Request big pharma BIOGEN to allow Compassionate Use to its life saving drug for CBS now!

Request big pharma BIOGEN to allow Compassionate Use to its life saving drug for CBS now!

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Jody Kromrey started this petition to Biogen Biogen and

Request big pharma BIOGEN to allow Compassionate Use to its life saving drug for CBS now!

CBS (Corticobasal Degeneration Syndrome) is a brutal, devastating disease that slowly KILLS its victims in the worst way - basically, by paralyzing and then suffocating them. CBS IS 100% TERMINAL. CBS continues to be considered a RARE disease, which it is, but because of the rarity of this disease is not commonly researched.  With only a handful of drugs being researched in clinical trials it leaves CBS patients with no options for treatment or delaying the inevitable death. There are no current drugs or treatments approved by the FDA for CBS. Until 2019, there has been no hope. The drug called ‘gosuranemab’ is manufactured by the $40B pharmaceutical company, Biogen. Gosuranemab is only being used in a clinical trial for Alzheimer's patients. Gosuranemab was used in the BASKET Trial in 2019 on PSP and CBS patients. One of those patients was Don Sladek who received the drug for a year and saw a reversal and positive effect.

We were all so thankful to Biogen for accepting UCSF and Dr. Adam Boxer’s request to include smaller and neglected diseases like CBS in a Basket Trial. The trial showed great promise throughout the year of 2019 to prove safety and the trial met its endpoints. However, on December 13th, 2019, Biogen abruptly stopped and canceled UCSF's TauBasket trial based on the results of an entirely different trial (PASSPORT study) testing the same drug. The decision was confusing because earlier in December of 2019 UCSF told patients that Gosuranemab would go into open-label for another six months. Biogen's decision to cancel and retract access to Gosuranemab made all patients feel like we had the rug pulled out from underneath us. I sadly want to reiterate: Biogen pulled the rug out from underneath terminally ill patients. Biogen has denied both terminally ill patients Jane and DeDe for Expanded Access for this potentially life saving drug. So, who needs access to this drug? Please get to know our loved ones below.

Jane Griffiths 

Jane Griffiths is 75 years old and has been battling CBS for 4 years. Over the past nine months, Jane’s condition battling this cruel disease has deteriorated, her family and her physician have explored several treatment options. 

Jane has lost her ability to sew, dance with her daughter Jody, walk, write, make her famous bracelets, drive, and eat/drink on her own due to this horrific disease. Four years ago, a drug did not exist that could help those with this awful disease, but now something potentially does. Due to the fact she is now in a care facility, her daughter speaks to her through window visits and calls her each night at 7:30 pm to ask about her day, send her love and say “sweet dreams.” When Jane can get her words out, she still manages to have a positive spirit, and her daughter prays for her each night to be given access to a drug that could potentially improve her quality of life. Hopefully, sometime soon, Jody can call her with some exciting news that her prayers have been answered. 

While the rare disease community hopes and waits for potential treatments, loved ones are suffering and dying. Mothers and fathers are dying. Cousins, aunts, uncles, and grandparents are dying. Jane is dying.


DeDe Hammack 

Deanna (DeDe) Hammack is 59 years old and has been battling CBS for 5 years. DeDe’s condition has declined rapidly over the past year as a result of this cruel disease. Her family and her physician have explored several treatment options. DeDe is a warm, thoughtful woman with an infectious sense of humor and a delightful smile. She spent most of her life raising two boys while supporting her husband’s successful contracting business. DeDe has lost her ability to talk, walk, sing, write, drink/eat on her own, and communicate. We all realize no cure presently exists for this terrible disease, but DeDe’s family and friends are committed to doing everything we can to continue sharing many happy times with a woman we love so deeply. 

CBS is considered ALS’s ugly step sister and is a condition that slowly immobilizes people. People with CBS lose their ability to speak, walk, eat, drink, communicate, and hug their loved ones. 

This is unethical and must change! Please help us ASK BIOGEN to give these DYING, TERMINALLY ILL patients access to a promising drug, and try to save their lives! This drug has already saved lives and must be shared with other terminal patients with CBS. 

What can you do? 

Contact Biogen at patientcenter@biogen.com to advocate for our loved ones lives. They need your support, we are simply asking for a medication that has SAVED another life, they should have the same access. 

Share this link and use #biogen to get their attention. 

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