Fighting chronic disease: The power of partnership

7/27/2019 Fighting chronic disease: The power of partnership

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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


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Index

1. Presentation of my organization

2. The context in my Country starting from the

point of view of patients

3. Chronic diseases and bureaucratic problems4. Chronic diseases and economic problems

5. Chronic diseases and chronic pain

6. Chronic diseases and training of leader ofpatients organizations

7. Chronic diseases and patients rights

8. An invitation


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Cittadinanzattiva

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


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Who we are

107.539 members on voluntary basis, organizedin

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: www.cittadinanzattiva.it


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Promotion of network

Active Citizenship Network Read

more

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 EUCharter 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 memberassociations. From 2000, it ublish a:
http://www.activecitizenship.net/http://www.activecitizenship.net/http://www.activecitizenship.net/http://www.activecitizenship.net/


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European Patients rights Charter

Charter of rights against unnecessary pain

Colombian Patients right Charter

Examples: Charter of

Rights
http://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.cittadinanzattiva.it/approfondimenti/attivismo-civico/attivi-nel-mondo/2875-proyecto-qdadq-carta-de-los-derechos-de-los-pacientes.htmlhttp://www.cittadinanzattiva.it/corporate/salute/5014-italy-charter-of-rights-against-unnecessary-pain.html


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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.

C f i d l


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Causes of missed/ latediagnoses

Delayed sending the patient to the

specialist65%

Scarcity of specialized Centers 63%

Absence of defined diagnostic care pathways

for each pathology44%

Waiting list for visits and diagnostic tests 42%

Sour ce: CnAMC-Cittadinanzatt iva, 2010

Data col lected with thecontr ibut ionof 48 member associat ions of CnAMC


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at local level & inadequate home

care

Discharged from hospitals, patients reported no activation of

local services

69%

Community care: Dissatisfaction related rehabilitation 69%

Community care: Dissatisfaction related prosthetic assistance 63%

Community care: Lack of integration between

health interventions and social interventions

59%

Home care: Limited involvement of the family doctor 59%

Home care: the personnel involved is not always considered

to be adequately competent

59%

Home care: the team is devoid of specific professional

figures for the disease

53%

Sour ce: CnAMC-Cittadinanzatt iva, 2010

Data col lected with thecontr ibut ionof 48 member associat ions of CnAMC


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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 50%

Non-reimbursement of some drugs, althoughthey are essential for the health of chronic patients 50%

Limitation of prescription by physicians and pediatricians 38%

Restrictions due to Regional decisions 35%

In addition, over the counterdrug (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

Source: CnAMC-Cittadinanzatt iva, 2010

Data collected with thecontr ibut ionof 48 member associat ions o f CnAMC
http://www.cittadinanzattiva.it/comunicati/salute/politiche-sanitarie/4158-xi-report-on-the-policies-of-chronicity-by-cittadinanzattiva.htmlhttp://www.cittadinanzattiva.it/comunicati/salute/politiche-sanitarie/4158-xi-report-on-the-policies-of-chronicity-by-cittadinanzattiva.htmlhttp://www.cittadinanzattiva.it/comunicati/salute/politiche-sanitarie/4158-xi-report-on-the-policies-of-chronicity-by-cittadinanzattiva.htmlhttp://www.cittadinanzattiva.it/comunicati/salute/politiche-sanitarie/4158-xi-report-on-the-policies-of-chronicity-by-cittadinanzattiva.html


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a can c zensobtain Some examples of success stories relevant to the

Italian and European milieu as a result of

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 empowermentof leader of patients organizations

Chronic diseases and patients rights

Ch i di


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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 Read more I National Report on civil disability and bureaucracy

What we have ach ieved: 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

Ch i di &
http://www.sonounvip.it/component/content/article/2-non-categorizzato/78-the-reason-for-this-campaign.htmlhttp://www.cittadinanzattiva.it/comunicati/salute/invalidita-civile-handicap/5262-cittadinanzattiva-i-report-on-civil-disability-and-bureaucracy.htmlhttp://www.sonounvip.it/component/content/article/2-non-categorizzato/78-the-reason-for-this-campaign.html


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Chronic diseases &economic problems (I)

Context:The recent growing phenomenon of fuel poverty

It is estimated that between 50 and 125 million European citizens arethe 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 LateralSclerosis (10%)

Ch i di &


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Some relevant data:

An annual average spending of1.152: this is the amount of the energybill 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 to3.000.

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), while482 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 ach ieved:

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 theassociations. Read more

Chronic diseases &economic problems (II)

Ch i di &
http://www.cittadinanzattiva.it/progetti-e-campagne/salute/malattie-croniche-e-rare/4405-energy-and-chronically-ill.htmlhttp://www.cittadinanzattiva.it/progetti-e-campagne/salute/malattie-croniche-e-rare/4405-energy-and-chronically-ill.htmlhttp://www.cittadinanzattiva.it/progetti-e-campagne/salute/malattie-croniche-e-rare/4405-energy-and-chronically-ill.htmlhttp://www.cittadinanzattiva.it/progetti-e-campagne/salute/malattie-croniche-e-rare/4405-energy-and-chronically-ill.html


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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 Average per year

Welfare support (carer), supplementary than assistance

provided by the National Health Service 9.400

Purchase of necessary drugs (and not reimbursed byNational Health Service) for the treatment of disease 2.500

Access to psychological support service 1.800

Purchase of principals, prostheses and aids not guaranteed

by National Health Service 1.600

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

850

Energy bill 482

Source: CnAMC XI Report Cittadinanzattiva, 2012 (The Report comes from data collected from 28 of86 national associations representing more than 100000 citizens affected by chronic diseases)

Chronic diseases &


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Chronic diseases &increasing private costs (II)

Iftheres 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, amongthose, only 30% claim to be healthy.

