* . *
  • About
  • Advertise
  • Privacy & Policy
  • Contact
Thursday, August 28, 2025
Earth-News
  • Home
  • Business
  • Entertainment
    ‘SNL’ Parts Ways With Emil Wakim Amid Rumored Season 51 Cast Shakeup – yahoo.com

    SNL Shakes Up Season 51 Cast with Emil Wakim’s Surprising Exit

    Do you have a favorable or an unfavorable opinion of Taylor Swift? – YouGov

    Do You Love Taylor Swift or Not? Share Your Thoughts!

    Upload Season 4 Review – yahoo.com

    Upload Season 4 Review: A Thrilling New Chapter Unveiled

    ‘The Roses’ review: Olivia Colman, Benedict Cumberbatch sparkle in dark comedy – Yakima Herald-Republic

    The Roses’ Review: Olivia Colman and Benedict Cumberbatch Shine in Dark Comedy Delight

    ‘When Calls the Heart’ Fans All Want the Same Thing After Seeing the Show’s Latest Update – yahoo.com

    When Calls the Heart’ Fans Rally Together in Excitement Over Exciting New Update!

    Quotes of the Week: Peacemaker, Project Runway, Countdown and More – yahoo.com

    This Week’s Most Memorable Quotes from Peacemaker, Project Runway, Countdown, and More!

  • General
  • Health
  • News

    Cracking the Code: Why China’s Economic Challenges Aren’t Shaking Markets, Unlike America’s” – Bloomberg

    Trump’s Narrow Window to Spread the Truth About Harris

    Trump’s Narrow Window to Spread the Truth About Harris

    Israel-Gaza war live updates: Hamas leader Ismail Haniyeh assassinated in Iran, group says

    Israel-Gaza war live updates: Hamas leader Ismail Haniyeh assassinated in Iran, group says

    PAP Boss to Niger Delta Youths, Stay Away from the Protest

    PAP Boss to Niger Delta Youths, Stay Away from the Protest

    Court Restricts Protests In Lagos To Freedom, Peace Park

    Court Restricts Protests In Lagos To Freedom, Peace Park

    Fans React to Jazz Jennings’ Inspiring Weight Loss Journey

    Fans React to Jazz Jennings’ Inspiring Weight Loss Journey

    Trending Tags

    • Trump Inauguration
    • United Stated
    • White House
    • Market Stories
    • Election Results
  • Science
  • Sports
  • Technology
    MC Machinery Technology Summit Showcases Manufacturing Innovations – Modern Machine Shop

    MC Machinery Technology Summit Unveils Cutting-Edge Manufacturing Innovations

    US-ROK Technology Cooperation Faces Rising Tensions – The National Interest

    Rising Tensions Put US-South Korea Technology Partnership to the Test

    The Role of AI and Technology in Shaping the Future of Interactive Entertainment – Technology Org

    How AI and Technology Are Transforming the Future of Interactive Entertainment

    Ten upcoming sports stadiums where technology takes to the field – Dezeen

    10 Futuristic Sports Stadiums Revolutionizing the Game with Cutting-Edge Technology

    Figure Technology Solutions, Inc. Files Registration Statement for Proposed Initial Public Offering – Business Wire

    Figure Technology Solutions, Inc. Unveils Exciting Plans for Its Upcoming Initial Public Offering

    UNLV Responds to Workforce Need with Microcredential in Nuclear Technology – University of Nevada, Las Vegas | UNLV

    UNLV Unveils Cutting-Edge Microcredential Program to Fuel Growth in Nuclear Technology

    Trending Tags

    • Nintendo Switch
    • CES 2017
    • Playstation 4 Pro
    • Mark Zuckerberg
No Result
View All Result
  • Home
  • Business
  • Entertainment
    ‘SNL’ Parts Ways With Emil Wakim Amid Rumored Season 51 Cast Shakeup – yahoo.com

    SNL Shakes Up Season 51 Cast with Emil Wakim’s Surprising Exit

    Do you have a favorable or an unfavorable opinion of Taylor Swift? – YouGov

    Do You Love Taylor Swift or Not? Share Your Thoughts!

