Author: Two Faces of MS 💋

Decade

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Decade (noun)
a period of 10 years

My gram once told me that I was the least sentimental person she’d ever met because I was throwing out an envelope that a card came in. In reality I am a very sentimental person, but once thing I’ve never really done is looked back. Is there a difference between second guessing decisions / choices and looking back longly / wistfully? Yes.

For me this decade brought illness and pain I couldn’t have dreamt up. It brought the things that everyone goes through in 10 years, but what it gave was much more. It gave me improved health, spending more time with family and close friends, a new path professionally, and more ability to give back to others.

So while it’s a new decade for everyone, and for me personally (turning 50), Jan 1 is no different from any other new day and the ability to experience life and opportunities to help others.

I know the troubles the planet is going through seems insurmountable right now, but never underestimate the ability of one person or a small group of people, to change the world.

Wishing you a happy, healthy, prosperous, and peaceful new year!

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Treatment

Image result for treatment

Treatment (noun)
medical care given to a patient for an illness or injury

On the heels of three generics for fingolimod* being approved by the FDA for use in the U.S., I thought this post might help people understand the following:

  • Generic
  • Biosimilar
  • Cost for these medicines (including patient assistance programs)

But first an important question to ask:

Is more always better? The answer, it depends.

Generics
When people think of generics, medicines like Tylenol vs acetaminophen come to mind, which is true. HOWEVER, when it comes to medicines that treat diseases like multiple sclerosis it’s not that simple. Even with acetaminophen it’s not that simple. There are things like stabilizers for the drug that need to be taken into consideration in terms of tolerability. Generic does not equal, well, equal.

Biosimilars
Biosimilars are even more complex given how medicines like monoclonal antibodies are developed, and as it states directly in the name “similar.” Generally, the data and information necessary to demonstrate the safety and effectiveness of a reference product will include clinical trials for the disease indications being sought by the manufacturer.**

Rule of thumb for MS and other diseases is if someone is stable on treatment, you don’t want to rock that boat by changing and you can rest assured in the U.S. PBMs like CVS Caremark and Express-Scripts will remove these brands from their formularies pushing people to change meds that work for them (the former has already done it with Avonex for 2020). All this despite what doctors and people living with MS might want or need.

Costs
People assume that these medicines will be cheaper, and for complex drugs that isn’t the case. In the U.S. generics and biosimilars come out around the same cost as the brand because that is what the market will bear, and, to date, we don’t have any government body governing the cost of the medicines which are set by the pharmaceutical companies. And patient assistance programs (PAPs), while currently desperately needed, help, they also add to the problem. Pharmaceutical companies get massive tax breaks for these programs along with great PR. If the cost of medicines in the U.S. were highly regulated like they are in other countries, there wouldn’t be a need for PAPs

While above is simplified for ease of reading, this knowledge is derived from 25 years of working in clinical research and 10 years living with MS. I am always happy to answer questions or point people to information that can help. You can contact me through the website or via social media any time!

Please also see this post about medicine from earlier this year.

To further understand drug costs, check out the great work of Patients For Affordable Drugs

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* Of note: Novartis has ongoing patent disputes and fingolimod generics will not be available for the public until these suits are settled, despite FDA approval.

**accessed December 7, 2019 https://www.fda.gov/drugs/biosimilars/biosimilar-development-review-and-approval

Change

Change

Change (verb)
make or become different

Heraclitus, a Greek philosopher, has been quoted as saying “change is the only constant in life.”

Humans are creatures of habit. Most of us like the status quo, not rocking the boat, and the “idea” of a linear path. In reality, most of us experience the chaos and utter mess that life is, but in that chaos we can often find beauty.

chaos

The last couple of weeks has started a process of yet another change in my life. Not sure if it’s the whole with age comes wisdom thing, since the older I get the more I realize I don’t actually know. Or if the noises in my head have gotten quieter over the years. Or if being diagnosed with the MS 10 years ago, and what I’ve been through since has shown me I can get through nearly anything, but I’m good.

But now that I’m over the hump of “holy fuck,” which genuinely always happens. Like when I made the decision to move to D.C. years ago and had to postpone it by two months because I was having daily panic attacks. But once I make a decision it’s onward and and upward. So now, I am rather looking forward to the change.

