Orla Tinsley

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Orla Tinsley is an Irish journalist, campaigner and multimedia artist. [1] [2]

Contents

Work

Tinsley began writing for The Irish Times on the state of cystic fibrosis care in Ireland in 2005 when they were 18. Their work launched a decade-long campaign to improve awareness of and healthcare services for cystic fibrosis in Ireland. The campaign became a nationwide community effort, sustained by Tinsley's articles in The Irish Times about lack of facilities, the deaths of friends, and the stories and energy of people with CF and their families and communities around Ireland. [3]

In September 2008, for their work they were named Rehab Young Person of the Year [4] In April 2009, they appeared on Late Late Show after writing several pieces in The Irish Times holding government to account on broken promises to build an adult cystic fibrosis unit in Dublin. [5] In 2009, they began an internship in The Irish Times. That same year the promised government funding for the cystic fibrosis unit was pulled and the campaign reprised. Several campaigners from the previous had died. Tinsley and other new campaigners featured on RTE Liveline Show which played an important role in the campaign. Tinsley was named Irish Tatler Magazine's Woman of the Year [6] in 2009. In 2010, they were awarded the Young Medical Journalist of the Year award.

Producer and writer

In April 2011, Tinsley presented, co-wrote and researched a special documentary for RTÉ's flagship current affairs programme Prime Time to apply pressure for building to begin at St Vincent's Hospital in Dublin. [7]

Author

In September 2011, their memoir Salty Baby : A memoir was published by Hachette. The Sunday Times described the book as "gonzo journalism". It was shortlisted for Best Newcomer at the Bórd Gáis Irish Book Awards. [8]

Activism

The Adult Cystic Fibrosis Unit campaign

In July 2012, after campaign work over numerous years, a dedicated Cystic Fibrosis Unit opened. [9] The ward block has an outpatient and inpatient facility for people with cystic fibrosis. [9] It also has a floor of isolation rooms for people with cancer and another floor for those with infectious diseases who need isolation. [9]

Similar units have opened in Cork University Hospital and University Hospital Limerick. [10] [11]

Transgender rights

Tinsley identifies as queer and non-binary. [12] In 2012 and 2013, Tinsley focused on the rights of transgender people to attain gender recognition in Ireland. They were named Broadcaster / Journalist of the Year by the Gay and Lesbian Association in 2013. [13]

New cystic fibrosis drug

In late 2012, Tinsley launched a campaign to get Kalydeco into Ireland after experts rejected making the drug available because it was too expensive. The drug is the first to treat the cause of cystic fibrosis and not just the symptoms. [14] In February 2013 the Minister for Health announced that the drug would be made available. [15]

Since late 2013, Tinsley is one of the first people in the world to be treated by the second new cystic fibrosis drug lumacaftor/ivacaftor which treats the most common mutation of CF. The drug has proven to improve lung function and health for people with CF. [16]

They attend dialysis at the Mater Misericordiae University Hospital in Dublin.

Personal life

Tinsley received a double lung transplant in December 2017. [2]

Media

Tinsley features in an Irish documentary Orla Tinsley: Warrior, which follows the process of their double lung transplant in New York in 2018. [17] In 2020 the film was nominated as a finalist in the New York Festivals TV and Film Awards. [18]

Awards and honours

Related Research Articles

<span class="mw-page-title-main">Cystic fibrosis</span> Autosomal recessive disease mostly affecting the lungs

Cystic fibrosis (CF) is a rare genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. The hallmark feature of CF is the accumulation of thick mucus in different organs. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. Other signs and symptoms may include sinus infections, poor growth, fatty stool, clubbing of the fingers and toes, and infertility in most males. Different people may have different degrees of symptoms.

<span class="mw-page-title-main">Bronchiectasis</span> Disease of the lungs

Bronchiectasis is a disease in which there is permanent enlargement of parts of the airways of the lung. Symptoms typically include a chronic cough with mucus production. Other symptoms include shortness of breath, coughing up blood, and chest pain. Wheezing and nail clubbing may also occur. Those with the disease often get lung infections.

