going to New York at the end of October

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Chilemom

New member
Hi everyone.. long time with out writting, but still checking the forums every single day.
i have the chance to go to New York with my daughter.. HURRA¡¡¡ (remember I am from Chile, South America) at the end of October.
So I have a lot of questions, but the most important if you know any CF Doctor from the Columbia Hospital, especially if that doctor knows about kalydeco.
My daughter is g551d, i think that she is the only chillean with that mutation. I have spoke with people at th Health Department. they have told me that is to expensive. I spoke with my insurance they ask me for a budget...so need a budget, need a letter about how good this medicine is, need a contact in case my insurance agree to ask for a order... so I need a doctor.
Do you know any doctor in New york?

thank you
Chile mom
ps: then i need othe information about weather, airplanes, speccial cares, bugs.....
 
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Imogene

Administrator
Chile mom,
We know doctors in NYC. I am sure people will respond. I hope you have time to meetup with some of your friends here in NYC.
I am looking forward to your visit!
Jeanne
 
4

4hats

New member
I don't know the doctor's at Columbia, but there is Dr. Patricia Walker from the CF clinic at Beth Israel hospital in NY City. They have a wonderful staff.
 
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stephen

Guest
Dr Emily DiMango is the director of the Adult Cystic Fibrosis Program at Columbia University Medical Center. She is tops! A great doctor, easy to talk, and caring.

I use to go the Adult Cystic Fibrosis at Columbia. They are heavily involved in research related to Cystic Fibrosis. Dr. DiMango got me into the Advance Access program for Cayston (Astreanom Lysine) years before it was approved by the FDA.

If your daughter is too young to see the adult center, I would still recommend calling Dr DiMango for her recommendation. She can be reached at (212) 305-0631. Columbia also has a Pediatric CF center.

The only reason only I no longer regularly attend Dr DiMango’s CF center is because I switched to a CF center closer to my home. It was a tough decision to make the change.

Wishing you and your daughter a great trip.

Stephen
70 years with CF (G542X, D1152H) and Bronchiectasis
 
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Chilemom

New member
thank you stephen and 4hats.
i thought that the columbia hospital was a good decision because i have read how involved they are in investigation, but maybe the beth israel hospital is also involved.
my daughter is 6 (well she will turn six in New York!!!!). so i am looking for a pediatrician.
And i hope i can meet one of you there....
next week we have holidays, so i will have time to call all the doctors you can suggest me.

thank you again

Chile mom
 
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LouLou

New member
Hi Chile Mom! I'm excited to hear you are coming to NYC. I am only around 1-1/2 hrs. from the city. I would love to meet up...with you, Jeanne, and anyone else!

Personally if I was going to a country that was a leader in research and treatment for a disease my child had I would only want to meet with a facility that was world class, with doctors helping to advance progress towards a cure. Columbia seems like the clear choice to me for your visit. I'm sure they can get an interpreter but my guess is that one of the people on the cf team will speak Spanish. It's quite common here.

I also don't think it's imparitive that you meet with a children's clinic. If an adult center is wiling to see her that would be fine too.

As for the documentation, your best bet might be to get on Facebook group "Praying for success with Vertex 770/809" and post about your need for documentation for your insurance. Through this site, people have worked together to do incredible work including petitioning Europe and Australia to cover Kalydeco. Also many of them parents have collected 'evidence' of other child's success stories compiled with clinical trial data to get approval.

Most people with G551D get it with no questions asked so I think your daughter will show the results NO DOUBT that the insurance company might read about with other patients. For example, she could do a trial of 1-3 months with a before and after sweat test, pfts and weight. I woudl think she will show improvement on all three fronts!
 
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beleache

New member
I would also love to meet up with anyone else that wants to get together ! 4 Hats, Do you go to BI ? Dr. Walker is also my Dr. :) joni
 
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LouLou

New member
Just checked FB and noticed that a Ivonne Leiva Palma has joined that Vertex group I mentioned previously in this thread. She is from Santiago and is researching how other countries have petitioned their country to approve Kalydeco. She says she has "children" so maybe there are at least 1-3 kids in Chile with G551D or another mutation that Kalydeco works on.
 
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Chilemom

New member
LouLou said:
Just checked FB and noticed that a Ivonne Leiva Palma has joined that Vertex group I mentioned previously in this thread. She is from Santiago and is researching how other countries have petitioned their country to approve Kalydeco. She says she has "children" so maybe there are at least 1-3 kids in Chile with G551D or another mutation that Kalydeco works on.
Click to expand...
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Lauren Ivonne is friend of mine. She is talking about my daughter (and the chance that maybe someone else has the mutation but havent done any genetict test). With her and other parents we are starting a foundation in Chile. actually i ask her to write it (she is a fun of facebook) following your sugestion.

I am talking with the cf center of Presbyterian New York Columbian Hospital. They ask me for some exams to send it, and i am so lucky that a latin girl is my contact.


So step by step we are walking forward.

Fran
 
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