{"id":47718,"date":"2020-02-09T12:34:22","date_gmt":"2020-02-09T11:34:22","guid":{"rendered":"https:\/\/www.fedaiisf.it\/?p=47718"},"modified":"2020-03-04T20:04:14","modified_gmt":"2020-03-04T19:04:14","slug":"novartis-lancia-la-lotteria-per-il-farmaco-salva-bambini-piu-caro-al-mondo","status":"publish","type":"post","link":"https:\/\/www.fedaiisf.it\/en\/novartis-lancia-la-lotteria-per-il-farmaco-salva-bambini-piu-caro-al-mondo\/","title":{"rendered":"Novartis launches raffle for world's most expensive child-saving drug"},"content":{"rendered":"
\n

There is a cure but it costs too much. Novartis launches lottery to save 100 children a year. The first drawing was held on Monday. Criticism from SMA Europe.<\/span><\/p>\n

sputnik news \u2013 February 8, 2020<\/a><\/p>\n<\/div>\n

\n

Novartis has brought to market Zolgensma, a gene therapy to treat spinal muscular atrophy, which \"\"<\/a>affects 1 in 10,000 children. One dose is enough to heal permanently. A dose that costs $2.1 million dollars and which makes Zolgensma the most expensive therapy on the pharmaceutical market. Children who will not have the resources to be treated will have to rely on fate: Novartis has in fact created a lottery to give away 100 doses a year to the "lucky" ones drawn.<\/p>\n

SMA is a degenerative disease that affects children aged between 6 and 18 months. In its most serious phase, the very young patient will not go beyond the adolescence phase. Novartis has announced a plan to expand the number of patients who will be able to take advantage of the treatments, through the singular mode of the lottery, which will allow 100 extracts to cure yourself and survive the disease<\/strong><\/span>. The first draws took place last Monday.<\/p>\n

However, Novartis' initiative has met with resistance from patient groups and patient family associations.<\/p>\n

\"\"<\/a>SMA Eurpe welcomed the news of the lottery with "mixed feelings": although "it is appreciated that the program will offer access to the promising treatment option to a number of children", the "health lottery" is "an inappropriate way to address the medical need of this serious illness,\u201d reads a statement<\/span><\/span><\/p>\n<\/div>\n

A treatment program that will put thousands of children affected by SMA\u00a0\u201cin a position to compete with each other to save their lives\u201d<\/strong>, the note continues.<\/p>\n

\n

The Novartis storm is compounded by the fact that the pharmaceutical company launched the plan without consulting with the associations of doctors and parents of SMA sufferers.<\/p>\n

Related news:\u00a0AveXis Announces Innovative Zolgensma\u00ae Gene Therapy Access Programs for US Payers and Families<\/a><\/p>\n

SMA Europe<\/a>. AVXS-101 (Zolgensma\u00ae) to be made available globally through a controversial programme<\/a><\/p>\n

The Guardian. Dismay at lottery for $2.1m drug to treat children with muscle wasting disease<\/a><\/p>\n<\/div>\n

Drugs, the price is not right. The Zolgensma case: single-dose therapy at 2.125 million $<\/strong><\/a><\/p>\n

Zolgensma for SMA: the most expensive drug in the world, 2.15 million dollars<\/a><\/p>\n

The macabre Novartis lottery: free medicines for one in 600 children<\/a><\/p>\n

 <\/p>\n

\"\"<\/a><\/p>","protected":false},"excerpt":{"rendered":"

La cura c’\u00e8 ma costa troppo. Novartis lancia una lotteria per salvare 100 bambini all’anno. La prima estrazione si \u00e8 tenuta luned\u00ec. Critiche da parte di SMA Europe. sputnik news – 8 febbraio 2020 Novartis ha immesso sul mercato Zolgensma, una terapia genica per curare l’atrofia muscolare spinale, che colpisce 1 bambino su 10 mila. …<\/p>","protected":false},"author":4,"featured_media":47725,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[16],"tags":[],"class_list":["post-47718","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-primo-piano"],"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/posts\/47718","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/comments?post=47718"}],"version-history":[{"count":0,"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/posts\/47718\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/media\/47725"}],"wp:attachment":[{"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/media?parent=47718"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/categories?post=47718"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.fedaiisf.it\/en\/wp-json\/wp\/v2\/tags?post=47718"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}