Drug lottery: Charity or Marketing tricks?

What is Drug lottery

You may know about different types of lotteries or draw-games. Have you ever heard of drug lottery?

AveXis, which is owned by Novartis-Pharmaceutical giant, launched a lottery-style program to provide 100 doses of its pricey gene therapy free of charge in countries outside the US where it is not yet approved.

Photo from: Avexis

The so-called managed access program — meant for kids younger than 2 living in countries where the drug has not been approved — will use a bi-weekly draw to determine which patients get the one-time treatment. Those who aren’t chosen will stay in the pool as long as they are still medically eligible.

AveXis plans to add doses to the program, which will start Jan 2, 2020, every six months based on availability and patient need.

The world’s most expensive drug

That drug, Zolgensma, is a one-shot cure for a deadly inherited disease-SMA(Spinal Muscular Atrophy) whose victims cannot control their muscles. It is designed to add a functional copy of a gene that is missing in babies born with SMA.

Photo from:yahoo.com

It is approved for sale only in the U.S now. At a price of $2.1 million, it is the world’s most expensive drug.

SMA

SMA is still the biggest killer of children under two. There are 60,000 or so children diagnosed each year.

Photo from: www.novartis.com

SMA affects the nerves in the spinal cord controlling movement. Patients face muscle weakness, progressive loss of movement and difficulty breathing and swallowing. Those with the most severe forms often die before the age of two.

Zolgensma is one of just two drugs for spinal muscular atrophy that have been approved in the US. The other, Spinraza, requires recurring doses that cost $750,000 for the first year and $375,000 each year after that.

Photo from: xconomy.com

AveXis claims it has fairly priced the drug because it is a one-off. It calculated the price as half the cost of 10 years of the current therapy, Spinraza. 

Patient’s feedback

Once a country or region approves Zolgensma, Novartis would end the lottery program there.

One patient group is skeptical that picking “lucky” kids is the best way to do that.

“We are yet to be convinced that a health lottery is an appropriate way of meeting the unmet medical needs in this severe disease,” the British advocacy group TreatSMA said in a statement.

Photo from:treatsma.uk

“One of our concerns about the program is that they are not going to monitor the patients long-term,” said Kacper Rucinski, also a trustee at TreatSMA and a board member of SMA Europe. “They will just supply the drug. Everything else is the responsibility of the treating community.”

Tips to skyrocketing drug prices

• CPPI (Campaign for Personal Prescription Importation) is a national non-profit patient advocacy organization whose main focus is to help Americans gain access to safe and affordable prescription medications from Canada. Join this community and get more information shared by others.
• Ordering prescription medication online from a trusted Canadian online pharmacy service can be saving 50-80%. More than half of people are saving up to 199$/month.

• Consulting with trusted and licensed pharmacist regularly.  Ask about alternatives that may be less costly.  Not all new and more expensive brand name medications have enough evidence to support claims of superiority over tried, true, and less expensive prescription medications. Also, medications that have been on the market for longer increases the chance that it will be available as a generic medication – further reducing the costs.

• Reducing stress, keeping positive and improving lifestyle choices will help lead to a healthier life and reduce the chances you will need medication.

Cited：

1. Novartis to Offer World’s Most Expensive Drug for Free Via Lottery
2. Novartis in talks with patients upset about lottery-like gene therapy giveaway 
3. Novartis sets up free lottery for $2.1m SMA drug outside US
4. Dismay at lottery for $2.1m drug to treat children with muscle-wasting disease 
5. Novartis plans lottery to give away world’s most expensive drug for free