G551D Australian coming to the US for Ivacaftor (Kalydeco)

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mima63

New member
I am seeking advice re CF clinics in LA. Due to the declining health of my daughter we are going to buy Ivacaftor (Kalydeco) until the Australian Government funds it. Vertex will not accept our Australian Drs prescription and we need to travel to the US to have a prescription issued by a US Dr (this is despite long haul travel not being good for my daughters health). Can anyone recommend a clinic and respiratory physician in LA who is careful with cross infection issues and who also has a 'can do' attitude? Our Melbourne Respiratory physician will make contact with them and supply all the neccessary information.
Any other advice you may have regarding accessing Ivacaftor would be greatly appreciated.
 
M

mima63

New member
I am seeking advice re CF clinics in LA. Due to the declining health of my daughter we are going to buy Ivacaftor (Kalydeco) until the Australian Government funds it. Vertex will not accept our Australian Drs prescription and we need to travel to the US to have a prescription issued by a US Dr (this is despite long haul travel not being good for my daughters health). Can anyone recommend a clinic and respiratory physician in LA who is careful with cross infection issues and who also has a 'can do' attitude? Our Melbourne Respiratory physician will make contact with them and supply all the neccessary information.
Any other advice you may have regarding accessing Ivacaftor would be greatly appreciated.
 
J

JENNYC

New member
Bless your heart!! I pray you can get this medication for your daughter. I would be doing the same thing if I were in your shoes. You are a good mom!! I wish I had info for you but I live in Texas. I just wanted to say good luck and I applaud you!!! Praying for your daughter!!!
 
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JENNYC

New member
Bless your heart!! I pray you can get this medication for your daughter. I would be doing the same thing if I were in your shoes. You are a good mom!! I wish I had info for you but I live in Texas. I just wanted to say good luck and I applaud you!!! Praying for your daughter!!!
 
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GrandmomBEV

New member
<strong>There are so very many there. However I cant be sure one will do this , It sure cant hurt to check, You can also got to the website for the CFF.org they have a link with all the doctors, their clinic , address & phone numbers, That would be the quickest & best way to do that.</strong>
<strong>Best wishes & good luck .. I am with the Cystic Fibrosis pharmacy in Florida. We have several patients on it right now & they appear to be doing well. GOOD LUCK</strong>
<strong>1-888-307-4427 Beverley Donelson (grandmomBEV) I have a granddaughter -28yrs who has CF& is why we started the CF Pharmacy 28 years ago....</strong>
 
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GrandmomBEV

New member
<strong>There are so very many there. However I cant be sure one will do this , It sure cant hurt to check, You can also got to the website for the CFF.org they have a link with all the doctors, their clinic , address & phone numbers, That would be the quickest & best way to do that.</strong>
<strong>Best wishes & good luck .. I am with the Cystic Fibrosis pharmacy in Florida. We have several patients on it right now & they appear to be doing well. GOOD LUCK</strong>
<strong>1-888-307-4427 Beverley Donelson (grandmomBEV) I have a granddaughter -28yrs who has CF& is why we started the CF Pharmacy 28 years ago....</strong>
 
A

Aboveallislove

Super Moderator
I also don't have any info, but wanted you to know that your daughter will be at the top of our prayer list and you dear mother as well. And we'll also pray that this works out. Re the cross infections: Most clinics have protocals in place based on CFF.org recommendations so if you aren't able to get a specific doctor recommendation, the fact that the clinic is accredited with the CF Foundation should give you some reassurance. Also, you should be able to find "rankings"/"evaluations" of the LA CF Centers at CFF.org. If you can't find them, let me know and I'll try to pull the info and give you a link.
God Speed.
 
A

Aboveallislove

Super Moderator
I also don't have any info, but wanted you to know that your daughter will be at the top of our prayer list and you dear mother as well. And we'll also pray that this works out. Re the cross infections: Most clinics have protocals in place based on CFF.org recommendations so if you aren't able to get a specific doctor recommendation, the fact that the clinic is accredited with the CF Foundation should give you some reassurance. Also, you should be able to find "rankings"/"evaluations" of the LA CF Centers at CFF.org. If you can't find them, let me know and I'll try to pull the info and give you a link.
God Speed.
 
