Nancy Fern Olivieri (born 1954) is a prominent

Toronto Toronto ( , locally pronounced or ) is the List of the largest municipalities in Canada by population, most populous city in Canada. It is the capital city of the Provinces and territories of Canada, Canadian province of Ontario. With a p ...

haematologist Hematology ( spelled haematology in British English) is the branch of medicine concerned with the study of the cause, prognosis, treatment, and prevention of diseases related to blood. It involves treating diseases that affect the production ...

and researcher with an interest in the treatment of

haemoglobinopathies Hemoglobinopathy is the medical term for a group of inherited blood disorders involving the hemoglobin, the major protein of red blood cells. They are generally single-gene disorders and, in most cases, they are inherited as autosomal recessive ...

. She is best known for a protracted struggle with the Hospital for Sick Children and the

pharmaceutical company The pharmaceutical industry is a Medicine, medical industry that discovers, develops, produces, and markets pharmaceutical goods such as medications and medical devices. Medications are then administered to (or Self-medicate, self-administered b ...

Apotex Apotex Inc. is a Canadian pharmaceutical corporation. Founded in 1974 by Barry Sherman, the company is the largest producer of generic drugs in Canada, with annual sales exceeding . By 2023, Apotex employed close to 8,000 people as Canada's large ...

about the drug

deferiprone Deferiprone, sold under the brand name Ferriprox among others, is a medication that chelates iron and is used to treat iron overload in thalassaemia major. It was first approved and indicated for use in treating thalassaemia major in 1994 and ...

Early life

Olivieri was born to the

Hamilton, Ontario Hamilton is a port city in the Canadian Provinces and territories of Canada, province of Ontario. Hamilton has a 2021 Canadian census, population of 569,353 (2021), and its Census Metropolitan Area, census metropolitan area, which encompasses ...

, Doctor Fernando Olivieri and Victoria Olivieri. Her paternal grandfather had immigrated to Hamilton from Italy in 1909. Olivieri received a Bachelor of Science from the

University of Toronto The University of Toronto (UToronto or U of T) is a public university, public research university whose main campus is located on the grounds that surround Queen's Park (Toronto), Queen's Park in Toronto, Ontario, Canada. It was founded by ...

and an MD from

McMaster University McMaster University (McMaster or Mac) is a public research university in Hamilton, Ontario, Canada. The main McMaster campus is on of land near the residential neighbourhoods of Ainslie Wood, Ontario, Ainslie Wood and Westdale, Ontario, Westd ...

in 1978. She has also pursued training in Internal Medicine and Hematology at McMaster, University of Toronto, and

Harvard University Harvard University is a Private university, private Ivy League research university in Cambridge, Massachusetts, United States. Founded in 1636 and named for its first benefactor, the History of the Puritans in North America, Puritan clergyma ...

Deferiprone controversy

Starting in 1989, Olivieri was part of a group evaluating the use of a drug,

, in treating persons with the blood disorder

thalassaemia Thalassemias are a group of inherited blood disorders that manifest as the production of reduced hemoglobin. Symptoms depend on the type of thalassemia and can vary from none to severe, including death. Often there is mild to severe anemia (lo ...

. Starting from 1985, this work included a clinical trial partly funded by Apotex. During the course of the trial, Olivieri became concerned about evidence that pointed to the drug being inefficacious for some patients. Olivieri informed both the research ethics board that was monitoring the study and Apotex, the drug maker. The research ethics board instructed Olivieri to inform participants about her concerns. Apotex responded by noting that Olivieri had signed a confidentiality agreement as part of the drug trial and that informing participants about her concerns, the validity of which Apotex disputed, would violate that confidentiality agreement. In 1996, Apotex threatened to vigorously pursue legal remedies against her if she disclosed her conclusions to patients. Olivieri disclosed her concerns to her patients and Apotex ended the portion of the study in which she was participating. In 1998, the ''

New England Journal of Medicine ''The New England Journal of Medicine'' (''NEJM'') is a weekly medical journal published by the Massachusetts Medical Society. Founded in 1812, the journal is among the most prestigious peer-reviewed medical journals. Its 2023 impact factor was ...

'' published a paper by Olivieri and seven other authors, with further study results suggesting that

led to progressive

hepatic fibrosis Cirrhosis, also known as liver cirrhosis or hepatic cirrhosis, chronic liver failure or chronic hepatic failure and end-stage liver disease, is a chronic condition of the liver in which the normal functioning tissue, or parenchyma, is replaced ...

