Thalidomiders

What Happened

On 1 December 2014, the House of Commons, responding to a New Democratic Party-led motion, voted unanimously to offer “full support” to the Canadian victims of thalidomide. Conservative Minister of Health Rona Ambrose, like many of her predecessors, had proven lax in informing herself about the half-century of suffering of thalidomiders (survivors had been requesting a meeting for months; Mackrael). Thalidomiders–this name chosen by victims of a drug that had promised relief from pregnancy’s frequent sleeplessness and nausea to their also victimized mothers in the 1950s and 1960s–refused, however, to be silenced. Supported by the War Amps of Canada, they demanded recognition of the preventable and life-long repercussions of Ottawa’s failure to protect Canadians from pharmaceutical experiments that stunted and undermined bodies.

Unlike victims in the United Kingdom and Germany, where governments had already accepted over-due financial and moral responsibility, Canadian thalidomiders were struggling for bare survival in 2014. Ottawa’s earlier attempt at compensation in 1991 had proved pitifully inadequate to meet the deepening costs of disability.

The favourable November vote in the House of Commons resembled the promised reversal of policy won from the reluctant Harper administration by Canadian veterans earlier the same year (http://voices-voix.ca/en/facts/profile/veterans). Long-standing official reluctance to accept duties of care was suddenly replaced by the appearance of sympathy and responsibility. Just as with veterans, however, the 2015 election may well determine the final outcome for Canada’s indomitable but dwindling community of thalidomiders.


Background

Canada has had significant public health failures. Think of tainted blood nation-wide in the 1980s and mercury poisoning in the Anishinabe community of Grassy Narrows, Ontario, from the 1960s on. Tragedy is one part of such stories, but so too is survivors’ courage in demanding redress. Critical to such causes is support by civil society groups and investigation by a free press. In 2014, Canadians were once again sharply reminded both of recurring official indifference and incompetence, and of the significance of campaigns to call authorities to account.

After World War Two, thalidomide was simply “the latest addition to a fast-growing pharmacopoeia of drugs prescribed for pregnant women” (Clowe, p. 54). Pregnancy, like women’s health and appearance, increasingly promised fat profits to pharmaceutical and other corporations happy to foster modern women’s feelings of inadequacy and hopes for quick and easy technological fixes. Despite the absence of systematic clinical testing, its German producers, Chemie Gruenenthal, marketed thalidomide globally under dozens of names for problems including “colds, coughs, flu, asthma, headaches, anxiety and sleeplessness,” as well as nausea (Haynes, p. 6).

While the drug was officially barred in September 1960 from the United States by Dr. Frances Kelsey, a Canadian employee of the US Food and Drug Administration, thalidomide was authorized for Canadian distribution in April 1961. By then, however, not only were samples in circulation and tablets already purchased abroad, but wives of soldiers posted to Germany between 1959 and 1961 had effectively served as guinea pigs for the new drug. These victimized parents were encouraged to abandon disabled babies on the grounds that their presence might harm military careers (Picard, 2012). What happened to them remains a little-known part of the thalidomide story.

The media identified the first Canadian-born baby as Toronto’s Kim Beeston (b. 20 Jan. 1962). This attractive child, later an enthusiastic swimmer and wheel-chair basket-ball player, became the poster-girl for individual (or indeed family) triumph over adversity. On 27 June 2003, she died in pain and alone in public housing. Her father committed suicide the next day (Perez).

Between Kim Beeston’s birth and death, Ottawa broadened Health Canada’s powers in 1962 to include “authority to enact regulations respecting: (1) the distribution or conditions of distribution of drug samples, (2) the prohibition of sale of certain drugs, (3) the methods of preparation, manufacture, preserving, packing, labeling, storing and testing of new drugs, and (4) the sale or conditions of sale of any new drug.” This was followed by a complete revision of the Food and Drugs Regulations (Daley and Wall).