<span class="mw-page-title-main">Cystic fibrosis transmembrane conductance regulator</span> Mammalian protein found in humans

Cystic fibrosis transmembrane conductance regulator (CFTR) is a membrane protein and anion channel in vertebrates that is encoded by the CFTR gene.

<span class="mw-page-title-main">Vertex Pharmaceuticals</span> American pharmaceutical company

Vertex Pharmaceuticals Incorporated is an American biopharmaceutical company based in Boston, Massachusetts. It was one of the first biotech firms to use an explicit strategy of rational drug design rather than combinatorial chemistry. It maintains headquarters in South Boston, Massachusetts, and three research facilities, in San Diego, California, and Milton Park, Oxfordshire, England.

<span class="mw-page-title-main">The Alfred Hospital</span> Hospital in Victoria, Australia

The Alfred Hospital, also known as The Alfred or Alfred Hospital, is a leading tertiary hospital in Melbourne, Victoria. It is the second oldest hospital in Victoria, and the oldest Melbourne hospital still operating on its original site. The Alfred Hospital is one of two major adult trauma centres in Victoria, and houses the largest intensive care unit (ICU) in Australia. In 2021 it was ranked as one of the world's best hospitals. It is located at the corner of Commercial and Punt Roads, Prahran, opposite Fawkner Park.

<span class="mw-page-title-main">Lung transplantation</span> Surgical procedure in which a patients diseased lungs are partially or totally replaced

Lung transplantation, or pulmonary transplantation, is a surgical procedure in which one or both lungs are replaced by lungs from a donor. Donor lungs can be retrieved from a living or deceased donor. A living donor can only donate one lung lobe. With some lung diseases, a recipient may only need to receive a single lung. With other lung diseases such as cystic fibrosis, it is imperative that a recipient receive two lungs. While lung transplants carry certain associated risks, they can also extend life expectancy and enhance the quality of life for those with end stage pulmonary disease.

<span class="mw-page-title-main">Cystic Fibrosis Foundation</span> American non-profit organisation

The Cystic Fibrosis Foundation (CFF) is a 501(c)(3) non-profit organization in the United States established to provide the means to cure cystic fibrosis (CF) and ensure that those living with CF live long and productive lives. The Foundation provides information about cystic fibrosis and finances CF research that aims to improve the quality of life for people with the disease. The Foundation also engages in legislative lobbying for cystic fibrosis.

Venture philanthropy is a type of impact investment that takes concepts and techniques from venture capital finance and business management and applies them to achieving philanthropic goals. The term was first used in 1969 by John D. Rockefeller III to describe an imaginative and risk-taking approach to philanthropy that may be undertaken by charitable organizations.

<span class="mw-page-title-main">Ivacaftor</span> Pharmaceutical medication used to treat cystic fibrosis

Ivacaftor is a medication used to treat cystic fibrosis in people with certain mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, who account for 4–5% cases of cystic fibrosis. It is also included in combination medications, lumacaftor/ivacaftor, tezacaftor/ivacaftor, and elexacaftor/tezacaftor/ivacaftor which are used to treat people with cystic fibrosis.

Lumacaftor (VX-809) is a pharmaceutical drug that acts as a chaperone during protein folding and increases the number of CFTR proteins that are trafficked to the cell surface. It is available in a single pill with ivacaftor; the combination, lumacaftor/ivacaftor, is used to treat people with cystic fibrosis who are homozygous for the F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, the defective protein that causes the disease. It was developed by Vertex Pharmaceuticals and the combination was approved by the FDA in 2015. As of 2015, lumacaftor had no medical use on its own.

