Medicine

medicine

Medicine (noun)
a compound or preparation used for the treatment or prevention of disease, especially a drug or drugs taken by mouth

As Grace Slick said so many years ago, “one pill makes you larger, and one pill makes you small…”

As we are all aware, medicines to treat multiple sclerosis are not cheap, nor are they affordable. But many of us, myself included, will agree that they are part of what keeps us moving, literally. Admittedly many of us pay little or nothing out of pocket owing to patient assistance programs, but those programs wouldn’t be needed if the cost wasn’t astronomical out of the gate. And to clarify, I am not talking about new medicines, although that’s helping to drive the problem, I’m talking about medicines that have been on the market for many years, like Avonex.

When I started on treatment in June, 2009, Avonex retailed at $26k per year. Fast forward to 2019, and take a guess, no really, take a guess what a drug approved in 2002 costs, give up? On average, about $87k per year, give or take, so a $60k increase in just 10 years. And each time I receive the insert for my quarterly supply, it goes up, and up, and up, and up. I used to feel bad about having to take a medicine that was so expensive, but considering my contributions to society, and the taxes I pay, it means I continue to contribute to the cost of developing medicines. So round and round we go.

While it’s true that the list price is rarely paid by anyone, having that be the ceiling means that people also pay more out of pocket (co-pay) when all is said and done. And people on Medicare and Medicaid are unable to participate in the patient assistance programs, thanks to president 43. Nor are government agencies able to negotiate the cost of medicines, like every other developed country, which means the United States is subsidizing the cost of research and development for the rest of the world.

Patents also factor into the costs of meds, but explaining that, would quite literally, do your head in. And most recently the skyrocketing cost of insulin and epipens, which leads to rationing (and do you take your insulin or eat?), and subsequently people being sicker, which in turn impacts the cost of their healthcare (and everyone’s).

For this post I will only be looking at people who have insurance. The next image is clear as mud since there are so many hands in the cookie jar, and because if you try to ask the cost of a medicine, you will get 100 different answers and that’s based on how the hands all negotiate the list price. Next to housing, healthcare is the biggest expense most people have, and yet we have no say in negotiating costs, unlike just about every other big expense in our lives. IMG_0613

We have the pharmaceutical company, the insurance company, the pharmacy benefits management (PBM) companies, and the consumer (general public). And some might also include politicians, since they get their share as well (contributions to the committee members referenced below), but in a different way. Though one can argue that campaign contributions also add to the high cost of medicines (see Citizen’s United – the content of the advertising speaks for itself).

Everyone above takes their cut, mind you, while I have issues with insurance companies arbitrarily deciding what medicines people should be allowed to take (a decision that SHOULD be between my doctor and me), the PBMs such as Express-Scripts (Accredo), CVS Caremark, etc. are just plain scourge of the earth. I have been doing battle with them for years. These are two of the largest PBMs thanks to monopolies and insurance companies buying them up. See the complaints for both Express-Scripts and CVS Caremark and these are just from Consumer Affairs. Facebook and Twitter are riddled with 10s of thousands of complaints about both companies.

The argument is that mail order / specialty pharmacies are better suited to taking care of medicines for diseases like MS, and I can tell you that this is just.not.true.! Imagine having to beg a giant corporation to do their job effectively, like something as basic as ordering a refill on an app, and that refill never being transferred to the specialty arm of the pharmacy. And financially, my local pharmacy has told me time and again, that they can, and do, handle specialty medicines with ease. And having that personal connection to someone is way better than talking to a toll-free number, where they couldn’t care less about whether or not your medicine is delivered on time or within proper temperature controls.

So while I will never begrudge a company making a profit, unnecessarily high costs (set by pharmaceutical companies), stop gaps (PBMs), and senior leadership salaries and bonuses, on the backs of people who need these medicines, is downright offensive. On top of that, direct to consumer marketing, only allowed in the United States, and New Zealand, is a $10b a year (U.S.) expenditure. As the saying goes, if it didn’t work, they wouldn’t do it.

Pharmaceutical companies argue that raising the cost of current medicines is what allows them to develop new and innovative treatments. However consider that basic research is typically started at the NIH, and then the pharmaceutical industry runs with it, taxpayers (us) already fund part of the development of medicines.