    Upload Season 4 Review – yahoo.com

    Upload Season 4 Review: A Thrilling New Chapter Unveiled

    ‘The Roses’ review: Olivia Colman, Benedict Cumberbatch sparkle in dark comedy – Yakima Herald-Republic

    The Roses’ Review: Olivia Colman and Benedict Cumberbatch Shine in Dark Comedy Delight

    ‘When Calls the Heart’ Fans All Want the Same Thing After Seeing the Show’s Latest Update – yahoo.com

    When Calls the Heart’ Fans Rally Together in Excitement Over Exciting New Update!

    Quotes of the Week: Peacemaker, Project Runway, Countdown and More – yahoo.com

    This Week’s Most Memorable Quotes from Peacemaker, Project Runway, Countdown, and More!

  • General
  • Health
  • News

    Cracking the Code: Why China’s Economic Challenges Aren’t Shaking Markets, Unlike America’s” – Bloomberg

    Trump’s Narrow Window to Spread the Truth About Harris

    Trump’s Narrow Window to Spread the Truth About Harris

    Israel-Gaza war live updates: Hamas leader Ismail Haniyeh assassinated in Iran, group says

    Israel-Gaza war live updates: Hamas leader Ismail Haniyeh assassinated in Iran, group says

    PAP Boss to Niger Delta Youths, Stay Away from the Protest

    PAP Boss to Niger Delta Youths, Stay Away from the Protest

    Court Restricts Protests In Lagos To Freedom, Peace Park

    Court Restricts Protests In Lagos To Freedom, Peace Park

    Fans React to Jazz Jennings’ Inspiring Weight Loss Journey

    Fans React to Jazz Jennings’ Inspiring Weight Loss Journey

    Trending Tags

    • Trump Inauguration
    • United Stated
    • White House
    • Market Stories
    • Election Results
  • Science
  • Sports
  • Technology
    MC Machinery Technology Summit Showcases Manufacturing Innovations – Modern Machine Shop

    MC Machinery Technology Summit Unveils Cutting-Edge Manufacturing Innovations

    US-ROK Technology Cooperation Faces Rising Tensions – The National Interest

    Rising Tensions Put US-South Korea Technology Partnership to the Test

    The Role of AI and Technology in Shaping the Future of Interactive Entertainment – Technology Org

    How AI and Technology Are Transforming the Future of Interactive Entertainment

    Ten upcoming sports stadiums where technology takes to the field – Dezeen

    10 Futuristic Sports Stadiums Revolutionizing the Game with Cutting-Edge Technology

    Figure Technology Solutions, Inc. Files Registration Statement for Proposed Initial Public Offering – Business Wire

    Figure Technology Solutions, Inc. Unveils Exciting Plans for Its Upcoming Initial Public Offering

    UNLV Responds to Workforce Need with Microcredential in Nuclear Technology – University of Nevada, Las Vegas | UNLV

    UNLV Unveils Cutting-Edge Microcredential Program to Fuel Growth in Nuclear Technology

    Trending Tags

    • Nintendo Switch
    • CES 2017
    • Playstation 4 Pro
    • Mark Zuckerberg
No Result
View All Result
Earth-News
No Result
View All Result
Home News

SPOTLIGHT OP-ED: This court case will literally determine who gets to breathe

October 3, 2023
in News
SPOTLIGHT OP-ED: This court case will literally determine who gets to breathe
Share on FacebookShare on Twitter

In a pivotal case for access to affordable medicines in South Africa, the Treatment Action Campaign (TAC) and Doctors Without Borders (MSF) Southern Africa – represented by SECTION27 – came together earlier in 2023 to help champion access to a lifesaving cystic fibrosis drug known as Trikafta.

Cheri Nel, a South African woman living with cystic fibrosis, and the Cystic Fibrosis Association started legal action against Vertex Pharmaceuticals in 2023, challenging Vertex’s monopoly. The TAC and MSF approached the court to be joined as amici curiae. Vertex, an American pharmaceutical company, holds the patents for both Trikafta and Kalydeco – medicines that have the potential to significantly improve the lives of cystic fibrosis patients. However, at $311,000 per year per patient in the US (about R5.7 million), it is out of reach for many living with cystic fibrosis.

The application is for a compulsory licence, which, if granted, will mean another manufacturer of generics for Trikafta and Kalydeco would be permitted to enter the South African market. In this case, it is likely that competition between manufacturers would affect the price of this medicine, thus making it more accessible. A compulsory licence allows the holder to produce a patented product without the patent holder’s consent. 

