by Valeria Quintily – Sr. Scientific Project Manager at LS Academy

Nicoletta, tell us a little bit about yourself.
I’m a 59-year-old woman residing in Mantova, my birthplace, a charming and historically rich Lombard town known for its tranquillity. I’m a proud mother to a daughter who’s nearly 25, and I harbour a deep passion for Japan.

Throughout my life, I’ve had the opportunity to reside in various places. I spent some years in Germany, a spell in Turin, and a substantial portion of my life in Modena before eventually returning to my hometown. Each of these places has etched fond memories into my life and granted me a wealth of knowledge. I acquired the German language during my time in Germany, developed a profound appreciation for fine Piedmontese wines while in Turin, and indulged in local delicacies such as “tigelle” and “gnocco fritto” during my stay in Modena.

My professional journey has been marked by versatility. I’ve transitioned from one sector to another, often driven by circumstances beyond my control. However, my core expertise lies in communications, external relations, and advocacy.

I’ve always aspired to gain professional and life experiences in the United States, but, regrettably, that opportunity has yet to materialise. Nevertheless, I firmly believe in the adage “never give up.”

Academically, I hold a law degree, and my interests span diverse areas such as travel, reading, and various forms of creative DIY projects.

What is Patient Advocacy to you?
Patient Advocacy is a multifaceted role that must balance various responsibilities to ensure its sustainability within the company. It acts as a tightrope walker, engaging with nearly every internal function to support institutional accreditation, facilitate market access, convey corporate values, and much more. Think of it as the “noble” side of the pharmaceutical industry, always mindful of business objectives while respecting the boundaries set by compliance, ethics, and regulations.

Above all, patient advocacy serves as a vital link to patient communities. These individuals possess remarkable adaptability, a natural talent for active listening, and a willingness to work often without immediate recognition of their contributions. They play a pivotal role in conveying patients’ real needs, expectations, timelines, and approaches, which frequently differ from those of the pharmaceutical industry.

On a different note, outside the corporate sphere, patient associations—true advocates—have gradually transitioned towards professionalisation, a concept unimaginable just a few years ago. Some associations, however, risk becoming overly preoccupied with media exposure, diverting focus away from advocacy actions and protecting the rights of those they represent.

Within this landscape, we encounter small entities struggling to fit into the established system, unable to create networks, and thus merely surviving instead of concentrating on robust structural development that would bolster their representation and enhance their impact. On the other end of the spectrum are the giants, comparable in influence to the companies they collaborate with, successfully drawing the attention of decision-makers and institutions to their communities’ priorities.

It would greatly benefit the entire patient advocacy ecosystem if conditions were created for the peer-to-peer exchange of expertise and a collective commitment to ensure no one is left behind. This endeavour should originate from the associations, fostering unity rather than allowing some to soar while others remain grounded.

How does the pharmaceutical company/Patient Association interaction work today?
With my diverse professional experience, spanning roles in multinational pharmaceutical companies, international CROs, and now in pharmaceutical consulting, I’ve had the privilege of observing interactions from various and sometimes opposing perspectives. From this vantage point, it becomes evident that much hinges on the individual occupying a particular role within a company. They say there are no good schools, only good teachers, and a similar sentiment applies to this line of work. Sensitivity, openness to others, and the ability to listen and empathise are inherently personal traits that play a crucial role.

Many associations, though often limited in size, heavily rely on volunteers who generously contribute their time after fulfilling work, family, and other unavoidable commitments—perhaps even caring for an ill loved one. This makes the time they dedicate to their associations all the more valuable. It should ideally be used to acquire skills, learn languages like English, and manage fundraising activities, among other endeavors. Regrettably, this doesn’t always happen, resulting in the stagnation of small associations that eventually wither away and disappear.

Some companies have recognised the importance of gathering and comprehending the patient’s perspective throughout a product’s lifecycle, from clinical research to post-patent expiration. They actively work to support the development of associations, fully integrating them into the healthcare system as invaluable sources of knowledge.

Others, however, only engage when a product is on the brink of launch, utilising the patient perspective to inject a touch of humanity into a primarily business-driven process.

These varying viewpoints necessitate ongoing reflection for industry and associations to strike the right balance in their collaboration. Ultimately, their shared goal is to provide new treatment options where there is an unmet clinical need, making it a matter of utmost importance.

What developments do you see for the near future?

Increasingly, sustainability must take precedence as we confront the reality of finite resources. It’s no longer feasible to wait and hope for resources to materialise magically. Associations, in particular, must embrace the need for structured, ongoing fundraising activities. These activities are essential not only to finance current endeavours but also to plan for the future strategically. Additionally, there’s a growing need to professionalise volunteers, prioritising quality over quantity.

For companies, this entails a shift towards projects and initiatives that genuinely prioritise the needs of patients, aligning actions with patient-centricity rather than just appearances. Here, the key lies in active listening and gathering insights.

Given that the pharmaceutical industry makes deliberate choices regarding the associations it collaborates with, associations should position themselves as the chosen ones. This necessitates being highly operational, adaptable, up-to-date, proficient in communication—primarily through social media—open to engaging with diverse stakeholders, and capable of establishing partnerships on an equal footing.

While I can’t predict the future, with a greater willingness to collaborate, we’d witness more collaborative efforts among smaller groups rather than the constant emergence of new associations starting from scratch. This approach would leverage the valuable experience already accumulated by others.

Why did a profession grow out of a passion?
When discussing “life’s turning points,” I stumbled upon my passion for the field quite unexpectedly. It all began when I naturally engaged with rare disease patient associations during my tenure in communications. It was a revelation to realise that by sharing patients’ experiences with journalists, I could profoundly touch their hearts and immerse them in the lived reality of those facing rare diseases.

This realisation prompted me to initiate projects that amplified the voices of patients, and over time, I honed my expertise in nurturing these delicate relationships with individuals who are often marginalised and unheard. Working for Genzyme, headquartered in Boston, Massachusetts, was a serendipitous alignment, as the company’s origins were deeply rooted in the story of the first-ever Gaucher disease patient. Understanding his journey, and the unwavering determination of his mother in uniting researchers, clinicians, and industry players to develop a life-saving therapy—more than three decades ago—broadened my perspective on the power of collaboration.

Fast forward to today, nearly two decades into my career in the industry, and I find myself more convinced than ever of the significance of treading this path. It’s about passing on as much enthusiasm, experience, motivation, and passion as possible—a blend of qualities that prove indispensable when confronting complex challenges with unwavering determination and humanity.

In the face of your experience, do you feel like giving any advice to those who have been in this role for a short time?
In the realm of advocacy, just as books seek out their readers, advocacy seeks the right person. If you happen to be that right person, a significant part of the job is already accomplished. However, it’s essential to approach this role appropriately. The field has accumulated a wealth of experience, and it’s crucial to educate oneself, undergo training, and seek expert guidance.

While a touch of creativity can be immensely beneficial, a groundbreaking project idea can sometimes sprout from a simple suggestion. Transforming this idea into a tangible project involves assessing feasibility, defining timelines, establishing participant selection criteria, and fostering extensive collaborations with various stakeholders.

In essence, sensitivity and passion alone are insufficient. It’s necessary to combine these qualities with skills, experience, and the understanding that recognition for your efforts may be limited, as recognition often favours those who achieve tangible results.

Yet, what we do bring home is an enduring flame—one that continuously burns within us, providing satisfaction and nurturing our open, curious, and empathetic nature. What more could one ask for?

Nicoletta and Her Passion - LS Academy