Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 As I have said before I am a native of Venezuela, through the spanish list I met a lady with a 6 year old child that has CF, they live in Caracas, Venezuela. Let me tell you a little bit about Venezuela's situation right now. The unemployment rate is 30 something percent, doctors, engineers, attorneys are working for minimun wage, not in their fields, if they find work. Most of all the industries are not working. Venezuela is the 3rd producer of oil in the world, but because of a 2 month strike, the industry is barely working. The country has a president that has taken Venezuela back to the 18th century. To give you an idea of this guy, his best friend is Fidel Castro from Cuba, very scary. Well, going back to the child with cf in Venezuela, for many years he had been diagnosed with everything imaginable, from asthma to mal- nutrion , which he did have. One of his lungs is very much damaged, well you can all imagine for 5 years he was not doing what he was suppost to do. Finally a doctor at the childrens hospital where he was interned and where he pretty much lived all his life, ordered a sweat test and of course it was cf. At any rate last year with a lot of sacrifice and fundraising they took their little boy to the city of Miami, Florida where he was put on TOBY, Pulmozyme, he takes 3 different types of Creon, albutarol, all the cf medicines. With much sacrifices they were able to buy this drugs for him, except for albuterol, none of this drugs are found in Venezuela. Since, December, the president of venezuela has imposed a monetary exchange control, set the value of the dollar from 760 bolivars per dollar to 1600 bolivars per dollar. The worst is that it is almost imposible to buy a dollar through normal means, the only way to buy dollars is in the black market, and it sells for 2500 bolivars for 1 dollar, not knowing if they are good or counterfitted. Sorry that I am taking so long, but Venezuela is not very far from the US, and talking to the mom of this child I have learned that of all the cf patients in this childrens hospital only her child is on some kind of cf protocol, which due to the money problem he will not be after this round of toby, he does not have anymore Creon 10, either. My question to everyone on this list is: Is there any pharmaceutical company that can help this child? Is there any company that I can write to help this child? When they came to Miami last summer they bought enough medicine for a year, this family is not rich, they have done a great deal of fundraising. Their biggest hurdle is not being able to get US currency or any other currency for that matter. Again I apologize for the long post but if it helps them it is worth it. mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 In a message dated 7/6/2003 5:09:06 PM Central Daylight Time, gale.harris@... writes: > Can your friend return to FL? Does she have reliable mail delivery? > Are there laws that prohibit sending perscription drugs to her? Are > enzymes a presription drug in Canada? > > There was another post this weekend from a lady that wanted help for > her child that needs a transplant. > > How do we help people in other countries? > > Gale ya good question!! I would like to try the gargle from Sweden but are insurance will not cover it and it is really expensive. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 Dear , Believe me I have heard about the terrible economy in Venezuela. My brother in law is from there. His sister is an architect but she has to work a minimum wage job because no one is building anything-no money. She is now trying to get a visa to come here, but even that is taking forever. Have you tried to contact the makers of Tobi (Chiron) and Creon (Slovay)? I know that some of the drug companies will help people get the drugs when they are unable to afford them, but I don't know if they do it for patients from another country. I had e-mailed Chiron about something else and they got back to me relatively quickly (a few days). I got the e-mail addy by going in through " healthcare professionals " when I went to www.abouttobi.com I hope this helps some. Ha ve a question??? As I have said before I am a native of Venezuela, through the spanish list I met a lady with a 6 year old child that has CF, they live in Caracas, Venezuela. Let me tell you a little bit about Venezuela's situation right now. The unemployment rate is 30 something percent, doctors, engineers, attorneys are working for minimun wage, not in their fields, if they find work. Most of all the industries are not working. Venezuela is the 3rd producer of oil in the world, but because of a 2 month strike, the industry is barely working. The country has a president that has taken Venezuela back to the 18th century. To give you an idea of this guy, his best friend is Fidel Castro from Cuba, very scary. Well, going back to the child with cf in Venezuela, for many years he had been diagnosed with everything imaginable, from asthma to mal- nutrion , which he did have. One of his lungs is very much damaged, well you can all imagine for 5 years he was not doing what he was suppost to do. Finally a doctor at the childrens hospital where he was interned and where he pretty much lived all his life, ordered a sweat test and of course it was cf. At any rate last year with a lot of sacrifice and fundraising they took their little boy to the city of Miami, Florida where he was put on TOBY, Pulmozyme, he takes 3 different types of Creon, albutarol, all the cf medicines. With much sacrifices they were able to buy this drugs for him, except for albuterol, none of this drugs are found in Venezuela. Since, December, the president of