It was a turbulent year for the Dutch Thyroid Organisation (Schildklier Organisatie Nederland, SON). The patient organisation was closely involved in the issues related to the sudden shortage of Thyrax. This medicinal product was used by 350,000 thyroid patients on a daily basis. Nevertheless, SON Director Rietje Meijer is positive as she reflects on 2016.
"The MEB phoned me at the beginning of 2016, shortly before the press release was published. They told me they wanted to let me know that they expected problems with the availability of Thyrax. That came as a great shock. At first, you hope things won’t be as bad as anticipated. But it soon became clear that it was going to be a major problem," explains Rietje Meijer. She was directly involved in this issue in 2016 as Director of SON: "I found it rather awkward that we were aware of the news before the MEB announced it. As a patient organisation you would prefer to inform your patients right away. But this did give us more time to prepare." As soon as the statement about the Thyrax shortage was published, SON was flooded with phone calls and emails. And there was a huge amount of media attention. "We set up a small crisis team and took things day by day, and later week by week."
Not a calamitous year
The shortage of Thyrax Duotab (levothyroxine) was caused by the fact that the manufacturer was temporarily unable to produce the medicine due to the relocation of its production facility. There is no other levothyroxine medicine that is identical to Thyrax. There are similar thyroid medicine with the same active ingredient, but these are not simply interchangeable. In short, the Thyrax shortage came as unpleasant news to the 350,000 users for whom finding the right medication and dosage is often a struggle.
"For many patients this was very serious and worrying. Not for everyone, because there are also patients who were ultimately happy after switching to a different drug,” says Meijer. "At SON itself there were also people who switched and were no longer able to function. But I certainly wouldn’t call it a disastrous year for our organisation. There was anger and concern, but also determination among volunteers to deal with this properly. That was a great added value. Many volunteers wanted to do their part. So we soon found well-qualified volunteers when setting up our ‘Thyrax Shortage Support Centre’. Finding good volunteers isn’t always easy, when the situation is less urgent. Cooperation with other patient organisations also received a boost, thanks in part to the MEB. The MEB brought us into contact with other parties concerned, including the Dutch Pituitary Foundation (Hypofyse Stichting). We knew each other, but had not cooperated intensively yet. From that time we started working together and will continue to do so in the future. That is a very good development for us."
Until 2016, the MEB’s attitude towards SON was primarily businesslike and detached. Meijer had attended MEB meetings with patient organisations on behalf of SON, and she had consulted with the MEB a few times with regard to the change to the Thyrax packaging. But the Thyrax shortage led to closer contact between SON and the MEB, which was unique for both organisations.
SON and the MEB coordinated with each other in order to provide patients with good and consistent information. Meijer: "We maintained our own responsibility, as we have different interests of course. But you have to trust each other. The MEB has the experts and channels that were able to provide the right information about medicinal products or alternatives. And we were able to tell the MEB what we heard back from patients. We received questions such as: how do you deal with the Thyrax that is still available? Do you give priority to groups of weak patients? We wanted to help patients; we heard all of those dramatic stories. But can you make such a decision as a patient organisation? Ultimately, after consulting with all parties concerned, we agreed that doctors and pharmacists are in a better position to determine what is best for their patients. Patients did not always appreciate this."
In Meijer’s experience, the MEB is an interested organisation. "The MEB is genuinely interested in the patients’ perspective, not only concerning the technical side of the problems, but also patients’ experiences. They took SON very seriously, because they noticed that we also acted professionally ourselves."
SON is not yet finished with the Thyrax shortage. In 2016, the Health Care Inspectorate (IGZ) investigated what led to the Thyrax shortage. But there were objections to the publication of the report. It is not clear whether or when the report will be published. "No, it's not finished yet. Thyrax isn't back yet. When Thyrax does return, there are a lot of patients who do not want switch back, but there are also patients who are really waiting for it. And when the IGZ report is published, hopefully soon in 2017, I expect more commotion when those responsible are identified," says Meijer.
Meijer also wants to broach new subjects: "I now know more about the backgrounds to medicine shortages, which could occur again in the future. I personally see danger in the preference policy. I find it alarming that a single manufacturer had such a large market share. Due to policy measures, there is a threat of another situation in which there are principally only two medicines available to thyroid patients. If something happens to those medicines, you'll get the same effect again. So we really need to talk more about this. A wider range of choices is important because patients respond differently to medicines. Patients should not be dependent on what the pharmacist happens to have in stock. I want this to be a major theme for discussions between the MEB and all patient organisations."