FDA approves generic for Tecfidera - what this could mean to you.

When a branded drug, such as Tecfidera, loses or outgrows its patent, then a generic may become available.  And this may be an expensive change depending on the state you live in.  

On August 17, 2020, the FDA approved a generic drug of dimethyl fumarate by maker, Mylan (now part of Viatris), that is biosimilar to Biogin’s branded Tecfidera. This is VERY important to know in certain states such as California because your insurance may no longer cover brand name Tecfidera starting Jan 2021.  Or the pharmaceutical company may no longer be able to provide financial assistance.  Your doctor may need to change your script before the end of the year.




It’s very important that you talk with your doctor and your insurance company.  


Not all states prohibit/limit copay/financial assistance.  The generic dimethyl fumarate is made by Mylan with unclear copay assistance.  If you want brand-name Tecfidera, ask your doc to write Dispense as Written DAW on script. Pharmacy wouldn’t be able to substitute with generic. Insurance company may or may not cover brand-name med.

Each state is different.  Taken from RollCall - News from Congress

  • “In Arizona, a new law bans insurers from excluding the discounts only when a brand-name drug lacks a generic alternative, or if the patient obtains permission from his or her insurer to use the branded version.
  • A 2017 California law prohibits manufacturers from offering coupons at all if a generic is available, but allows copay assistance from independently controlled charities.
  • A 2012 Massachusetts law prohibits drug manufacturers from offering coupons or other assistance when a generic is available. The generic provision is scheduled to sunset soon, so coupons would be outlawed entirely.
  • A bill in New Hampshire follows California’s law, and also grants an exemption to patients who obtained their plan’s permission for the branded drug.
  • A New Jersey bill would outlaw discounts from drug manufacturers but doesn’t mention charities.“

Each state in this country is different but here in California, there is a law (AB265) that prohibits pharmaceutical companies from providing financial assistance for their drugs to their patients once a generic is approved. 

I’m not here to form an opinion rather than to inform you that if you live in a state like California and your insurance can not cover Tecfidera or you rely on financial assistance from Biogen, then you could end up with a giant copay surprise.  Check with your insurance, state and your neurologist. My neurologist was the one who told me about this and I’m not on it. But this is so important to know!  

He mentioned how  important It is to talk with these people and make necessary changes prior to the beginning of the year, 2021, as that’s when the insurance coverage will change for this drug.  

Talk with your HCP. Talk with your Insurance Company.  Call Biogen Support Services ( 1-800-456-2255).  

Biogen is available to help with questions ( 1-800-456-2255)


“California prohibits companies from offering copay assistance to patients three months after a generic becomes nationally available. For this reason, starting in mid-November the Biogen Copay Assistance Program will unfortunately no longer be available for TECFIDERA patients who reside in California or obtain their medication from a California pharmacy.

 

All impacted patients are being contacted to alert them of this change and, if requested by the patient, Biogen Support Services will help them investigate benefit options. Biogen remains committed to providing copay assistance for our other MS therapies, including another fumarate. We recommend patients speak to their healthcare provider to determine what is most appropriate for their situation, or contact Biogen Support Services at 1-800-456-2255.“






Being Thankful During Covid

 Unprecedented times, no doubt.  

As I review my photos and things that I have done since Covid started, I’m feeling better.  A little happier!  

First of all, my friends, supporters and family have been amazing during these times.  There always seems like someone is just a phone call away, especially when feeling a bit down.  

Time to look for things that make me happy. I find myself enjoying paint parties.  A great way to build hand-eye coordination, get messy, feel like a kid and have fun.  I use the “It’s Just Paint” by Sarah Van Loan.  Click here to join one of her many parties planned for the next couple of months!  And TRUST me - she  makes it so easy.  I have never really painted before. These are my firsts:




Cooking, gardening and watching wildlife in my yard were some major highlights these last nine months. The vegetables did great this year. Homemade pickles, lots of sauces and veggies and some beautiful flowers.




