Real Situation on Association Development, Social, Societal Aspects and Patients’ Rights in...

Real Situation on Association Development, Social, Societal Aspects

and Patients’ Rights

in Eastern European Countries

International Diabetes Federation European Region Annual Meeting 2006

Warsaw, Poland 3 – 5 November

Vida AugustinieneMember of Board, IDF European Region

President, Lithuanian Diabetes Association

BACKGROUND AND AIMS

According to my initiative, a brief survey on real situation on association development, social, societal aspects and patients’ rights has been performed in the Eastern European Countries (Georgia, Azerbaijan, Belarus, Kazakhstan, Kirghizstan, Russia, Ukraine) in 2006.

MATERIALS AND METODS

Eastern European Countries Meeting ,,Association development for a better life with diabetes” was organized in Tbilisi, Georgia, 12 – 13 May, 2006. Before the meeting I prepared and sent a questionnaire to all 7 members of IDF – Diabetes Associations of EEC:

• Azerbaijan Diabetes Society,• Belarussian Humanitarian Organization, • Georgian Union of Diabetes and Endocrine Associations,• Diabetes Association of the Republic of Kazakhstan,• Diabetes Association of Kirghizstan, • Russian Diabetes Federation, • Ukrainian Diabetyc Federation.

Questionnaire was prepared according references:

• Diabetes care and research in Europe: the St Vincent Declaration action programme/edited by H. M. J. Krans, M. Porta and H. Keen, Copenhagen: WHO, Regional Office for Europe, 1992.

• IDF Diabetes Atlas, 2000& 2003.

• Together we are stronger, A Guide for Diabetes Associations, IDF, 2000.

• European Charter of Patients’ Rights, Active Citizenship Network, 2002

• Declaration on Patient-Centred Healthcare, International Alliance of Patients’ Organizations, 2006.

• www.idf.org

http://www.idf.org/

http://www.idf.org/

http://www.idf.org/

13 main questions were put in the questionnaire:

1. Do you have any problems in your country organizing activities of diabetes associations?

2. Do you need any help from IDF/ Europe?3. What are your suggestions to IDF/Europe

Board for better cooperation with diabetes associations of EEC?

4. Do you have National Diabetes Plan?5. Is your organization recognized as equal

partner in making healthcare decisions in the State institutions?

6. Does your organization publish the newspaper (journal)?

13 main questions were put in the questionnaire:

7. Do you have home page of organization on website?8. Do people with diabetes have routinely free access to insulin

(animal, human, analogues), tablets? Which part of price of medicine does the government reimburse?

9. How many blood glucose monitoring tests are free for people with diabetes?

10. Do children and adolescents have the same social rights as their non-diabetic fellows?

11. Do people with diabetes have routinely free access to diabetes education, foot care, consultation of endocrinologist, oculist, cardiologist, and other health specialists?

12. Do people with diabetes have unreasonable restrictions, ignorance, prejudice to drivers’ licence, employment, life and health insurance?

13. Do you have any comments on social, societal aspects and patients’ rights in your country?

The results of survey were used:

• In Board Meeting of IDF European Region, Brussels, 23 September, 2006

• Sent to 7 Patients’ Diabetes Organizations from Eastern European Countries

SUMMARY OF SURVEY

I have got answers from all 7 Eeastern European countries:

• Azerbaijan (M. Omarova), • Belarus (S. Zaharova), • Georgia (J. Schelestiova), • Kazakhstan (N. Tukalevskaja), • Kirghizstan (R.Sultanalijeva), • Russia { Moscow DA (E. Gustova), Russian DA (A.

Mayorov), All Russian DA (M. Bogomolov), St. Peterburg DS (M. Schipulina),

• Ukraine (V. Ocheretenko).

What is Real Situation on Associations Development for a Better Life with Diabetesin the 7 Eastern European Countries?I. Development

S.N.

