Spreken is goud.

About last week…

Ik werd uitgenodigd deel te nemen aan een meeting rond PID bij pediatrische patiënten in het Europees Parlement op woensdag 27 juni. Een kans die ik niet mocht laten liggen. Ik getuigde er over wat dat met je doet, mama zijn van een PID-patiënt, en wat de noden zijn voor een holistische aanpak.

Men zegt wel eens “Spreken is zilver en zwijgen is goud.” Maar in dit geval was spreken overduidelijk goud. Over hoe mijn getuigenis een aanvulling bood op de presentaties van artsen, de industrie en Europese instanties…
Ik deel heel erg graag mijn speech met jullie. In het Engels, uiteraard. (Onder de foto…)

Enjoy! 

 

Good afternoon everyone,

My name is Ellen, I am the mother of 4 adorable children. And our third child, Sofia, is a special needs kid. One of her diagnoses is PID.

I am going to talk to you today about these 3 items:
– my campaign and what I tried to achieve
– my opinion about the current gaps when treating PID
– how treatment is reimbursed in Belgium and a quick note on New Born Screening

1. My campaign
Somewhere in April, during the PI Week, on a family day in Ghent, in a spur of the moment while talking to professor Haerynck… I decided to write a letter to the Belgian Public Health Care minister, Mrs De Block.
I asked her to set up a convention so that the university hospitals can provide a multidisciplinary team to discuss PID patients and give them the best care.
I also asked her to get PID on the list of paediatric diseases so parents can get a compensation for the earnings they lose for staying at home to take care of their children with PID.
I also asked her to recognise PID as being a chronic illness. Because today that is not the case. Which is rather astonishing: if your immune system is failing, how more chronically ill can you be?

I put the letter online the 3rd of June, the 8th of June I got a phone call from the Belgian television, and we made it to the 1 and 7 o’clock news, ànd the radio news. Two days later, the letter and the call for a convention were in the newspaper.

If there’s one thing for sure: we did make a statement, as a patient, and as a doctor of PID patients, as I had professor Meyts and professor Haerynck to back me up. We did put PID onto the agenda. People know about the disease now. People know it is not easy. People know it is chronic. And people know it is hard work.

For those who wonder if I ever had a response of the Public Health Care minister: I did. She mailed me back and told me she wanted to set up a caring project through the GPs. It is kind of her to consider this, but it is not what is needed, because all the special care is run by specialists in University Hospitals and PID is too complex for a GP to be at the centre of all treatments.

2. The current gaps when treating PID
As you know: PID really needs a multidisciplinary approach. An approach as it exists in Belgium for patients with cystic fibrosis, neuromuscular disorders and chronic kidney diseases. Because within a convention there is a significant improvement of life quality for patients with a chronic disease.

We too dream of a team like this.
Where University Hospitals get the necessary financial support to set up teams consisting of pulmonologists, gastroenterologists, dentists, and all other specialists needed. A team that has the support of a secretary to arrange the schedules, the meetings and the patient’s appointments. A PID-nurse who is available for back-up when patients have questions: someone who knows the disease, who knows who to call or who to refer to in cases of emergency. A team that is surrounded by paramedics: dietitians, physiotherapists, occupational therapists, audiologists,…
And most important of all: psychologists.

Psychological guidance is the key to handle the side effects of the disease.
In the case of children like Sofia: to handle the injections, the long days at hospital, the hand hygiene in class, the regular periods at home when being ill in winter. All we want for them is to feel happy, to feel cared for, and to have someone to talk to about their issues, about the tears, and about the anger when they feel more different than their classmates.
For older children and teenagers, who do realize that the illness is holding them back from a school trip, that the illness is game breaker when choosing their future profession and walk of life.
For adults, who cannot work full time because the illness takes too much energy to handle a job in a correct way. Nowadays, if you cannot compete with fulltime working colleagues, you will miss the boat. Imagine what that does to you…

Psychological support is highly necessary. Not only when patients are distressed, but before they even think about having psychological backing. We need to avoid people pulling the alarm. Prevention is the key word here.
And the support has to be on a low threshold: there needs to be a reimbursement of the honorarium, so that the fee cannot be the reason not to turn to psychological guidance.

3. Reimbursing treatment in Belgium + new born screening
I am not a doctor, I do not know about the statistics, I only hear the stories of other parents and patients, and to what I hear: most patients get the immunoglobulin treatment reimbursed. As it is the case of our little girl Sofia.
However, there is no reimbursement for some PID subtypes. People with immune dysregulation, people with auto-immune features for example. These patients can choose to be treated with inhibitors or monoclonal antibodies. For instance, in the case of patients with familial Mediterranean fever syndrome. They can choose to start with Anakinra but this treatment is not reimbursed in Belgium today.

And what about newborn screening?
Currently new born screening is not available in Belgium. There is no screening yet for Severe Combined Immunodeficiency via the Guthriecard.
Similar to other countries such as France, the Netherlands, the UK, the USA we hope that the Belgian government will want to include newborn screening for SCID on Guthriecards as well.
A couple of years ago there has been a request to the Belgian Office of Public Health care, but the Office didn’t consider the plea.

Final thoughts

Only by working together we can make life easier and more hopeful for all PID patients. And therefore I do hope that my testimony as a parent of a PID patient today can encourage you as professional players in the field to keep doing your utmost for all patients including our lovely daughter Sofia.