Spotlight
Multimedia The Power of Two Published Online June 21, 2013 http://dx.doi.org/10.1016/ S2213-2600(13)70076-6 See News page 363 For more on The Power of Two campaign see http://www. thepoweroftwomovie.com/ digital/ For more on ivacaftor see N Engl J Med 2011; 365: 1663–72. DOI:10.1056/NEJMoa1105185 For the memoirs see The Power of Two: A Twin Triumph Over Cystic Fibrosis. Colombia, MI: University of Missouri Press, 2007 For more on the story of Sarah Murnaghan see http://www.bbc. co.uk/news/world-uscanada-22882614
Twin Triumph Productions
For more on the Jo-Anne Dobson’s ‘opt-out’ public consultation see http://www. bbc.co.uk/news/uk-northernireland-22757477
The Power of Two, a powerful documentary directed by Marc Smolowitz, is central to a multimedia outreach and community engagement campaign to raise awareness of cystic fibrosis and stress the importance of organ donation. The documentary’s theme coincides with the UK Cystic Fibrosis Trust’s national awareness week (starting June 24). The focus of the awareness week is on transplantation and the documentary’s website urges people to register as organ donors. Although development of ivacaftor has been an incredible medical advance for the 4% of patients with cystic fibrosis who have the Gly551Asp mutation, many patients rely on lung transplantation as their only hope of survival. The documentary follows the journey of two identical twins, Anabel Stenzel and Isabel Stenzel Byrnes, who were diagnosed with cystic fibrosis at birth. The Power of Two begins with the sisters recalling their childhood memories of when they “felt normal” while attending a camp for children with cystic fibrosis. The camp provided everyday activities such as games, swimming, and hiking mixed with humour about cystic fibrosis. The disease’s presence was not forgotten as on the last night of camp, previous campers who had died during the year were remembered. The girls’ frequent hospital visits became longer and more regular in their teenage years. Writing provided an outlet for the thoughts, emotions, and experiences they encountered in hospital and they sold their first booklet, Life at Kaiser, at the hospital to raise funds for cystic fibrosis. The memoirs of Anabel and Isabel, The Power of Two: A Twin Triumph Over Cystic Fibrosis, published in 2007 in English and later in Japanese, were the inspiration for this documentary. The Stenzel sisters’ health began to seriously deteriorate in their twenties. The twins shared the hope that being placed on the transplantation list gave them in the difficult advanced stages of their illness. Both sisters eventually received lung transplants, which not only transformed their health but also ignited a new lease of life.
At this point in the sisters’ story, the film develops into an uplifting celebration of life as Anabel and Isabel “become alive again”, participating in hiking, swimming, and completing a half marathon. The twins always honour their donors by blowing bubbles at each’s “special place” because “you can see [the] gift in the bubble”—a breath of life from their donated lungs. The beautiful symbolic message that “life comes out of breath” is reiterated throughout the film and enhanced by moving stories of other recipients of lung transplant. The sisters’ life-saving gift prompted a “sense of obligation to give back”. Smolowitz’s documentary follows the twin sisters in their role as advocates campaigning for organ donation and raising awareness of cystic fibrosis in the USA and Japan, their mother’s native country. The twins’ Japanese heritage inspired them to promote and encourage organ donation in Japan, which has the lowest rates of organ donation in the industrialised world. The stark contrast of cultural attitudes towards organ donation between America and Japan is clearly depicted. Shots on the streets of Japan show family and friends of those needing a transplant asking strangers for money to fund the operation. Figures quoted from 2009 contrast the 193 organ transplantation operations in Japan, with the 28 500 that occurred in the USA. Since 2009, changes in Japanese laws in favour of transplantation have caused a small increase in organ donations. Changes to organ donation laws continue worldwide. Debate continues over cases such as that of Sarah Murnaghan, a 10-year-old girl with cystic fibrosis who was placed on the Organ Procurement and Transplantation Network for an adult lung transplant after a US district judge ruling. Currently, only children older than 11 years are allowed to receive adult lung transplants in the USA. The intervention of a judge in this case has caused controversy. The Northern Irish politician Jo-Anne Dobson is promoting changes to the organ donation law to increase the number of organs available by presuming consent unless people opt out. A public consultation launched recently will continue until September, 2013. The Power of Two is an inspiring and emotional rollercoaster and the stories of donor families and transplant recipients drive home the significance of organ transplantations, which transform the health and lives of patients with cystic fibrosis. The limitation of available organs also affects people with other critical health issues, so raising the profile of organ transplantation will hopefully help not just those with cystic fibrosis.
