Revs' Aaroha

A regular work day has me meeting at least a few dozen people – sick ones, tired ones, stressed ones, addicted ones, happy ones, fun ones. There’s mostly a good mix. I’d remember most of them I meet in a day, thanks to the elephantine memory of mine. The kind of people I meet over the course of a day invariably has an impact on my day and my mood too. So more often than not, it’s hard work letting the stresses of dealing with sick people go and separate myself from the work mode. It’s especially hard when I’m dealing with sick kids or when someone I’ve known for a while gets a bad diagnosis or worse, dies. The lows apart, there are all the happy parts too – when people get better after an illness, when they come and share big and small parts of their life with you, when they trust you enough to open up about something – it’s touching, extremely humbling and these things make up for all the other kind of stresses. And something about working in healthcare, seeing people’s lives change in a minute – maybe due to a diagnosis or the annual budget or the patent changes in a drug – makes me see life in a totally different way. Seeing the way people deal with these big changes and how they move forward in life gives an amazing perspective about life and its many phases. AC* is one such person who has taught me one of the most significant lessons in my life, so far.

I met AC two years ago when she had just moved towns and wanted to register with our Pharmacy. She’s a beautiful woman with a gorgeous smile and amazingly expressive eyes. I was busy staring at this lovely woman and watching her talk, that I failed to notice that she had an amputation of one of her hands, wrist down. While going through her medical history, she told me how she’d lost it in an accident many years ago – she said it all in a very matter of fact way, without a tinge of pain or regret. She even added that she was glad that it was only a small part of one hand and how she still carries on with life with ease. She drove an automatic, she had trained both her hands to hold objects with care, she ran marathons, she reared her kids and had a perfectly normal life that most times she just pretended that one of her hands was smaller than the other. I met her over the course of the last two years, a couple of times every month and there was always this cheerful smile, always a concerned inquiry about my working hours, a joke or two shared and a lot of laughter. Let’s just say I was already a huge fan of this perfect ray of sunshine in my life.

Sometime last year, she started falling sick too often. Unusual, unexplained symptoms and each bout worse than the previous one. A series of tests and multiple hospital visits later, she was diagnosed with Multiple Sclerosis. A disease that doesn’t really have a cure, so treatment only involves trying to maintain a decent quality of life although the life expectancy is pretty much as good as any healthy individual. The symptoms and disease progression though could deteriorate normal life to a large extent and this varies with each patient. So the best treatment option was to figure out a drug, by trial and error mostly, that will give her the best quality of life possible with minimum deterioration. And that’s what the doctors started to do. She was put on one drug after the other to do a risk vs. benefits analysis and she took it all in her stride and I continued to see her – sometimes tired, sometimes downright exhausted, but always with that genuine smile plastered on  her face.

After a year of drug trials, she was put on one drug that worked like magic for her. Every single symptom she had was sorted and everyone heaved a sigh of relief, at least for a minute. The drug came with a catch. It wasn’t covered by any of the medical schemes prevalent in the country, which meant she had to pay for it from her own pocket and that was easily on the higher end of a 3-figure every month. When we said it to her, I could see she was shocked to hear the price for maybe a microsecond before she shrugged and told me ‘On the bright side, at least I was lucky enough to find a drug that actually works for me. There are so many others out there that do not have that one drug that would work for them and have spent decades or even died waiting for that drug. So paying this much money every month isn’t the worse thing that can happen in this case. We’ll just do some budget cuts as a family, we should be good’. While she took this on bravely, it killed a part of me the first time I put through the drug for her and saw what the price came up to after adding the mark-up and the dispensing fee and what not, that I spoke to the boss who readily agreed with me that we’d just let her have the drug at the cost price and not a penny more. While this did save her a few hundred euros, it still was a huge sum to be paying every month.

This went on for 3 months – she’d come every month to collect her drug, pay the insane amount, never once did she crib about it. She only spoke about how great she was feeling, how thankful she was that this worked and how she hopes many more people benefited from these drugs like she did. To say I was dumbstruck is an understatement. Early 2016, some scheme changes happened thanks to the last budget session and although this drug didn’t come under cover explicitly, there was a slight chance that we could get it covered on a patient-specific basis if we can get a truckload of paperwork done – from the consultant’s side, from the pharmacist’s side and from the patient’s side. That little hope got me working like a women possessed. My amazing Boss just saw the look on my face and silently got extra cover for regular, everyday work in the pharmacy and let me work exclusively on this until I got it done.

Three weeks of filling out forms after forms, chasing secretaries of a few different Consultants from a few different hospitals, eating the ears out of various people in the Health Board, researching every possible way to get everything accurate, hours spent being put on hold on the phone while they transferred me from one department to the other, multiple red tapes to jump through, a few setbacks, many angels who came forward and went out of their way to see this through. And one amazing result. She is not only going to be covered for this drug going forward, but the Health Board will actually refund every penny she’s paid for this drug ever since she was started on it. You’d think this result was my high point in this story? No

While we didn’t want to give AC any false hopes until we were at least a little bit sure about the process, we had to let her know what we were going to do anyway because she had to sign a lot of papers for us. So while she was fairly tuned in to the initial process, she let us be for the next couple of weeks and just told us that she trusted us to do what had to be done and kept reminding us to rest and not to take too much work for her sake. So when I rang her to tell her about the outcome, you’d think the woman would have felt ecstatic about all the money she could save now and how much easier that would make her life. No. The exact words that came out of her mouth – “That’s great. I’m so happy that it worked out well after all the hard work you all put into it. Honestly, you all worked so much for this when you had other things to do. I can’t tell you how privileged I feel that all of you showed me so much kindness when my life has been amazing and gifted already”. Dumbstruck. Again.

While I would consider myself as a fairly positive person who makes every effort to see the bigger picture before letting things bog me down, there are some days, if you let me be at my dramatic best, I can crib about things that can all be suffixed with #FirstWorldProblems. Considering that, here I had a woman telling me she felt “privileged” and “gifted” amidst all her physical misfortunes and illness while she was paying half of what she was earning every month to keep  her stable, while she had a mortgage, kids and everyday life to worry about.

The evening after this happened, I remember having a chat with someone and telling them that I was on a non-substance induced high from work and told them how content I was with everything in my life. I guess that’s what people like AC do to you. I am a firm believer that some people, books and movies *happen* to you. They come in to your life at the right time, just when you have to meet them/read them/watch them and touch your lives in such a way that it will never be the same again. AC, you are one such person in my life. I am glad I met you, I am glad I got to be part of one small happy memory in your life.  From a very touched place, I wish you all the good health, plenty of nice happenings every day that keeps bringing out that amazing positive person in you, may you find many reasons everyday to sprout that gorgeous smile of yours, may life only give you pleasant, happy times and may you continue to inspire and touch many lives like you did with mine. Thank you for being a significant person in my life who taught me a very special lesson!