In January 1963 the Liberal Minister of National Health and Welfare also admitted to Parliament that, “It is our job to ensure that these victims are cared for in the best possible manner ... [and] their needs are met to the fullest possible extent we can devise” (Report…Synopsis; Forbes). Premier John Robarts of Ontario quickly promised “we would as a province look after these babies.” Some victims also sued thalidomide’s manufacturer. In July 1968, eight Canadian families received financial settlements from the company they could not disclose, but no admission of corporate guilt. Early payments differed widely, often with little regard for the extent of handicap, and some survivors received relatively little. Soon enough, inflation and the demands of aging bodies also ate away at promised security. Even so, meager settlements sometimes compromised eligibility for provincial welfare support. Poverty proved hard to escape.

In response to mounting distress, the War Amputees of Canada (a good example of the civil society actors so often assessed today as unfriendly by the Harper government) initiated the Thalidomide Task Force to force government redress in 1987. Its impressive two-volume report (1989) detailed government and corporate failures of due diligence and protection. The War Amps also organized a submission to the United Nations Human Rights Committee “stating that Canada had failed to protect the interests of its thalidomide victims in contravention of international human rights standards dealing with children and the disabled, and that compensation was warranted on the grounds that the victims had suffered a gross violation of their human rights” (Report…Synopsis). Such publicity did much to force Ottawa to offer limited compensation in the hope that this would end its obligations in 1991. The Task Force, however, regarded payment as only interim until “the future needs and financial requirements of the thalidomide victims were identified” (Report…Synopsis).

Between 1991 and 2014, Canadian thalidomiders (by the last year numbering only about 95) encountered mounting challenges, including seriously compromised opportunities for education, employment and families, and bodies worn-out with the struggles of daily life. In 1997, the CBC program As It Happens sympathetically chronicled their worsening story, but more than a decade and a half passed before it again surfaced for wide-spread public attention. In 2014, a YouTube video, “Right the Wrong/ Réparons les Torts,” once more reminded Canadians of the suffering and the heroism of thalidomiders and the failure of governments. British and German documentaries made the same point (“Thalidomide – The Fifty Year Fight” BBC Two [2014] and “NoBody’s Perfect” [2008]). Such coverage was essential in securing the unanimity of the 2014 vote.

Despite the thalidomide tragedy’s obvious lessons for public policy, Canadians, especially women, remain vulnerable when government oversight of public health fails. Later calamities involving contraception (i.e. Depo Provera, the Dalkon Shield, and Diane-35) confirm the need for vigilance (see Richardson and Rackley, Mintze, Peppin, Lexchin, Attaran, Ziomislic). In 2011, Canada’s Auditor-General warned that Health Canada’s protection was still far from perfect and was indeed suffering badly under the Harper government: “the Department is slow to assess potential safety issues” (p. 2), “there remains no definitive, publicly accessible source of information on clinical trials authorized by the Department” (p. 11), and “the Department’s performance for reviewing generic drugs, over-the-counter drugs that required a clinical review, and post-market change submissions was particularly poor” (p. 13). In December 2014, an academic study drew similar conclusions in demonstrating that Health Canada appeared “indifferent to enforcing its own regulations when it comes to prescription drug ads targeted to health consumers” (Fayerman).

Relevant Dates

(see also “Right the Wrong Timeline” in Sources)