This little buck would come over from across the street (the mountains) and join me while I worked and blogged. He’s my little MS activist.  My outdoor office desk is about ten feet away from him.  It was a nice distraction from the nuisances of MS.  




This little lady was across the street and next door.  She came down to my patio with her two cubs after I left to run some errands. They had been taking a nap in a tree next door.  


In the cooler weather I was able to get some good walks in, 3-miles at times! Most of this came from all the encouragement I received from all my MS friends and supporters.   I did get tested for Covid but came up negative. No antibodies either so whatever cold I had before was probably something else.  


One place I found a lot of support was via the BELONG.LIFE app, BelongMS. (Click Here to download app). The communities provided, including my support group, Girl with MS, have allowed me to survive during these times. I found myself in a dark hole more than a few times.  I reached out and found ways to self-care.  I also called my doctor and had my medicine adjusted for anxiety. 


I even took out the art pencils and started doodling a bit along with some journaling.  


And on the cooler days my legs were able to carry me to the river for some fly fishing. Always one of my favorites.  


Because of my walking and yoga... I have been able to keep up with a relatively healthy summer and fall.  For that I am very grateful and thankful.  


We’ve got this!  #takeTHATms! 

I know, lots of photos.  But they make me happy and remind me of the good times of Covid and not just the stress.  Thank you for being there for me! 

My journey with MS Parts 1, 2, 3 - Going Rogue in Guatemala

New Podcast!

Diagnosed in 2001, it’s been awhile. Remembering how it came about in Guatemala and what I went through reminds me of how far I have come.

Thank you Jessie Ace and @DISabledtoENabled for hosting me on their podcast. Jessie Ace is amazing and lives with MS. She’s a bright light in this world and I feel blessed to be a part of her program.


“Twenty years ago couldn’t walk or see unassisted. Today she is thriving and helping thousands of people with MS learn to thrive too. Her award-winning blog (Girl with MS) shares tips and tricks that she’s picked up as a certified life coach, motivational speaker, health journalist, and MS advocate. Years of studying alternative and holistic nutrition and lifestyle skills have given this Girl with MS a chance at life again.

ENabled warriors, please help me in welcoming to the show the amazing… “




Caroline Craven
GirlWithMS.com

Monday
: We chat about her Multiple Sclerosis Diagnosis, how it happened, and what medications she takes for it.

Wednesday: We chat about how she started a blog that helps so many people(and how Facebook shut down all her pages overnight!)

Friday: Find out Carolines answers to the not-so-super-quick secrets round - find out about her hilarious Halloween costumes!

 

Want to WIN a copy of Jessie’s  best selling ENabled Warrior Symptom Tracker? 


Jessie’s book is called the ENabled Warrior Symptom Tracker Book. The book helps people with chronic illnesses to manage and track their symptoms, allows them to instantly spot triggers, and allows for accurate notes to be recorded and given to doctors. 

It contains:
  • Monthly Calendars
  • Appointment Diaries
  • Menstrual Tracker
  • Exercise
  • Goal setting
  • Daily sheets for positivity and growth
  • Food and hydration diaries
  • Medication/supplement tracker
  • Treatment tracker 
  • Medical quick notes for easy reference in appointments
  • And a 1 and 3 month graphs to record information on for your doctors.
There is also a bundle included with the book too which includes an ebook on how to remember everything, cheatsheets for how to get more time in your day, bookmarks to allow you to mark the pages, 'I AM' positive statement cards, in-depth symptom, and pain tracker sheets and extra graph sheets for easy use.  

Enter the giveaway by going to www.mybookgiveaway.com to enter your details in Facebook messenger (lookout for a link that will pop up!) 


Or if you’re impatient (like me) and want yours now, Claim your discounted book from www.enabledwarriors.org/st

-------
* B O O K  C L U B *
This week's book:
Lance Armstrong - It's not about the bike. 
Get your copy here: https://amzn.to/3k69GHb

Stay #ENabled and #takeTHATms! 

