By: Sara Silvennoinen and Gene Lin
Frederik Bramm has spent over 2.5 million Danish Kroner on treating his Lyme disease without state support since 2010.
Bramm, 23-year-old, experienced severe leg pain in August 2009, shortly before becoming unable to lift them.
“I cannot explain what it felt like,” said Bramm. “I fell down when I walked and my left leg was not working normally. I also suffered from headaches and began throwing up from one day to the other,” he added.
Lyme disease is a bacterial infection commonly transferred from ticks to humans. The infection happens when the insect bites into its hosts and draws blood. While not all ticks carry diseases, the one that settled under Frederik’s sports watch later proved to be life-changing.
Bramm received an official diagnosis for Lyme disease in Florida, United States after Danish doctors said they were unable to treat him. His treatments involved antibiotics, minerals and vitamins in United States, Spain and Germany.
“I could not walk and was bedridden 24 hours a day. I was completely disabled,” said Bramm.
His condition has improved since he began treatment in Germany. However, the disease has taken a toll on his bank account and created tension within his family due to economic strains.
“I have spent millions to get to where I am today and there is no reimbursement from the Danish state to be seen,” he said.
Today, Bramm travels frequently to Washington DC, United States to continue his treatment. He said that he had flew over five times in 2015.
“[The Danish state] promised me that they would continue pay for my treatments, but they haven’t done that” he said.
European Union’s plan
Bramm’s experience is not uncommon in Europe, and stories like his did not go unnoticed by the international authority. In 2011, the European Parliament passed a Directive to make cross-border healthcare more accessible to EU citizens.
The Directive states all EU citizens like Bramm are entitled seek medical care in member states other than their own, and be reimbursed for it by their home country. However, member states are allowed to implement the Directive differently according to their national law.
“[The Directive] has clarified patient’s right with regards to cross-border healthcare, it has been transposed in all member states,” said Annika Nowak, member of cabinet for Vytenis Andriukeitis, Commissioner of Health and Food Safety in European Union (EU).
“However, we see still throughout three years of transposition time that very few people know about their rights… there is no real increase in using this right,” said Nowak. “[The Directive] has changed the legal framework and legal clarity, but not necessarily the usage of the right,” she added.
A study published by European Commission in 2015 showed that member states face two main challenges in implementing the Directive; The first challenge being that patients have a hard time obtaining information about medical care abroad; The second being that some patients need to provide prior-authorisation for cross-border healthcare from their home country before they can be reimbursed.
“Some member states have been really active doing their job and some not at all,” said Laurent Louette, Communication Officer at European Patients’ Forum.
Lack of information for treatment abroad
In order to better inform EU citizens of their cross-border healthcare right, each member states have set up information centres called National Contact Points (NCP) to answer public questions about cross-border healthcare.
However, less than 20 per cent of Europeans feel that they are informed on their cross-border healthcare rights, while only ten per cent know about the existence of National Contact Points, according to a 2015 survey by Eurobarometer.
“All member states have established National Contact Points, so the basic information is available in all countries… the level of quality or usefulness varies,” said Nowak.
When asked about the report that few Europeans know that NCPs exists, Nowak said that the European Commission relies heavily on member states and patient organisations to promote the National Contact Points’ public exposure.
“We take care of the administration of the EU regulation much more,” said Søeren Enggaard Stidsen, senior advisor at Denmark’s National Contact Point when asked how does he advise patients in getting cross-border healthcare.
Stidsen recommends patients to ask their local authority as to whether they can be reimbursed for their medical care or not before travelling abroad, as it is up to their government to decide how to implement the Directive.
“It is a matter of legal tradition and willingness of member states to implement the Directive,” she said.
‘We are people, not numbers’
One of the cross-border patients who do not know about the existence of National Contact Points is 27-year-old Italian Anna Zaghi who suffers from Multiple Sclerosis.
Multiple Sclerosis is a neurological condition that affects the nervous system, potentially causing cognitive and physical impairments.
In October 2013, Zaghi moved to Brussels to intern with an European NGO that supports patients with Multiple Sclerosis. However, her condition requires treatment in form of infusions once a month.
“My neurologist in Italy didn’t want to adress me to anyone who could support me when I move to Brussels,” said Zaghi.
“She basically told me, ‘Anna, what if I had to listen to every single request patients make me?’ I think she should. We are people, not numbers,” she added.
“Maybe I should have insisted with my doctor, but really I was in a mental state, and felt like I couldn’t do it. I felt powerless. I was scared to start questioning the system,” she said.
“I asked to have treatments on Fridays, so that I could rest on weekends. Often I came to Italy on Thursdays, went to the hospital on Fridays, and went back to Brussels on Sundays,” said Zaghi when asked about her monthly trip back to Italy.
Her plane tickets back to Italy were paid by the NGO she worked with in Brussels. “I was lucky I found the support on the other side,” she said.
Zaghi said it is difficult for young people with chronic or rare illnesses to move abroad. “I’ve heard so many people who gave up the desire to go abroad because they feel like they can’t. It’s not fair,” she said.
Zaghi added that there is not enough information for patients to understand how the system really works.
“I don’t think we should put the blame solely on NCPs, they are member state agencies for most of them, so it’s really up to the government,” said Louette.
“Even though it’s only maybe a small number of patients, we believe it is a very central Directive for patients’ rights in Europe,” Louette added.
Some countries might ask patients to seek permission from their home country before granting them healthcare, which is also called “prior authorisation,” irrespective whether the patients are in critical condition or not.
The European Commission has stated that countries can only ask for “prior-authorisation” if the medical service that they are providing is “highly specialised and cost-intensive,” the problem is that there is no consensus on what constitutes “highly specialised and cost-intensive.”
“The EPF recommend more sharing of information between countries, but also more focus on NCPs across Europe. The patients groups should also bring up the issues to a national level, and basically say: you’re not doing the job, this is what you should do,” said Louette.
“Nobody wants to travel to country A or B to receive treatment. That’s why there is a small demand, and hence some member states are not interested in it. It’s an issue, for patient with rare diseases or chronic illnesses, who need that possibility,” Louette added.
“Just because there’s a small number of patients like these, doesn’t mean they don’t have the right to this treatment,” said Louette.