When I started this blog several years ago, I used to jot down lists of words / topics to write about thinking that’s the way it “had” to be done, but now they just come to me, and I don’t actually write them until they are literally bursting out and I MUST get it down.

This evening after seeing Marriage Story (Noah Baumbach in all his glory), one of my favorite Lynyrd Skynyrd songs came on, you know, the one that everyone screams at OTHER concerts “ironically.” > Freebird > In it they sing about change and being free as a bird, although about changing relationships, and likely a love partner, being “free as a bird,” can be about any change in life.

“This bird you cannot change…I must be traveling on now…cause there’s too many places I’ve got to see.”

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Three

Three

Three (noun)
the third in a set or series

Three years ago I woke up overnight having a really bad flare-up. And what I’d learned by that point is that IV steroids are really just like throwing lighter fluid on a flame, more harm that good. Plus I’d never been able to tolerate the oral taper. It was also during that flare-up that I had a through the looking glass experience, and just kept following the March Hare down, down, down. Fortunately I have a great doctor that helped me through it. Combine that with the not being able to treat the flare-up hard, life was like crawling through quick quicksand for three long months.

Fast forward, three years, and I am flare-up free. Not only that, but the symptoms I do have are usually mild as long as I avoid heat and humidity, as if that’s possible four months a year in NYC.

I can’t help but wonder what the algorithm is to keep from having the flare-ups. What’s changed in that time is starting a business, working from home, friends, family, Pilates, boxing, THC/CBD, and treating depression. I’m so happy to have me back, so I guess it’s a good idea to keep doing all of the above. This has been another great year, and looking forward to the future more than ever.

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A Lot

 

A Lot
A lot (noun)
very many, a large number; also, very much.

I am a lot of
love
music
smart
tenacious
ferocity
happy
sad
mad
confident
reliable
devoted
sympathetic
fortunate
sensitive
passionate
intrigued
fascinated
inquisitive
curious
nosy
eager
anxious
brave
daring
hopeful
sarcastic
rebellious
unique
dynamic
content
spirited
soulful
pensive
reliable
empathy
caring
kind
dedicated
satisfied
strength
courage

I am a lot. Take me as I am, whatever I am.

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Cruise

 

IMG_1905

Cruise (verb)
sail about in an area without a precise destination, especially for pleasure

I said I would only ever do an Alaskan cruise, since you’re standard, to the Caribbean type deal never appealed to me. Knowing myself well, I was really spot on. While Alaska & Canada were lovely, I most loved the days at sea. They really felt like vacation, and so calm. BUT, I am hooked, but where they go makes a huge different to me. Because my main MS symptom is heat intolerance, being able to be outside in August, not only at the ports, but also on the ship at the pool, was amazing. While I love the ocean, the beach in the summer is too hot for me, as are most beach destinations, even during the winter months. So this is a great option for me. And now I’m looking at another cruise next year through Scandanavian locales.

And while I’m not plugging the cruise line, and I don’t have any mobility challenges, I was so impressed by their efficiency. Just all around, the airline industry could really learn A LOT from them.

Beyond just being on top of getting people through security, check-in, and on board, I watched as people with differently abled needs had a separate area to support them. And once on board, I would say most all of the common areas were accessible, and even the jacuzzi and pool had a lift chair. Though I suspect, like any activity, it depends on how much (or not) assistance you might need. I can’t speak to the ease of ports, but from what I could see getting on / off the ship could work for most anyone. It now makes sense to me why some of the MS orgs do cruises as a group event.

Verdict? Sleep away camp for grown-ups, but better.

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Regret

spilled milk

Regret (noun)
a feeling of sadness, repentance, or disappointment over something that has happened or been done

They say you shouldn’t have regrets, but if you’ve lived any kind of life, I don’t see how that is possible. But there is a difference between letting that regret cripple you versus making mistakes and learning from them.

I think it’s important to celebrate successes, but ultimately most people will agree that we tend to learn more from the mistakes, and then hope we don’t make the same ones over again. Sometimes MS feels like one gigantic mistake, and ultimately it is, but not one that I made, one that my genes did.

Living with MS feels a little like sliding doors, where if you went in one door versus another, what might have happened? Had I never been diagnosed with MS, would I be the same person I am 10 years later? Is anyone the same person they were 10 years ago? Of course there is no way of knowing, so is it really worth wondering?

While I would welcome giving the MS back, it is something I can’t regret, since it’s not a mistake I made. And it’s taken a long time to get here.

