We understood how fortunate we had been and we determined to share our data and contacts to advocate for ALK Optimistic!
Typically this appears to be an extended journey in our nation. Unhappy to say, hospitals and oncologists wouldn’t have the identical preparation and data all through Italy: many sufferers are compelled to journey to seek out an ALK specialist, which we estimate now we have about 10 in the entire nation. We have now mapped them and share with the group.
Furthermore, Italian sufferers when in comparison with US sufferers, appear much less proactive and extra prone to really feel inferior in entrance of medical doctors, which doesn’t assist with affected person empowerment. However issues are slowly altering in our nation.
Elaborate on the Core Values that drive ALK Optimistic Italia and the way do these form the organisation?
The ALKPositiveItalia Fb group is led by my husband and I, with the assistance of Dr Chiara Bennati.
We share updates on new analysis in science and pharmacology, we attend conventions and study trials and occasions; we refer newly recognized sufferers to the suitable and geographically closest ALK specialists, and provide sufferers who expertise development with essentially the most up to date information.
What I’d have accomplished for my husband, I share with different sufferers.
We’re a small however environment friendly group and sufferers have discovered to collaborate, sharing not solely private points, however all and any data that may be helpful to others. They’ve discovered that collectively we’re stronger!
Our values are primarily based on advocacy and consciousness, affected person schooling and assist, and sharing evidence-based data.
Wanting forward, what’s the imaginative and prescient for ALK Optimistic Italia within the coming years? Are there any strategic objectives or tasks that the organisation is especially enthusiastic about?
I’d like to see the Fb group change into a nonprofit group advocating all through Italy. However we’d like extra sufferers to volunteer and collaborate on this undertaking for it to achieve this purpose.
We want to have the ability to collaborate extra with pharma and analysis – in Italy now we have very excessive restrictions regarding patient-pharma interactions.
I’ve included a few medical trials which can be for Italian residents solely, although we additionally take part in EU and US research.
GALILEO undertaking
-Longitudinal Evaluation of Genomic Alterations and Clonal Evolution in ALK-positive NSCLC
The scope of GALILEO undertaking (Genomic ALteratIons and CLonal EvOlution in ALK+ NSCLC) is to discover the feasibility of genomic longitudinal analysis for ALK+ NSCLC sufferers in Italian routine apply and supply an in depth overview of resistance mechanisms and medical outcomes based on present normal therapies.
ALNEO trial
-Alectinib in Neo-adjuvant Therapy of Stage III NSCLC (ALNEO)
Part II, Open-label, Single-arm, Multicenter Examine to Assess the Exercise and Security of ALectinib as NEO-adjuvant Remedy in Sufferers With Anaplastic Lymphoma Kinase-positive (ALK+) Regionally Superior Stage III Non-Small Cell Lung Most cancers(NSCLC):
-A Examine to Consider the Mixture of Platinum-pemetrexed Based mostly Chemotherapy Plus Lorlatinib in ALKPositive Non-Small Cell Lung Most cancers(NSCLC) With Solely Extracranial Illness Development on Lorlatinib (ALK-PPL)
Centro di Riferimento Oncologico – Aviano, Italy
Lastly, what message would you wish to convey to our readers concerning the importance of ALK Optimistic Italia’s work and the significance of supporting its mission?
Even in case you are solely a small drop in an enormous sea, you can also make a distinction!
And simply consider within the energy of sharing!
Interview by: Duncan Preece