into account the average annual expenditure for electricity of a typical household in Italy is 515, these households spend 637 more. Of these, only a fraction are covered by the electricity social bonus (155), while 482 are completely paid by families. Because of the lack of information, 16% of patients have no access to the electricity social bonus.

What we have achieved: After the presentation to the Senate of the Republic, the Authority for Electricity and Gas adopted a new bonuses for seriously ill patients, showing not only to be able to act very quickly on important issues, but also to carefully consider the civic information produced by the associations. Read more

Chronic diseases & increasing private costs (I)

The energy bill so high has to be added to several additional private costs that many disabled persons with chronic disease are forced to support: we talk about a 16.000 per year

Disability & private costs: type of expense

Welfare support (carer), supplementary than assistance provided by the National Health Service Purchase of necessary drugs (and not reimbursed by National Health Service) for the treatment of disease Access to psychological support service Purchase of principals, prostheses and aids not guaranteed by National Health Service Diagnostic performance (examinations for follow-up) equired for the treatment and/or monitoring of the disease, which are not provided free of charge by National Health Service

Average per year

9.400 2.500 1.800 1.600


Energy bill


Source: CnAMC XI Report Cittadinanzattiva, 2012 (The Report comes from data collected from 28 of 86 national associations representing more than 100000 citizens affected by chronic diseases)

Chronic diseases & increasing private costs (II)

If theres an elderly chronically ill, the family is often in trouble, not only economic one. We speak about thousands of persons: in Italia more than 50% of people between 65 and 74 years of age has at least one chronic disease and, among those, only 30% claim to be healthy.
Annual costs (on average) privately incurred by a family with a chronically ill elderly Nanny Specialist visits or rehabilitation activities at home Purchase of prostheses and aids Fee for residential and /or semi-residential structures
8.488 3.718

13.946 855 1.034 1127 1297

Specialist visit carried out in the private or intramural

Investigations carried out in the private or intramural Purchase of necessary drugs that are not reimbursed by the NHS Purchase of para-pharmaceuticals (i.e. food supplements, skin cosmetics,
creams, ointments, artificial tears, etc)
Source: CnAMC XI Report Cittadinanzattiva, 2012

Read more

Chronic diseases & chronic pain (I)

Context: The underestimation of pain
In Europe, the commitment against unnecessary pain is going to enter in the European Agenda of Health policy and new laws, as Italian one, has proposed very innovative contents to put in practice. Nevertheless, the condition of patients affected of chronic pain is still very serious, as the patients associations can testify. What is affirmed in theory, it is very often denied in practice: in Italy, for example, the general practitioners do not engage as they should and as states in the law in the fight against pain. As reported by our last Annual Report on policies of chronicity (2012), 46,4% of the general practitioners does not register the pain in the elderly, 28,6% diminishes it, 25% only records it if acute.

What we have done:

Civic Assessment on the EU Charter of Patients Rights: it shows that the right to avoid unnecessary suffering and pain is hardly respected. Partnership with Pain Alliance Europe representing chronic pain patients in Europe. Report on the Assessment of the EU Patient Right of Avoiding Unnecessary Suffering and Pain in 18 countries with 37 patients & citizen organizations that deals with chronic pain and health policies.

Chronic diseases & chronic pain (II)

Some relevant data: According to the information collected by patient/civic organizations:
At European level, the Right to avoid unnecessary suffering and pain is not respected. The average value, 43 out of 100, is exceeded only by the following 5 countries: Austria, Belgium, Bulgaria, Malta, Portugal. At national level, the Right to avoid unnecessary suffering and pain is not respected in 13 Countries, partly respected in Bulgaria, almost respected in Austria and Portugal, fully respected in Malta.