. Olivieri's scientific findings, which sparked the controversy, have been challenged on the basis of data from clinical trials conducted by Apotex.Full Text

Deferiprone Deferiprone, sold under the brand name Ferriprox among others, is a medication that chelates iron and is used to treat iron overload in thalassaemia major. It was first approved and indicated for use in treating thalassaemia major in 1994 and ...

is approved for use in over 50 countries, but not in

Canada Canada is a country in North America. Its Provinces and territories of Canada, ten provinces and three territories extend from the Atlantic Ocean to the Pacific Ocean and northward into the Arctic Ocean, making it the world's List of coun ...

.Full Text
It was approved in the US in 2011 under the FDA's accelerated approval program. An investigation commissioned by the

Canadian Association of University Teachers The Canadian Association of University Teachers (CAUT; , ACPPU) is a federation of independent associations and trade unions representing approximately 70,000 teachers, librarians, researchers, and other academic professionals and general staff a ...

(CAUT) revealed that one of Olivieri's critics,

Gideon Koren Gideon Koren, FACMT, FRCP(C) (Hebrew: גדעון קורן; born August 27, 1947, in Tel Aviv, Israel) is an Israeli-Canadian pediatrician, clinical pharmacologist, toxicologist, and a composer of Israeli folk music. He was a doctor at the Hosp ...

, had anonymously sent disparaging letters about Olivieri to the media and colleagues. Koren initially denied responsibility, but substantial DNA evidence tied him to the letters, and he was reprimanded. Olivieri has advocated greater

academic freedom Academic freedom is the right of a teacher to instruct and the right of a student to learn in an academic setting unhampered by outside interference. It may also include the right of academics to engage in social and political criticism. Academic ...

and called for less control of research by

pharmaceutical companies The pharmaceutical industry is a Medicine, medical industry that discovers, develops, produces, and markets pharmaceutical goods such as medications and medical devices. Medications are then administered to (or Self-medicate, self-administered b ...

. This situation was publicised extensively and was investigated by the Canadian Association of University Teachers.

Awards and honours

Olivieri was awarded the 2009 AAAS Award for Scientific Freedom and Responsibility for her '' "indefatigable determination that patient safety and research integrity come before institutional and commercial interests and for her courage in defending these principles in the face of severe consequences."'' Olivieri is the 2023 recipient of the

John Maddox Prize The John Maddox Prize is an international prize administered by Sense about Science in partnership with ''Nature (journal), Nature''. One or two individuals are recognised annually by the Prize for their work promoting sound science and evidence de ...

in recognition of her ''“determination to act with integrity…in the face of extreme pressure from the company producing it, ultimately at great personal cost”'' in the Deferiprone controversy. The Maddox Prize is awarded by the UK-based

Sense about Science Sense about Science is a United Kingdom charitable organization that promotes the public understanding of science. Sense about Science was founded in 2002 by Lord Taverne, Bridget Ogilvie and others to promote respect for scientific evidence an ...

charity in partnership with

Nature (journal) ''Nature'' is a British weekly scientific journal founded and based in London, England. As a multidisciplinary publication, ''Nature'' features Peer review, peer-reviewed research from a variety of academic disciplines, mainly in science and t ...

References

External links

Nancy F Olivieri, BSc, MD, FRCPC
-

University Health Network University Health Network (UHN) is a public research and teaching hospital network in Toronto, Ontario, Canada. It is affiliated with the University of Toronto, and is the largest health research organization in Canada, ranking first in Canada for ...

Research.
Hemoglobal
- a charitable organization founded by Nancy Olivieri and

David Weatherall Sir David John Weatherall (9 March 1933 – 8 December 2018) was a British physician and researcher in molecular genetics, haematology, pathology and clinical medicine. Early life and education David Weatherall was born in Liverpool.Geoff Watt ...

July 2024 mention in Indian Journal of Medical Ethics Founding member of charity RxISK.org which power blogs Rxisl blog and David Healy blog {{DEFAULTSORT:Olivieri, Nancy Living people Canadian medical researchers University of Toronto alumni Academic staff of the University of Toronto McMaster University alumni 20th-century Canadian physicians 21st-century Canadian physicians Canadian whistleblowers Scientists from Toronto Physicians from Ontario Canadian hematologists 20th-century Canadian women physicians 21st-century Canadian women physicians Canadian people of Italian descent 20th-century Canadian women scientists 1954 births Medical controversies in Canada

Early life

Deferiprone controversy

Awards and honours

See also

References

Further reading

External links