Questions/Answers

AzerbaijanDA

Belarussian

HO

GeorgianDU

Kazakhstan

DA

KirghizstanDA

UkrainianDF

Russian Diabetes Federation

Moscow DA Russian DA All Russian DA

St. Petersbu

rg DA

1. Do you have any problems in country organizing activities of Diabetes Associations?

Bureaucracy of governmental sector;Lack of coordination among Diabetes Organizations

Financial;Only Volunteer work

Financial Financial;Low activity and exploitative position of patients

Lack of information;Lack of National register of patients;Lack of endocrinologists, diabetologistsare’nt Low activity of patients

Non-existence of Law for NGO

Bureaucracy in all levels of government;Conservatism of health professionals;High prices for rent;Lack of support from businessmen;Low activity and exploitative position of patients

Financial;Large territory – difficulties to organize regional meetings;Lack of professionals in RDA to organize contacts with government;Incomprehension of society the role of patients organizations

Passivityof NDA, formalism of activity,unformed public,interference for NGO activity from side of government

Lack of relation among sectors of society, difficulties for NGO to solve social problems

I. Development (continue)

S.N. Questions/Answers

AzerbaijanDA

Belarussian

HO

Georgian

DU

Kazakhstan

DA

Kirghizstan

DA

Ukrainian

DF



2 Do you need any support from IDF/Europe?

More round table discussions, sessions in countries

Grants;Joint projects

Financial Policy

Financial,Institution,Information

Information from IDF in Russian

Information,Methodical, Grants for managers of NDA

Information,Grants for National projects

More informationTraining courses for representatives of NDA about development of organizations;Grants for National projects

We do not expect any support

I. Development (continue)

S.N.

Questions/Answers

AzerbaijanDA

Belarussian

HO

Georgian

DU

KazakhstanDA

Kirghizstan

DA

Ukrainian

DF


Moscow DA

Russian DA All Russian

DA

St. Petersburg DA

3 What are your suggestions to IDF/Europe Board for better cooperation with Diabetes Associations of EEC?

More support to EEC

Prolongation of Annual Meetings of EEC;Projects for Youth

Joint projects to reduce retinopathy Center of dialysis

More attention for patients initiative(Doctors in DA do not allow patients to be active).It must be discussed on IDF/E level

Direct contacts from IDF/E to Government of country (through EP or IPA);Twinning programme with stronger Associations;Training courses for chairs of NDA

IDF information in Russian Improvement of interplay in Board

IDF information in Russian;Create system of competitions for projects (national, regional, international level) for improving life of patients. Open discussions on projects with all members of IDF/E;Financial support for projects

Improve work with NDA from EECRepresentative in IDF/E board from EEC for coordination of activities of Associations from CIS

Now IDF/E works only for interests of pharmaceutical companies

See Q.No 2

I. Development1. Organizing activities Diabetes Associations have the same problems

in most countries. They have mentioned these problems:

• Financial (Georgia, Russia, Belarus, Kazakhstan)• Bureaucracy of governmental sector (Azerbaijan, Russia)• Low activity and exploitative position of patients (Kazakhstan,

Russia, Kirghizstan)• Non-existence of Law for NGO (Ukraine)• Interference for NGO activity from side of Government

(Russia)• Incomprehension of society the role of patients organizations

(Russia)• Lack of relation among sectors of society, difficulties for NGO to

solve social problems (Russia)• Passivity of National Diabetes Associations, formalism of activity

(Russia)• Lack of coordination among Diabetes Organizations

(Azerbaijan)• Conservatism of health professionals (Russia)

I. Development

2. Diabetes Associations would like to get from IDF/Europe such support:

• More round table discussions, sessions in countries (Azerbaijan)• Financial, Grants for National projects (Belarus, Russia, Georgia,

Ukraine, Kazakhstan)• Information in Russian (Kazakhstan, Ukraine, Russia,

Kirghizstan)• Representative from Council of experts of IPA of CIS must be in

IDF/E Board (Russia)• Training courses for representatives of NDA about development

of organizations (Russia)• Policy (Georgia)• Institution (Kazakhstan)• Methodical (Ukraine)

I. Development3. Suggestions to IDF/Europe Board for better cooperation with diabetes

associations of EEC:

