Having lived with a rare condition all her life, Ella Balasa knows first-hand the power of the patient voice. She has put her passion for patient advocacy into practice and through her consultancy work, strives to elevate the patient perspective in research and empower others to have their voice heard

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

Ella Balasa is a patient advocate, consultant, and person living with cystic fibrosis. She has committed her time to empowering patients and advancing healthcare strategies. She speaks publicly about the value of patient perspective and has a passion for distilling clinical information for patient communities. Through opportunities working with healthcare organisations on content strategy, writing, speaking, clinical trial development, and sharing the patient experience she aims to affect the healthcare landscape by raising awareness of rare diseases, promoting self-advocacy to patients, and valuable insights to organisations. 

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

Having had many healthcare experiences throughout my life, I have learned the power we as patients living with rare disease have on our own health outcomes and in shaping research and drug development. After graduating college and working in a microbiology lab I became interested in how I can utilise my voice as a patient and explore my involvement in cystic fibrosis (CF) research. I began working with the CF Foundation participating in various research related advisory committees tasked in providing patient perspectives on research questions as well as working with researchers and professionals and helping them and the public communicate and relate to each other. This expanded to opportunities to speak at conferences about my healthcare journey, the value of the patient voice in research, and how we as patients can harness this raw understanding of the healthcare system to work with researchers and industry to advance healthcare together.

In the last few years, I have focused even more on my patient advocacy work, and I have most recently established myself as a patient advocacy/engagement consultant, gaining opportunities to work with healthcare companies in patient advisor roles and giving input on advisory boards, committees, and panels.

2.

How does your business benefit the rare disease community?

As a patient who understands scientific terminology, frequently advocates for my health in the clinical setting, and has experience working with the pharma industry with past speaking roles and numerous patient engagement initiatives, I add value to the rare disease community by making the connections between industry and patient populations. I co-produce with researchers and pharma on the best way to optimise care and address the problems that rare disease patients face.

I strive to serve as encouragement to other patients to be confident in their abilities to relay our experiences to industry. Understanding the patient experience is vital to healthcare companies and initiatives. Receiving this information through reliable, business and solution focused individuals like myself, facilitates both the disease community and healthcare companies to advance medical progress together.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

Through networking I have been able to connect with a number of other patient advocates who have become consultants working with the healthcare industry to improve patient care and outcomes. Through these advocate connections I have been introduced to new companies and initiatives that are seeking patient involvement and input and with whom I can experience collaborative relationships. They support my work and achievements and I help support and optimise their efforts in creating better clinical trials, improve patient health literacy, and many other strategies to provide better healthcare for patients.

The advice I would give to those setting up a new business is to not be afraid of reaching out to new contacts through LinkedIn or direct email people who actively work in the rare disease industry because you never know where these connections might lead and the opportunities that can emerge from them.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

I am very fortunate that the work that I do with companies is conducted virtually and in the comfort of my own home. This, over the last few years has allowed me the convenience of maintaining my treatment regimen and tending to my health needs and doctor appointments. I require doing four breathing treatments a day and I am able to do them while being on the computer. I also have flexibility in scheduling most meetings and can take time off when I am unwell and am able to rest as I need. The more projects I have taken on in the last few months, have required me to spend more time writing, invoicing, emailing, but I can space out the work I do completing items in the evenings and on weekends if I take time off during the week.

5.

What advice do you have for someone starting their own business?

The most important piece of advice I would give is to be persistent and show up from the creation of your business with the confidence that you are valued person with experience and knowledge in this space, even if you don’t know everything there is to know. A little secret, none of us know everything there is to know!

When I started, there were so many topics I didn’t understand. There still are, but I am always learning, looking up new terms when it comes to clinical trial processes and regulatory topics, and researching themes to familiarise myself for future conversations. Sometimes there will be projects and opportunities that don’t align with your experiences/expertise at all, and it’s important to be transparent about this, but also don’t be afraid of trying something new.

6.

What are the most rewarding aspects of establishing and running your own business?

Spending my time on projects that I feel add value to furthering my passion for patient involvement in research, as well as contributing to the betterment of people healthcare is the most rewarding aspect of what I do. I feel that I am making a positive impact in the way clinical trials, and more broadly healthcare, is tailored to accommodate patients and propel research advancement.

7.

What would you consider to be the greatest achievements of your business thus far?

I am most proud of being invited to speak at the Food and Drug Administration (FDA) for Rare Disease Day 2020: Supporting the Future of Rare Disease Product Development on a panel sharing my perspectives on individualised therapies. In early 2019, I sought out and pursued an experimental treatment called phage therapy for which I directly communicated with researchers at Yale without the aid of my cystic fibrosis physician. After the success of my treatment, and its publicity in the Associated Press, I decided to share my experience writing about it in the HuffPost and then speaking publicly about the need for the development of novel therapies for the treatment of antibiotic resistant infections, as well as the policies required for new drug advances.

I have also transparently shared about the viability of the novel therapy I tried, and the significant value in patient advocacy in breaching new therapeutic spaces. I was asked to speak at various conferences and meetings including the Milken Institutes Future of Health Summit but when I was invited to speak at the FDA, it was truly an honour. My work in this space had been recognised and I realised the value I would contribute to developing potential frameworks for advancing novel and individualised therapies for those with rare diseases. 

8.

What advice would you give someone considering working in the rare disease space?

The rare disease community is so tight knit, and everyone has such a strong desire to help the shared mutual goal of bringing new life saving treatments to patients suffering who currently have very few or no options to treat the underlying cause of their disease. The rare disease community is helpful, eager to learn more about ways they can help themselves and others, and they will embrace your efforts if you are working toward valuable contributions to the community in any way.

9.

What are your hopes for the future of your business?

I hope to continue making an impact in improving patients’ lives through my involvement in collaborating with more healthcare companies and facilitating better patient and industry relationships. I want to grow the impact that I have serving both as an example of the power and impact we have as patients on our own lives and improving healthcare and as a professional patient providing valuable insights to companies.

10.

If you hadn’t become a patient advocacy/engagement consultant, what was Plan B?  What did your 10-year-old self want to be?

I’ve always had an interest in science. I’ve always liked environmental/earth science and growing up I wanted to be a volcanologist! They are fascinating to me. Prior to working in the patient advocacy and engagement space, after graduating college, I worked as a laboratory technician in an environmental microbiology lab where I tested river water for antibiotic resistant bacteria, studying their relation to anthropogenic causes and public health effects. I most likely would have stayed in this line of work if I didn’t transition into optimising the patient experience in healthcare.