Source: CnAMC XI Report Cittadinanzattiva, 2012 Read more

Annual costs (on average) privately incurred by a family with a chronically ill elderly

Nanny 8.488

Specialist visits or rehabilitation activities at home 3.718

Purchase of prostheses and aids 944

Fee for residential and /or semi-residential structures 13.946

Specialist visit carried out in the private or intramural 855 Investigations carried out in the private or intramural 1.034

Purchase of necessary drugs that are not reimbursed by the NHS 1127

Purchase of para-pharmaceuticals (i.e. food supplements, skin cosmetics,creams, ointments, artificial tears, etc) 1297

Chronic diseases & chronic
http://www.cittadinanzattiva.it/comunicati/salute/politiche-sanitarie/4158-xi-report-on-the-policies-of-chronicity-by-cittadinanzattiva.htmlhttp://www.cittadinanzattiva.it/comunicati/salute/politiche-sanitarie/4158-xi-report-on-the-policies-of-chronicity-by-cittadinanzattiva.html


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Chronic diseases & chronicpain (I)

Context:The underestimation of pain

In Europe, the commitment against unnecessary pain is going to enter in theEuropean 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 inthe 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 thatdeals with chronic pain and health policies.

ron c seases c ron c
http://www.pae-eu.eu/http://www.pae-eu.eu/


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ron c seases c ron cpain (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 isnot respected in 6 Countries, hardly respected in Portugal, almost

Ch i di & h i i


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Chronic diseases & chronic pain

(III)

What we want to ach ieve:

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 painrelief. 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
http://www.activecitizenship.net/patients-rights/projects/115-pain-patients-pathway-recommendations.htmlhttp://www.activecitizenship.net/patients-rights/projects/115-pain-patients-pathway-recommendations.html


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empowerment

of leader of patients organizationsContext :

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 RegionalHealth Services , Italian Society for the Health Technology Assessment,

Federation of Italian public health hospitals (FIASO)

Read more

What we h ave ach ieved:

To facilitate the training to 50 leaders of chronic associations and civicorganization Read more

Chronic diseases & patients
http://www.activecitizenship.net/patients-rights/projects/84-summer-school-for-civic-leader-in-hta-the-italian-experience.htmlhttp://www.cittadinanzattiva.it/progetti-e-campagne/salute/altro/5259-summer-school-for-civic-leader-on-health-technology-assessment.htmlhttp://www.cittadinanzattiva.it/progetti-e-campagne/salute/altro/5259-summer-school-for-civic-leader-on-health-technology-assessment.htmlhttp://www.cittadinanzattiva.it/progetti-e-campagne/salute/altro/5259-summer-school-for-civic-leader-on-health-technology-assessment.htmlhttp://www.cittadinanzattiva.it/progetti-e-campagne/salute/altro/5259-summer-school-for-civic-leader-on-health-technology-assessment.htmlhttp://www.activecitizenship.net/patients-rights/projects/84-summer-school-for-civic-leader-in-hta-the-italian-experience.htmlhttp://www.activecitizenship.net/patients-rights/projects/84-summer-school-for-civic-leader-in-hta-the-italian-experience.htmlhttp://www.activecitizenship.net/patients-rights/projects/84-summer-school-for-civic-leader-in-hta-the-italian-experience.html


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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 NationalHealth 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 healthcarein 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 toinformation, to quality of care, etc.

ron c seases pa en s r g s
http://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.htmlhttp://www.activecitizenship.net/patients-rights/projects/29-european-charter-of-patients-rights.html


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ron c seases pa en s r g s(II)

What we have done:

Last May we presented a Manifesto for the implementation of theRight 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 collaborationwith institutions and atients association: are ou interested? Read

Patients empowerment
http://www.activecitizenship.net/patients-rights/projects/117-make-them-informed.htmlhttp://www.activecitizenship.net/patients-rights/projects/117-make-them-informed.htmlhttp://www.activecitizenship.net/patients-rights/22-gallery/67-directive-on-patients-rights-in-cross-border-healthcare.htmlhttp://www.activecitizenship.net/patients-rights/22-gallery/67-directive-on-patients-rights-in-cross-border-healthcare.htmlhttp://www.activecitizenship.net/patients-rights/projects/117-make-them-informed.htmlhttp://www.activecitizenship.net/patients-rights/projects/117-make-them-informed.html


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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 ofinnovative 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 empowermentas value and resources (I)

Patients empowerment


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Patients empowermentas value and resources (II)

Whatwell do :

We have decided to dedicate the 8th celebration of the

European Patients Rights Day 2014 to:

The role ofcitizens organizations in the empowerment of patients

with chronicdiseases.

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 ofpatients 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.


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Thanks for your attention!

Mariano Votta

Director

Active Citizenship Network

[email protected]

www.cittadinanzattiva.it www.activecitizenship.net
mailto:[email protected]://www.cittadinanzattiva.it/http://www.activecitizenship.net/http://www.activecitizenship.net/http://www.cittadinanzattiva.it/mailto:[email protected]

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Fighting chronic disease: The power of partnership