On Monday, February 25, congress held a public all day session with the top seven pharmaceutical companies. I have worked in the industry for almost 25 years, and even I learned from watching it. Albeit long,  it’s definitely worth it to understand the issues and challenges. And I can also say that all of the colleagues I have encountered over the years, do genuinely want to find cures and help people living with diseases. At issue is having shareholders and developing medicines for people who need them, is, in fact, an ultimate conflict of interest.

Pharmaceutical companies participating in above:
AbbVie
AstraZeneca
Bristol-Myers Squibb
Johnson & Johnson
Merck
Pfizer
Sanofi

“What keeps you up at night?”
None of heads of the companies said – the cost of medicines

Why in the United States do some think that healthcare should be a privilege, as opposed to a birth right? Cost of medicines is a highly complex issue, but does it need to be?

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Rest

Banksy - relax don't quit

Rest (noun)
the refreshing quiet or repose of sleep

The last few weeks I’ve been going non-stop with work (a good problem to have), but last night MS said, whoa Nelly, no can do, shutting ‘er down. So while I got a good night sleep, this morning my body still had other ideas.

At the beginning of this long distance marathon a day like today would make me hate myself. But now, now I know if it takes a few hours of recharging to keep going, no one is calling me to the OR, so I’m ok with it. Please don’t feel bad, because I’m not sick, just temporarily out of order.

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Life

life

Life (noun)
a principle or force that is considered to underlie the distinctive quality of animate beings

Each person’s life is different, and how each person approaches life is different. What we all do have in common is that one day we are all going to die. They say the only things that are guaranteed in life is death and taxes, but let’s face it, even taxes aren’t guaranteed in this day and age, just ask the person masquerading as our president.

I think what we also have in common is that at any given moment, life can bring you to your knees, further down that you ever thought you could go. And in the next moment, you see a sunset or a flower, and it can bring you to the highest high.

For me, MS was like that the first few years. Fortunately the last two have been quite benign. And while most days I don’t hit those soul crushing lows, the what if does stick with me buried deep. What if I wake up and my feet are numb and it lasts for months. And then I come back to, but what if it doesn’t? I’m glad we’ve been in what if it doesn’t territory for a long time.

The life moments of peace my body experiences now, where it’s almost as if I don’t have MS, are more, than less, these days. Sometimes I look up after hours of working and think, “wow I haven’t had symptoms or thought of the MS for hours” and I am just me. While some people will say that they are “me” with the MS, I do agree to a degree, but I would be happy to be me, without it.

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Year

Year

 

Year (noun)
the period of about 3651/4 solar days required for one revolution of the earth around the sun

Whenever I think about the length of a calendar year, I can’t help but think of Rent. I remember seeing the Broadway production and thinking anything was possible. I used to think that about NYE, and inevitably would be let down by the seemingly over the top expectations on what the shift from one year to the next should bring. After all, Tuesday still comes after Monday.

Now I think of a year as any 365 days, wherein any morning you wake up can be the start of something new, it doesn’t need to wait until January 1. And I might argue that it’s probably easier to sneak new things under the radar any old day of the week.

I’m learning how not to dwell in the past and find myself getting annoyed with those “best” and “worst” lists or even more horrid, New Year’s resolutions. Every 365 days will have all of these things because life can be wonderful and messy all at the same time, but I guess that’s what keeps it interesting.

2018 was wonderful for me personally, professionally, and health-wise. I’m moving out of another year without having an MS flare-up because I just don’t have time for it. And while I’m shatteringly exhausted from politics and bad, self-serving people, I still believe that as a nation those are the sum of our parts and not the whole, and we will persevere.

Happy, healthy, prosperous to all and thanks for reading.

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Walk

Reservoir

Walk (verb)
to move along on foot

The above picture is of my happy place in Central Park. One of my favorite things to do in the cold weather is to walk the reservoir (the colder the temps, the better), named after Jacqueline (Kennedy) Onassis who lived nearby on the Upper East Side.

I’ve never been quite sure why it’s my happy place. Nothing in particular ever took place there, other than I think it’s amazing to have this little body of water that ducks love to hang in right in the middle of the city. And each time I approach it from the west side, I just feel happy.

