Thursday, August 7, 2014

Can One Email Save Two Lives??

It has come to my attention that two girls in the cystic fibrosis community are in desperate need of our help. In this case, “help" can come in the form of an email from YOU and others in the CF community.

Here's what I know:
A couple of years ago Arkansas State Medicaid denied coverage of Kalydeco for four girls in need of the medication. Through the hard work and dedication of Beth Sufian (lawyer with CF herself) and her law partner, two of the girls were able to receive Kalydeco recently. Unfortunately, that still leaves two of the girls in Arkansas who are in desperate need of the medication. Their health is in decline, and time is limited. Action needs to be taken now!

The doctors of both girls have petitioned Vertex pharmaceuticals for a compassionate use of Kalydeco. The response to these pleas has been disappointing. Vertex’s response to the pleas was that they would meet with Arkansas State Medicaid. A meeting is good, but the medication would be better. A meeting will not stop the rapid decline in the health of these two girls. 

Vertex has the ability, under the law, to provide the girls with Kalydeco as early as tomorrow! The FDA allows for on-label compassionate use of any approved drug of which both of these girls qualify.

One can only imagine what these girls and their families must be thinking. The same family who participated in fundraising efforts that provided the money to accelerate the research for this drug, is now being denied access to it. Does that sound at all fair to you?

What YOU can do:
You can copy and paste the following text into the body of an email and to send it Charles Johnson, VP of Global Medical Affairs at Vertex. His email address is Let him know that this is unacceptable. Feel free to use any or all of the email provided or write your own. Please copy and to any email sent. 

Mr. Johnson - 

It saddens me to hear that Vertex is refusing to provide Kalydeco to the two girls in Arkansas; despite having the ability to provide it under compassionate use. As a community we have worked very faithfully for many years to raise funds for this very drug; for you. I understand you can’t help everyone who is denied coverage, but it would be nice to see you try. The CF community stands up and helps one another. We work tirelessly to raise these funds with the expectation they will be used to improve the health and lives of those living with cystic fibrosis. My hope is that you will serve this community like we serve each other. Thank you in advance for doing what is always right, not what is always profitable.

Your Name

Are you tapped into social media? You can also help on Facebook and Twitter!

Vertex’s 2014 second quarter financial results stated Vertex had $1.22 Billion dollars in cash.  The only drug Vertex sells is #Kalydeco. Yet they refuse to provide the drug to two girls in Arkansas who have been denied access through Medicaid, even though they can, according to law.

#Fighttheinjustice #supplydontdeny

Two girls in Arkansas whose health is declining are being denied coverage by Medicaid for #Kalydeco, a drug which could help them drastically. Legally, #Vertex can provide compassionate use of #Kalydeco while their legal case continues. Yet they are doing nothing to help. Help these girls.

#Fighttheinjustice #supplydontdeny

It’s important for a company to do the right thing. #Vertex is not in the case of two girls denied coverage for #Kalydeco by Medicaid. Show your support for fellow Cysters and their families.

#Fighttheinjustice #supplydontdeny

Doing what’s right is always more important than doing what’s profitable. #Fighttheinjustice #supplydontdeny


@vertexpharma Doing what’s right is always more important than doing what’s profitable. #Fighttheinjustice #supplydontdeny #Kalydeco

@vertexpharma How can a company with $1.22 billion dollars in cash not provide the compassionate use of #Kalydeco? #cysticfibrosis

@vertexpharma The Arkansas cysters need #Kalydeco now, not a meeting! #supplydontdeny #cysticfibrosis

I can't thank you enough for doing this and taking time out of your busy day to help these girls.