Tag: healthcare

New York City

Roof viewphoto: from my roof 

 

NYC (noun)
New York City comprises 5 boroughs sitting where the Hudson River meets the Atlantic Ocean. At its core is Manhattan, a densely populated borough that’s among the world’s major commercial, financial, and cultural centers. Its iconic sites include skyscrapers such as the Empire State Building and sprawling Central Park. Broadway theater is staged in neon-lit Times Square.

You’re probably wondering what NYC has to do with multiple sclerosis? Well, it’s the epicenter of COVID-19, both in the U.S. and now…globally…and where I’m from (yes, Manhattan, native in my blood & heart) and live, on my own.

I’ve worked from home for several years and while this part isn’t a big change for me, like it is for others that are now, the difference is I break that up by actually GOING OUT. Going out to eat, the movies, exercise, concerts, travel, see family & friends, and shops.

People have asked if I’m lonely, and probably not so much, although I’m a hugger, so I do miss those. Considering I haven’t touched another person in a month. I’m fairly certain living by myself has not only kept the CV away, but also keeps the MS at bay. And I haven’t thrived with MS for the last 12 years to be taken out by a virus that truly is…stupid.

I’d say the City (Manhattan) is probably half empty with so many people leaving for second homes (definitely only 1/3 left in my building).  I have friends that work at the local hospitals, and it is as bad as the news is saying, but even with that I couldn’t imagine leaving. Even with the dystopian nightmare that is happening, there is also hope.

There’s really nothing like a NYer when it comes to banding together, helping one another, and fixing the damage in the aftermath. If you haven’t read the Michael Schulman interviewing Fran Leibowitz [here] it’s really worth it. And I was saying it before the article came out!

I’m so thankful (and, I know, privileged being safe at home) for the essential people working out there across all industries: local farmers that keep the food supply going, truckers, grocery stores, environmental services in the hospitals, food delivery, caregivers, drug stores, cable & phone, and everyone else that deserves better than society has done for them historically.

While the billionaire companies have their hands out for money from the government, that they don’t even need (and they chastise every day people for doing it). Billionaires aren’t the ones doing the work keeping the country running, every day people always have, and always will.

I would like to think that things will change after the thick of the crisis is over, I am skeptical, but would love to be proven wrong. People need living wages (based on where they live), universal healthcare (access to HCPs included!), and proper vacation and sick leave. In just about every other western country, these are a right, not a privilege.

Please be safe, wash your hands, stay home, and let’s steamroll that curve! Alicia Keys got it right…[here].

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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

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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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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Anniversary

1 Year

Anniversary (noun)
the annual recurrence of a date marking a notable event

April 15 is an anniversary and birthday. It’s been nine years since my multiple sclerosis diagnosis, and a year since this blog was launched.

Nine years since diagnosis and that means almost TEN years since symptom onset. Some days seems like it was a lifetime ago and others, just yesterday.

I was talking to someone a few days ago and I realized it’s hard to even remember a time before MS, before the tingling, before the numbness, before the fear. BUT because there are so many more good days now, those too often fade into a blurry haze of the past.

Last year someone said to me “you just don’t have time for a flare-up this year” and I proceeded to walk around with that in my head EVERY day. And I didn’t have a flare-up. Now I’m not a big woo person, but I guess sometimes the power of suggestion is very powerful. What also REALLY helped was our cold, long winter. It made me EXTREMELY happy and healthy. Ideally I would love to never have spring and summer and live somewhere that it’s cold or cool all year round. And then I remember I’m 110% a NY girl.

I want to thank family, friends, and strangers who support me and have embraced this blog. I love seeing where the readers come from, near and far. I hope that one day in my lifetime this blog won’t be needed, but until it is, thank you, thank you, thank you for looking.

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Sick

Sick

Sick (adjective)
affected by physical or mental illness

Tis the season. In the beginning, back in 2009, after my diagnosis and starting treatment, I got sick. Like normal, regular, sick. It caught me off guard because, well duh, now that I had multiple sclerosis, clearly I was immune to the likes of viruses?! Yeah, no.

Each sniffle, cough, headache, turned into a phone call to my neurologist. He assured me that yes, I can still get run of the mill sick and that it was really just a matter of re-learning my body, and that no I definitely was not going to die from having a cold.

What it did do was make me more in tune with the rhythm of my body as I hadn’t been prior. I paid more attention to the sniffles, headaches, and coughs, whereas in the past I would have just moved on or not even notice. Now I had two autoimmune diseases to manage, while being completely insulted that I could still get run-of-the-mill ill.

Fast-forward eight plus years since my diagnosis, I’ve noticed that I actually get “normal sick” less than before. Said neurologist told me that “they” think there is some protective factor from the medicine I take for the multiple sclerosis, though it’s anecdotal.

Lately I’ve been traveling like a road warrior, which I didn’t think would ever happen again. I didn’t think my body could hold up to this type of work, travel, intensity. And while it’s not perfect, and I’m definitely older than I was when I used to do it, I’m more than holding my own with my business and travel. Sure I have gastroenteritis with a cold as a cherry on top, and I have to watch that the asthma is managed, and desperately hope my currently overactive, fighting these bugs, immune system doesn’t cause an MS flare-up, I can still trust in myself and my body.