<span class="mw-page-title-main">Lumacaftor/ivacaftor</span> Cystic fibrosis drug

Lumacaftor/ivacaftor, sold under the brand name Orkambi among others, is a combination of lumacaftor and ivacaftor used to treat people with cystic fibrosis who have two copies of the F508del mutation. It is unclear if it is useful in cystic fibrosis due to other causes. It is taken by mouth.

<span class="mw-page-title-main">Tezacaftor</span> Chemical compound

Tezacaftor is a drug used for the treatment of cystic fibrosis (CF) in people six years and older, who have a F508del mutation, the most common type of mutation in the CFTR gene. It is sold as a fixed-dose combination with ivacaftor under the brand name Symdeko. It was approved by the U.S. FDA in 2018. The combination of elexacaftor, tezacaftor, and ivacaftor is being sold as Trikafta.

<i>Five Feet Apart</i> 2019 film by Justin Baldoni

Five Feet Apart is a 2019 American romantic drama film directed by Justin Baldoni and written by Rachael Lippincott with Mikki Daughtry and Tobias Iaconis. The film was inspired by Claire Wineland, who suffered from cystic fibrosis. Haley Lu Richardson and Cole Sprouse play two young patients with cystic fibrosis who try to have a relationship despite being forced to stay six feet apart from each other. The film was released in the United States on March 15, 2019 by CBS Films via Lionsgate. It received mixed reviews from critics and grossed $92 million worldwide.

Elexacaftor/tezacaftor/ivacaftor, sold under the brand names Trikafta (US) and Kaftrio (EU), is a fixed-dose combination medication used to treat cystic fibrosis. Elexacaftor/tezacaftor/ivacaftor is composed of a combination of ivacaftor, a chloride channel opener, and elexacaftor and tezacaftor, CFTR modulators.

<span class="mw-page-title-main">Elexacaftor</span> Chemical compound

Elexacaftor is a medication that acts as cystic fibrosis transmembrane conductance regulator (CFTR) corrector.

Peter Grootenhuis was a Dutch-American Medicinal Chemist. Grootenhuis was the Project Leader and Co-Inventor of Ivacaftor (VX-770), the first CFTR potentiator FDA approved drug to treat the underlying cause of Cystic Fibrosis (CF) in patients with certain mutations in the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) gene, who account for 4-5% of CF cases. Grootenhuis also led the Vertex team to subsequent discovery of Orkambi, the combination of Ivacaftor and Lumacaftor(VX-809), approved to treat CF in people with two copies of the F508del mutation. Most recently, Grootenhuis's team discovered Tezacaftor (VX-661) and Elexacaftor (VX-445), which in combination with Ivacaftor are the components of Trikafta, a drug approved by the FDA in 2019 to treat CF in more than 90% of CF patients. For Grootenhuis’ contributions to the discovery of these compounds, he was awarded the 2018 IUPAC Richter Prize, the American Chemical Society’s 2013 Heroes of Chemistry Award, and inducted into the American Chemical Society Division of Medicinal Chemistry Hall of Fame. Grootenhuis has contributed to the discovery of over 11 clinical candidates, co-authored more than 100 peer reviewed papers and is inventor of 65 + U.S Patents, and more than 50 EU Patents.

<span class="mw-page-title-main">Cystic fibrosis and race</span>

Underrepresented populations, especially black and hispanic populations with cystic fibrosis are often not successfully diagnosed. This is in part due to the minimal dissemination of existing data on patients from these underrepresented groups. While white populations do appear to experience a higher frequency of cystic fibrosis, other ethnicities are also affected and not always by the same biological mechanisms. Thus, many healthcare and treatment options are less reliable or unavailable to underrepresented populations. This issue affects the level at which public health needs are being met across the world.

Paul Adrian Negulescu is an American–Romanian cell biologist. He is the Senior Vice President and Site Head of the San Diego Research Center of American pharmaceutical company Vertex Pharmaceuticals. He received the 2022 Shaw Prize in Life science and medicine, together with Michael J. Welsh, for their work that uncovered the etiology of cystic fibrosis and developed effective medications.

