Jenna Lowe Trust's legacy continues with Pulmonary Hypertension Association of South Africa

The Jenna Lowe Trust has officially handed over its work to the Pulmonary Hypertension Association of South Africa (PHA SA), marking a new chapter in advocacy and care for patients with pulmonary hypertension (PH).

“The time has now come for the work of the organisation to evolve under the leadership of PHA SA, which is a natural home for the Trust’s programmes,” said Gabi Lowe, Jenna’s mother and co-founder of the Trust.

Looking back, Ms Lowe believes her daughter would be proud of what the Trust has achieved.

“I know with all my heart that Jen would be proud of what we have achieved so far and that she would not have stopped advocating for better access to care for all patients. She would have continued to lobby for increased organ donation awareness and rates,” she said.

Jenna’s story began in 2014, when she was just 17. Critically ill with PH, a rare and debilitating lung disease that is often misdiagnosed, she launched the #GetMeTo21 campaign.

Through her campaign, Jenna captured hearts and minds in South Africa and abroad, raising awareness for both organ donation and PH. She died in 2015, just shy of her 21st birthday.

“Her courage, bravery and advocacy in the middle of facing her own mortality at such a young age are what people should remember most,” said Ms Lowe.

Over the past decade, the Trust has achieved several milestones.

It established and grew the Jenna Lowe PH Clinic at Groote Schuur Hospital, providing patients with care and essential breathing and mobility equipment. Pulmonary hypertension has gained recognition from some South African medical aids, improving access to treatment.

The Trust also gave South African patients a voice internationally through the Patient Empowerment Programme with the Pulmonary Vascular Research Institute.

In 2023, it hosted the first South African PH Patients Perspective Symposium, bringing patients, caregivers, and medical experts together. Awareness of PH has grown significantly, boosted by the ongoing reach of the award-winning documentary Get Me To 21 – The Jenna Lowe Story, which continues to air across Africa.

Reflecting on the journey, Ms Lowe said, “Successfully running an NPO with little or no help, whilst working full time, grieving Jenna, and supporting my husband Stuart through his own cancer battle, has been emotionally tough yet deeply rewarding. Had we had the resources, there is so much more we could have taken on — which is exactly why it feels like the ideal time to pass the baton on to PHA SA.”

Nurse Hilary Barlow, who coordinates the Jenna Lowe PH Clinic, welcomed the transition.

“It is wonderful that PHA SA is absorbing the Jenna Lowe Trust Liaison Nurse role. Patients continue to have a go-to person when needed, and more PH patients are being diagnosed and referred for appropriate treatment sooner. This was Jenna and Gabi’s wish,” she said.

Callista Greeff, chairperson of PHA SA and a mother of a child with PH, explained that the association was founded in 2010 by patients seeking support and awareness.

“PHA SA and the Jenna Lowe Trust have collaborated for years, and it is an honour to receive the baton of their great work. There has been a great shift in PH awareness, patient care, and advocacy over the last decade, and this strengthens our mandate and voice to ensure our patients are heard,” she said.

Ms Greeff highlighted the ongoing challenges PH patients face. Early diagnosis is critical, yet many patients wait years due to misdiagnosis or lack of awareness, often being labelled with asthma or other lung conditions, she said. 

Access to quality, accurate, and affordable treatment also remains a struggle, with delays costing lives.

“As a mother of a 12-year-old PH patient, I am thankful for early diagnosis. It has made a huge difference in my son’s care,” she added.

For her, Jenna’s story is a reminder of the power of determination.

“The enduring legacy of Jenna Lowe has been a game-changer for PH in South Africa and globally. Boundaries of care shifted because one family rallied behind their child and fought for the best care.

"We are proud to continue building on the Jenna Lowe Trust legacy, challenging the status quo, and advocating for social justice for PH patients. Together, we can go further.”

PHA SA has ambitious plans for the future. The Groote Schuur clinic model is set to expand to other provinces, while educational programmes for doctors, specialists, and nurses are being developed to improve early diagnosis and treatment.

The Lowe family’s advocacy has also garnered international recognition.

Professor Luke Howard, Consultant Pulmonologist at the National Pulmonary Hypertension Service in London, praised Ms Lowe’s work:

“She has put pulmonary hypertension on the map in South Africa, and her contributions have been felt globally.”

For more information about PH or to support the Pulmonary Hypertension Association of South Africa, visit www.phsa.org.za.