Insulin is unaffordable for millions. These ‘biology nerds’ want to fix that

0:00

DIY biologists from around the world hope their research will drive down the cost of insulin.

Watch Dying for Medicine in America, on SBS OnDemand

In some parts of the world, a month’s supply of insulin costs hundreds of dollars. Sydney man Alex Kelly is challenging the world’s biggest pharmaceutical companies by making the life-saving drug in this lab for a fraction of the cost.

Alex is part of the Open Insulin Project that aims to generate research that will be the basis for the generic production of life-saving drug. The ultimate goal for biohackers like Alex is to disrupt the business model of major pharmaceutical companies.

Alex’s lab has no running water or gas, and most of the equipment is secondhand. But despite the lab’s humble resources, Alex connects with a global network of other volunteer “biology nerds” to research newer and less expensive ways to make insulin.

“In some parts of the world [insulin] can cost more than two or three weeks of wages just for a month's supply,” Alex told Dateline.

As well as drumming up publicity for the issue, Alex and the team have created their own synthetic bacteria -- dubbed “Winsulin” -- and have “taught” four different types of bacteria to produce insulin.

Dateline
Alex Kelly works in a lab he describes as a "closet."
Dateline

Why is insulin so expensive?

Before the discovery of insulin, diabetes was a death sentence.

It was discovered in 1921 by Canadian scientists --  Frederick Banting, John Macleod and Charles Best -- who sold the patent for for just three Canadian dollars. 

Now, millions of people around the world rely on the drug, and the cost has been skyrocketing for decades. According to the World Health Organisation (WHO), of the 65 million type 2 diabetics, only half are able to access insulin, largely due to high prices.  

The cost of insulin in the US is so prohibitive that some diabetics are forced to ration their insulin.

Three manufacturers - Eli Lilly, Novo Nordisk and Sanofi - control most of the global market for the drug, setting prices that are prohibitive for many people and countries.

In the US alone, insulin has become the poster child for pharmaceutical price gouging. The price of just one 10-milliliter vial of Lantus -- one of the most popular insulins on the market – has shot up from just $35 in 2001 to $270 today.

A deadly problem in the US

The cost of insulin in the US is so prohibitive that some diabetics are forced to ration their insulin. In a clinical study published in JAMA Internal Medicine this year, researchers found that roughly 30 percent of US patients they surveyed rationed insulin. According to advocacy group Right Care, four people have died from insulin rationing in the US so far this year.

Twenty-one-year-old Antavia Worsham died because prolonged high blood sugar levels essentially poisoned her body causing organ failure. This is known as diabetic ketoacidosis. Antavia’s mother Antoinette believes she was rationing her insulin because she simply couldn’t afford it.

“More and more young adults are going to die. Because they can't afford their healthcare,” Antoinette told Dateline.

Dateline
Antoinette's daughter died from prolonged high blood sugar levels.
Dateline

Antoinette’s second daughter also has diabetes and to ensure she has enough medication they travel hours across the US border to Canada where they can access cheaper insulin. Antoinette said the yearly cost of the drugs in Canada is the same as a 90-day supply in the US.

“I feel like I'm doing what needs to be done for my daughter to stay alive,” she said.

The price of pharmaceutical drugs has become one of the biggest issues on the campaign trail ahead of next year’s US presidential election. While both sides of politics acknowledge the problem, there is no bipartisan solution.

President Donald Trump has proposed a plan to allow the mass importation of prescription drugs that would be cheaper for consumers, while Elizabeth Warren and Bernie Sanders want Medicare for all US citizens.

Hope for a generic brand

The WHO stepped in last week and said it would begin testing and approving cheaper versions of insulin to encourage more generic drug makers to enter the market, forcing manufacturers to lower their prices.

The process of getting pharmaceutical companies to produce generic versions of an existing drug, and then testing it for quality and safety, is known as a prequalification program.

Once the generic version passes the safety tests, it is introduced into the global marketplace at a cheaper rate, driving down the price of the drug.

Woman injecting insulin using syringe close-up of hands
Diabetics who can't afford insulin are forced to ration their medication.
MOODBOARD

Through this process, United Nations agencies, such as Doctors Without Borders, will be able to buy approved generic versions of insulin.

In 2001, the WHO used similar tactics to make HIV/AIDS drugs more affordable.

“Diabetes is on the rise globally, and rising faster in low-income countries,” said Dr Tedros Adhanom Ghebreyesus, WHO Director-General, in a statement.

“Too many people who need insulin encounter financial hardship in accessing it, or go without it and risking their lives.”

Biohackers proving insulin is cheap to make

Meanwhile, Alex Kelly and his colleagues from the Open Insulin Project continue their work.

Alex said it is unrealistic diabetics would use their products, but he hopes by raising awareness of the low cost of production, it will act as a social lever that might force pharmaceutical companies to open the market.

Dateline
Alex Kelly wants to use science to make a difference in the world.
Dateline

He says what would help the US is a truly free market; one where they can actually access safe and reliable insulin.

“We are decades away from insulin being reasonably priced for everyone in the world. We might see a cure for diabetes before then,” he said.

“This cure may cost many thousands of dollars and people will still require insulin for many decades.”