Spotlight has reported on the case and that Nel’s lawyers argued that by failing to register or supply their CF medicines in South Africa, make them available in South Africa at reasonable prices, or license other companies to supply the medicines, Vertex is abusing its patents. They further argued that Vertex’s actions are violating the constitutional rights of people with cystic fibrosis in South Africa, including the right to healthcare.

Spotlight has reported on the issue here, here, and here.

cystic fibrosis

Johannesburg-based investment banker Cheri Nel is the driving force behind a court case that may result in dramatically expanded access to life-changing new cystic fibrosis medicines. (Photo: Supplied / Spotlight)

Cystic fibrosis is a devastating multisystem illness known for causing frequent and severe lung infections, antimicrobial-resistant bacteria, liver and pancreatic damage and lung failure, and can result in the potential need for lung transplants even in children as young as two years. 

This case will set an important precedent that can influence access to medicines not only in South Africa but around the world. The involvement of SECTION27, where I work, underscores the broader issue of affordable access to medicines and the impact of intellectual property on healthcare access. 

Read more in Daily Maverick: In-depth – how cystic fibrosis is being treated in South Africa while breakthrough meds remain out of reach

At present, MSF and TAC are awaiting the court’s decision to be admitted as friends of the court, while in the main application, the respondent (Vertex) has filed answering affidavits. 

And while the clock is ticking in the courts, many families in South Africa are waiting and holding on to the glimmer of hope that access to this medicine represents. For many who live with cystic fibrosis, a successful outcome of Nel and the Cystic Fibrosis Association’s application will mean a life where they can breathe easier. 

Among those waiting is six-year-old Janco Koorts.

A journey of hope

His mother, Tanya Koorts, says living with cystic fibrosis is like fighting every day for every breath. She says Janco had been diagnosed with cystic fibrosis at the age of two. She has since been on a mission to raise awareness about this life-threatening disease. Hope, her family and support from the cystic fibrosis community have kept her going, she says.

Reflecting on the start of their journey in the Northern Cape, she says: “The knowledge about cystic fibrosis is very little. We were lucky that Dr Jooste at the Kimberly public hospital diagnosed him so early on. After that, he sent us to the Red Cross Hospital in Cape Town and so our long journey of hope started,” she says.

Later, in a new job in a new city, the family began again in Pretoria. They started Janco’s treatment at Steve Biko Academic Hospital and then moved to the Charlotte Maxeke Johannesburg Academic Hospital.

Cystic Fibrosis

“They don’t have much, but they do everything they can there to help. They also don’t have a lot of support but the people at Charlotte Maxeke helped Janco on his journey to stay breathing,” Koorts says, applauding the public health system.

Janco now has comprehensive medical aid which covers his R48,000 monthly medication bill and Koorts says she can now “breathe easier”. That, however, is just a quarter of the cost of living with cystic fibrosis.

When the Koorts family heard about Trixacar, a generic version of Trikafta, it only strengthened their resolve to save Janco’s life. The patent rights registered by Vertex Pharmaceuticals in South Africa, however, do not allow for the import of the generic drug. Produced by Gador in Argentina, Koorts will have to travel to that country to buy the medicine. This will cost about R400,000 to cover the travel costs and six boxes of Trixacar that will last six months, she says. (You can help the family fund this by donating here.)

‘A thief of joy’

Apart from the financial burden, having a young child with cystic fibrosis has affected the Koorts family mentally and emotionally.

“Cystic fibrosis is a thief of joy. Nobody speaks about fighting to save someone’s life,” says Koorts.

She says her family had to adjust to some of the social changes in their surroundings as well. 

“At school, he has to fight for himself to stay alive. If we go to a restaurant and there are people smoking, it affects him and we have to move. So, as much as we have tried to give Janco a normal childhood, these social aspects will always hinder progress, and he is always reminded that he is sick. But I live in hope and so does he.”

In terms of her family relationships, Tanya says  her other children are healthy and for them to see their baby brother suffering every day hurts them. 

“It’s painful as parents. Janco needs all the attention. I can’t go to a parent’s evening for my other kids. It’s difficult,” Koorts says.

She says she is proud of Janco.

“My child doesn’t know that he is dying. We fight every day so that Janco can have just one more breath.”