It’s not lost on me that 10.5 years into the onset of the MS symptoms, walking outside is one of my favorite activities. I can walk for blocks and blocks in the city and never get bored of the sights. In December of 2008, the symptoms that I had experienced a few months prior, were a distant memory. And as shed tears of joy the neurologist (who has since become mine) that I saw once that month told me that he didn’t consider it first onset, and that I didn’t have MS. If memory serves, I didn’t walk, but rather skipped, out of his office that day.

Three months later, all of that would change, and not only did the symptoms come back, but other new ones joined them and they were fierce this time. Tingling and numbness from my feet over my stomach. But, being it’s the “but you look so good disease,” no one could tell by looking at me, because I had no trouble walking. Two weeks later in April of 2009 I would be officially diagnosed. And yet I still walked out of the hospital after receiving the test results. A little more banged up, but walking just the same.

In those early days I lived in constant fear of losing mobility and vision (neither has ever happened so far – or at least the times I bump a toe or shin on my bed frame seems pretty normal for my age) since I’d seen so many who had come before me go through it. Why would I be different?

It’s only been in the last few years of not having a flare-up, where I’ve started to not think so much about those two issues. I’m trying to keep it that way, but when you’re told that a+b=c, and you know c, but don’t know a or b, how does that happen? Is it the medicine I’ve been taking for almost 10 years, working from home, anti-depressant, cannabis (mostly CBD), exercising, music, family, friends? I guess the answer is yes?! While it’s easy(er) to feel positive about walking into the future when you feel well, that’s just what I intend to do.

Happy, healthy, New Year to all!

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Thankful

Thankful

Thankful (adjective)
expressing gratitude and relief

A – autumn chill
B – body that carries me day to day
C – city life
D – dancing
E – exercise
F – family & friends
G – giving
H – happy
I – ice
J – jam
K – kindness
L – love
M – music
N – naps
O – options
P – pizza
Q – quiet
R – red
S – sea
T – tough
U – unusual
V – visual
W – winter
X – no more xenophobia
Y – yippee
Z – zany

Thankful to those who continue to come on this journey with me.

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Strong

Strong

Strong (adjective)
having the power to move heavy weights or perform other physically demanding tasks
possessing skills and qualities that create a likelihood of success

When I looked up the definition for strong, there were at least seven different variations. When people think of strong they most often think of how much or how little you can lift or “what doesn’t kill you, makes you strong” (I should look like the Incredible Hulk by now – the Mark Ruffalo version). Or “I could never be as strong as you are dealing with MS.” Or “strong is what you are when you don’t have any other choice.” While people think those are compliments, I’m no stronger than anyone else who deals with a chronic (sometimes acute) disease.

For the last week, I was up and down with my, this time of year ick. And for sure I didn’t feel strong. I was full on, 100% pity party, having to remind myself regularly that this is way better than having to deal with a flare-up for three months. BUT when you’re in the throes of non-stop coughing, can’t sleep, can’t get comfortable, can’t get yourself out, can’t clean your apartment, and can’t attend events, and being a day away from dreadlocks because you can’t shower, finding the “can” is not easy.

And while (fingers & toes crossed), I’m not having a flare-up, my immune system working overtime to fight this ick, lends itself to inflammation, which for me is constant tingling. And having to take nighttime cold meds to squash the coughing, means that I’m foggy for most of the next day, and it gives me really weird, fucking dreams, bordering on nightmares. Those with MS know that it takes us longer to recover even from the average cold. While I’m not thoroughly fatigued, I’m still super wiped out, and the nighttime cold medicine doesn’t help the cause.

This last week I also had to forgo my regular exercise routine, which is the first time in many months, and while most say don’t beat yourself up, it’s ok to be kind to yourself when you’re sick, for me even taking a week off can be detrimental to my physical and mental well-being. But tomorrow, bright and early, I will don the work out clothes and drag myself to pilates, which I truly love.

Strong can mean many things, and we each have our own version(s) of strength. You don’t have to lift heavy weights to be strong. But know that whatever your version is, you are indeed strong, powerful, and capable.

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PS – If you don’t know Ady Barkan, please follow him. He is literally using his last breath to fight for what should be a right, rather than a privilege. To me he is both strong & a hero.