You can read about the essence of the verdict here, as told by Marleen’s father Danny. The text is changed in a few places, in order to make it useful in other countries, which may have different laws and institutions.
In the Netherlands, the system is set up in a way that everybody is obliged to have a standard Basic health assurance but can choose for different packages of Additional insurance, which mostly have a maximum amount that is covered.
“IZZ has to do what they ought to do, according to the conditions in their contract. Which is to simply pay the bills for doctor consultations and treatments.
Not out of the Additional care insurance (trying to maximise payment to 500 euro a year), but out of the Basic package.
This verdict is what I had hoped for, yet we still keep our fingers crossed. Of course, Marleen and I are happy with this result. There is, however, a chance that IZZ will go in higher appeal.
Main points in the verdict
Legal verdicts are mostly hard to read. That is why I made a short summary of it.
The judge shreds the main argument of IZZ to pieces. That was the argument that longterm treatment with antibiotics was not according to the latest science and clinical practice.
This argument is constantly used by insurers in different countries to deny payment for treatment [in case of the American young girl called Julia, the reason given was ‘not medically necessary’, so this may vary per country].
According to the judge, the undergone treatment did indeed meet these requirements.
IZZ used the Dutch CBO guidelines for Lyme. These CBO guidelines assume that a short-term antibiotics treatment is enough to kill the bacteria.
[The CBO guidelines are a copy of the American 2006 IDSA guidelines. These guidelines were highlighted as a case study in 'poor scientific practices' by the American Institute of Medicine in 2011 (Clinical Practice Guidelines We Can Trust in The National Academies Press; box 3.1) and which were subsequently taken from the National Guidelines Clearinghouse’s website for reliable guidelines.]
The judge assessed that a broader perspective has to be used. International positions, knowledge and experience have to be included. In other words: the current state of science is more than the opinions of the few doctors and specialists, who are involved with Lyme in such a small country as the Netherlands.
Because the prior short-term antibiotics treatment of medical specialists yielded little result, Marleen went to the Walborg clinic in Amsterdam; with a prescription of her GP. The treating physician at the Walborg clinic is Dr. Kingma.
Even though IZZ countered that Kingma could not be called a ‘care provider’ under the conditions of their contract (which the judge did not dispute), the judge decided that it was reasonable that Marleen went to him. Otherwise, she ought to have gone abroad to get treatment, which the judge deemed undesirable.
The judge also decided that it was irrelevant that IZZ claimed that they did not have any contract with the Walborg, because IZZ did not contract any care provider for this type of specialized care.
Some words of caution
Two points of caution for those who want to use the “case Marleen” in order to start their own legal battle with insurers. Don’t get your hopes up too much.
The judge has now granted Marleen her rights to coverage, but the IZZ has the possibility to go into higher appeal. Of course we hope that they do not, but if needed we are confident to face that next legal battle as well.
Fighting a higher appeal is more difficult, so we count on the support of the Dutch Federation for Lyme Patients (NVLP). We have already been in touch on this subject.
No case is similar. So it is possible, even if your situation differs only one tiny detail, that the verdict may be different and even be totally against your interests. Don’t count yourself rich!
Advice to all Lyme patients with a reluctant insurer
I wish everybody the best of luck, who will also try and fight the decisions of reluctant insures, also based on the “case Marleen”.
Of course you will need to work within the legal framework of your own country, while also looking at international laws.
In the Netherlands one first needs to write a formal letter of complaint, so the insurer is forced to formulate its reason to not pay your medical bills.
Here it is advisable to first ask a committee for insurance conflicts to look at your case, as we did. This committee will then try to negotiate for you. Maybe they succeed, so you don’t need to go to court.
When this mediation did not work, we had the option to ask them for a binding verdict (called ‘arbitrage’). We did consciously not take this second step, as this is a binding verdict, to which higher appeal is no longer possible.”
Source: article by Danny Groeneveld on the Dutch blog 'Lyme Life'
From an ethical perspective, there is unjustifiable medical risk involved in continuing to obstruct access to medical care for patients that meet clinical diagnosis and those suffering from chronic LB and relapsing fever borreliosis. Medicine has many cases of scientific debate —for example, how best to treat certain cancers or autism. In all these cases, policymakers have a duty to proactively protect the right to health.
In June 2017, an international team of scientists, medical professionals, human rights experts and patient advocates testified before the United Nations Special Rapporteur responsible for health and human rights regarding the human rights violations experienced by Lyme and relapsing fever borreliosis patients.
The Special Rapporteur outlined how his mandate could address these violations. The human rights violations include the obstruction to treatment options that meet international standards for clinical guidelines and the denial of benefits for many serious complications and disability caused by Lyme borreliosis.*
In testimony to the Special Rapporteur, bioethicist Diane O’Leary, of the Kennedy Institute of Ethics at Georgetown University notes that global health organizations have clear ethical obligations. This includes insurers.
“In the context of scientific debate about the biological origins of chronic Lyme, policy makers have a duty to proactively protect the right to health.” Ethically speaking, it is not possible to justify the risk involved in continuing to obstruct access to medical care for chronic Lyme patients, stated O’Leary. The WHO has described this in their AAAQ framework: the ‘Availability, Accessibility, Acceptability & Quality of Care’.
Just as the judge ruled in the case of Marleen, the arbitrary choice to only treat Lyme infection for a few weeks - regardless of patient response - is not up to date with current science and international clinical experience.
This has been documented and submitted as a report to the WHO in March 2017 by the Ad Hoc Committee for Health Equity in ICD11 Borreliose Codes, supported by over 260 references to ‘peer-reviewed’ scientific articles that have shown persisting infection, congenital infection and the many severe conditions that are caused by a Lyme Borrelia infection.
This human rights angle and this information could be helpful in future court cases in all UN member states.
* used with permission of the Ad Hoc Committee
About On Lyme
We focus to share stories that matter on this website. You can sign up for the On Lyme Newsletter to receive updates on new publications.
If you want to support our work, your donation is highly appreciated.
Would you also like, rate and share this article in order for more people to get this information?