And that is ultimately what it is all about. From one perspective the exchange of documents in the high court may seem abstract and full of legal technicalities. But let there be no doubt, for kids like Janco it is literally their futures that are being decided. DM 

Adams is a communications officer at SECTION27.

NOTE: This opinion piece was written by a staff member of SECTION27. Spotlight is published by SECTION27 and the TAC, but is editorially independent – an independence that the editors guard jealously. The views expressed in this piece are not necessarily those of Spotlight.

This article was published by Spotlight – health journalism in the public interest.

Spotlight logo

Gallery

>>> Read full article>>>
Copyright for syndicated content belongs to the linked Source : DailyMaverick – https://www.dailymaverick.co.za/article/2023-10-03-cystic-fibrosis-court-case-will-determine-who-gets-to-breathe/

Tags: newsOp-edSpotlight
Previous Post

A quarter of young Aussies eyeing career changes

Next Post

A FOR [EFF]ORT: In photos – Red Beret protesters feel the heat during long walk to the Ndabeni taxi impound in Cape Town

Hamburg Township baton twirlers capture world championship title in Italy – WXYZ Channel 7

Hamburg Township Baton Twirlers Triumph as World Champions in Italy

August 28, 2025
Diversification helps Minnesota farm navigate ag economy slump – Brownfield Ag News

How Diversification is Powering a Minnesota Farm’s Success During Tough Agricultural Times

August 28, 2025
‘SNL’ Parts Ways With Emil Wakim Amid Rumored Season 51 Cast Shakeup – yahoo.com

SNL Shakes Up Season 51 Cast with Emil Wakim’s Surprising Exit

August 28, 2025
CDC Director Susan Monarez ousted, four other leaders quit health agency – CNBC

Top Health Officials Resign Amid Controversy as CDC Director Susan Monarez Is Ousted

August 28, 2025
Justice Department seeks to dismiss lawsuit filed by Proud Boys over January 6 prosecutions – CNN

Justice Department Seeks to Dismiss Proud Boys’ Lawsuit Challenging January 6 Prosecutions

August 28, 2025
Washington Conservation Corps gears up for another year of service – Washington State Department of Ecology (.gov)

Washington Conservation Corps gears up for another year of service – Washington State Department of Ecology (.gov)

August 27, 2025
The Myths in our Midst: On the Teaching of the History of Science and Religion in K–12 – Public Discourse

Unveiling the Myths: Rethinking How We Teach the History of Science and Religion in K-12

August 27, 2025
Are we finally speaking the public’s language when we talk about science post-pandemic? – The Globe and Mail

Is Science Finally Bridging the Gap with the Public Post-Pandemic?

August 27, 2025
FBI crackdown in Ghana sparks urgent push for lifestyle audit law – The Africa Report.com

FBI crackdown in Ghana sparks urgent push for lifestyle audit law – The Africa Report.com

August 27, 2025
MC Machinery Technology Summit Showcases Manufacturing Innovations – Modern Machine Shop

MC Machinery Technology Summit Unveils Cutting-Edge Manufacturing Innovations

August 27, 2025

Categories

Archives

August 2025
MTWTFSS
 123
45678910
11121314151617
18192021222324
25262728293031
« Jul    
Earth-News.info

The Earth News is an independent English-language daily published Website from all around the World News

Browse by Category

  • Business (20,132)
  • Ecology (793)
  • Economy (813)
  • Entertainment (21,692)
  • General (16,711)
  • Health (9,854)
  • Lifestyle (826)
  • News (22,149)
  • People (813)
  • Politics (821)
  • Science (16,023)
  • Sports (21,312)
  • Technology (15,793)
  • World (795)

Recent News

Hamburg Township baton twirlers capture world championship title in Italy – WXYZ Channel 7

Hamburg Township Baton Twirlers Triumph as World Champions in Italy

August 28, 2025
Diversification helps Minnesota farm navigate ag economy slump – Brownfield Ag News

How Diversification is Powering a Minnesota Farm’s Success During Tough Agricultural Times

August 28, 2025
  • About
  • Advertise
  • Privacy & Policy
  • Contact

© 2023 earth-news.info

No Result
View All Result

© 2023 earth-news.info

No Result
View All Result

© 2023 earth-news.info

Go to mobile version