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

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

* 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

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.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

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.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

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.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

 

 

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…

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

 

 

 

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.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

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. 

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.