b'I am a 27 year old campaigner and journalist from IrelandwhohascometotheUnitedStatesafter Something changed in the national discourceAt the beginning of 2010, the building went to receivingascholarshiptostudyCreative that January. Taxi drivers were talking to meconstruction. At the end of 2011 I published Writing MFA at Columbia University. My workabout the lack of care for people with CF ina memoir about the campaign journey andat home focuses on the provision of care forthe country. Women were approaching me inliving with CF in Ireland. In July 2012, the adult people with Cystic Fibrosis (CF) and also onsupermarkets asking what they could do toCystic Fibrosis unit opened at St. Vincents LGBT issues. I began working on improvinghelp. Transition Year students offered to writeHospital.Thereare100ensuitebedsinservices for people with CF when, at 18 yearsto Ministers as part of their workload for thethebuildingthatwasbuiltalsoprovidingof age, I found myself in an orthapedic wardyear. Communities started to pull together allisolation rooms for people dealing with cancer at St. Vincents Hospital in Dubin for care ofacross Ireland for CF and it hasnt stopped.and other illnesses where isolation and privacy my own CF. A daily regime of medication, Families and friends put energy and time intoare needed. Its not perfect, and we did not get aerosolsandpillshelpkeepmeontopof the unit in Dublin but also into improving as many beds as we needed, but 20 inpatient my game. The same month I moved to adultservices around the country. Their hard workbeds and 10 outpatient rooms is a great place servicesThePollackreportwaspublished has seen incredible results.to begin. saying that CF care in Ireland was at a danger- After many false starts, things had begunIcontinuedworkingonhumanrightsous level of neglect. The main issue for peopleto change. In 2008, eight interim en suiteissuesandin2013receivedtheGALAwith CF is cross infection. We are at a highrooms were delivered and work was to beginJournalist / Broadcaster of the Year award for risk of contracting whatever is floating aroundon the Adult CF unit in 2009. That same yearmy work on Transgender healthcare issues in whether its a cold or something else and, I was named Young Person of the Year on Ireland and the CMG Outstanding Contribution unlike the average person, it usually turns intonational television. In 2009 the funding for theaward for my work on getting the new Cys-something like pneumonia very quickly andunit was pulled again. When I heard, I had just ticFibrosisdrugKalydecotoIrelandafter causes an aggressive reaction that leads to lungarrivedhomefromcollegeafterhearingthe National Centre for Pharmacoeconomics damage and possibly death. Therefore properthat my friend, Heather, had died from CF.rejected it due to its high cost. The drug was the isolation facilites are vital. Justtwoweeksearlierourmutualfriend first created that treats the cause and not just Afellowpatientintheorthapedicward Lousie had passed away. Both women were thethe symptoms of Cystic Fibrosis. It has been besidemeonmyfirstadmissiontoSt. first two to join in the battle the year beforeso effective that people have seen phenomenal Vincents Hospital happened to be the motheron live radio, and they were both notoriouslyincreases in health and some have been taken of a journalist who worked for The Irish Times.private individuals. off lung transplant lists. They were dying but I had been constructing a letter to the paperI immediately wrote a piece for The Irishnow they are living again.about the situation after experiencing the hor- Times about what had happened and then IIn 2013, I was lucky to be one of the 1000 ror of an Accident and Emergency deparmentarrived at the TV studio listening to the voicespeople randomly selected to partake in a drug shared with someone who had the superbugof my friends who had fuelled the campaigntrial for the same type of treatment that works MRSA. I ended up writing a piece for the teenthe year before. Nine days later, just after anfor a wide population of people with CF. I section of the paper and the editor then askedappearance on another television show, thehave now been on the real deal for 11 months. to turn it into a main feature because of the then-ministerMaryHarneyreversedthe While the results are not as strong as the first severity of the situation. That was in 2005.decision to pull the funding and found anotherdrugit will take a few more years for thisSince then I have worked writing pieces,mechanism to provide for it. This new commit- combination drug to get to that levelI have been doing interviews, meeting with Ministers forment was made possible because of the hardbetter than usual. Its been eleven monthsHealth, policy makers and other advocates.work and support of the public and the mediaof fewer infections, no lung collapses and lessIt became my mission in life to see a proper,who were relentless in their conviction thataggressive lung bleeds. While I usually worked functioning 34-bed en suite adult unit openedsomething must change for people with CF andthrough those things, it had begun to take its atthenationalreferralcentreforCystic their families in the country with the highesttoll on me. Now I have been invigorated with FibrosisinDublin.Inearly2008Iwroteoccurrence of the illness in the world.a new energy. That energy allowed me the apieceforTheIrishTimesthatgarneredgusto to apply to Columbia and I was thrilled toattention from local media. For the first timeLaterthatyearIwasnamedbeacceptedandofferedthescholarship.many other people with CF felt comfortableWomanoftheYearbyIrishHoweverthisincrediblenewadventure sharing their stories and speaking out throughTatlermagazinewhichservedwould not be possible without the support of the medium of radio. For the first time I noto highlight the campiagn andThe American Ireland Fund for which I amlonger felt alone in the battle. There was sup- wasawonderfullypositiveeternally grateful.port and it was plenty. indicationofthesupport and good will out there towards Cystic Fibrosis.connect2015 | 45'