• More support to EEC (Azerbaijan, Russia)• Prolongation of Annual Meetings of EEC (Belarus)• Projects for Youth (Belarus)• Joint projects to reduce retinopathy. Center of dialysis (Georgia)• More attention for patients initiative (Doctors in DA do not allow patients

to be active). It must be discussed on IDF/E level (Kazakhstan)• Direct contacts from IDF/E to Government of country through EP or IPA

of CIS (Kirghizstan)• Twinning programme with stronger Associations (Kirghizstan)• Training courses for chairs of NDA (Kirghizstan)• IDF information in Russian (Ukraine, Russia)• Improvement of interplay in Board (Ukraine)• Create system of competitions for projects (national, regional,

international level) for improving life of patients. Open discussions on projects with all members of IDF/E (Russia)

• Improve work with NDA from EEC. Representative in IDF/E board from EEC for coordination of activities of Associations from CIS (Russia)

• Now IDF/E works only for interests of pharmaceutical companies (All Russian DA)

What is real situation on social, societal aspects and patients’ rights in the 7 Eastern European Countries? II. General information and policy framework

S.N.

Situation in country

AzerbaijanDA

Belarussian

HO

Georgian

DU

KazakhstanDA

KirghizstanDA

UkrainianDF


Moscow DA (MDA)

Russian DA

All Russian DA

St. Petersbur

gDA

1.

IDF member + + + + + + +

2.

National Diabetes Plan

+Law on diabetes is approved

,,Diabetes” is included in the State programme ,,Health of Nation” Cabinet Council and Ministry of Health administrate

Plan, named NDP

Programme ,,Diabetes”

was implementin

g 2000 – 2003.Now

practically implementation of plan on diabetes is organized

by law.

No Programme was prepared by endocrinologists and coordinated with all institutions but was not approved by government because of lack of finance

+ Since 1994 programm ,,Medical support for people with diabetes” was prepared by initiative of MDA and implemented in Moscow.Since 1996 Federal Programme of Russia ,,Diabetes” is implementing.

Since 1996 Federal programme,,Diabetes”.Lack of money.

ProgrammDiabetes

ProgrammDiabetes is prepared. It must be confirmed by Duma (Council)

II.General information and policy

framework (continue) S.N.

Situation in country

Azerbaijan

DA

Belarussian

HO

Georgian

DU

KazakhstanDA

KirghizstanDA

UkrainianDF


Moscow DA (MDA)

Russian DA

All Russian DA

St. PetersburgDA

3.

Equal partner + No No + No + + No No Difficult

4.

Newspaper (magazine)

MetabolizmIn World of Diabetes

No Diabetes and

Health

Dialog No Diabetes and Life

MDA has not a newspaper.MDA has close contacts with editors of Diabetes – Lifestyle and DiaNovosti

Vestnik RDA Diabetes

newspaper

of Russi

aand

regional

issues

Diabetes

Newspaper of

St. Petersburg DA

5.

Home page No No www.diabet.ge

www.dark.os.kz

[email protected]

+ + www.rda.org.ru

www.diabetes.

org.ru

[email protected]

et

http://www.rda.org/

http://www.rda.org/

http://www.rda.org/

II. General information and policy

framework • National Diabetes Plan

• Law on diabetes is approved in Azerbaijan, Kazakhstan.• Diabetes is included in the State Health programme in Belarus.• Russia has Federal Programme of Diabetes.• Georgia has plan, named National Diabetes Plan.

• Equal partner Diabetes organizations are recognized as equal partner in making

healthcare decisions in the State institutions in Azerbaijan, Kazakhstan, Ukraine, Russia (only in Moscow).

• Newspaper Diabetes organizations in most countries (Azerbaijan, Georgia,

Kazakhstan, Ukraine, Russia) publish the newspaper or journal.• Website Diabetes organizations in Georgia, Kazakhstan, Ukraine, Russia

have home page on website.

What is real situation on social, societal aspects and patients’ rights in the 7 Eastern European Countries?

III. Reimbursement III.1. Medicine

S.N.

