A catharsis for thalidomide survivors

Thalidomide, even today, still evokes decades of human suffering and hardship.

But it owes its origin to 1953, when, at the time, it was created and marketed by the German pharmaceutical company Chemie Grünenthal as a tranquilliser and wonder drug for various symptoms, including anxiety, sleep disorders, tension, and morning sickness.

The shocking fact, revealed only years later and in breach of standard medical protocols, was that it started off on the wrong, nay fatal, footing as it had never been tested on pregnant women or animals. It will eventually become a nightmare for many families, including those in Malta.

Mothers who took thalidomide during the early months of pregnancy suffered severe deformities in their babies’ hands and feet. Administering the drug during childbirth led to mental development defects, heart issues, organ damage and even death.

For a whole decade, the use of thalidomide by pregnant women led to what is considered one of the biggest medical disasters in history. Thousands of children were born with severe deformities across 46 countries, including Malta, and thousands more died as a result.

In 1961, thalidomide was withdrawn from the European market. By 1964, countries such as Canada, Australia, the UK and Germany had already begun taking precautions to stop the distribution of thalidomide. However, Malta continued to distribute the drug until 1968.

Why Malta continued doing so remains a despicable episode to this day, as the thalidomide tragedy in our country could have easily been avoided.

Since 1959, the Medical Health Department in Malta had been pushing to amend the law for stricter public security controls. Weeks and months continued to go by until September 1962, when a heated debate arose in the Maltese Parliament concerning thalidomide use. It ended with the Maltese government promising to continue studying the situation and conducting research in Malta, instead of taking immediate action.

An unforgivable, degrading and inhuman act occurred in the late 1950s and early 1960s, when the British used Malta as a place to carry out research. They observed the effects of this medicine in Malta to compare them with what was happening in the UK.

Although only 25 cases were officially recognised in Malta, there were around 1,500 child deaths related to thalidomide intake documented by Maltese hospitals. The number of survivors is thankfully lower, but they are still seeking adequate compensation and a catharsis for their traumatic ordeal. Indeed, in May 2022, the Thalidomide Survivors Association (Malta) was registered with the Office of the Commissioner for Voluntary Organisations.

In 2023, the government apologised for the lack of immediate action to prevent the hardship those affected by this medicine suffered. Not only that, but the apology was followed by a financial compensation scheme to the survivors, with payments still being paid out today.

One of the positive legacies of thalidomide has been to make disability more visible. Since childhood, when their parents fought for justice, Maltese thalidomiders have not featured enough in the local media.

Emotions run high when thalidomiders reflect on Grünenthal, the company that produced thalidomide in the 1950s. In 2012, the company’s chief executive unveiled a statue representing a thalidomide survivor in Stolberg, Germany, along with an apology for the first time. The apology was dismissed by the thalidomide community worldwide, primarily because Grünenthal has still not properly admitted liability and compensation claims are still outstanding.

In contrast, in 2016, three members of the UK thalidomide community secured a site for a permanent Thalidomide Memorial in Cardiff to commemorate those who have died. It is a testament to the empathy survivors have for each other and their recognition of the value of every life affected by thalidomide. It puts the cold, half-hearted apology from Grünenthal to shame.

Malta should emulate such a move and secure a suitable site to put up a memorial to commemorate Maltese thalidomide victims.

There are many legacies of thalidomide. From the early campaigning by the parents and media coverage to the continued work of campaign teams, the thalidomide catastrophe has paved the way for others seeking justice, especially for medical and pharmaceutical negligence and malpractice.

There is still much to learn from thalidomide, from its complex history and ongoing impact on people’s lives today to understanding its mechanisms to aid future drug safety and to help identify new drugs retaining clinical benefit without the risk of causing embryopathy.

For thalidomide survivors, the original impairments caused by the drug are compounded by the consequences of a lifetime of living with a rare disability and early-onset age-related health problems. This has profound implications for their quality of life and need for health and social care services. These issues must be addressed in research and clinical practice if thalidomide survivors are to age well.

No doubt, many would say any financial payment, however generous, would not be enough to truly compensate for what thalidomide victims with severe disabilities had to go through.

It is vital that there still be an ongoing pathway for survivors to get justice, recognition and ongoing support.

The thalidomide saga has gone on too long. The victims’ families and survivors need closure, as they are extremely and unacceptably exhausted. They can’t spend the rest of their days fighting.

The handful of people who survived one of history’s worst medical disasters continue to wait to see the results of a battle they should never have had to fight.