Introducing ALK Positive Italia An interview with Founder, Patty Saccenti

ALK Positive, Inc has introduced a section in our newsletter to feature international (non-US) ALK patient groups/organizations. If you would like your group/organization to be featured in a future newsletter, please contact Duncan Preece at duncan.preece@alkpositive.org

In this issue, we are introducing ALK Positive Italia and have interviewed the founder, Patty Saccenti.

Can you share with our readers the founding story of ALK Positive Italia? What inspired the establishment of the organisation?

AlkpositiveItalia was born in 2021 and was, and still is, a Facebook group, with around 300 patients and caregivers.

In September 2017 my husband Paolo, 53 years old, noticed a small lymph node on his collarbone; when I touched it, being a thoracic surgeon, I immediately recognized a bad sign: two days later a CT scan revealed the presence of lung cancer at stage 3C. In less then one month he was able to access TKI therapy.

At that time we didn't know yet how long and complicated the way to diagnosis could be for an ALK patient! Since then we have met many ALK patients. Listening to their stories, we realized they all shared a common fact all around the world: a late diagnosis.

That’s how AlkpositiveItalia was born!

We realize the urgency and the importance of advocating for ALK Lung Cancer patients, starting from the need for an early diagnosis.

A dear friend used to say: “Where you live should not affect if you receive a cure.”

That’s our starting point.

We understood how lucky we had been and we decided to share our knowledge and contacts to advocate for ALK Positive!

Sometimes this seems to be a long journey in our country. Sad to say, hospitals and oncologists do not have the same preparation and knowledge throughout Italy: many patients are forced to travel to find an ALK specialist, which we estimate we have about 10 in the whole country. We have mapped them and share with the group.

Moreover, Italian patients when compared to US patients, seem less proactive and more likely to feel inferior in front of doctors, which does not help with patient empowerment. But things are slowly changing in our country.

Elaborate on the Core Values that drive ALK Positive Italia and how do these shape the organisation?

The ALKPositiveItalia Facebook group is led by my husband and I, with the help of Dr Chiara Bennati.

We share updates on new research in science and pharmacology, we attend conventions and learn about trials and events; we refer newly diagnosed patients to the appropriate and geographically closest ALK specialists, and supply patients who experience progression with the most updated data.

What I would have done for my husband, I share with other patients.

We are a small but efficient group and patients have learned to collaborate, sharing not only personal issues, but all and any information that can be useful to others. They have learned that together we are stronger!

Our values are based on advocacy and awareness, patient education and support, and sharing evidence-based information.

Looking ahead, what is the vision for ALK Positive Italia in the coming years? Are there any strategic goals or projects that the organisation is particularly excited about?

I would love to see the Facebook group become a nonprofit organization advocating throughout Italy. But we need more patients to volunteer and collaborate on this project for it to reach this goal.

We would like to be able to collaborate more with pharma and research - in Italy we have very high restrictions concerning patient-pharma interactions.

I have included a couple of clinical trials that are for Italian residents only, though we also participate in EU and US studies.

GALILEO project

-Longitudinal Assessment of Genomic Alterations and Clonal Evolution in ALK-positive NSCLC

The scope of GALILEO project (Genomic ALteratIons and CLonal EvOlution in ALK+ NSCLC) is to explore the feasibility of genomic longitudinal evaluation for ALK+ NSCLC patients in Italian routine practice and provide a detailed overview of resistance mechanisms and clinical outcomes according to current standard treatments.

ALNEO trial

-Alectinib in Neo-adjuvant Treatment of Stage III NSCLC (ALNEO)

Phase II, Open-label, Single-arm, Multicenter Study to Assess the Activity and Safety of ALectinib as NEO-adjuvant Therapy in Patients With Anaplastic Lymphoma Kinase-positive (ALK+) Locally Advanced Stage III Non-Small Cell Lung Cancer(NSCLC):

-A Study to Evaluate the Combination of Platinum-pemetrexed Based Chemotherapy Plus Lorlatinib in ALKPositive Non-Small Cell Lung Cancer(NSCLC) With Exclusively Extracranial Disease Progression on Lorlatinib (ALK-PPL)

Centro di Riferimento Oncologico – Aviano, Italy

Lastly, what message would you like to convey to our readers regarding the significance of ALK Positive Italia’s work and the importance of supporting its mission?

Even if you are only a small drop in a big sea, you can make a difference!

And just believe in the power of sharing!

Interview by: Duncan Preece