Facebook shuts down theGirlwithMS without warning, specific reason or recourse

On 25 May, 2020, our USA Memorial Day, I received notice that my personal facebook account had been shut down and needed to be verified.  After using every tool offered by FB, I was eventually told that I had been verified and would not be verified again. This account was how I access my fb page, Facebook.com/thegirlwithms.  

In shutting me down they also shut down my Instagram account.  No specific reason. No warning.  And no way to contact either facebook or instagram.  

At the height of our COVID quarantine, I found myself completely isolated from all of my friends, my family, the thousands of people living with MS who follow me, and all of my MS support groups.  As a disabled person, I rely heavily on all social media to help me stay sane and healthy.  Maybe that was a mistake. 

With all the crud I see on facebook, why in the heck would they take down Girl with MS?  I have no way to see who contacts me via my contact button.  I can no longer make posts or share important MS studies and tips for thriving with this chronic illness.  I didn’t get sent to jail.  I got sent to death row.  

Thank you Mark Zuckerberg and your algorithms!

Not only did I lose contact with my support group and my MS world, but I lost the ability to continue my MS advocacy via two major platforms, part of which support my finances for living.  Maybe fb has gotten too big.  

I lost half of my GirlwithMS branding that has been ten years in the making.  I’ve lost handles that are no longer available. I’ve lost clients, became in default of contracts, and lost every single memory I have made on facebook and instagram these last 12 years. Every photo is gone. I was wiped off the earth as if in some comic book cleansing.  

Here is my facebook page http://facebook.com/thegirlwithms and if you go there and like it and comment to reopen it, the efforts may help! 

I have had attorneys interested in covering the case the but the cost was too high.  I’m working with an advocacy/lobbying group right now and hope to have some resolve soon.   

Here is my last post. I’m glad I had a back up admin to help, but then her privileges were revoked.  Was there something wrong with the page?  If I did anything wrong than I should be notified and given the chance to correct it.  

Is talking positive and sharing tips and research about MS too much for fb to handle?  Is this disability discrimination?  I have no idea but am waiting for some answers.  

It’s time to end the Facebook/Instagram domination and discrimination against those with disabilities.   

I don’t have an image of my old Instagram account, TheGirlwithMS.  There are others out there but they are not mine.  It has been stripped from IG.  

I’m just a white face in a gray background.  Sounds about right for 2020.  

Anyone living with multiple sclerosis or their loved ones will benefit from this page being reopened.  Anyone who is tired of Facebook and Instagram’s use of algorithms and lack of customer service will benefit.  Everyone who wants justice for the good of the public will benefit.  

Facebook and Instagram closed my accounts without warning or recourse. As an award winning blogger and MS advocate, I spend a lot of time, money and energy with Facebook and Instagram. Both of these platforms provide my services as an MS life coach and advocate.  They also connect me with friends, community and support groups.  

By the way, FB had no problem charging my credit card for ads that were running to promote traffic to my site: GirlwithMS.com, even though I had no access to change the ad or stop running it.  

The stress this has brought on as a medically disabled person trying to make a living and stay healthy is over the top.  I’ve lost income, thousands of social followers, lost traffic to my blog, lost half of my Girl with MS brand identity and have suffered relapses due to the stress.  

Please help my fight this and have our rights restored!   

Here is my facebook page http://facebook.com/thegirlwithms and if you go there and like it and comment to reopen it, the efforts may help! 

Thank you for your support!  

Caroline Craven

Writer | Speaker | MS advocate | Life Coach 

You may find me on Twitter @thegirlwithMS.

Hope in the life of the Covid Pandemic - a New MS treatment, Zeposia, approved by the FDA

These last five months have been stressful on the world, let alone those at risk of contracting Covid-19.  But in light of it all there have been some shining news that should be recognized in our news today. 

The Federal Drug Agency (FDA) has approved another new disease modifying therapy (DMT) for relapsing forms of MS!  

ZEPOSIA® (ozanimod), produced by Bristol Myers Squibb was approved and is available for use specifically in the United States. I was able to sit down with Dr. Jacqueline Nicholas, a neurologist and MS expert from Columbus, Ohio, to discuss this new drug and what it means to those living with MS.  

Dr. Jacqueline A. Nicholas, MD, MPH, System Chief Neuroimmunology and Multiple Sclerosis, OhioHealth Multiple Sclerosis Center is a board-certified clinical neuroimmunologist specializing in multiple sclerosis (MS) and spasticity. 

Dr. Nicholas shares tips and tricks to talking with Doctors and finding the best disease modifying treatment for you:

Over one million people in the U.S. live with multiple sclerosis - or “MS” - an unpredictable and sometimes disabling disease that disrupts the flow of information between the brain and the body. And the prices of DMT’s are reaching new heights.  This one actually comes in less than the others, seems like we need to take a closer look. 

 

With 85% of patients initially diagnosed with relapsing forms of MS, ongoing treatment is critical to addressing this devastating neurological disease. Each person can respond differently to MS medications, which is why having treatment options is so important. 

Recently, ZEPOSIA® (ozanimod), a new oral therapy, was approved by the U.S. Food and Drug Administration to treat adult patients with relapsing forms of multiple sclerosis, including clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease.

What will it cost?

• The 30-day wholesale acquisition cost (WAC) of ZEPOSIA will be $86,000, which is the lowest of other MS medications in its class.

How does this compare to other DMT’s available on the market today?  

• ·    Based on WAC prices as of March 2020, oral DMT costs on an annual basis for approved RMS treatments are as follows:[i]

  o    Mavenclad (variable by weight) $107.5

  o    Gilenya (0.5 mg) $103.9

  o    Tecfidera (240 mg) $99.3

  o    Mayzent (2.0 mg) $92.1

  o    Aubagio (14 mg) $92.0

  o    Vumerity (231 mg) $86.8

   

  “Bristol Myers Squibb is committed to making ZEPOSIA accessible to appropriate patients who need it.”

  
  

  o    Through the ZEPOSIA 360 Support™, Bristol Myers Squibb will provide a range of services to facilitate access to ZEPOSIA for appropriate patients with MS. This includes a co-pay of as little as $0 for eligible appropriate patients, assistance with financial support, reimbursement for some initial out-of-pocket medical costs – and a program that may help eligible patients with commercial insurance to receive free medication while they are waiting for insurance approvals. Terms, conditions, and eligibility criteria apply. More information is available at ZEPOSIA.com.

  o  We encourage any families with questions or challenges accessing our medicines to call BMS Access Support at 1-800-861-0048.

  
  

  There is a lot more information on their website but this is interesting about insurance: 

  
  

  What insurance coverage do you expect?

  • We anticipate that 65% of the patients in the US will be commercially insured patients, while the remaining 35% will be government insured patients.

  ·         We have a co-pay assistance program that will cover 100% of out-of-pocket costs for any and all commercially insured patients, which means that around 65% of patients on ZEPOSIA will have a $0 co-pay.

  
  

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  It’s important to talk with your doctor and/or MS specialist. Find a treatment that works with you and your goals.  There are many options these days!    

  
  

  Time to say #takeTHATms!