Zolgensma lottery: a real life Hunger Games
Every day people enter the lottery for fun, a couple of pounds in the hope of winning vast quantities of money. Now, imagine entering a lottery which could be the difference between life and death. The hope, a life-saving drug.
This is a harsh reality for many families across Europe.
In December 2019, Pharmaceutical company Novartis announced a drug access program which will offer its $2.1 million one-off gene therapy for spinal muscular atrophy (SMA), for free. It will be given to 100 patients, in a lottery-style system in areas yet to have access to the drug.
The drug, Zolgensma, marketed by AveXis, has been approved by the Food and Drug Administration (FDA) in the US but is yet to receive approval in Europe, where its price is €1.9 million. Despite the high price, the drug was developed with large amounts of public and charitable money.
“imagine entering a lottery which could be the difference between life and death. The hope, a life-saving drug. ”
SMA is a rare genetic disorder causing muscle weakness, wasting, gradual loss of movement and problems with breathing and swallowing. It is caused by deterioration in the nerve cells which connect the brain and spinal cord to the body’s muscles. Infants with type 1 of the illness will typically die within two years.
From the 3rd February this year, AveXis will be conducting a bi-weekly draw for babies under two suffering from SMA. Those who meet the criteria will be placed into the draw. Those not picked will be re-entered into the next draw and all will stay there until they are no longer eligible.
“The cruelty of this system will make them wait week by week, to see whose name will be picked out of a hat and chosen to survive. ”
We’re talking about children’s lives, but the lottery suggests the drug is a ‘prize’ for a ‘lucky’ winner. I've been affected by this failing system too. When Vertex refused to offer their cystic fibrosis drug at a price the NHS could afford I was forced to wait for years along with thousands of others for access. The circumstances might be different but cystic fibrosis and SMA patients are suffering the consequences of the same flawed system which gives monopolists the power to profit from life and death.
Novartis’ greed means those needing the treatment will be left in an agonizing wait each week. Not only is this unjust to the children, but their families will be left knowing there is something out there that could save their babies, keeping them in a state of helplessness.
The cruelty of this system will make them wait week by week, to see whose name will be picked out of a hat and chosen to survive. A real life version of The Hunger Games.
“These children cannot fight or campaign for their own right to access this drug, that is why we must. ”
With Zolgensma priced so unjustifiably highly, it will inevitably put a huge strain on healthcare budgets. Millions of dollars of taxpayer money and funding from charities was put into the early stage of research and development of Zolgensma. Yet this public contribution has been completely ignored by AveXis - Zolgensma is the most highly priced drug on the market.
These children cannot fight or campaign for their own right to access this drug, that is why we must. No company should hold the power to dictate the value of a child’s life.
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About the author: Isabelle Jani-Friend is a cystic fibrosis patient, Just Treatment supporter and freelance journalist, blogger and recent graduate.