Jenna’s story: Every breath counts

Rhodes>Perspective>2014 Archive

Jenna Lowe is one of 4,300 South Africans awaiting an organ transplant (excluding those who are unaware that they are experiencing end stage organ failure, or realise too late). South Africa has one of the lowest organ donor rates in the world. Lack of awareness remains a formidable barrier, and all the more daunting in the light of structural deficiencies. However, Lowe’s ‘Get Me to 21’ campaign has shown what can be achieved when social media is harnessed to close the gap between those affected and those who can help.


We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish and with some measure of triumph. - Elie Wiesel


A feeling of breathlessness. That’s how it started. When she was 17, Jenna Lowe was diagnosed with pulmonary arterial hypertension (PAH): a rare condition involving the narrowing of the arteries to the lungs. Potentially fatal, PAH can be treated if it is caught early enough. Unfortunately, in Jenna’s case it was not.


“They thought at first it was asthma, so I was on the wrong treatment for a long time,” Jenna explains. “For asthma, you’re encouraged to exercise, so I was exercising a lot. By the time I was correctly diagnosed, I had done irreparable damage to my lungs.


“My whole life has changed. Not a single thing is the same.”


Two years after she was diagnosed, Jenna can no longer breathe on her own: she will need a new set of lungs if she is to make it to her 21st birthday. Enter ‘Get me to 21’. Maximising its reach through YouTube, Facebook and Twitter, as well as its own website, the campaign invites you to confirm your attendance at Jenna’s birthday party by contributing to the ultimate gift and becoming a donor. Centered on what promises to be an epic party, the campaign is the right balance of fun and seriousness, reflecting both Jenna’s youthfulness and the necessity of finding her a new set of lungs, fast.


Jenna is one of 4,300 adults and children on the waiting list for organ or cornea transplants in South Africa. The greatest demand is for kidneys– which can also be donated by live donors. It perhaps doesn’t sound like that many. (There are probably many others who are not on the list). However, with just 0.2% of South Africans registered as organ donors, the Organ Donor Foundation (ODF) estimates that only 600 of those awaiting transplants will receive them. The rate of actual donations that take in South Africa is one of the lowest in the world at only two per one million inhabitants. By comparison, Spain, which has the highest rate in the world, has a rate of 35 effective donors per one million.


In South Africa, donation takes place on an opt-in basis, which requires express permission from family members of a potential donor at the time of death in order for donation to take place, regardless of whether the person was registered as an organ donor. Thus, awareness is key to ensuring that, firstly, individuals make an active and informed choice about organ donation, and, secondly, that family members know the donor preferences of their loved ones in case they ever need to make that call.


“[To be a donor or not] is a completely personal choice, which I respect,” Jenna says. “But it’s something South Africans need to be talking about. The campaign is about getting a conversation going.”


In just one week, Jenna’s campaign has gone viral, moving 4,407 South Africans to add their names to the donor list. That is about 4% of the total number of organ donors in the country. The unexpected response indicates both the power of social media to reach people in this increasingly digital age (in May 2014, nearly 1 in 3 South Africans owned a smartphone), and a latent willingness among South Africans to become donors. At the heart of the ‘Get me to 21’ campaign, Jenna is warm, open and intelligent and, at 19 years old, very much her own person.


“You know, a lot of people think you change when faced with something like this,” the teenager muses. “But I’m still the same person… It was more like going more into the self I was already,” she laughs. “If that makes any sense.”


If, in Elie Wiesel’s words, the people awaiting transplants are ‘abstractions’ in the minds of many, then Jenna has provided the sense of the real personalities, the individual universes, behind the problem.


“People don’t like to think about their mortality, “ Jenna suggests. “They don’t think it’s necessary [to sign up] because they think they still have 10, 20, 50 years to live.”


A 2012 University of Cape Town study found that 92% of medical students were not organ donors. The primary reason was, “I have not really thought about organ donation.” (That statistic may look different now; until she became too ill to study, Jenna was also a UCT student.) A broader, 2014 study investigating donor preferences among urban South Africans found that, when asked directly, the majority of the 1,048 participants (between 70% and 91% across groups) said they would be willing to be organ donors. The primary reason for unwillingness was that the removal of organs went against cultural beliefs. This is likely to be a bigger barrier in more traditional, rural settings; nonetheless these results indicate that increased awareness and education could see a massive jump in the numbers of registered donors.


Jenna’s family-run campaign has shown how quickly this jump can be made.


Another example of the flash effect that social media can have is the huge spike in organ donor registrations following Facebook’s 2012 introduction of a function allowing the display of organ donor status on timelines. On the first day of the initiative, 13,054 people registered, representing a 21.1-fold increase from the baseline per-day average. In South Africa, the ODF is harnessing Facebook to increase awareness among South African youth: its 27,097 likes are primarily from the 25-34 year old age group, and most activity comes from Gauteng. Social media usage may be on the rise nationally, but the ODF and other campaigns will likely still need to rely on outreach programs to spread awareness beyond urbanised youth.


Another group to specifically target are men, ODF statistics suggest. According to Jooste Vermeulen, Director of Communications at the ODF, about 2/3 of South African donors are female; interestingly, Jenna’s mother, Gabi, has noted a similar gender discrepancy reflected in the response to ‘Get me to 21’, with 3,129 female and 1,329 male donors.


Another hurdle in the race to reduce the organ donation shortage is limited infrastructure. Although the rate of registration is on the rise, this is not being matched by a similar increase in transplants. In 2013, only 556 transplants were performed, down from 573 in 2012. Aside from the fact that there are only 18 clinics (private and public) that perform transplants across the country, South Africa also suffers a shortage of transplant coordinators: trained emergency care nurses qualified to approach family members for donor consent.


“In South Africa, we have about 20 project coordinators across the country. In Spain, they have 480 people doing this job,” Vermeulen says. However, he emphasises that the challenges, although multifaceted, are not impossible to overcome.


The first step is encouraging more people to become activists and to seriously consider the question of becoming an organ donor.


“Transplantation is just as big a problem [as other ‘healthcare challenges’], and much easier to address,” Vermeulen argues. “It costs nothing to become a donor. This is a problem we can fix… We just have to say ‘yes’.”


Jenna’s ‘Get me to 21’ campaign has already shown the vast impact that one person can make. All across South Africa, people are rooting for Jenna to receive a new set of lungs. Through her campaign, Jenna may well have already have saved a life – perhaps many lives.


She does not know if she will make it to her 21st birthday party.


But, Jenna says of ‘Get me to 21’, “If even one person is saved because of a transplant that wouldn't previously have happened… it's worth it.” DM


Article by: Andrea Teagle.

Article Source: The Daily Maverick.