On the 8th of February 2017, Marlene Mizzi MEP hosted a policy debate in the EuropeanParliament on the need for a concerted policy response to the challenges posed by sarcomas, rare cancer diseases affecting millions of people across the EU. Commissioner for Health and Food Safety, Vytenis Andriukaitis, provided the keynote address ensuring that European Reference Networks (ERNS) for rare and complex diseases will be in operation in March 2017.

 

Sarcomas are an important family of rare cancers. There are over 70 different subtypes of sarcomas, which makes it difficult for physicians to develop expertise in their treatment, and for researchers to find effective treatments for each subtype.

 

Marlene Mizzi said: “I am not a doctor, but I am a citizen, who like many, unfortunately, has touched cancer first hand through the illness of family members or friends. Sarcoma is a rare type of cancer affecting only a small percentage of the population, but cancer patients report one of the worst experiences and suffering with this disease.”

 

“That is why, I have decided to organise an event where experts can collectively discuss together with the patients and with representatives of the industry,  what can be done to improve the lives of sarcoma patients across Europe,” said MEP Mizzi.

 

During the event, Estelle Lecointe, President of the Sarcoma Patients EuroNet (SPAEN) organisation, and herself a cancer survivor,  introduced the Sarcoma Policy Checklist, which was created as a tool to help policymakers improve access to high quality information, treatment and care for sarcoma patients across Europe.

 

The Checklist was developed by a group of experts, consisting of leading patient, clinical and industry representatives on sarcoma from across Europe. It describes five key areas where policy makers may focus their efforts to make the most impact on care for patients, such as designated and accredited centres of reference for sarcoma in each country, greater professional training for all health care professionals involved in sarcoma care, a multidisciplinary approach to care for every patient with sarcoma, greater incentives for research and innovation, and more rapid access to effective treatments.

 

“Sarcomas are a typical example of the gaps that still exist in terms of access to information, research and quality care for many patients with rare cancers. The Sarcoma Policy Checklist provides policymakers clear guidance to take action to address these challenges,” Marlene Mizzi said.

__________________________________________________________________________

 

Marlene Mizzi żżid l-għarfien dwar kanċers rari

 

Fit-8 ta’ Frar, 2017, l-MPE Marlene Mizzi organizzat dibattitu politiku fil-Parlament Ewropew dwar il-bżonn ta’ politika kordinata bħala rispons kontra l-isfidi li ġġib magħha s-Sarcomas, kanċers rari li jaffettwaw miljuni ta’ persuni madwar l-Unjoni Ewropea. Fil-messaġġ tal-ftuħ, il-Kummissarju tas-Saħħa u s-Sikurezza tal-Ikel, Vytenis Andriukaitis, assigura li l-European Reference Networks (ERNS) għal mard rari u kumpless se jkunu qed jaħdmu minn Marzu 2017.

Is-Sarcomas huma familja importanti ta’ kanċers rari. Hemm ‘il fuq minn 70 forma differenti ta’ Sarcomas, u dan il-fatt jagħmilha aktar diffiċli għat-tobba speċjalizzati biex jiżviluppaw it-trattamenti tagħhom, u għar-riċerkaturi biex isibu trattamenti effettivi għal kull forma differenti.

Marlene Mizzi qalet: “M’iniex tabiba, iżda ċittadin, li bħal ħafna oħrajn, sfortunatament, esperjenzajt il-kanċer mill-mard ta’ membri tal-familja jew ħbieb. Is-Sarcoma hija forma rari ta’ kanċer li tolqot biss persentaġġ żgħir tal-popolazzjoni, iżda l-esperjenzi tal-pazjenti tas-Sarcoma huma fost l-agħar li jgħaddu minnhom il-pazjenti ta’ kwalunkwe tip ta’ kanċer.”

 

“Huwa għalhekk li ddeċidejt li norganizza avveniment fejn l-esperti jistgħu jiddiskutu flimkien mal-pazjenti u mar-rappreżentanti tal-industrija, x’jista’ jsir biex intejbu ħajjet il-pazjenti tas-Sarcoma fl-Ewropa,” qalet l-MPE Mizzi.

 

Waqt l-avveniment, Estelle Lecointe, il-President tal-organizzazzjoni tas-Sarcoma Patients EuroNet (SPAEN), u hi wkoll kienet intlaqtet mill-kanċer, introduċiet is-Sarcoma Policy Checklist, li saret biex isservi bħala għodda li tgħin lil dawk li jfasslu l-politka biex itejbu l-aċċess għal informazzjoni ta’ kwalità, trattament u kura mill-aqwa għall-pazjenti tas-Sarcoma fl-Ewropa.

 

Iċ-Checklist saret minn grupp ta’ esperti, li jikkonsisti minn rappreżentanti tal-pazjenti, tal-kliniċi u l-industrija fuq is-Sarcoma minn madwar l-Ewropa. Din issemmi ħames oqsma ewlenin fejn dawk li jfasslu l-politika jistgħu jiffokaw l-isforzi tagħhom biex iħallu l-aqwa impatt fuq il-kura tal-pazjenti, bħal ċentri għas-Sarcoma nominati u akkreditati f’kull pajjiż, approċċ multidixxiplinari fil-kura ta’ kull pazjent bis-Sarcoma, inċentivi akbar għar-riċerka u l-innovazzjoni, u aċċess aktar veloċi għal trattamenti effettivi.

“Is-Sarcomas huma eżempju tipiku tad-differenzi li għadhom jeżistu fl-aċċess għall-informazzjoni, ir-riċerka u kura ta’ kwalità għal ħafna pazjenti b’kanċers rari. Is-Sarcoma Policy Checklist tipprovdi gwida ċara lil dawk li jagħmlu l-politka biex jieħdu azzjoni u jindirizzaw dawn l-isfidi,” qalet Marlene Mizzi.

 

____________________________________________________________________________________________________

 

 

webee_miz

View all posts