Stay cool…

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Processing

Processing

Processing (verb)
perform a series of mechanical or chemical operations on (something) in order to change or preserve it.

May has been a time of processing for me. I turned 50, and in April had “officially” been living with multiple sclerosis for 10 years.

Turning 50, while a milestone for sure, don’t really feel any different from 47, 48, or 49. Where it did feel different was to see my name written in front of it. As in join us for Name’s 50th birthday party. Wow!

For my 40th birthday I got MS, so I knew 50 had to be better, and so far the last two weeks have been great. I celebrated for about 10 days, although not necessarily on purpose.

Ten years ago when I was diagnosed, my neurologist told me there would come a day when the MS didn’t seem so big, and that other things would take its place. But given how sick I was in the year after my diagnosis, I couldn’t see a time where he could be correct.

The days around my birthday were filled with music, museums, personal training & Pilates sessions, dinner with my BFF, and a party with people I love, including my parents who are still very active and aim to be here for a long time (oh and I even managed to fit in work as well). And while I was tired, like anyone would be, I was overwhelmed with gratitude for all of the good wishes and people who went out of their way to celebrate with me.

I feel lucky that a combination of working from home, regular exercise, CBD/THC, disease modifying drug, and a full life, has helped to keep the MS at bay (no relapses for 2.5 years). And while people are surprised to hear I have little symptoms every day (but you look so good), if this is as bad as it gets, life will continue to be good.

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Ten

Ten

Ten (number)
equivalent to the product of five and two; one more than nine; 10

Ten – number of years, to the date, of being diagnosed with MS

April 15, 2009 – ten years of living with multiple sclerosis

Ten years ago I couldn’t see what or where I would be now.

Ten years ago I walked into a hospital in a small European city to get the results of a lumbar puncture from two weeks prior. Like a movie, I stood outside of the hospital for 15 minutes, knowing that might life would never be the same coming out on the other side. I took a deep breath and in I went. I met with the resident on duty, a name I’m not sure I ever knew, where I was told in a hallway, that the CSF results were 99% conclusive for multiple sclerosis. What’s next? Call the clinic after the holiday. Two weeks later I came home to New York and collapsed on my family and a neurologist I met, once prior, a few months earlier.

Ten years ago, I got MS for my 40th bday, but on the verge of turning 50 (geez!) in a few weeks, I look back and recall my neurologist told me that I would be ok. And that I would likely continue to live my life with mild disease burden. 

Ten years ago, I could never have seen what he told me. Ten years ago my insides were sicker then they had ever been, and yet looking at me, I “looked so well.” I couldn’t hear people, over the buzzing, literally, that I would be ok. That I would be more than ok. 

Some nights I laid awake 3,000 miles away from home, in a foreign country, wishing that I had a terminal illness so that I didn’t have to live the rest of my life in turmoil. It wasn’t that I wanted to die, I just couldn’t envision living the way I was at that time. 

While I am fundamentally the same slightly cracked, mildly scrambled, person I was prior to the MS, what I learned is that life probably wouldn’t have been too different had I not been diagnosed with MS. Meaning, I’ve heard people say that being diagnosed was life altering for them. That they found more meaning then if they hadn’t been diagnosed. 

While I have made friends along the way as a result, and hopefully helped a few as well, I would tie this convoluted “gift” up in a bow, and give it right back to where it came from without thinking twice.

Multiple Sclerosis doesn’t just impact the people who have it. It touches everyone around it. It’s like a super old ivy growing around a building. It can look beautiful, but yet wreak hell on anything it comes in contact with, strangling everything in its path.  

People like to use war analogies for diseases (warrior, battle, fight, etc.). Or I’ve heard so many times over the years, “I could never do what you do.” Or the phrase, “you don’t know how strong you are until you have no choice.” I cry bullshit to all of it. If people get sicker, does that mean they have fought hard enough and it’s their fault? I am not a warrior, I am not special. We all have our “things” to deal with and we do in our own way. 

Ten years later I am still a grand daughter, daughter, sister, cousin, friend, business owner, music lover, foodie, traveller, part-time contrarian, ever reforming type A control-freak workaholic, and questioner of science & medicine. 

Two years ago to the day, I started this blog & social media (Facebook & Twitter). Thanks to everyone who sticks with me and it. 

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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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