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The Volunteer Group Of Zakynthos along with thousands of other volunteers across Greece are fighting for little Panagiotis Rafael.
Just who is this little boy?
Panagiotis-Rafael Glossiotis from Halkida on the island of Evia, is a Member of MDA Greece. Born in April, 2018. He is suffering from Type I Spinal Muscular Atrophy ( SMA I ). Today he is 18 months old.
Spinal Muscle Atrophy is a rare, degenerative and until recently terminal disease affecting the entire musculoskeletal system , including swallowing and breathing. Type I is the most serious with a life expectancy of 2 years without treatment. Regarding its frequency, it is estimated that 1-14 children are born per year in Greece (with all three types), while about 1 in 40-50 people are carriers . Prenatal screening is possible, but it is not covered by insurance funds and is not part of the pre-requisite examinations performed in every pregnancy.
In 2016, Nusinersen (Spinranza) was approved by the FDA (Food and Drug Association) and in 2017 by EMA (European Medicine Administration), thanks to which Panayiotis-Rafael is still alive. Greece was one of the first countries to offer Spinranza to patients with Spinal Muscular Atrophy, and its administration continues to this day.
This drug (Spinranza) aims to improve the symptoms and relieve them and has actually made a significant contribution to improving the mobility of Panagiotis – Rafael. It is covered by EOPYY and costs € 1,000,000 (€ 250,000 per year for 4 years). The child has now managed and rests his head, sits unsupported and transfers things from one hand to another. Skills he would not have without this medicine.
In May 2019, the gene drug AVXS-101 (Zolgensma) (1) was approved in the United States of America, designed to address the genetic cause of Spinal Muscular Atrophy, providing a functional copy of the human SMN gene. In this way, the progression of the disease can be stopped by expression of the SMN protein by a single intravenous injection (2). Clinical trial results are available on the AVEXIS site (2) . The drug has been approved to be given until the age of 24 months.
At the same time, the application has been filed by AVEXIS and EMA (European Medicines Agency).
The cost of this treatment along with hospitalization at Boston Children’s Hospital is approximately $ 3.5 million.
The Glossiotis family filed a dossier with the EMS (Supreme Health Council) and their request was rejected on the grounds that there are no comparative studies on the efficacy of the two drugs when administered in combination and therefore information on this treatment is incomplete. A decision that our Association understands and accepts.
On 27/9 the parents took the initiative to follow the example of young Antonis from Cyprus (a child with exactly the same illness) and launched a campaign to gather the necessary amount.
MDA Greece – Association for the Care of People with Neuromuscular Diseases aims to improve the quality of life of its members. Therefore, he could not abstain from supporting the effort of the Glossiot family to secure Panagiotis-Rafael’s take of the Zolgensma gene drug.
Today, 18/10/2019 € 1,920,000 has been deposited in the accounts of MDA Hellas for this purpose, which shows the full support of the people in this super-effort.
The Volunteer Group of Zakynthos have set up donation boxes at the following places.
- POWER UP, 13 STAVROPOTHI ZAKYNTHOS TOWN.
- ARTOGONIA BAKERY, KOLIVA 114 ZAKYNTHOS TOWN
- WELCOME STORES, ROMA 64 ZAKYNTHOS TOWN
- WATCH REPAIRS NIKO KOPANA (NEAR POLICE STATION
**Anyone who would like to donate and cannot get to any of the above places or bank, the Volunteer Group of Zakynthos will come to you. Please get in contact with them via their Facebook page. https://www.facebook.com/groups/235018443585514/
For online donations please click on the following link https://mdahellas.gr/donations/226-rafail/