P.s. It's not the cards we're dealt that matters, it's how we play the game that counts ;) 
 
 
 
 
 

Girl with MS Support Group & BelongMS are here to help!

Help!   I definitely need extra support during these epic times.  How about you?  


As many of you know, my focus is Conquering MS with Self-Care.  Self-Care means a lot to different people but for me it represents a combination of awareness, education, action, and medical expertise.  As people living with MS, the need for social connection is essential in keeping us sane. At least it is for me!  


One of my most asked questions is “Do you use an app or other social media to help with your MS?” And the answer is Yes. 

I’ve used and tried different apps and social media outlets over the years and each has slightly different offerings and options.  After being shut down by facebook due to a hacker, (My story here) I knew I needed something more reliable.  

For my current life with MS, I have chosen BelongMS (part of Belong.life) to share my twenty years of experience to help others.   

We created a Girl with MS support group.  And it’s not just for girls. As a certified life  coach, nutritional educator, health journalist and someone living with MS for twenty years, we have stuff to talk about!  There are many tips and tricks and just over all support that will help us live better with MS. Will help us all say, #takeTHATms!  

  


And now we can chat directly via Belong.  Anyone with MS can join Belong and find tons of support, friendship, expert advise and even clinical trials. Once the Belong app is downloaded and you have registered (click here for app), then you can scroll down and see the different support groups.  Mine is circled below and is the Girl with MS.  Join me!  




The Girl with MS Channel is all about Self-Care.  We’ll talk about different ways to take care of ourselves, ways to find ourselves and ways to support each other.  



Because if I don't take care of myself, this is how I end up feeling:  

  

But when I do take those extra steps, those extra little measures to take care of myself like medical visits, and extra caution,



I can have days like this: 



I’m looking forward to “seeing” you on Belong and having a channel to talk directly with all of my MS friends out there.  If you already have Belong App, then look me up and let’s chat!   


MS is a challenge but together we’re stronger.  Together we can support ourselves with questions, answers, encouragement and laughter.  Together we can BELONG!    


And together we can say #takeTHATms! 



Watcher: Mystery, Murder, Mayhem and a Lady with MS

Finally!  

A FUN read featuring a lady living with MS but not focusing on her MS. Watcher, by Jason Stokes, is a tried and true murder mystery and it just happens that the leading lady has MS.  And those with it will relate as she struggles obstacles with adrenaline us MS warriors know about.  The kind that you dig up from the bottom of your well when your well is empty. The kind that comes from survival, from necessity.  

The story flows freely and frantic enough to keep the adrenaline going and the intrigue in motion. Thoroughly enjoyable and well done, I thought the author had MS because Jason Stokes nails it on what it’s like living with MS, or at least for me.  So many times I thought, “I know that feeling,” only to be swept up by the story and taken off to some ledge to hang on til I turned the page.  Not sure I’ve read that quickly in a long time! 

Any way, I had to share with you all. Need a distraction?  Try Watcher by Jason Stokes.   This Girl with MS sure enjoyed it!     

Click here to purchase

*My opinions and this is not my affiliate link - proceeds go to author* 

Taken directly from Gestalt Publishing:     


What she saw may cost her life.

Teri is a watcher. A silent witness to the lives of others. Robbed of her strength and mobility by a devastating disease, when she witnesses a crime so vicious it forces her to choose between her own safety and a woman she's never met, she'll have to untangle a web of corruption, clear her name and catch a killer before she's the next to disappear.

 

     Watcher was written as a love letter to the MS community and everyone struggling with chronic debilitating disease. A message on every page that though disability can steal your strength, rob you of your physical assets and change how the world chooses to perceive you, you are still strong. You accomplish more before getting out of bed than most people manage all day and that deserves to be celebrated.

    Teri is flawed but she is human, like the rest of us and she is empowered with the indomitable gift of an unbreakable spirit.

