In 2006, several patients associations reunited for a consultation with representatives of Ministry of Health. At that time, a state secretary made them the recommendation to join their forces in one coalition. The participants considered that idea interesting and developed several discussions with that purpose. On April 18, 2008, a meeting was scheduled with the purpose of the new coalition.
8 Eight representatives of patients association were present to that meeting and, also, a lawyer who led conducted the discussions to realize a statute and to sign the necessary documents for the new organization. The name of the new organization was Coalition of Patients Organizations with Chronic Diseases – COPAC (in English this abbreviation would mean “tree”). At the first meeting of the new Coalition, the management structure was set and the first measures of the Coalition were established. The purpose of COPAC was, from the first moment, to support and protect the rights of patients with chronic diseases from Romania.
From that moment, we have tried and we continue that effort of growing the organization together with patients movement, to advocate for patients rights. In present, COPAC has 19 members, NGOs, with a large range of pathologies. The purpose of the Coalition, reunited in a unique formula, is defending the patients rights when these are in danger of being violated, or when a law which affects their interests is elaborated.
2009 – The first patients protest
The year 2009 brought, beside the normal and necessary processes of organization, the first big events organized by COPAC: a patients protest. The protest was organized with the purpose of drawing attention of the authorities towards real problems of patients, especially the lack of medicines or the dissruptions in the supply process.
A few hundreds of patients faced the cold of 9 November 2009 in the Izvor Park, in front of The Romanian Parliament, with the purpose of highlighting the idea that the healthcare system should be a priority. It was the first signal that the patients don’t accept anything and start organizing and fighting for their rights.
2009 is also the year when COPAC signed the first important collaboration protocol with Romanian College of Physicians, which was the first healthcare organization open to collaboration with patients associations for defending mutual interests of patients and physicians.
Another protocol was signed with Romanian Association of International Manufacturers of Medicines.
2010 – The first information campaign about patient’s rights
In 2010, we have organized the first National Forum of Patients Association (the biggest and long-lasting event for the patients representatives). The motivation was to create a dialogue platform for patient’s association representatives with the authorities. This event is the most known brand of COPAC. Every year, during the spring, the conference brings together more than 150 representatives of patients association. In 2019, at Cluj, we have organized the 10th event.
The project of changing the compensation modality of medicines, proposed by The National Health Insurance House, which intended to introduce a copayment for the patients, attracted drew a serious concern at the end of 2010. For this reason, COPAC and Romanian College of Physicians organized a debate with the theme of the new compensation mechanism. After several public statements and pressure, The National Health Insurance House agreed to give up at this project.
The campaign “The ignorance affects severely the healthcare! – Patients rights” started in the autumn of 2010. Itwasthe first campaign of this kind organized in Romania. A number of 30.000 leaflets were distributed in all Romanian hospitals. Health journalists took over the campaign message, that patients should know and understand their rights, also.
The project purpose was to raise the level of information of Romanian patients, in general and of chronic patients especially, regarding their rights related to the healthcare system.
This campaign was implemented in partnership with Romanian College of Physicians and was supported by Novartis Oncology.
2011 – COPAC, member of European Patients Forum
In 2011, COPAC became the first and the only Romanian member of European Patients Forum, the biggest umbrella organization from European Union, with members from all over European countries.
COPAC president is in the present member of EPF board for the second mandate.
Developing international relationship of the organization is one of the most important priorities for COPAC.
On April 18, 2011, COPAC organized at Cluj an event dedicated to the European Patients Day.
2012 – Capacity building
In 2012, more than 300 patients representatives from all over the country participated to the National Forum of Patients Association. The debate focused on healthcare policies, which directly affect patients and, also, social protection, healthcare insurance etc.
Also, 2012 is the year when ”Capacity building” have started, a program of The European Patient Forum. Romania was one of the first countries, together with Hungary and Poland, where this program was organized. The purpose of this project was raising the level of professionalism of patients associations’ representatives. The trainers of The Open Society Foundations worked have worked with the COPAC members in designing the strategy of each organization, they guided our members to better write about the mission and the vision of their associations. Also, during the project, some training programs were organized, on themes like communication, strategic planning, writing projects sessions.
This project has been expanded in the following years, being organizaed again with new organizations from Romania.