venezuela has imposed a monetary exchange control, set the value of the dollar from 760 bolivars per dollar to 1600 bolivars per dollar. The worst is that it is almost imposible to buy a dollar through normal means, the only way to buy dollars is in the black market, and it sells for 2500 bolivars for 1 dollar, not knowing if they are good or counterfitted. Sorry that I am taking so long, but Venezuela is not very far from the US, and talking to the mom of this child I have learned that of all the cf patients in this childrens hospital only her child is on some kind of cf protocol, which due to the money problem he will not be after this round of toby, he does not have anymore Creon 10, either. My question to everyone on this list is: Is there any pharmaceutical company that can help this child? Is there any company that I can write to help this child? When they came to Miami last summer they bought enough medicine for a year, this family is not rich, they have done a great deal of fundraising. Their biggest hurdle is not being able to get US currency or any other currency for that matter. Again I apologize for the long post but if it helps them it is worth it. mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 Can your friend return to FL? Does she have reliable mail delivery? Are there laws that prohibit sending perscription drugs to her? Are enzymes a presription drug in Canada? There was another post this weekend from a lady that wanted help for her child that needs a transplant. How do we help people in other countries? Gale > As I have said before I am a native of Venezuela, through the spanish > list I met a lady with a 6 year old child that has CF, they live in > Caracas, Venezuela. > Let me tell you a little bit about Venezuela's situation right now. > The unemployment rate is 30 something percent, doctors, engineers, > attorneys are working for minimun wage, not in their fields, if they > find work. Most of all the industries are not working. Venezuela is > the 3rd producer of oil in the world, but because of a 2 month > strike, the industry is barely working. The country has a president > that has taken Venezuela back to the 18th century. To give you an > idea of this guy, his best friend is Fidel Castro from Cuba, very > scary. > Well, going back to the child with cf in Venezuela, for many years he > had been diagnosed with everything imaginable, from asthma to mal- > nutrion , which he did have. One of his lungs is very much damaged, > well you can all imagine for 5 years he was not doing what he was > suppost to do. Finally a doctor at the childrens hospital where he > was interned and where he pretty much lived all his life, ordered a > sweat test and of course it was cf. > At any rate last year with a lot of sacrifice and fundraising they > took their little boy to the city of Miami, Florida where he was put > on TOBY, Pulmozyme, he takes 3 different types of Creon, albutarol, > all the cf medicines. With much sacrifices they were able to buy > this drugs for him, except for albuterol, none of this drugs are > found in Venezuela. Since, December, the president of venezuela has > imposed a monetary exchange control, set the value of the dollar from > 760 bolivars per dollar to 1600 bolivars per dollar. The worst is > that it is almost imposible to buy a dollar through normal means, the > only way to buy dollars is in the black market, and it sells for 2500 > bolivars for 1 dollar, not knowing if they are good or counterfitted. > Sorry that I am taking so long, but Venezuela is not very far from > the US, and talking to the mom of this child I have learned that of > all the cf patients in this childrens hospital only her child is on > some kind of cf protocol, which due to the money problem he will not > be after this round of toby, he does not have anymore Creon 10, > either. > My question to everyone on this list is: Is there any pharmaceutical > company that can help this child? Is there any company that I can > write to help this child? When they came to Miami last summer they > bought enough medicine for a year, this family is not rich, they have > done a great deal of fundraising. Their biggest hurdle is not being > able to get US currency or any other currency for that matter. > Again I apologize for the long post but if it helps them it is worth > it. > > mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Thank you I will try e-mailing both companies. Yes, it is very hard and scary the situation in Venezuela, even more so for sick people. During the big strike a lot of people that were on dyalisis (sp) died because the medicines to do it were not available, too sad. mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf > Dear , > Believe me I have heard about the terrible economy in Venezuela. My brother in law is from there. His sister is an architect but she has to work a minimum wage job because no one is building anything-no money. She is now trying to get a visa to come here, but even that is taking forever. Have you tried to contact the makers of Tobi (Chiron) and Creon (Slovay)? I know that some of the drug companies will help people get the drugs when they are unable to afford them, but I don't know if they do it for patients from another country. I had e-mailed Chiron about something else and they got back to me relatively quickly (a few days). I got the e-mail addy by going in through " healthcare professionals " when I went to www.abouttobi.com > I hope this helps some. > > > Ha ve a question??? > > > As I have said before I am a native of Venezuela, through the spanish > list I met a lady with a 6 year old child that has CF, they live in > Caracas, Venezuela. > Let me tell you a little bit about Venezuela's