Thalidomide disaster: background to the compensation debate

At a press conference in Ottawa on Tuesday, a new organization, the Thalidomide Survivors’ Task Group, said that at a meeting on Oct. 19, federal disabilities minister Kent Hehr “managed to insult and degrade us repeatedly.”

While those kinds of comments are sure to get the media’s attention — and they certainly did —  the group is demanding the federal government double the compensation it agreed to pay in 2015, pointing today to “the government’s negligence.”

A documentary broadcast on CBC’s Documentary Channel earlier this year, No Limits, says thalidomide “was the worst drug disaster in history,” while in 2014 the Guardian called it a “pharmaceutical outrage.”

What is thalidomide?

Thalidomide was first marketed in West Germany in 1957 by the Chemie Grunenthal company. The company promoted it as effective against a number of conditions but its primary use was as a sedative.

Under the brand name Contergan, Grunenthal promoted the “absolute non-toxicity” and “safeness” of the drug.

Thalidomide was soon given to pregnant women for nausea and morning sickness. In some countries it could be purchased without a prescription.

Where was thalidomide available?

Thalidomide was available in 46 countries, including Canada.

When was thalidomide sold in Canada?

Canadian doctors began to receive samples of thalidomide in 1959 but sales did not begin until April 1961, under the brand names Kevadon and Talimol. The licensee was the Merrell Company, based in the United States.

By April 1961, there were already warnings about thalidomide and malformed babies, as well as nerve damage in adults.

Thalidomide Survivors 20171205

Members of the Thalidomide Survivors’ Task Group hold a news conference on Parliament Hill, in Ottawa, Tuesday, December 5, 2017. Clockwise from left are Fiona Sampson, Mary Ryder, Alexandra Niblock and Lee Ann Dalling. (Fred Chartrand/Canadian Press)

What happened in the U.S.?

Thalidomide was not sold in the U.S. until 1998 (for treatment of complications related to leprosy, and in 2006 for multiple myeloma).

A Canadian pharmacologist, Frances Oldham, is credited for blocking thalidomide approval in the U.S. when it was promoted as a wonder drug elsewhere. As an employee at the U.S. Food and Drug Administration, Oldham wasn’t convinced the drug was safe. 

Oldham died in London, Ont., in 2015.

Canadian thalidomide ‘hero’ dies at 1011:49

U.S. doctors did hand out sample tablets and at least 17 children were born in the U.S. with thalidomide-induced malformations.

What were the impairments for babies whose mothers had taken thalidomide while pregnant?

According to the U.K.’s Ministry of Health, children could “suffer reduction deficiencies of the limbs, malformations of the eyes, ears and deafness, defects of the heart and kidneys and malformations of the alimentary system.”

Phocomelia is the most severe impairment, the U.K.’s Thalidomide Society says, “a condition where the long bones of some or all limbs are misshapen and where the hands and feet, which can be either mostly fully-formed, malformed or rudimentary, arise almost on the trunk.”

The Society lists a wide spectrum of limb disabilities caused by the drug.

“The drug harmed the developing foetus only if taken in the first three months of pregnancy,” according to the Society.

When was thalidomide withdrawn?

The first thalidomide-affected baby was born in 1956, to a Grunenthal employee in West Germany, before the drug was marketed.

By 1961, Australian obstetrician William McBride had informed the Australian distributor that he had evidence thalidomide could lead to malformed babies and published a letter in the Lancet, a leading medical publication. 

There was also increasing evidence in Germany in 1961 that thalidomide was responsible for a spike in newborns’ limb malformations. 

By October, Grunenthal had internal evidence their drug was responsible for the malformations but continued to tell doctors thalidomide was safe.

On Nov. 27, Grunenthal withdrew the drug from the West German market. A few days later it was also off the market in the U.K. and Australia.

Thalidomide survivors

An emotional Mercedes Benegbi, a thalidomide survivor and executive director of the Thalidomide Victims Association of Canada, celebrates on Parliament Hill after the House of Commons voted to compensate survivors of thalidomide in December 2014. (Fred Chartrand/Canadian Press)

In Canada the drug remained on the market until March 1962.

Thalidomide was available in Spain until 1965.

What are the numbers?

Worldwide, an estimated 24,000 babies were born with thalidomide-induced malformations. An additional 123,000 stillbirths and miscarriages were due to thalidomide, according to conservative estimates.

In Canada, the drug was responsible for over 100 children born with severe defects.

In West Germany, that number was about 6,000, and in the U.K., 2,000.

What compensation have Canadian victims received?

In the 1990s, the federal government distributed lump-sum payments of between $ 52,000 and $ 82,000 to 109 thalidomide victims. 

In 2014, finding that compensation insufficient to cover their medical needs, the Thalidomide Victims Association of Canada, then representing about 120 survivors, requested the federal government provide additional $ 250,000 lump-sum payments and annual payments of $ 75,000 to $ 150,000. 

In 2015, the federal government announced a $ 125,000 lump-sum payment to thalidomide survivors and an annual pension from the government of up to $ 100,000.

Thalidomide Survivors say they were degraded by the Disabilities Minister1:57

Kent Hehr speaks with reporters7:05

‘We were all stunned’7:11

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