Francesca Towey 368
www.thelancet.com/respiratory Vol 1 July 2013
Multimedia The Power of Two Published Online June 21, 2013 http://dx.doi.org/10.1016/ S2213-2600(13)70076-6 See News page 363 For more on The Power of Two campaign see http://www. thepoweroftwomovie.com/ digital/ For more on ivacaftor see N Engl J Med 2011; 365: 1663–72. DOI:10.1056/NEJMoa1105185 For the memoirs see The Power of Two: A Twin Triumph Over Cystic Fibrosis. Colombia, MI: University of Missouri Press, 2007 For more on the story of Sarah Murnaghan see http://www.bbc. co.uk/news/world-uscanada-22882614
Twin Triumph Productions
For more on the Jo-Anne Dobson’s ‘opt-out’ public consultation see http://www. bbc.co.uk/news/uk-northernireland-22757477
The Power of Two, a powerful documentary directed by Marc Smolowitz, is central to a multimedia outreach and community engagement campaign to raise awareness of cystic fibrosis and stress the importance of organ donation. The documentary’s theme coincides with the UK Cystic Fibrosis Trust’s national awareness week (starting June 24). The focus of the awareness week is on transplantation and the documentary’s website urges people to register as organ donors. Although development of ivacaftor has been an incredible medical advance for the 4% of patients with cystic fibrosis who have the Gly551Asp mutation, many patients rely on lung transplantation as their only hope of survival. The documentary follows the journey of two identical twins, Anabel Stenzel and Isabel Stenzel Byrnes, who were diagnosed with cystic fibrosis at birth. The Power of Two begins with the sisters recalling their childhood memories of when they “felt normal” while attending a camp for children with cystic fibrosis. The camp provided everyday activities such as games, swimming, and hiking mixed with humour about cystic fibrosis. The disease’s presence was not forgotten as on the last night of camp, previous campers who had died during the year were remembered. The girls’ frequent hospital visits became longer and more regular in their teenage years. Writing provided an outlet for the thoughts, emotions, and experiences they encountered in hospital and they sold their first booklet, Life at Kaiser, at the hospital to raise funds for cystic fibrosis. The memoirs of Anabel and Isabel, The Power of Two: A Twin Triumph Over Cystic Fibrosis, published in 2007 in English and later in Japanese, were the inspiration for this documentary. The Stenzel sisters’ health began to seriously deteriorate in their twenties. The twins shared the hope that being placed on the transplantation list gave them in the difficult advanced stages of their illness. Both sisters eventually received lung transplants, which not only transformed their health but also ignited a new lease of life.
At this point in the sisters’ story, the film develops into an uplifting celebration of life as Anabel and Isabel “become alive again”, participating in hiking, swimming, and completing a half marathon. The twins always honour their donors by blowing bubbles at each’s “special place” because “you can see [the] gift in the bubble”—a breath of life from their donated lungs. The beautiful symbolic message that “life comes out of breath” is reiterated throughout the film and enhanced by moving stories of other recipients of lung transplant. The sisters’ life-saving gift prompted a “sense of obligation to give back”. Smolowitz’s documentary follows the twin sisters in their role as advocates campaigning for organ donation and raising awareness of cystic fibrosis in the USA and Japan, their mother’s native country. The twins’ Japanese heritage inspired them to promote and encourage organ donation in Japan, which has the lowest rates of organ donation in the industrialised world. The stark contrast of cultural attitudes towards organ donation between America and Japan is clearly depicted. Shots on the streets of Japan show family and friends of those needing a transplant asking strangers for money to fund the operation. Figures quoted from 2009 contrast the 193 organ transplantation operations in Japan, with the 28 500 that occurred in the USA. Since 2009, changes in Japanese laws in favour of transplantation have caused a small increase in organ donations. Changes to organ donation laws continue worldwide. Debate continues over cases such as that of Sarah Murnaghan, a 10-year-old girl with cystic fibrosis who was placed on the Organ Procurement and Transplantation Network for an adult lung transplant after a US district judge ruling. Currently, only children older than 11 years are allowed to receive adult lung transplants in the USA. The intervention of a judge in this case has caused controversy. The Northern Irish politician Jo-Anne Dobson is promoting changes to the organ donation law to increase the number of organs available by presuming consent unless people opt out. A public consultation launched recently will continue until September, 2013. The Power of Two is an inspiring and emotional rollercoaster and the stories of donor families and transplant recipients drive home the significance of organ transplantations, which transform the health and lives of patients with cystic fibrosis. The limitation of available organs also affects people with other critical health issues, so raising the profile of organ transplantation will hopefully help not just those with cystic fibrosis.
Francesca Towey 368
www.thelancet.com/respiratory Vol 1 July 2013