A

Aboveallislove

Super Moderator
Okay, I was thinking more about this and wanted to share some ideas FWIW. This link will show you all the acccredited care centers in CA. http://www.cff.org/CCNP/CareCenterSelector/index.cfm?state=CA. You can click on the link and see the rankings for each Center. There might be better locations than LA, although some of the rankings aren't really that helpful, i.e., BMI a center can't do too much about that. But you might want to just decide on the center and than have your Austrialian doctor contact directly the Care Center director and say he has a patient who needs to see a doctor there ASAP to get a prescription for Kalyedeco. If one Care Center says "no," you have a slew of them in CA to try with.
God Bless
 
A

Aboveallislove

Super Moderator
Okay, I was thinking more about this and wanted to share some ideas FWIW. This link will show you all the acccredited care centers in CA. http://www.cff.org/CCNP/CareCenterSelector/index.cfm?state=CA. You can click on the link and see the rankings for each Center. There might be better locations than LA, although some of the rankings aren't really that helpful, i.e., BMI a center can't do too much about that. But you might want to just decide on the center and than have your Austrialian doctor contact directly the Care Center director and say he has a patient who needs to see a doctor there ASAP to get a prescription for Kalyedeco. If one Care Center says "no," you have a slew of them in CA to try with.
God Bless
 
C

cindylou

Guest
Good luck!!! I just started Kalydeco this morning. I know this is probably a long shot, but is there any chance your daughter's doctor could get in touch with a US doctor and have him send a prescription without seeing your doctor? It seems like a situation a compassionate group of doctors would be able to understand, and I can see why you'd want to spare your daughter the long (and, I'm sure, expensive) trip.

Cindy
 
C

cindylou

Guest
Good luck!!! I just started Kalydeco this morning. I know this is probably a long shot, but is there any chance your daughter's doctor could get in touch with a US doctor and have him send a prescription without seeing your doctor? It seems like a situation a compassionate group of doctors would be able to understand, and I can see why you'd want to spare your daughter the long (and, I'm sure, expensive) trip.

Cindy
 
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fly30

New member
Hi, there is a site called CF Australia with a forum just like this. There is also a topic on there called ( information for people with g55id waiting for kalydeco) I would advise you to check this out.
It states there is a separate company that Distributes kalydeco out of the US. It has the link on there.
Hope it's some help to you.
All the best to you and your daughter. Will be praying for her x
 
F

fly30

New member
Hi, there is a site called CF Australia with a forum just like this. There is also a topic on there called ( information for people with g55id waiting for kalydeco) I would advise you to check this out.
It states there is a separate company that Distributes kalydeco out of the US. It has the link on there.
Hope it's some help to you.
All the best to you and your daughter. Will be praying for her x
 
M

mima63

New member
Thank you for your very helpful information 'Aboveallislove'. I had come across the CFF centres just by looking around the CFF website but I hadn't read it properly to realise they are 'approved' by the CFF. We will have minimal requirements from the US prescribing physician as our sole purpose is to get a prescription and have it filled and get on a plane back to Australia. I believe also from looking around on here that only certain pharmacies have the medication but we would make sure that was all in place before we left Australia. We are still working on getting Vertex to accept our Australian Drs prescription and get it sent over. We really want to avoid the long haul flight for my daughter. (the expense of the flight is a drop in the ocean compared to the expense of the medication). If we could find a US Dr to prescribe it without my daughter travelling over, that would be ok too - I would make the journey to get it...but I doubt a Dr would agree to prescribe a medication for someone they had no clinical involvement with. Fly30 - which forum were you referring to in Australia? I started 'Kalydeco for Australians' - a Facebook group - is that is the one you are thinking of? The company who distributes Kalydeco outside the US is IDIS. We have not been able to get anyone at IDIS to talk to us - they just refer us back to Vertex. Vertex were then referring us back to IDIS. Our CF Dr in Melbourne has only just got Vertex to talk to her which is a major breakthrough. If anyone has any further helpful information please let me know.
 
M

mima63

New member
Thank you for your very helpful information 'Aboveallislove'. I had come across the CFF centres just by looking around the CFF website but I hadn't read it properly to realise they are 'approved' by the CFF. We will have minimal requirements from the US prescribing physician as our sole purpose is to get a prescription and have it filled and get on a plane back to Australia. I believe also from looking around on here that only certain pharmacies have the medication but we would make sure that was all in place before we left Australia. We are still working on getting Vertex to accept our Australian Drs prescription and get it sent over. We really want to avoid the long haul flight for my daughter. (the expense of the flight is a drop in the ocean compared to the expense of the medication). If we could find a US Dr to prescribe it without my daughter travelling over, that would be ok too - I would make the journey to get it...but I doubt a Dr would agree to prescribe a medication for someone they had no clinical involvement with. Fly30 - which forum were you referring to in Australia? I started 'Kalydeco for Australians' - a Facebook group - is that is the one you are thinking of? The company who distributes Kalydeco outside the US is IDIS. We have not been able to get anyone at IDIS to talk to us - they just refer us back to Vertex. Vertex were then referring us back to IDIS. Our CF Dr in Melbourne has only just got Vertex to talk to her which is a major breakthrough. If anyone has any further helpful information please let me know.
 
A

Aboveallislove

Super Moderator
Just finished our nightly prayers and my son (who is 2 1/2 and a DD508) and I prayed for your daughter and you. We'll keep the prayers coming. God Speed.
 
A

Aboveallislove

Super Moderator
Just finished our nightly prayers and my son (who is 2 1/2 and a DD508) and I prayed for your daughter and you. We'll keep the prayers coming. God Speed.
 
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