Health
NHS Uses World’s Most Expensive Drugs to Treat Spinal Muscular Atrophy | Society
The world’s most expensive drug to treat infants and young children with rare and often fatal degenerative diseases will be available on the NHS for the first time this year. England..
Zolgensma, which costs £ 1.79 million per dose, Spinal muscular atrophy (SMA) is the leading cause of genetic death in babies, with lack of exercise, weakness and paralysis.
Up to 80 babies are expected to benefit from the drug annually in the UK. The drug, in a single dose, replaces the function of the defective SMN1 gene. The active ingredient, onasemnogene aveparbovec, restores genes and produces proteins essential for muscle movement and nerve function.
Life expectancy for babies born with SMA type 1, the most severe muscular atrophy, is 2 years. Zorgensma does not cure the disease, but it does help stop its progression. This means that your baby can breathe, get up, crawl, and even walk without a ventilator, and the effect lasts for more than five years after treatment.
For some babies diagnosed before the onset of symptoms, it “may approach healing,” said Maindelt Boysen, deputy chief of the National Institute. health And Care Excellence (Nice). “As with many new treatments for very rare diseases, limited evidence means there is uncertainty about long-term benefits,” he added.
SMA affects the birth of 1 in 10,000 people. Every year 65 babies are born with the disease in the United Kingdom, 60% of whom are diagnosed with type 1.
Sir Simon Stevens, Chief Executive Officer of NHS England, said: “SMA is the leading cause of genetic death in infants, which is why. NHS The UK has moved the mountain to make this treatment available, but has succeeded in negotiating hard behind the scenes to ensure a fair price for taxpayers. “
Zolgensma is manufactured by the Swiss company Novartis Gene Therapy, one of the wealthiest pharmaceutical companies in the world. The negotiated amount is secret, but according to the NHS, it is available at a considerable discount.
This is the most expensive treatment ever approved by Nice. The NHS is tracking drugs quickly and is trying to identify which specialized services can administer the drug.
Critics have previously Criticized the astonishing price According to the company, the cost is reasonable because it is a one-time treatment.
“The cost of a single dose is much higher than the cost of administering products that are used daily, weekly, or monthly. However, these products can cost millions of pounds over a lifetime, and Zorgensma is needed only once, “said Sally Anzangarides, general manager of Novartis gene therapy in the United Kingdom.
“In the future, the possibility of one-time gene therapy to treat a genetic condition with a single treatment is very exciting.”
Over 60,000 children are diagnosed with this condition each year. Zorgensma has already been approved in more than 38 countries and more than 1,000 children are being treated.
Spinraza, the first drug to help infants with spinal muscular atrophy, Now available At NHS in May 2019. Future SMA drugs are being considered by Nice.
Professor Frances Comtononi of the Great Ormond Street Hospital Trust said: Chronic treatment or palliative care. “
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