  • Dec. 1, 2014: the House of Commons unanimously passes the NDP motion ‘to right the wrong’ and compensate Canada’s survivors;
  • Nov. 25, 2014: the Globe and Mail asks, “Has there ever been a group more obviously deserving of government compensation than Canada’s thalidomide survivors?”
  • Nov. 2014: Health Minister Rona Ambrose boasts that “Canada has one of the safest and most rigorous drug-approval systems in the world.”
  • 2014: Appearance of the YouTube video, Right the Wrong/Réparons les Torts
  • 2013: German government increases support for thalidomide survivors
  • 2011: Thalidomide Victims’ Association of Canada publishes, “Study on the Current Living Conditions of Thalidomide Survivors and their Projections for their Future”
  • 2009: United Kingdom funds significant on-going assistance for thalidomide survivors
  • 1997: CBC’s As It Happens airs, “Thalidomide: Bitter Pills, Broken Promises”
  • 1990: Ottawa offers limited, ‘take-it-or-leave it’ compensation
  • 1988: Thalidomide Victims’ Association of Canada formed in association with War Amps Canada (WAC)
  • 1987: Submission by WAC to the UN Human Rights Committee
  • 1987: WAC establishes Thalidomide Task Force; reports in 1989
  • 1968: Eight Canadian families reach ‘gag’ settlement with manufacturer, which, however, accepts no culpability
  • 1965: Canadian Adverse Drug Reaction Monitoring Program established
  • 1963: Legislation substantially extends Health Canada’s powers over distribution and sale of drugs
  • March 1962: Canada withdraws thalidomide from market
  • Jan. 1962: Birth of Kim Beeston in Toronto
  • Dec. 1961: Thalidomide withdrawn for sale in UK
  • Nov. 1961: Thalidomide withdrawn for sale in West Germany
  • April 1961: Thalidomide approved for sale in Canada
  • Sept. 1960: Dr. Frances Kelsey refuses permission for sale of thalidomide in US
  • 1960: British medical journals warn of nerve damage associated with Thalidomide
  • 1953: Chemie Gruenenthal, West Germany, syntheses thalidomide

Role or Position

The tragedy of Canadian thalidomiders and their parents demonstrates the dangers to public health when governments deny or neglect responsibility for monitoring and controlling the circulation and sale of pharmaceuticals. The War Amps of Canada and the Thalidomide Victims’ Association of Canada demonstrate the essential role of civil society actors in ensuring the well-being of Canadians. The media’s role in bringing the suffering of thalidomiders to the attention of the Canadian public reaffirms the importance of an independent press.

Implications and Consequences

The tragic history of thalidomide in Canada, and elsewhere, had many outcomes. First of all, it demonstrates the recurring medicalization and vulnerability of women, especially when pregnant (see Warsh and Mitchinson). Second, the “readiness of some Canadians to destroy, dispose of or otherwise erase physically imperfect children suggests that eugenic thinking continued to circulate after World War Two” (Haynes). Third, it took a calamity to prompt the federal government’s extension of Health Canada’s ability to protect Canadians from unscrupulous pharmaceutical firms. Fourth, it demonstrates the significance of civil society groups and a free press in highlighting critical issues and insisting on justice. Fifth, experience with thalidomide has not proved sufficiently instructive to prevent similar public health failures by Canadian governments.

Free speech: When receiving early (and inadequate) compensation from the manufacturer, vulnerable thalidomiders and their families had to accept no disclosure clauses that limited their freedom to put their case to the Canadian public.

Transparency: Claims by Canada’s Minister of Health in 2014 of a rigorous and safe drug approval regime misdirected public attention and failed to acknowledge recurrent failures of due diligence.

Civil Society: The seeming promise of financial support in 2014 confirms the essential nature of civil society actors—here the Thalidomide Victims Association of Canada and the War Amps—for directing attention and offering remedy to injustice and lack of transparency.

Critical journalism was essential to the promise of a fair deal. A free press’s crusade on behalf of the thalidomiders educated Canadians about a national tragedy and forced the Harper government, and those that preceded it, to pay attention.

Democracy and Equality: Canadians with disabilities have always faced an uphill struggle to win recognition of rights to fair treatment. Thalidomide’s victims have suffered multiple forms of exclusion, experiencing both government hostility and, often, public prejudice that added social disadvantage to the injury inflicted by the pharmaceutical industry.

 

Published: Jan. 23, 2015
Image: Mike Derer, Associated Press

Sources