In the video, you know the most expensive "injection" in the world, worth 8 million dirhams
A genetic medicine for the treatment of spinal muscular atrophy has issued the list of the most expensive drugs in the world, with an estimated value of 8 million dirhams, amid questions about the reasons behind this value, and what does it provide to the patient without other medicines? It is exaggerated, especially since "Novartis", which produces the drug, did not develop the drug, but obtained it in the wake of its purchase of the American company "AveXis", worth 8.7 billion dollars.
Al-Bastaki demanded that insurance companies cover the cost of treating rare, high-cost genetic diseases, in order for those affected to obtain appropriate treatment.
She explained that the drug for treating spinal muscular atrophy disease "Zolgensma", the most expensive in the world, was authorized to treat children under the age of two, and it is a single intravenous injection that takes about an hour.
She emphasized that "spinal muscular atrophy" is a fatal disease resulting from a genetic defect that weakens a person's muscles greatly so that he becomes unable to move and may ultimately impair the ability to swallow or breathe, and in general, children who are born chronically infected with the disease die before the age of two if Not treated, and the disease does not affect the child's intelligence or ability to learn.
The global incidence of SMA is 10 per 100,000 people
Price justification:
For its part, Novartis, the producer of the drug, told the Emirates Today that the reason behind the high price of the drug to become the most expensive in the world is that, given the total cost of caring for children with spinal muscular atrophy, who suffer from severe weakness, some of them need to survive through support with the help of The ventilator and natural gas feeding tubes, for many years, which makes them need millions of dollars in healthcare
The company stated that the care and treatment of children with SMA is a great cost burden on health systems, for example in Europe, the costs of care range The cumulative health estimate for each child is between 2.5 to 4 million euros during the first ten years alone, in addition to the fact that the disease has a significant impact on families, which cannot be measured, including high requirements for care provision, limitations in career choices and advancement, and a social and emotional burden.
Alternative Treatments:
Al-Bastaki indicated that there are alternative treatments that may prevent the development or slow the progression of some features of SMA.
Indicating that the effectiveness of these treatments may be better when treatment is started before symptoms appear, it is not clear what long-term impact will be or whether new symptoms will appear in the treated individuals.
It is worth noting that Emirates Today has finally succeeded in securing the price of the Zolgensma treatment injection for the Syrian girl Munira, who suffers from a disease of spinal muscular atrophy, which caused her to be completely unable to move, in addition to her rapid breathing and accelerated heartbeat.
A group of institutions and semi-governmental and private entities in the country took care of providing the full amount, to give this girl hope for a normal life after her family was desperate about the possibility of providing this amount.
Emirates Islamic Bank provided 4 million dirhams, Dubai Islamic Bank provided 2 million dirhams, while the Dubai International Financial Center provided 1 million and wasl real estate companies 1 million, to complete the amount needed to treat the child Munira.
A list of alternative treatments for spinal muscular atrophy includes:
- The US Food and Drug Administration approved the drug nusinersen “Spinraza” as the first drug approved for treating children and adults with spinal muscular atrophy, and the drug is given by injection into the fluid surrounding the spinal cord, the benefit is better documented in infants and children, especially when starting early.
The cost of the drug ranges from $ 625,000 to $ 750,000 for the first year, and then $ 375,000 annually, and for life.
On August 7, 2020, the US Food and Drug Administration approved the new drug Evrysdi (risdiplam), a syrup given by mouth to patients from the age of two months and adults, with an estimated cost of $ 340,000 annually.
Know about the most expensive medicine in the world. Emirates Today succeeded in securing it for a Syrian girl a few days ago.
#UAE_Today pic.twitter.com/jnt4fJDf1Z
- Emirates Today (@emaratalyoum) January 30, 2021
To view the whole topic, click the link below.
A consultant demands insurance companies cover treatment for genetic diseases
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