References

  1. ↑ "Kildare's All Time Greats: #13 Orla Tinsley". Leinster Leader . Naas. 23 January 2019. Archived from the original on 29 June 2022. Retrieved 1 July 2023.
  2. 1 2 McMahon, Aine; Pollak, Sorcha (21 December 2017). "Orla Tinsley in recovery after double lung transplant". the Irish Times . Archived from the original on 13 February 2018. Retrieved 22 December 2017.
  3. ↑ Kerrigan, Gene (27 May 2007). "When people are dying for Ireland.(COMMENT)". Sunday Independent . Archived from the original on 24 September 2015. Retrieved 9 November 2015.
  4. 1 2 Carter, Erica (3 December 2021). "Orla Tinsley's fight for cystic fibrosis care and double lung transplant". RSVP Live. Archived from the original on 3 December 2021. Retrieved 3 December 2021.
  5. ↑ "RTÉ Television - the Late Late Show - 3 April 2009". RTÉ.ie . Archived from the original on 2 April 2015. Retrieved 28 May 2015.
  6. 1 2 "Woman of Year: Cystic fibrosis campaigner honoured". The Irish Times . Archived from the original on 4 March 2016. Retrieved 28 May 2015.
  7. ↑ "Prime Time – 12th April 2011 (VIDEO)". Raidió Teilifís Éireann. 12 April 2011. Archived from the original on 28 May 2015. Retrieved 9 November 2015.
  8. ↑ "RTÉ Television - the Late Late Show - 16 September 2011". RTÉ.ie . Archived from the original on 2 April 2015. Retrieved 28 May 2015.
  9. 1 2 3 "Cystic fibrosis patients transferred to new €22m facility at St Vincent's". RTÉ News. 30 July 2012. Archived from the original on 9 November 2015. Retrieved 9 November 2015.
  10. ↑ "Evening Echo — Cystic Fibrosis unit to finally open at CUH after months of delay". Archived from the original on 21 October 2015. Retrieved 9 November 2015.
  11. ↑ http://www.clare.fm/news/new-adult-cystic-fibrosis-unit-be-opened-regions-main-hospital-today%5B%5D
  12. ↑ Tinsley, Orla (27 September 2021). "Your One Wild and Precious Life: Something for everyone". The Irish Times . Archived from the original on 30 November 2022. Retrieved 3 December 2021.
  13. 1 2 "Galas 2013 Winners". Queerid. 28 February 2013.[ permanent dead link ]
  14. ↑ "Six One News (Web): CF campaigner Orla Tinsley discusses the approval of new CF drug". RTÉ.ie . Archived from the original on 28 May 2015. Retrieved 28 May 2015.
  15. ↑ "Department of Health". Archived from the original on 28 May 2015. Retrieved 28 May 2015.
  16. ↑ "A Study of Lumacaftor in Combination With Ivacaftor in Cystic Fibrosis Subjects Aged 12 Years and Older Who Are Homozygous for the F508del-CFTR Mutation (TRANSPORT)". U.S. National Library of Medicine. 15 August 2016. Archived from the original on 26 September 2015. Retrieved 9 November 2015.
  17. ↑ "'Warrior,' Documentary About Current Student Orla Tinsley, Finalist for New York Film Award 2020". Columbia - School of the Arts. Archived from the original on 16 May 2021. Retrieved 16 May 2021.
  18. ↑ "Finalists List - New York Festivals". tvfilm.newyorkfestivals.com. Archived from the original on 16 May 2021. Retrieved 16 May 2021.
  19. ↑ "Irish Healthcare Centre Awards 2013". 2013. Archived from the original on 9 November 2015. Retrieved 9 November 2015.
  20. ↑ "Dr Orla Tinsley receives Honorary Doctorate - UCD College of Arts and Humanities". www.ucd.ie. Retrieved 18 September 2023.
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