질병은 누구에게나 언제든 찾아올 수 있는 삶의 한 부분이다. 필자는 지금까지 생명과 건강을 다루는 제약업계에서 25년 가까이 일하면서 저마다 다양한 환자들의 사연을 들을 수 있었고,때론 감동을 받기도 했다. 힘겹게 투병하며 죽음보다 무서운 고통 속에서 절망하는 환자와 그 가족들의 간절한 소망은 동 · 서양을 막론하고 똑같다. 하루빨리 완치되고 건강을 회복해 가족들과 좀 더 오래，행복하게 사는 것이 소박하고 간절한 바람이다.

한국에 부임한 지 얼마 되지 않았던 지난해 여름에 만났던 한 환자도 그 중 하나다. 황반변성이란 질환으로 바로 눈앞의 사물조차 구분하기 힘들었던 그는 20여년 전，갑자기 찾아온 질병으로 암흑 속에서 절망했었다고 회상했다. 바로 눈앞에 있는 아는 사람의 얼굴조차 분간하지 못해 본의 아니게 무례한 사람으로 오해 받는 경우가 다반사였다. 지하철 같은 대중교통을 이용할 때면 안내방송에 의지해 하차역을 확인하는데,소음 때문에 내릴 역을 놓쳐 난감한 경우 등 일상생활에서 많은 불편을 겪어야 했다.

건강한 사람은 경험하기 힘든 그의 이야기에 빠져들다 보니 좌절감이 온몸으로 느껴졌다. 그는 다행히 새로운 황반변성 치료제로 치료를 받은 후 시력도 개선되었고，희망의 빛처럼 삶의 희망과 활력도 되찾았노라며 웃음지었다. 그는 그날 실명 이후를 대비하기 위해 미리 준비해 두었던 시각장애인용 지팡이가 더 이상 필요없게 됐다며 내게 감사의 의미로 전달했다. 그의 두 눈을 대신할 뻔했던 지팡이를 받아든 순간，벅찬 감동에 말을 잇기 힘들었다.

그 외에도 만성 골수성 백혈병 환자 부부가 아이 갖는 계획을 포기했다가 치료제를 받으면서 2세를 건강하게 출산한 이야기，숨 쉴 수 없을 정도의 고통을 겪느니 차라리 죽는 것이 낫겠다며 자살을 고민하던 중증 천식 환자가 새로운 치료제로 개선효과를 보고 새 삶을 꿈꾸게 된 사연 등 어떤 영화나 드라마보다도 진하게 눈물 어리는 희망 이야기들이 들려오고 있다. 이런 이야기들은 환자의 필요를 이해하고 더 새롭고 더 나은 신약을 개발하려는 노력이 끊임없이 이어지는 한 계속될 것이다.

필자와 같이 의약계에서 일하는 사람들에게는 병마와 싸우고 있는 환자와 그 가족들에게 진정 필요한 것이 무엇인지 알려는 노력이 중요하다. 그래서 필자도 늘 환자의 입장이 되어 생각해보려 한다. 상대방의 입장이 돼보고 그의 이야기를 경청하는 것은 아무리 강조해도 지나치지 않다.

그런 노력이 있을 때 진심으로 상대방을 이해할 수 있고,모든 관계에서 원활한 소통이 가능할 수 있기 때문이다. 혹시 두 귀를 막고 입으로만 소통하고 있지는 않은지.그렇다면 오늘은 한 번쯤 상대방의 입장에서 나를 돌아보는 시간을 가져보면 어떨까.

[영문 원고]


Patient-centric mindset
Peter Jager，President of Novartis Korea < peter.jager@novartis.com >

Illness is part of our lives． Illness affects everyone at some point in time． While I have been in the pharmaceutical industry for close to 25 years， I have had many chances to meet patients with a variety of diseases and have been inspired by their stories of hope and courage． Before I came to Korea， I had such experiences while I was working in Europe and Asian countries． Earnest wishes of patients and their families who are dropped into despair by a painstaking battle against diseases and sometimes by pains harsher than death are of no difference between the East and the West． Their wishes are to live as healthy persons， with hope for a longer and better life， sharing happy times with their family． A big insight I gained is that practically all patients I spoke with ask for better and more specific treatments that cure their diseases rather than reduce the symptoms．

Since I came to Korea I have also had touching experiences with Korean patients． During last summer， a patient with ‘wet AMD’ (age-related macular degeneration)， who almost lost his vision， visited my office． He told me that he was diagnosed with ‘wet AMD’ in one eye about 20 years ago but gradually， the disease began to affect in the other eye as well． The sudden loss of vision brought darkness to his life．

He passed his friends on the street without greeting because he could not notice them． When he used public transportation like bus and subways he often missed the stop he should have taken off because he had difficulties to observe the signs and on top of that， could not hear voice announcements due to noise from other passengers’ cell phone talks． Struggling with constant frustration in everyday life， with growing fear of becoming totally blind， he discovered a way to regain some vitality by playing golf， using his mind’s eye to play the game．

Golf is the only sport that can be played by visually-handicapped people without difficulty． The event that really made all the change was the successful treatment with a new breakthrough medicine， specifically developed for wet AMD； Lucentis． This high-tech and highly targeted medicine needs to be injected in the eye on a monthly basis for several months， and less frequent thereafter． After having received Lucentis treatment for 3 months， his vision had significantly improved and he regained hope to recover an important part of his lost vision， literally like a ‘ray of hope’． I was deeply touched when he spontaneously handed me his silver colored cane as a token of appreciation to the developer of the drug that had given him his regained hope．

He had bought the cane months earlier in the anticipation that he would need it in the near future． ‘It’s for you， he said； I don’t need it anymore’． I was speechless for a while and realized that his act was more than just a symbolic one： it was telling me a life story．

Another inspiring moment came when I heard of a patient who was diagnosed Chronic Myeloid Leukemia (CML)： he and his wife had given up plans to having a baby as a result of the disease， in full awareness that the disease had such a poor prognosis， with a low chance of survival． The patient was successfully treated with Glivec， a medicine introduced in 2003． Now， in 2009， the couple is extremely happy， being the proud parents of 2 healthy children， the first one now 3 years old and the second one just 6 months． Another compelling example of restored life and regained hope is a patient suffering from severe asthma： this patient had considered suicide due to the shortness of breath and the constant pain and fear of suffocating； this patient can now dream of a new life after receiving treatment with a new asthma drug． I am sure that we can continue to hear touching patient stories of hope as long as the healthcare industry put its continued efforts to bring new and better medicines to patients．

In recent years innovative drug therapy has made significant contributions to offering better and longer lives to people． According to data regarding drop in death rates for diseases treated with drugs (1965-1999)， the early infancy death and hypertensive heart disease was reduced by 80% and 67%， respectively． Furthermore， about 65% of adults with cancer can survive more than 5 years according to data from National Cancer Institute (2004)， and in children there was a 49% drop in cancer mortality within the last 25 years．

At Novartis， we are try to make a difference in changing the way we operate based on insights from patients ？ patient centricity． Patient centricity means truly understanding the patients’ experience with their diseases and how we can be responsive to their questions or needs．

In human relations， it is important to think and view in the others’ position． It is also critical for the healthcare industry to understand needs and challenges of patients who are struggling with diseases in daily life and for whom hope has faded． This global research based industry is exerting its efforts to bring new and better medicines to patients in the fastest possible time and to enable better patient outcomes． This is what drives true innovation and this is what motivates me to do what I’m doing every day since almost 25 years now．