Lest you think otherwise, I am so proper sick. From my head to my toes, body ache, tissue mounds on the floor, ordering extra Scott from Amazon…sick. Now excuse me while I go back to the “library” to answer the song of the gastroenteritis minstrels.

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Compare

Compare

Compare (verb)
estimate, measure, or note the similarity or dissimilarity between

I was laying in bed one weekend morning a few weeks ago thinking about how much more I could be doing to grow my business, but then also thinking, how much business I was actually doing each week.

I’ve looked on LinkedIn and read about how people say you must have a business plan, and others who say you don’t if you’re doing what you already know. So as not to keep you holding your breath wondering, I dove in, feet first with little to no fear for the unknown or future. Because when you live with a disease like multiple sclerosis, you spend a lot of time comparing your current life to the one bMS (before MS).

A few weeks prior to this someone I know said I could never do what you’re doing professionally because it’s too uncertain. So now someone else was comparing themselves to me! To which I replied, how do you know that you’re going to have a job tomorrow? The answer, you don’t. So I am willing to bet on myself and not compare where I am currently to previous experiences, good or bad.

As we move about our daily lives both in person and online, it’s natural to make comparisons to others, both every day individuals and famous people. We’re told not to compare ourselves, because you never know the shoes someone else is walking in, but it’s inherent. It’s part of our DNA, to measure ourselves against others. We’re taught it from infants developing like our peers, grades, sports, arts, magazines, movies, TV, etc. How are you doing compared to the other?

And it’s not just about Oprah, Bill & Melinda Gates, or Sonia Sotomayor, we now have people who get their start on YouTube and Instagram. There are cats and dogs (and a baby giraffe) who are more notable than I will ever be, no, truly.  People will say, but don’t look at those things, which is impossible given it’s our way of life right now, and part of mine both personally (this blog and other mediums) and professionally.

I have a voice and a story and this is my way to get it out. Recently, I’ve had little wins where this blog and other social media accounts have been promoted by a very large multiple sclerosis organization totally unprompted. And people have told me they’ve been helped by MY story and MY experience. So, maybe one day, I will be as notable as your favorite dog or cat. But either way it’s ok, because I’m me and don’t need to be compared. 

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Treatment

 

 

Treatment planTreatment (noun)
a session of medical care or the administration of a dose of medicine

Today is the eighth anniversary of starting treatment for multiple sclerosis. My math skills are fuzzy at best, but if you figure 52 injections a year times eight years, that’s 416 injections, give or take based on illness, birthdays, etc. But for the most part, weekly injections, for eight years.

At the time of my diagnosis there were only injectables or infusions, not the oral meds there are today. One of the things I’ve learned both professionally and personally, often times knowing what you don’t want is just as, if not more important than, knowing what you do want.

Given what I do for a living, I was able to review the clinical trial and usage data and whittle my list of treatment options down to what I was willing to do. Although my body was in turmoil at that point, I knew I wasn’t willing to inject more than once a week. Inject, it’s an odd concept. I also knew I couldn’t do nothing, or only treat holistically as some recommended. That.was.not.an.option. Complementary, definitely, alternative, no way.

For most people the notion of doing harm to yourself isn’t ingrained. Having to do something as violent as an intramuscular injection, that causes flu-like symptoms, even once a week, seemed so violent to me. I could easily do it to someone else, just like I loved watching brain and heart surgery, but to myself? Hell.no.

Once I decided on a course of action, I ran it by my neurologist here in the U.S. before setting the wheels in motion in Basel. We hadn’t anticipated a delay in starting treatment, which I’d mentally prepared myself for, but another week more separated the start date from what was originally planned. I didn’t fully grasp the whole long distance marathon thing at that point, given I never endeavored to actually run a marathon.

The onset happened end of March and diagnosis middle of April, by the beginning of June 2009 my body was so sick, that starting on treatment was not only a way for the physical healing to begin, but a way to take “control” over a life that felt very much out-of-control. Starting treatment was also a step in the life is unpredictable direction. One of the worst diseases a type A control freak could get IMO. I was incredibly scared of what was next.

When the decisions were made and drug ordered, J followed by N came over to be with me. Although it was one of the worst times in my life, looking back it also showed me that I can ALWAYS come out on the other side and be ok. A few more bumps, bruises, and warts, but ok just the same.

June 5, 2009 was 1/4 of the injection (you increase the dose over four weeks until the full dose). We practiced on an orange and these little pin cushion type contraptions. In case you’re wondering, none of them ACTUALLY mirror that of injecting yourself. Even hospitals in Europe don’t have the same level of aircon that we have in the U.S. and sitting in the little exam room, learning my new skill, and then having to execute, left me light-headed and near passing out. The first injection was administered by the nurse. We would try again the following week. I needed a STIFF drink.

A HUGE shout out to nurses, because the nurse I worked with, A, at the University Hospital of Basel’s neurology clinic, was beyond amazing. She took one of the worst times in my life and made it as tolerable as it possibly could be under the circumstances. I was 4,000 miles away from home, in a healthcare system vastly different from ours. I will be forever grateful to her.

When I moved home to NYC, she was one of the last stops I made to say good-bye. And when I returned to Basel last year for vacation, she was one of the first stops I made. Going back to where I was diagnosed was bitter sweet, but seeing her was a happy occasion. When you live in an area with a large expat population, your patients come and go. She told me that I’m one of the few that has kept in touch. I couldn’t imagine not.

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