Mileva Repasky started out on her rare disease journey when her daughter was diagnosed with Castleman disease. With a long-held desire to help others, she is dedicated not only to helping her daughter but others like her and their families, through her tireless work and commitment to the CDCN
PEO series: meeting the beating hearts behind the rare brands
How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future?
The patient engagement role has existed in some capacity since the CDCN’s inception in 2012. Over the last seven years I have served as the chief patient officer and proudly advocated for our community. Patients are at the heart of everything we do, and as an organisation we strive to support, empower, and educate those affected by Castleman disease (CD) through both in-person and online resources to battle their CD, but also have a voice in their fight.
The CDCN has spearheaded a revolutionary approach to rare disease research with an eight-step model, where the patient community is prioritised when it comes to setting the research agenda. We recently launched the All In Movement, which is an initiative to crowdsource and prioritise high-impact questions from our community of patients, loved ones, physicians, and researchers to guide the next generation of studies on Castleman disease. This type of collaboration will be increasingly important going forward. In order to continue being the best resource for patients I also want to continuously gain a better understanding of our patients’ needs and experiences so that I can advocate for our community to the best of my ability.
What does a typical week entail for you, and are there any specific projects you can tell us about?
A typical week for me consists of 30+ hours addressing the needs of our patients and their families, engaging with various stakeholders in our community, and working alongside our team on various projects to drive forward our life-saving research. This takes the form of answering emails and phone calls when patients and love ones reach out to the CDCN for help. I’m always so glad that they find us and are then connected with a group that can make a difference to help their situation. Sometimes it’s about finding the closest specialist/physician to a patient, gaining insight on published literature on treatments and diagnosis to share with their doctors, and connecting for emotional support. We have a partnership with the Chan Zuckerberg Initiative to advance drug repurposing for rare diseases. I am serving as the patient engagement lead to ensure that the voice of our patients are at the centre of all we do, as we work to share the lessons we have learned while navigating the repurposing landscape with other rare disease organisations by creating a guide for others to follow.
What were your personal motivations to taking up a role in patient engagement?
When my daughter Katie was around 18 months old, we started down a road of so many unknowns to find a diagnosis for what she was battling. We received the diagnosis of Castleman disease before her second birthday. I had no idea what the road ahead would be but what I did know was that I would fight beside her to find a cure–and that led me to finding the CDCN. Over the past eight years we have watched her endure more than any child ever should, all while feeling like we are in the dark with so many questions and so few answers. With the diagnosis I knew that I had to dedicate my life to doing my part, which is helping patients and their loved ones who are going down the same road we were on. I will continue to dedicate my life to support our patients, their loved ones, and fight alongside them and our amazing team. I know that we will find a cure in my daughter’s lifetime!
What makes the role of patient engagement officer important to your organisation?
This role is so important to our organisation as patients are truly at the heart of everything we do. The patient perspective is a vital piece of the puzzle of Castleman disease. This role allows me to advocate the needs of our patients while also facilitating the needs of the organisation allowing our patients to have a voice in all that we do.
In your role, how do you ensure the patient voice remains central?
My role gives me the ability to connect with our community and create meaningful change that will continue to benefit them. I am constantly in communication with our patients and their families, to provide them with the resources they need to fight their battle while also sharing new published papers, research updates, and ways they can join in the fight. We have a Warrior community that connects virtually throughout the year and in person each summer at our Patient and Loved One Summit (although we have done this virtually in 2020 and 2021). We have an amazing group of patients that are also dedicated to contributing to a cure, however they can–and it looks a bit different for everyone! Some patients contribute blood and tissue samples for research, some register in our natural history study, others fundraise and spread awareness, and some do it all!
How do you reconcile operational business needs with elevating the patient voice?
Our operational business needs are one and the same as helping our patients and their families. We exist to do the research that will cure Castleman disease and help patients live full lives. We can’t do this high-impact research without patients donating their samples, medical history, and perspectives to shape the agenda.
What are the most rewarding aspects of your role?
The most rewarding aspect of my role is the ability to help patients and their families on their journey with Castleman disease. The feeling I had when my daughter was diagnosed with Castleman disease was awful–the medical unknowns and overwhelming lack of information was crippling. Now having the opportunity to support patients and their families so they do not have to experience that same feeling brings so much joy and purpose to my life.
I meet so many patients and their families in person and get regular updates on how they are doing which is also so wonderful. I love to hear treatment success stories and when things are going well. But the low points also continue to drive me to continue this mission–there is always more work to do.
What is your proudest moment in your career thus far?
This is a difficult question as there have been so many moments in my career that I am proud of, but all revolve around our patients and the success of our team. A few of my favourite are attending the first Patient and Loved One Summit (after I was in this role) and being able to hug all the people I spent the year talking to and helping. Successfully engaging a group of our patients to fundraise enough money to fund a study. Working alongside the Chan Zuckerberg Initiative to expand our collaborative approach to other rare disease and also our new project on drug repurposing. And being a part of the CORONA project and doing my part to aid in the fight against COVID when the pandemic hit!
One of my proudest patient related moments involved working alongside our team to help a paediatric family whose child was battling idiopathic multicentric Castleman disease with TAFRO (a variant of CD) to get a definitive diagnosis and treatment plan. Having the ability to support them in the hospital and provide resources to them within hours of hearing about this case was so special to me. I remember the moment when I walked into his hospital room and hugged his parents, I could feel their devastation and it just was a very real reminder of why I am doing this!! He is now doing amazing and on the same treatment that my daughter Katie is on!
What advice would you give someone considering working in the rare disease space?
Patients and their families battling a rare disease need organisations to give them a voice and stand beside them. Working in the rare disease space is such a privilege and requires hard work, passion, and dedication to the cause, but it is so rewarding and such an honour.
If you weren’t Patient Engagement Officer of CDCN, what was Plan B? What did your 10-year-old self want to do as a job?
For as long as I can remember I have had this innate desire to help people. I received my bachelors and master’s degree in psychology with the intention of becoming a psychologist. When my daughter was diagnosed, I was able to take my passion and my education and use it to help others suffering with the same disease. It has become the most rewarding job I have ever had as it is allowing me to fight alongside an amazing group of people working every day to find a cure to save my daughter and so many others.
To find out more about the work of the CDCN please visit; www.cdcn.org