What's all the buzz about Kesimpta® - the newest FDA approved Drug for Relapsing forms of MS?

OK guys, KUDOS to all those doing incredible research and clinical trials for us living with MS!

Especially during this time of Covid-19, it's nice to hear of the continuous progress being made.  As someone living with MS for twenty years now, I am always interested in learning about new therapies and how research and approaches have changed over the years.   

Today we have ofatumumab, brand name Kesimpta®, the newest disease modifying therapy approved by the FDA for relapsing forms of MS. Kesimpta® is produced by Novartis.  When I heard this, I wanted to learn more!

I’ve been compensated by Novartis in the past but the opinions expressed here are my own

(These thoughts are my own - I am not being compensated for this post.)

Kesimpta® is a disease modifying therapy that targets B-cells in the body to help the immune system manage itself better and help with inflammation.  In doing so the rate of relapses and disease progression can be reduced helping people with MS live a fuller life.  Or at least this is what the research is showing.  I recently wrote about Kesimpta® for Healthline.com and contains a lot more information.   

Just released, Kesimpta® is already being prescribed and used. This Girl with MS is darn excited to hear how folks are liking it!  You can check out their information and patient support at kesimpta.com.  

I sat down the other day and got to interview two interesting folks. One a doctor and one living with MS.  


Kerry, 38: Kerry was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012 after experiencing a loss of sensation in half of her face for nearly two weeks. Today, she leads a busy life day-to-day as an advertising executive and mother of two young boys. Kerry’s husband is a key point of support at home when MS symptoms may tire her out. Kerry has never taken and is not currently taking Kesimpta. Of note, Kerry currently works for an advertising agency that services Novartis, but is not being paid for this opportunity.

 

Dr. Robert Shin, Neurologist: Dr. Shin is a Professor of Neurology at Georgetown University in Washington, D.C. and the Director of the Georgetown Multiple Sclerosis and Neuroimmunology Center. Dr. Shin specializes in multiple sclerosis and neuro-ophthalmology. Dr. Shin is a paid spokesperson for Novartis.


I recently wrote about Kesimpta® for Healthline.com.  Click here for full article. Some excerpts below: 

“This data is very promising and very positive,” Bruce Bebo, PhD, the executive vice president of research at the National Multiple Sclerosis Society, told Healthline last week. “We are excited about this option.”

More than 900 people received ofatumumab in the multi-center clinical trial this summer.

In study results published earlier this month, the immune-modulating drug was shown to quiet inflammatory disease activity. 

Researchers said a subcutaneous injection of ofatumumab produced a significant reduction in new inflammation as well as fewer clinical relapses and progression events. 

In the second year of treatment, nearly 9 out of 10 study participants on ofatumumab showed no sign of disease activity.

The study covered two double-blind, double-dummy phase 3 trials, ASCLEPIOS I and ASCLEPIOS II. Both were funded by Novartis.

The trials were conducted at 385 sites in 37 countries, comparing ofatumumab with teriflunomide, currently marketed in the United States as Aubagio, by Sanofi Genzyme.

Ofatumumab is similar in action to ocrelizumab, marketed in the United States as Ocrevus by Genentech.

These two drugs were not compared against each other, but the mechanics are the same as they target B cells in an effort to manage the immune system. 

“The clinical data is similar between the two, but the route of administration is different,” said Bebo.

  I recently wrote about Kesimpta® for Healthline.com. Click here for full article.

You can check out their information and patient support at kesimpta.com.  

(These thoughts are my own - I am not being compensated for this post.)


Just earlier this year we had the FDA approval of Zeposia® (ozanimod), produced by Bristol Myers Squibb.  Click to read my post about it.




Conquer MS with Self-Care! Tips and tricks for surviving these Covid Times.

Tips for Surviving 2020 with MS


For nearly 20 years now I have been battling my multiple sclerosis (MS).  Good days, bad days, every which way days.  I’ve had them all.   

