Equal access to affordable, available, and high-quality healthcare is a basic EU-citizen right.  Unfortunately, this is not the reality for many living in the EU as highlighted in our campaign for the 2014 EU Elections, especially in the wake of the economic crisis. Our member in Bulgaria, the National Patient Organization (NPO), is making strides to close the gap in equal access for patients living with chronic illness. Here is the story of Alexander and his parents’ battle for treatment.

Over the 2012 summer, Valya Hristova sought guidance from the Bulgarian Association of Patients with Rheumatoid Arthritis (APRA), a member of NPO.  She went to these organisations on behalf of Alexander, her seven-year-old son diagnosed with juvenile idiopathic arthritis, a subset of arthritis seen in childhood.  At the time, Alexander had been receiving multiple-drug treatment for his condition.

At that time Alexander’s parents were experiencing difficulties in paying for the long-term drug, which was not reimbursable through Bulgaria’s National Health Insurance Fund (NHIF).  In all other EU member states, treatment with this drug is completely covered by health insurances.  The patients’ organisations challenged the NHIF to explain why this drug was not included in the list of covered medicines.

An official response to the letter came six months after. Alexander’s family—along with the families of six other children diagnosed with the same condition—were informed that this treatment could be reimbursed by 75% starting on 1 January 2013.

However they also learned that the criteria for the initiation of reimbursable treatment (disease indicators) had not been established.  They had therefore to continue covering 100% of treatment costs until 15 March, when the Fund finally established the necessary criteria.

It appeared that none of the seven children met the criteria to receive coverage for the treatment, as their disease indicators were lower than those specified by the NHIF.  Under pressure from NPO and APRA, the Fund finally granted treatment to the children under a special provision.  On 25 April 2013, the seven children received their first covered treatments.

Without the intervention of NPO and APRA, the children would not have received covered treatment for their illness.  While the drug is now covered under insurance for these children, their families are still paying monthly testing procedures and the cost to administer the drug, as the NHIF has failed to establish a reimbursement agreement for this specialised medical service.

Progress still needs to be made before these children can say they have truly received available and affordable healthcare. It is the reason why NPO, through the EPF Manifesto, requests the support of an EU initiative on equitable healthcare access to all EU citizens, regardless of their background or ability to pay.  Patient organisations can and must continue to fight for equitable healthcare until stories like Alexander’s become only a reminder of our fight for equal access.

For more information, please contact EPF Director, Nicola Bedlington at nicola.bedlington@eu-patient.eu.

The right of patients in Europe to seek healthcare in another EU Member State, and be reimbursed for it, is now clearly established thanks to the EU Directive on Patients’ Rights in Cross-Border Healthcare (CBH). EPF
organised a first conference on this Directive on 9-11 December 2013 in Brussels and Cees Smit, policy adviser at the Patients Network for Medical Research and Health (EGAN) offers his insight on how he understood the event and the Cross-Border Healthcare in practice.

Personally, I came rather uninformed to this meeting and already the first evening I was impressed by the knowledge some of the participants had on this new EU directive on Crossborder Healtcare. At the same time, my own lack of knowledge was the main driver to attend this meeting. The beginning of the next day, I was rather overwhelmed by the great number of problems, of roadblocks that could be associated with this CBH directive.

Thanks to the excellent choice of EPF of speakers who introduced us in the ins and outs of this CBH directive, the possibilities as well as the impossibilities were clearly highlighted. I have to mention here especially Isabelle Riquier, who told about her own experiences as a French patient diagnosed with Multiple Sclerosis (MS) and living in Germany. She hopes that the implementation of this Directive by October 25 of last year will make an end to her now highly complicated way of receiving treatment. She now has to travel once a month to France to get her treatment, because France so far doesn’t want to reimburse her treatment in Germany although treatment there is even cheaper.

Another speaker was Nathalie Chaze from DG Sanco, who explained the important role the different National Contact Points (NCPs) had to play to explain this new directive to their citizens. To test how the national NCPs function at this moment, several participants asked during the conference by internet questions to their respective NCP and sometimes with disappointing results. From these n = 1 queries it became clear that not every country is on track with the implementation of the directive.

Later during the conference, when I became more familiar with the problems, I also saw more and more solutions rising by thinking of some solutions that were already developed with the international patient community.

For my own disease haemophilia, we developed already decades ago travel guides and medical passports to pass customs and visit foreign hospitals. These paper guides have now evolved to more sophisticated app’s that can be obtained from the App store (Look for ‘Haemophilia Travel Guide’, developed by the World Federation of Haemophilia).

There is also an App for patients with Crohn and Colitis, called ‘Bellybuddy’ (Buikbuddy) developed by the Dutch Crohn and Colitis Patient Group. This app contains translations of medical issues in a number of languages and also emergency alerts when patients with this disease are in desperate need for a quick visit to a toilet

Looking in more detail to these apps after the conference, I still see the chances to develop more apps for patient communities but the apps require also proper updates of the information. An app from two years old can already be rather inadequate today.

Also for EPF, the development of a more general App on this directive could help EU-patients tremendously.

With regard to the participants of this first conference, there will follow more, they belong to a special group of patient representatives who these days already got the privilege to learn a lot more about the recently implemented CBH directive. These privileges create also some obligations in two ways.

First of all, they act as a key person from the patient community in their own home-country in the further communication and cooperation with other stakeholders in this directive. And second, that they cooperate with EPF in the future in the further evaluation process of how the directive works in practice.