An average of € 2,287 is paid out of pocket per year.
As a patient association, non-profit organization Time for Lyme strives to raise awareness of Lyme disease and the possible long-term consequences of an infection. By analogy with the Netherlands, Time for Lyme is therefore launching the Week of the Tick. From 17 to 23 April – at the start of the tick season – there will therefore be a full focus on prevention and awareness-raising.
Lyme disease is caused by the bacteria Borrelia burgdorferi and is transmitted by infected ticks. A proportion of patients who contract Lyme disease report long-lasting signs and symptoms, even after recommended antibiotic treatment. This is called post-treatment Lyme disease syndrome (PTLDS). But because there is currently no consensus on guidelines for diagnosis and treatmentpatients continue to look for recognition and answers.
Inge Piryns, vzw Time for Lyme: “The more scientific research there is into Lyme disease and PTLDS, the more the patient can be heard. Because in addition to the long agony, it is also extremely difficult not to receive recognition for what you are going through as a patient, let alone not find answers to improve quality of life and to participate actively in society The suffering of patients and their environment can no longer be denied and the problem will only increase if there is no investment to Lyme disease, its consequences and the optimal approach.”
High medical costs
That is why, in addition to the launch of De Week van de Tick, Time for Lyme has commissioned a study into the socio-economic impact for patients who have long-term complaints after a confirmed Lyme diagnosis. The aim of this study is to assess the costs of illness related to PTLDS.
For example, patients who suffer from post-treatment Lyme disease syndrome pay more than an average net monthly income in medical costs out of their own pockets every year.: €2.287. With a monthly amount that exceeds € 190, that is a big bite out of the budget. This includes money spent on complementary medicine, non-prescription medication and the share that the patient pays out of pocket for conventional medicine.
Patients on sickness or disability benefits also pay 63% more than a patient who is at work. On the one hand because they have more medical needs and require more care. But on the other hand and mainly because their medical needs remain unanswered and they look for an answer in complementary, non-reimbursed medicine.
The total annual social cost of PTLDS is estimated at €170,892,959.
Time for Lyme and Professor Lieven Annemans’ team are therefore launching a joint appeal to governments to release more money for research into Lyme disease.