According to the information collected by the ministries of health:

At European level, the Right to avoid unnecessary suffering and pain is not respected. The average value, 41 out of 100, is exceeded only by the following 3 countries: Sweden, Italy and Portugal. At national level, the Right to avoid unnecessary suffering and pain is not respected in 6 Countries, hardly respected in Portugal, almost

Chronic diseases & chronic pain (III)

What we want to achieve:

The Civic survey is a necessary step to understand which concrete proposals against pain can be put forward to European, National and local Institutions in order to identify pathways/recommendations against pain according to the patients point of view for a good health policy on chronic pain relief. We are organizing a Patient Meeting in Brussels next October 22-23rd to discuss about it, including professionals, patient association, Ministries of Health. We are working to include this issue in the EU agenda and to submit Civic Recommendations to the vote of the European institutions during the Italian EU Presidency in the 2nd half of 2014.
Read more

Chronic diseases & empowerment of leader of patients organizations

HTA bridge between the technicalscientific world and the decision makers On one hand, the involvement of stakeholders in general and citizens in particular is considered integral part of the processes of the Health Technology Assessment. On the other hand, the actual inclusion of these actors and their point of view in the evaluation process is, generally, well below the recommended level, although there are some exceptions. This does not only depends on the lack of a public policy on the subject, but also by a delay of understanding and by a gap about the knowledge from the civic leadership.

What we have done:

Two edition of the Summer school for civic Leader on Health Technology Assessment, organized in partnership with National Agency for Regional Health Services , Italian Society for the Health Technology Assessment, Federation of Italian public health hospitals (FIASO) Read more To facilitate the training to 50 leaders of chronic associations and civic organization Read more

What we have achieved:

Chronic diseases & patients rights (I)

Context: A new challenge: The Directive on Patients Rights in Cross Border Care

On the basis of 14 rights of the EU Charter of Patients 'Rights, drafted in 2002 by Active Citizenship Network in collaboration with 12 citizens' organizations from different EU countries, the more neglected rights for patients with chronic diseases by the National Health System in Italy, with large differences between the Regions are: prevention, right to access, information and time. The Directive on Patients Rights in Cross Border Care creates a clarified legal framework for patients entitlement to seek healthcare in another Member State and to get reimbursed. It also provides a legal basis for enhanced European cooperation in key areas of healthcare including quality, safety, HTA, eHealth and rare diseases. This is an innovative text which formally states for the first time the existence of EU patients rights such as free choice, right to information, to quality of care, etc.

Chronic diseases & patients rights (II)

What we have done: Last May we presented a Manifesto for the implementation of the Right of European Patients to make an informed choice, because we believe that the implementation of the principle contained in the Directive shall allow all patients to access services better adapted to their personal requirements, both abroad and in their own country/region. Please, signed it! We have created an European coordination of patients associations and other stakeholders interested in working together on the implementation of the Directive, in sharing information, as well as good and bad practices. What we want to achieve: On the 23 October 2013, two days before the official deadline for the transposition, in Brussels well deliver to DG SANCO a Report on the implementation of the Directive in the several countries. Join us! We would also like to organize information campaigns in collaboration with institutions and patients association: are you interested? Read

Patients empowerment as value and resources (I)

We strongly believe that empowered patients are a resource and not a cost On one hand, there is a general concern about the increased costs that shall derive from the pressure exercised by associations of patient with chronic diseases on health institutions, because their main objective is supposed to be increased access to and better reimbursement of innovative and expensive treatments and drugs. On the other hand, they play a decisive role in the development of a modern patient-centred health system. Therefore, the empowerment of patient organizations should be considered as an added value, because they become actual partners in the health policy, sharing with the institutions the responsibility of finding the best balance between the interest of patients and the sustainability of the system. This shall be achieved through the creation of networks and alliances, which allow the identification of common objectives and goals. This includes the development of a global and long-term perspective, which goes

Patients empowerment as value and resources (II)

What well do:
We have decided to dedicate the 8th celebration of the European Patients Rights Day 2014 to:
The role of citizens organizations in the empowerment of patients with chronic diseases.

The objective of the conference is to share best practices from different EU countries on:
1. Capacity-building and support of individual patients and their relatives (active participation in the management of care and of all the social, psychological, etc. impacts of chronic diseases) 2. Empowerment of patients organizations through the participation in national and/or European networks (coalitions, platforms, etc.)

The Conference will be held on 17-18th April 2014 (European Patients Rights Day) in Brussels and, of course, all you are invite.

Thanks for your attention!

Mariano Votta

Director Active Citizenship Network