Name of medicine, reimbursement (%),

remarks

AzerbaijanDA

BelarussianHO

Georgian

DU

KazakhstanDA

KirghizstanDA

UkrainianDF


Moscow DA

Russian DA All Russian DA

St. Petersb

urgDA

1. Animal insulin 100%Type 2

100%Government

2. Human insulin 100%short

accessabilityof

medicine;extra pay

for patients

100%Type 1

100% 100%Governm

ent

+centralist purchase

100%Government

100%Intraurban

budget Moscow(86% penfil)

100%Government

100%Governme

ntpayfor

disabledpeople

100%governmentin St Petersburg

III. Reimbursement III.1. Reimbursement of medicine

• Government compensates 100% for human insulin in all countries with restrictions in Azerbaijan (short accessability of medicine, extra pay for patients), Belarus (only for Type 1), Russia (only for disabled people, except Moscow and St Petersburg), and analogues insulin the same.

• In Kirghizstan is organized centralist purchase of medicine, analogues insulin are compensated only for children.

III. Reimbursement III.1. Medicine (continue)

S.N. Name of medicine, reimbursement (%),

remarks

Azerbaijan

DA

Belarussian

HO

GeorgianDU

KazakhstanDA

KirghizstanDA

UkrainianDF


Moscow DA

Russian DA All Russi

an DA

St. Petersbu

rgDA

4. Oral medicines 100%short

accessability of

medicine;extra pay

for patients

100% extra pay for

patients

Supplyfromlocal

budget~50%(100 - 18%)

100%short

accessability of medicine

from regional budget;

extra pay for patients

No Reimbursement

100%Intraurban budget

of Moscow

100%extra pay for

patients for new

medicine

100%Governme

ntpayfor

disabledpeople

5. Glucagon

6. Insulin pumps and pump accessories

7. Pens 100% +

8. Syringes 100% +

8. Other medicines

III. Reimbursement III.1. Reimbursement of medicine

• Government compensates 100% for oral medicine in most countries with restrictions. Short accessability of medicine and extra pay for patients are in Azerbaijan, Kirghizstan. Oral medicine are not reimbursed in Georgia and Ukraine.

• Accessability of medicine depends from local budget in Kirghizstan, Kazakhstan, Russia.

• Animal insulin is used only in Belarus and Ukraine (100% compensation).

• The Government do not compensate Glucagon, Insulin pump in any country.

• Compensation of 100% of pens and syringes is mentioned in questionnaire only in Kirghizstan and Russia (only in Moscow).

• No countries mention compensation of other medicine for people with diabetes in their answers to the questionnaire.

What is real situation on social, societal aspects and patients’ rights in the 7 Eastern European Countries? What is real situation on social, societal aspects and patients’ rightsin the 7 Eastern European Countries?

III. Reimbursement III.2. Monitoring stripsS.N. For people with T1

and T2 Diabetes, reimbursement % and number of strips per year

AzerbaijanDA

Belarussian

HO

GeorgianDU

KazakhstanDA

KirghizstanDA

UkrainianDF



1. Type 1 No

1.1 Children Under 18 year only

1

strip/day

100%All strips for year

300 strips/year

No4 strips/day (supply from KDA)Since 2004 free glucometers from funds of Germany

200 strips/year

800 ( + 100 for acetone)By medical indications can be reimbursed extra strips

From regional budget. In different regions 400 – 1200 strips/year

Till nowit depends from regional budget.Better situation is in big towns

1.2 Adult No No 400( + 100 for acetone)

0 – 600 strips/year

1.3 Pregnant woman No No By medical indications in time pregnancy + 3

month after pregnancy

III. Reimbursement III.2. Monitoring strips

(continue) S.N.

For people with T1 and T2 Diabetes, reimbursement % and number of strips per year

Azerbaijan

DA

BelarussianHO

GeorgianDU

KazakhstanDA

KirghizstanDA

UkrainianDF



St. Petersburg DA

2.

Type 2 No

2.1

Children No

2.2

Adult No No 400 (with insulin)

200 (with oral

medicine)

50 visual strips/month (with insulin)

2.3

Pregnant woman

No By medical indications

in time pregnancy + 3 month

after pregnancy

Remark: now is not reimbursement for strips, but it is covered in the NDP

By medical indications for people

with nephropath

y

III.2. Reimbursement of Monitoring strips

• Government compensates 100% different number of strips in different countries.

• In most countries strips are compensated only for children.

• Best situation is in St Petersburg, Russia (100 strips/month).

