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OVIDcast by OVID Health explores current issues in the health and life sciences sector.
In this series, experts from patient groups provide their insights on how to strengthen partnerships between patient groups and industry for better healthcare outcomes.
[00:00:00] Jack Fleming: Hello and welcome to OVIDcast. Here at OVID Health we are committed to enabling and inspiring healthy lives through the power of communications. In this series we'll be exploring the essential role of partnerships between patient groups and the life sciences industry and asking how the sector can forge stronger partnerships which deliver better health care for patients.
In this episode, Rachel Gonzaga, OVID Health Head of Patient Partnerships, speaks to Mary Pavlou, President of the Fabry International Network, about their work with industry. Mary is a trained nurse and head of a hospital pathology department in Greece. In 2001, she was diagnosed with Fabry disease, alongside her mother and brothers.
[00:00:50] Rachel Gonzaga: Mary, thank you so much for joining us today, especially because I know that you've rushed from the hospital to join us in this conversation. Can you tell me about your day, because we know you've just had your treatment for Fabry disease, what is it like living with Fabry disease and what's the treatment like for the condition?
[00:01:08] Mary Pavlou: Well, first of all, I want to thank you for the invitation, I'm very glad to be here. Well, it's a journey to have Fabry disease and to be a chronic patient. Fabry is an invisible disease, as many of our, you know, group of patients and doctors are saying. It's difficult for us and for other patients, for me as well, to explain to others what it feels and what it's like to have pain, or to have dizziness, or tinnitus, or even vertigo, which happens to me once in a while, and it's awful, to feel tired, even if it's a weekend and you haven't done much.
Once a colleague of mine asked me, why you say you are ill. I see you have two feet and two hands and you seem like you're totally fine. Well, I'm not totally fine. I have to go to the hospital every 15 days. That means holidays must be arranged differently, vacations and work and even, you know, want to go for a five days escape, you have to arrange around, I don't know, that day, it's a whole day at the hospital, almost all day, let's say and, I'm fortunate to take this day off of my work because I work full time, so yeah, it's difficult.
[00:02:45] Rachel Gonzaga: Thank you for sharing that, and can you tell me about your organisation? Tell me about Fabry International Network and what are the aims of the organisation?
[00:02:53] Mary Pavlou: Well, I'm very proud of Fabry, the national network, and be part of it. We aim to spread awareness first and foremost. Awareness about, a rare disease, Fabry make it more understandable what Fabry is, give the platform to both doctors and specialists and patient organisation and patient leaders or patient representatives. We give a platform for all the patient association around the world to meet each other, it's another great pillar of ours to exchange experience, to exchange, you know, good practice, you know, good practice and with this to embrace what other people or other countries are doing and you can bring it back to your country.
[00:03:46] Rachel Gonzaga: What's the one thing that you're most proud of, in terms of the Fabry International Network?
[00:03:51] Mary Pavlou: Well, first of all, I have to say that I'm very proud, the members of the board are all, we are all Fabry patients at the time, and I'm very proud of the hard work that we are giving and we are doing for the community and the other part that I'm proud of is the community itself. I have met and know so many brilliant people around the world with the dedication to help the Fabry community, to help the community or their countries to understand what it is to live with a rare disease, a chronic disease that, for example, takes in some countries 10 or 12 years to, for a person to diagnose. So, I'm very proud of the community that we have built over the years.
[00:04:48] Rachel Gonzaga: Can you tell me about how the Fabry International Network works with industry and what do you think makes a great partnership between a patient organisation and a pharma company?
[00:04:59] Mary Pavlou: Well, that's a great question. We have written policies. That's the one thing that I believe it's crucial to have policies for your own, how you want to work with industry and with pharma industry in particular, that's the first thing. The other thing is to have, clear goals of what you want to achieve on the collaboration that you are doing with them, but you want to do it in a transparency way. I believe that, in FIN we have achieved that, we have achieved collaborations with the industry that are transparent and clear.
[00:05:43] Rachel Gonzaga: Mary, thinking about all of the needs of Fabry patients and the aims of your organisation, are there particular areas that tend to get more funding from industry and some areas that are potentially more neglected and that you'd like to see more funding for?
[00:06:00] Mary Pavlou: But, you know, representation of the things that we are facing now, because, you know, of course, pharma industry always wants to be involved with educational material and educational, leaflets or videos or any of this kind, or they call it unmet needs, which is, you know, a phrase that we all almost terrified of hearing, let's talk about your unmet needs, our unmet needs are our everyday life, our unmet needs are that we are not talking enough about the psychological aspects of the disease, the unmet needs are how can you help me tell a friend? Can you help me tell that I'm a rare disease patient to my new girlfriend? Or how to start a family? Or how to support my family that has four members or five members of chronic patients. How can I make my daily life more happier, more easy to go? Those are the true unmet needs that are not facilitated and will never be from only from one industry or from all together joined.
[00:07:25] Rachel Gonzaga: That's a really brilliant way to describe how that pharma terminology can mean such a different thing in the patient community, so that's brilliant, I think one aspect of partnership working that comes up quite a lot is gathering insights and pharma often talk about their partnerships with patient organisations being to, you know, to bring insights into the company and shape their business strategy.
So I think it's clear from what you've said that kind of emotional aspect and dealing with the emotional burden of disease is one insight that potentially, you know, you would wish that they sought more of. Mary, thank you.
[00:08:03] Mary Pavlou: Thank you.
[00:08:04] Jack Fleming: Thank you for listening to this episode of OVIDcast. Join us again next week when Mary and Rachel will be discussing transparency, metrics, and how to make partnerships easier for patient groups.
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