A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Cancer drug shortage’

Way to Yell, Kick, Click and Scream– I am SO Stinkin’ Proud of You!

Grace: A Child's Intimate Journey Through Cancer and Recovery

I want to get down on my knees and thank each and every one of you who yelled, kicked, clicked and screamed about the shortage of the drug methotrexate. According to PAC2, who I must continually thank for uniting us and educating us, “the methotrexate crisis is averted”! The childhood cancer community has come together in these past few weeks, with a voice that has been heard! Like I said in the title to this post, “I am SO stinkin’ proud of you!”

This news came today from a FDA webinar:

1)    The FDA has approved APP Pharmaceutical’s application to manufacture preservative free methotrexate

2)    Manufacturing at Hospira has increased earlier than expected

The FDA concluded:

We now have sufficient available supplies and will continue to see more in weeks to come.”

Further updates will come, as there are other potential drug shortages on the horizon.

If you would like to listen to the webinar, call 800-839-8792.

I send a huge thank you to Dr. Adamson from CHOP, for leading us in the legislative battles that loom around and about childhood cancer. Your leadership truly blesses us. Please keep doing what you are doing… saving children’s lives. You help give clarity to the issues for those of us who want to learn what we can do to help stop childhood cancer.

Dr. Adamson speaking about the drug shortage on PBS News Hour:

 youtube.com/watch?v=-HciX6

Finally, I’m thinking that Dr. Adamson must be a pretty fun guy to hang out with. (I see all of you laughing!) Anyone with a sense of humor, (direct and to the point) like the one he shows below, has got to be okay! 

In the quote below, it appears that Dr. Adamson challenges Congress to complete passing this legislation in the same it takes for him to get children with ALL into remission. He is not joking.

FOUR WEEKS 

“I certainly understand that passing legislation is complex, difficult. I suspect, however, that it is no more complex or difficult than curing a child with cancer. And I can absolutely tell you it is no more complex or difficult than what children with cancer face everyday.”

~ Dr. Peter C. Adamson, Chairman, Children’s Oncology Group

 Emma Grace is someone fighting cancer today…

What a beautiful girl she is!

Let’s continue our fight for her and for all the other children fighting.

We are with you Emma Grace-- all the way!

Way to Yell, Kick, Click and Scream my friends!

It is clearly apparent that somebody cares. Nice work.

Yes… nicely done.

 

 

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There Once Was a Blog About Childhood Cancer

Grace: A Child's Intimate Journey Through Cancer and Recovery

Once upon a time– long, long ago, and in this very land we live in– there was a girl who wrote a daily blog to help raise awareness about childhood cancer. With a deep care in her heart for all children who have faced the battle, she sought to make a difference in our world for them. Because childhood cancer is pitifully overlooked and underfunded, she knew she needed to join other childhood cancer awareness advocates in sharing and speaking the truth. She knew her role in this life as a survivor was not just to be grateful for her own life, but to work passionately to stop childhood cancer.

Alas, this young survivor entered her senior year of high school. Amid all of the studying for her challenging advanced placement courses, she began applying to colleges. With future options spread out before her, she knew, without a doubt, that she wanted to study to become a pediatric oncologist. And so, the college applications began, as the girl wrote essay after essay with the hope of being accepted to a great school. Double alas, the reality of paying for her college education sent her on a “Scavenger Hunt” for scholarships, and the essay-writing and packet-making reached a fever-pitch!

But something huge has been missing from her life. She needs to educate people about childhood cancer. She needs to share news; she needs to be aware so she can make others aware. Her passion and purpose have been buried under the weight of preparations for the future. She has had to keep reminding herself that there is purpose in the applications, that they are so much more than just “papers.” Her sincere hope is that all of the application work will translate one day into saving the lives of children.

So now, with a huge smile, and a breath of relief, this girl is about to re-enter the World of Blogging About Childhood Cancer.

It is SO good to be back!!!!!!!!!!!!

Please do all that you can to make our voices heard—thank you PAC2 for all of this information about the severe shortage of methotrexate.  It is true, “Our kids need ACTION NOW!

New York Times Article“Supply of a Cancer Drug May Run Out Within Weeks”

http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html?_r=2

Dr. John Maris testified before Congress about the shortage

http://curechildhoodcancer.ning.com/forum/topics/dr-john-maris-chop-testomony-to-congress-on-the-drug-shortage?xg_source=activity

Please take swift action—as if it were your child who needs this medicine to survive…

President Obama, The White House: 202-456-1111
FDA: 888-463-6332

Find and call your rep here.

Call the 5 companies who have stopped/slowed production. Press the option for “adverse effects” & tell them how you feel:

APP Customer Service
1-888-386-1300
Bedford Customer Service
1-800-562-4797
Hospira, Inc. Customer Service
1-877-946-7747
Mylan Institutional
1-888-258-4199
Sandoz Customer Service:
1-609-627-8500

Finally click here to contact your legislators now and urge them to cosponsor the Preserving Access to Life-Saving Medications Act now!

(Thank you PAC2!)

 We must act now!

Why???

Out of respect for this brave warrior’s family, the names in the following quote will remain anonymous. I know this is not what people want to see or hear… but it is truth. Today, this is what one incredible cancer child faced. This is what the family faced.

“It won’t be much longer. His breathing is rapid and shallow. His chest sounds crackly and he’s been coughing up foamy white stuff. (  ) suctioned some out and saw blood in the tube. This is horrendous. I don’t think he’ll make it through the day, but I don’t know. So sick to my stomach right now.”

Our choices are:

1)      Look away and do nothing

2)      Act boldly

I choose to act boldly. Please, allow your love for children to stir you to immediate action.

With my deep respect to all those who choose action, I give thanks for you!

I love Reef! He is calling all of us to action

 

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