Tag: facts

Community

community

Community (noun)
the people of a district or country considered collectively, especially in the context of social values and responsibilities; society

I live in NYC, formerly known as the epicenter of COVID19 in the United States, though other states look like they might overtake New York. Whether it’s because they didn’t believe it or have poor leaders, either way the tsunami is firmly entrenched in Arizona, Florida, and Texas, among other places.

And I’m writing about community, because as someone living with multiple sclerosis, I’ve watched my online friends across the U.S. and UK go from panicking about the impact of COVID19 on them and their loved ones, to sarcasm (we stay home a lot so this is nothing new), to anger (why couldn’t companies make these adjustments to employ people with disabilities), and everything in between.

For me, the MS is actually the least of the things I worry about. I have allergy-induced asthma, so if I avoid allergens, I’m largely fine. But I know that if I catch COVID19, or any other severe respiratory illness, all bets are off and I might as well engage the old swan dive, since I never want to be hooked up to a ventilator.

Taking all of the above into account, I just can’t get past why people think face coverings are political. If you knew that a face covering could potentially keep you from getting cancer (and in some professional industries this is actually true) or diabetes, or a host of other life threatening diseases, wouldn’t you wear one? We knew condoms largely reduced cases of HIV/AIDs if you wear them correctly, and that’s considered an “invisible” disease. Though the death is horrid, so not sure how invisible it really is in the end. COVID19 is no different.

I wear a face covering while I’m outside and can’t distance. And in NYC distancing when outside, is nearly impossible. The only time I pull my mask down outside is if I am truly on a street by myself. And as soon I have a glimmer of another human being, I put it back up, and OVER my nose. Not on my chin, not over my eyes, covering my nose and mouth. Not covering your mouth and nose is like wearing a “condom on your balls” it does absolutely no good. (credit for this goes to a guy friend that said it quite matter of factly recently)

My biggest MS symptom is heat intolerance. And I don’t mean, “oy it’s hot out.” I mean over 80 with no humidity and over 70 with it, my brain starts to go pear shaped. So I don’t spend much time outdoors in the hot months, and now wearing a mask means I’m inside even more. BUT I still wear one when I go out. If I need to take it off owing to the heat, I will steel myself on a side street and make sure no one else is around.

I say all of this because I live in a community. I may not know any of the people outside of my immediate community in my building, but NYC is absolutely a community. There aren’t many other places in the world that live in such close proximity, and yet we seem to be able to manage it because (historically) we alter our behavior for the times.

Today I went for a long walk and stopped to pick up groceries and I saw people in line either without any face covering at all or standing on top of one another with them around their chin or not covering their nose. Covering your face when it’s hot sucks, I agree, but think about if you or a loved one has ever had surgery. Would you want the doctor, nurse, and other OR staff not wearing a mask or wearing it around their chin?

I wear a face covering when I’m out, regardless of the activity, because I am part of a community, and for the foreseeable future, it’s the right thing to do. And if you’re not, and there isn’t a REALLY good reason for it, you’re not a good member of the community.

Some images below that can be used on social media posts.

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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

Awareness

Awareness

Awareness (noun)
knowledge or perception of a situation or fact

Speaking out about multiple sclerosis to others who may be dealing with this disease is actually helpful to me as well as, I hope, to others. It builds community, helps bring awareness to MS, and strengthens the MS movement that will ultimately lead to the end of this disease. – Teri Garr

March is Multiple Sclerosis Awareness Month. I like to say that MS is not all, but rather a part of me just like anything else. But like Teri Garr, I do feel like being able to talk about living with MS helps me, and hopefully others to understand the disease.

Some facts about MS that you can use to help others understand

2.3m people around the world are said to be living with MS, and 400,000 of those in the    U.S., though most people believe that the number is likely closer to 1m in the U.S. and  double the former figure world-wide. Unlike communicable diseases, MS is not required to be reported, so we have to rely on rigged insurance reporting and databases that we know aren’t accurate. And accurate reporting = more funding for research and a cure.

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central    nervous system (brain and spinal cord). Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision.

MS is thought to be an immune-mediated disease in which the body’s immune system attacks myelin, the fatty substance that surrounds and protects the nerve fibers of the central nervous system.

The damaged myelin forms scar tissue (sclerosis). Often the nerve fiber is also damaged. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted.

MS is not contagious

There is no cure for MS

People with MS tend to live, on average, 7 to 10 years less than someone without it, though they say you don’t die from MS, but rather complications of it. And have 10 years less of employment due to physical impairment.

People with MS are twice as likely to be underemployed, underinsured, and food insecure. The treatments and meds to manage the disease are extremely expensive, and “budgeting” for a relapse is impossible.

Your help can ease the burden for people living with MS. If you can’t donate money, small things like helping a friend preserve their energy, by offering to clean their house or do the laundry, is greatly appreciated (I surely wouldn’t turn it down!). Or if you can, offer to employ people living with MS. Most of us are still highly contributing members of society. We are not our disease, but rather people living with one.

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