Kindness and compassion are not two words that I generally think of when dealing with big government bureaucracies.
However.
In the quest to find relief from this unending pain my medical team unearthed a drug that might actually help.
Unfortunately that drug is not yet available in the US.
I talked to a wonderful man named Jim at the FDA.
He listened to me, including crying, for a long phone call...
...Immediately contacted the drug company.
...Gave them a heartfelt plea for a compassionate release of enough meds to conduct a clinical trial of one...that would be me.
Alas, the drug company does not have enough of the medicine manufactured...
And the FDA has classified said medicine as an "Orphan"...
However...
Jim was incredibly supportive...
Offered to stay in touch with the manufacturer to see if anything changes...
And actually apologized profusely for not being able to generate a better result.
I was impressed.
And touched.
And the whole interaction really warmed my heart.
However.
In the quest to find relief from this unending pain my medical team unearthed a drug that might actually help.
Unfortunately that drug is not yet available in the US.
I talked to a wonderful man named Jim at the FDA.
He listened to me, including crying, for a long phone call...
...Immediately contacted the drug company.
...Gave them a heartfelt plea for a compassionate release of enough meds to conduct a clinical trial of one...that would be me.
Alas, the drug company does not have enough of the medicine manufactured...
And the FDA has classified said medicine as an "Orphan"...
However...
Jim was incredibly supportive...
Offered to stay in touch with the manufacturer to see if anything changes...
And actually apologized profusely for not being able to generate a better result.
I was impressed.
And touched.
And the whole interaction really warmed my heart.
This post is linked to Warm Heart Wednesday #12. For other heart warming links click here.
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15 comments:
Hello, sweet lady! I miss talking with you on a regular basis. I don't know what's up with you these days, but wanted to let you know that you and your family are continually in my prayers. Catch me up sometime when the time is right!
Terri Steffes
terristeffes1117@gmail.com
That warms my heart, too. Now I hope that it works out for you to take that drug!
=)
Wow. I am so glad that there are people out there who actually care about the human element of what they do. Jenny, I hope that they can get something for you.
Oh Jenny, there are so many good people in this world but sometimes we don't see them in big govt. for sure. Glad this man was there for you and tried his best.
hugs,
Linda
Hi Jenny, my favorite Valentine lady! I love seeing my mail with your envelope. Have a beautiful day. I am sorry for your pain and I am sorry you can not get the drug that may help you currently.I am happy someone had the kindness to help you and support you and sympathize with what you are going through. It makes life just a little easier. Hugs to you.
I am sorry things did not work out differently. I hope you can find some relief.
I'm glad he listened and tried, but sorry things are still not going well for you. I think I'd definitely follow up with him on a regular basis. Good luck Jenny. My prayers are with you.
Hello Sweet Lady! Yes, it does warm the heart when someone in government shows kindness and concern for someone who only wants to stop the pain. Your words made me feel that there is hope. I will pray for a speedy response from the drug company and your new friend at the FDA. God Bless you! Liz
Ah Gee Jenny, 'sweet and sour.' I do hope for you that the med can be here soon for you to try.
..
To have someone listen, hear, and then fight for you--yes, warms your heart and gives you faith in humanity! :) I'll say a prayer.
I still don't know what disease you have that it causes so much pain. Maybe this new drug is available in other countries ??
That's such good news.
Love,
Janie
It is a treat to talk with a compassionate government official, Jenny. I hope that the drug company comes up with enough for a drug trial for one!
Now that is customer service tenfold!
Here's hoping that something turns up.
Happy Valentine's Day!
M : )
Bless the compassionate!
hugs to you and grateful for hope.
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