2013 – Patients phone
In 2013, National Forum of Patients Associations became part of a major information campaign, “Patients week”. The purpose of this campaign was to draw attention on patient’s problems but, also, to promote the good things that happen in healthcare, active health NGOs, health policies, during an entire week. It is also very important that every person know that we have rights and we must defend it when is the case.
During this campaign, we have launched “The Patients Phone”, a free phone line, where patients could call and ask for advice regarding the patient pathway through the system, tell about their problem. COPAC representatives sent the problem to public health institutions and asked for a solution.
After 2 years, we have closed “The Patients Phone”, because of the lack of financing. The collected data were made public.
2014 – Chronic patient portrait
During “The Patients week” in 2014, we have realized a photography exhibition with the theme ”Chronic patients portrait”.
There were displayed five portrets of patients with chronic disease – Radu Gănescu, Dan Răican, Adriana Harja, Raluca Drăgan and Ștefan Răduț. Each of them has a long history of fighting and living with the disease and, still, each of them is special. Because they found the strength that, beyond personal experience, not a easy one, to discover resources to help other people, to share their personal experience. Each of them shows that a suitable treatment can change the life of a chronic patient in a usual one.
The exhibition was organized in Bucharest, Alba Iulia, Deva, Zalău and Iași.
We have launched in 2015 our big campaign. It was an advocacy campaign with the purpose of obtaining at least 6% from GDP for the healthcare system. Unfortunately, Romania is the only country from The European Union that allocates less than 6% for health.
This is the reason why COPAC highlighted the need of a better financing, also the problems of Romanian patients caused by the lack of treatment. The key point of our message for authorities was that we need proper treatment for patients in order to offer them a normal life.
In partnership with Romania Television, we realized several TV stories with chronic patients that have a normal life. An eloquent example is Robert Kalman, a classical dancer from Romanian Opera from Cluj, a young man of 29 years old with polyarthritis. He has biological treatment and he manages to keep his disease under control and dance amazing.
A caravan has collected signatures all over the country, for allocating 6% from GDP. Unfortunately, we didn’t get 200.000 signatures, but the debate was very visible. Even the Romanian prim-minister talked about the need of increasing the budget for healthcare, but, unfortunately he said that they didn’t have enough money for the moment.
As a result of this campaign, the target of reaching the minimum 6% from GDP was written in the government program, at the patients associations request.
2016 - COPAC Awards
In 2016, beside the already known projects, we launched COPAC Awards. The motivation for organizing this event was that it is very important to bring together organizations that didn’t collaborate before and to make known people and organizations that, through their efforts, support the healthcare systems. The notoriousness of this event, who registered 40.000 online votes and 150.000 website visits, managed to promote the image of patients associations.
The emotions and the passion of the people involved and nominated for the awards were the best things received by COPAC team, over the years.
2016 is, also, the year when COPAC created and implemented the Ethical Code of the organization. The Code is open for other patient’s organizations that intend to adopt it.
2017 – Advocate for your patient rights!
In 2017, COPAC started training sessions dedicated to healthcare journalists. The purpose of the project was that healthcare journalists find out more about the system, how it works and more about patients associations. As trainers, we invited public health specialists, authorities’ representatives and patients’ associations representatives.
In December 2017, we began the project “Advocate for your patients rights!”, with the support of The French Embassy in Romania.
The project started in order to make patients more enterprising and to talk more open about their problems. As an umbrella organization, COPAC faces frequently the patients reluctance of talking openly about their problems, like the lack of treatment. Patients refuse to talk in the public space, and, especially, in mass-media.
That is the reason why we presented the stories of six patients – organizations leaders, COPAC members, who told their personal story, the experiences related to their disease and the motivation that made them decide to involve and help other people with similar stories.
Their stories were made public through mass media, online websites and, also, during the regional meeting organized in Iași, Cluj and Craiova.
We also implemented a research with the purpose if identifying the main problems of patients, to make them public and send the conclusions to the authorities.
In 2018, COPAC set itself to realize a medium-term and a long-term development strategy of the organization, due to the change of the public climate and considering the last years growing. We also intended to develop new projects dedicated to support the growing of patients associations and to strenghthen collaboration with other organizations non-members COPAC. Another aim of the organization was to contribute significantly to the development and implementation of the new healthcare policies, in collaboration with professional societies and other institutions.
COPAC has increasingly focused on specific projects, like vaccination or cardiology.
We develop projects in collaboration with our members wishing to help them growing and strengthen their administrative capacity as much as possible.