 

I could not walk or see unassisted when the MS struck me.  Now I’m thriving in my own MS way.  It’s not the life I was used to or expected for me, but you know what happens when we have too many “plans”.  Time to let go and let life plan itself. Time to move forward with MS.  My success has been based on a natural, holistic approach to living with a lot of monitoring and help from my doctors. Life skills and stress management have played major rolls in my success.

Times like these we can benefit from learning to move forward...read more

TiPS and TRiCKS to stay healthy and cool this Summer:

Importance of Making a Plan B

Escaping the Red Zone of MS

Cooling and Healing Tips for MS

Join GWMS on youtube 

Radio Show - Tips and Tricks for living better with MS

"I'm newly diagnosed with MS - now what?" 

 

MS Living Well Podcast 9: Cognition and Multiple Sclerosis

MAY 21, 2020

 

Barry Singer MD, Director of The MS Center for Innovations in Care interviews:
Caroline Craven aka The Girl with MS is a certified life coach, writer and motivation speaker. Her writing focuses on articles in health journalism and highly rated blog. Her blog post topics range from personal experiences, research-based articles, recipes, life hacks and resources.

Click For Apple Podcasts

Click For MS Living Well Podcast 
 

Dave Bexfield (ActiveMSers.org) along with Kathy Reagan Young (FUMSnow.com), Cathy Chester (anempoweredspirit.com) And many more saved this Girl with MS during some really dark times. And that was before Covid. We have so much love and support out there. Reach out and see what there is to learn. Click here to see the full list of helpers/advocates. We’ve got this!

 

 

The Rocky Ride of MS and What Helped

Multiple Sclerosis is like riding a roller coaster in so many ways. 

This past year has shown a lot of love for this Girl with MS.  Some symptoms subdued, others raised their voices.  But top on my list was meeting so many wonderful people living with MS across the country, in person and around the world via the internet and telephone.

Despite my good year and pleasant holiday, the MS reared its ugly head with a bad case of pseudo bulbar affect or PBA.  One minute laughing, the next in tears.  I just call it the funk.  And it got a holt of me bad the other day. 

The fact it's the end of the year caused a bit of the emotions. Focusing on what did not get done in 2019 led me down a path of quick depression.  Even healthy people have to give themselves a break, but the pressure and disappointment that one can put on themselves can be debilitating.  And that's where I found myself.  

You know what helped?  All of these MS advocates and friends Read more...

Football season is a coming, not sure what it will look like but I’m getting ready.  Love my Oregon Ducks and Puddles!  #takeTHATms!
Take the Self-Care Challenge! 

Self-Care is vital in our fight against MS.  What can we do for ourselves?  Life skills lead to better health. One of these skills is to learn to quiet the mind... read more

Potential natural treatments for MS 

Alternative Therapies for MS  

Why me?  managing anger in MS
 

Surviving the Covid Quarantine

Life as an MS patient brings enough uncertainty and stress. 
These last five months have created challenges upon challenges. But it’s also provided opportunities.  I started a sourdough starter as did many people. I can’t eat a lot of gluten as it affects my MS in a bad way but it’s been fun making stuff for the family.  More importantly is that I posted two great resources to learn more about living with MS during Covid.  One is by the awesome @CathyChes at The Empowered Spirt and the other by Dr. Terry Wahls and the Wahls Group.  Did you know that elderberry during this time may not be a good thing?  So much to learn....read more...


 
Take action to potentiate your wellness. 

Other natural treatments for MS symptoms.
 
Keep on Moving if and when you can! It took me awhile to build up my strength after some time off. And this heat will have me down for awhile, but enjoy the little moments and all achievements.  

10 Ways you Can Prepare to Age Well with MS
by guest writer Anita Fernandes

Conquer MS with Self-Care:  GUT HEALTH

Much research has been done regarding gut health and MS.  And let’s face it – our guts are not healthy!  When we take pills by swallowing they have to compete with every other bacteria in your stomach and gut.  This can be a detriment for folks living with MS.