• In Moscow 800 strips/year (+ 100 for acetone), by medical indications extra strips can be reimbursed.

• In Kazakhstan - 300 strips/year.

• In Russia compensation depends from regional budget. In different regions 400 – 1200 strips/year for children. Better situation is in big towns.

• In Georgia - 100% of all strips for year.

• Ukraine - 200 strips/year.

III.2. Reimbursement of Monitoring strips

• Monitoring strips are not reimbursed even for children in Azerbaijan, Belarus and Kirghizstan.

• Monitoring strips for adults with diabetes are reimbursed only in

Moscow {400 strips/year ( + 100 strips for acetone)} and St Petersburg (50 visual strips/month for people treated with insulin).

• In Russia (0 – 600 strips/year), compensation depends from regional budget.

• In Moscow pregnant women get free strips by medical indications in time pregnancy + 3 month after pregnancy. By medical indications for people with nephropathy strips are free too.

Reimbursement of HbA1c

No country mentioned reimbursement of HbA1c.

What is real situation on social, societal aspects and patients’ rights in the 7 Eastern European Countries?

IV. Do children and adolescents have the same social rights as their non-diabetic fellows?

S.N.

Social rights AzerbaijanDA

BelarussianHO

GeorgianDU

Kazakhstan

DA

KirghizstanDA

UkrainianDF


Moscow DA

Russian DA

All Russian DA

1.

Education and opportunities to participate in different types of school activities (such a camps, trips, and sports activities)

+ + + + + + Sometimes + +officially

2 Take part in physical activities during leisure time

+ + + + + + No + +officially

3 A free choice of profession (with some few necessary restrictions)

+ + + + + + No + +officially

4 Reasonable insurance rates

No

5 Can parents get the necessary economic support to give their child adequate treatment

Support from government

is skimpy

No Remark: in real situation is discrimination

IV. Children and adolescents rights • Children and adolescents have the same social rights as their non-

diabetic fellows to:1. Education and opportunities to participate in different types

of school activities (such a camps, trips, and sports activities) – in all 7 countries. Some discrimination occurs in Russia.

2. Take part in physical activities during leisure time – in all 7 countries. Some discrimination occurs in Russia.

3. A free choice of profession (with a few necessary restrictions) – in 7 countries. In Russia there is discrimination. Children conceal their disease.

4. Reasonable insurance rates – answer NO in Moscow.

• Can parents get the necessary economic support to give their child adequate treatment? • Answer NO - in Moscow. • Support from government is skimpy in Belarus.• In real situation is discrimination in Russia.

V. Do people with diabetes have routinely free access

S.N.

Access to:(Remarks)

AzerbaijanDA

BelarussianHO

GeorgianDU

Kazakhstan

DA

KirghizstanDA

UkrainianDF



1.

Diabetes education

In ADA organizatio

ns

+ Only for cityzenri

of capital

of country

No + Inaccessible in most regions

2 Foot care + + No No +

3 Endocrinologist + + + + No No +

4 Oculist + + + + No No +

5 Dietitian + + No No +

Psychologist + + No No +

Other health professionals…cardiologist…………………………………………………………………

+ + +(only lack

of new equipment

)

Lack of various

specialists.Low

quality of medical services.Better

situation in big towns.

+ NoRestrictions for people from backcountry for education

and specialists

NoLack of professionalsDoctors have 3 times more patients than by standards.

Difficulties for people from

backcountry

Low quality of medical services

Lack of professionalsLow salary of doctors

Low quality of medical

servicesTight finance for services

V. Do people with diabetes have routinely free access to:

1. Diabetes education

- YES in Azerbaijan (only in DA organizations), - - Kirghizstan (only for cityzenri of capital of country ), - Belarus and Russia.

2. Foot care – YES in Belarus, Georgia and Russia.

3. Endocrinologist and Oculist – YES in Azerbaijan, Belarus, Georgia, Kirghizstan, Russia.

4. Dietitian and Psychologist – Yes in Belarus, Georgia and Russia.

V. Do people with diabetes have routinely free access to:

• Lack of various specialists, better situation in big towns is mentioned in questionnaire of Kazakhstan,

• Russia (doctors have 3 times more patients than by standards in Moscow), Ukraine;

• Only lack of new equipment (Georgia);

• Difficulties for people from back country (Ukraine, Russia);

• Low quality of medical services (Kazakhstan, Russia).

