Paola Kruger, Patient Expert, European Patients’ Academy – EUPATI Italia
Patient expert Paola Kruger contributed to the event “Medicinal use of cannabis and cannabinoids: is the grass always greener?” that took place during the 2019 European Health Forum Gastein, bringing the patient perspective on this important issue.
AC: First of all, for those who aren’t familiar with your organisation yet, could you briefly explain what EUPATI is?
PK: EUPATI started as an Innovative Medicines Initiative (IMI) project several years ago and is currently run by the European Patients’ Forum. In a nutshell, the aim of EUPATI is to train patients in the R&D of medicines in order to bring their expertise of the disease into the development of medicines in a meaningful way.
AC: What are the key takeaways from the discussion we had today on medical cannabis?
PK: There are clearly two dimensions in the discussion about medicinal cannabis. The first point is about patients with an unmet medical need who support the use of medicinal cannabis as this can benefit them. The second point is related to its impact on society, and especially young people.
As a patient, but also as a mother of two teenagers, I am concerned about both dimensions. In my experience, young people are exposed to recreational cannabis daily and aren’t fully aware of the risks. We need a Europe-wide communication campaign for young people to raise awareness about this. We need to find a balance between these two dimensions so that we can bring them together.
AC: What is the patient perspective on this issue? Does the patient community have a unified view on medical cannabis?
PK: Very much so. Even if there are some exceptions, the majority of patients recognise that there is a big unmet medical need in a number of different therapeutic areas. When I posted on LinkedIn that I would go to Gastein to speak about this issue, I received plenty of messages from patients that would like to see more medicinal cannabis therapies brought into the market.
AC: As a multiple sclerosis (MS) patient, have you ever benefitted from medicinal cannabis yourself?
PK: I have a very stable form of MS so far, which hasn’t required me to use it. But I know many patients who find it beneficial. We can argue why or if it is just a perception, but if patients say that medicinal cannabis makes them feel better and stops them from having pain all day, it’s important that these patients can access it.
AC: When talking about medicinal cannabis, do you consider medicinal products based on cannabis and cannabis preparations being on the same level?
PK: Absolutely not. Medicinal products have gone through a rigorous path of testing and scientific evidence gathering, which means side effects are reduced to a minimum and monitored. Patients should have access to both, while we wait for further access to such therapies and further scientific testing.
AC: What policies at national and European level would patients like to see promoted on this issue?
PK: Leaving the potential negative outcomes to society aside, from a patient perspective it is key to enlarge the number of patients that can access medicinal cannabis through the increase of therapeutic areas covered. To do so, we need more testing and we need to include the voice of patients to see whether and when hard evidence is coupled with the patient perspective.
The need to get the patient perspective on board throughout trials is especially important as we talk about symptomatic medicine. This is something we need to do in a systematic way. We have the means to do so through the development of Patient-Reported Outcomes.
The interview was conducted by Young Gasteiners Andrea Corazza & Kira Koch