VI. Do people with diabetes have unreasonable restrictions, ignorance, prejudice? Other Concerns.

S.N.

Restrictions to:(remarks)

AzerbaijanDA

Belarussian

HO

GeorgianDU

KazakhstanDA

KirghizstanDA

UkrainianDF


Moscow DA

Russian DA

All Russian DA

St. Petersbur

g DA

1.

Drivers’ licence No No No No No + With permission of doctor

+ Discrimination

People conceal

their disease

+

2 Employment No + No +People conceal

their disease

No + Sometimes +People conceal

their disease

Discrimination

People conceal

their disease

People conceal

their disease

3 Insurance: ▬ Life insurance ▬ Health insurance

No ++

++

NoNo

++

+ Private+ Private

+Only

compulsory insurance

is for all people

System of insurance

is not developed

VI. Do people with diabetes have unreasonable restrictions, ignorance, prejudice? Other Concerns.

(continue) S.N.

Restrictions to:(remarks)

Azerbaijan

DA

Belarussian

HO

Georgian

DU

Kazakhstan

DA

KirghizstanDA

Ukrainian

DF



St. Petersbur

g DA

4.

Other concerns Restrictionsfor professional drivers

Low pensions;Lack of pensions for elderly;Lack of reimbursement for medicine

Kazakhstan DADependence of patients from doctors;Malpractice of doctors;Non-existence of diabetes, rehabilitation centers;Low salary of doctors, lack of specialists, low living standards of patients;Low quality of education of specialists;Financial disbalance among regions;Inefficient partnership among medical sectors;Played out technical basis of medical equipments

Remark of Moscow DA:Responsibilities of governmental bodies for support of people with chronic diseases are revised by Federal law of Russia. People with invalidity get support from Federal Budget, other from regional. Support is different in regions. In Moscow all people get equal support by law of Health Department of Moscow.Remark of RDA:Patients do not know their rights.RDA has established centers of social psychological rehabilitation.

We wish to IDF/E

Board to negotiate

conformance

Lack of specialistsDifficultie

s to get efficient medical services

VI. Do people with diabetes have unreasonable restrictions, ignorance,

prejudice to:1. Drivers’ licence – YES in Ukraine, Russia. People conceal

their disease.

2. Employment – YES in Belarus, Kazakhstan, Ukraine, Russia. People conceal their disease.

3. Life Insurance – NO only in Azerbaijan, Kirghizstan.

4. Health Insurance – NO only in Azerbaijan, Kirghizstan. In Russia only compulsory insurance is for all people. System of insurance is not developed in Russia.

Other comments on social, societal aspects and patients’ rights were

mentioned in questionnaire.

• Restrictions for professional drivers in Azerbaijan.

• Low pensions; Lack of pensions for elderly; Lack of reimbursement for medicine in Georgia.

• Dependence of patients from doctors; Malpractice of doctors; Non-existence of diabetes, rehabilitation centers; Low salary of doctors, lack of specialists, low living standards of patients; Low quality of education of specialists; Financial disbalance among regions; Inefficient partnership among medical sectors; Played out technical basis of medical equipments in Kazakhstan.

Other comments on social, societal aspects and patients’ rights were

mentioned in questionnaire.

• Federal law of Russia revises responsibilities of governmental bodies to support of people with chronic diseases. People with disabilities get support from Federal Budget, other from regional. Support is different in regions. In Moscow all people get equal support by law of Health Department of Moscow. Patients do not know their rights. RDA has established centers of social psychological rehabilitation.

• Lack of specialists; Difficulties to get efficient medical services in St Petersburg.

Conclusions

I hope that this brief survey will help IDF/Europe Board to have more information on the real situation on Associations development, social, societal aspects and patients’ rights in 7 Eastern European Countries.

Conclusions

In my opinion IDF/Europe Board has to hear problems, mentioned in this paper, and to give more attention to region of Eastern European Countries in the nearest future.

©Vida Augustiniene, Lithuanian Diabetes Association

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