situation right now. > The unemployment rate is 30 something percent, doctors, engineers, > attorneys are working for minimun wage, not in their fields, if they > find work. Most of all the industries are not working. Venezuela is > the 3rd producer of oil in the world, but because of a 2 month > strike, the industry is barely working. The country has a president > that has taken Venezuela back to the 18th century. To give you an > idea of this guy, his best friend is Fidel Castro from Cuba, very > scary. > Well, going back to the child with cf in Venezuela, for many years he > had been diagnosed with everything imaginable, from asthma to mal- > nutrion , which he did have. One of his lungs is very much damaged, > well you can all imagine for 5 years he was not doing what he was > suppost to do. Finally a doctor at the childrens hospital where he > was interned and where he pretty much lived all his life, ordered a > sweat test and of course it was cf. > At any rate last year with a lot of sacrifice and fundraising they > took their little boy to the city of Miami, Florida where he was put > on TOBY, Pulmozyme, he takes 3 different types of Creon, albutarol, > all the cf medicines. With much sacrifices they were able to buy > this drugs for him, except for albuterol, none of this drugs are > found in Venezuela. Since, December, the president of venezuela has > imposed a monetary exchange control, set the value of the dollar from > 760 bolivars per dollar to 1600 bolivars per dollar. The worst is > that it is almost imposible to buy a dollar through normal means, the > only way to buy dollars is in the black market, and it sells for 2500 > bolivars for 1 dollar, not knowing if they are good or counterfitted. > Sorry that I am taking so long, but Venezuela is not very far from > the US, and talking to the mom of this child I have learned that of > all the cf patients in this childrens hospital only her child is on > some kind of cf protocol, which due to the money problem he will not > be after this round of toby, he does not have anymore Creon 10, > either. > My question to everyone on this list is: Is there any pharmaceutical > company that can help this child? Is there any company that I can > write to help this child? When they came to Miami last summer they > bought enough medicine for a year, this family is not rich, they have > done a great deal of fundraising. Their biggest hurdle is not being > able to get US currency or any other currency for that matter. > Again I apologize for the long post but if it helps them it is worth > it. > > mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Dear Gale, The biggest obstacle is not being able to get US currency. For them to move to Florida it is almost impossible, actually it would aggravate their problems. The only type of visa they can get is a visitor/tourist visa, they would not be able to work or apply for any kind of assistance, so actually coming to Florida per se, would not help them. I really do not think that medicines can be mailed, the times that we have sent medicines overseas, either somebody we knew took them or we use a relief org. as the Red Cross. During the earthquake in El Salvador we got a truck to drive supplies and medicines. About the lady needing help with the lung transplant, I guess the only thing that can be done at that stage is money donations. I can't think of anything else that we can do from this side of the world. I don't remember if she said where she was or where the transplant was going to be done. It was sort of vague the transplant details. Maybe if she reads this post she can tell us where her child is interned. Thank you for caring Gale, we are very fortunate to live in the USA, mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf > > As I have said before I am a native of Venezuela, through the > spanish > > list I met a lady with a 6 year old child that has CF, they live in > > Caracas, Venezuela. > > Let me tell you a little bit about Venezuela's situation right now. > > The unemployment rate is 30 something percent, doctors, engineers, > > attorneys are working for minimun wage, not in their fields, if > they > > find work. Most of all the industries are not working. Venezuela > is > > the 3rd producer of oil in the world, but because of a 2 month > > strike, the industry is barely working. The country has a > president > > that has taken Venezuela back to the 18th century. To give you an > > idea of this guy, his best friend is Fidel Castro from Cuba, very > > scary. > > Well, going back to the child with cf in Venezuela, for many years > he > > had been diagnosed with everything imaginable, from asthma to mal- > > nutrion , which he did have. One of his lungs is very much damaged, > > well you can all imagine for 5 years he was not doing what he was > > suppost to do. Finally a doctor at the childrens hospital where he > > was interned and where he pretty much lived all his life, ordered a > > sweat test and of course it was cf. > > At any rate last year with a lot of sacrifice and fundraising they > > took their little boy to the city of Miami, Florida where he was > put > > on TOBY, Pulmozyme, he takes 3 different types of Creon, albutarol, > > all the cf medicines. With much sacrifices they were able to buy > > this drugs for him, except for albuterol, none of this drugs are > > found in Venezuela. Since, December, the president of venezuela > has > > imposed a monetary exchange control, set the value of the dollar > from > > 760 bolivars per dollar to 1600 bolivars per dollar. The worst is > > that it is almost imposible to buy a dollar through normal means, > the > > only way to buy dollars is in the black market, and it sells for > 2500 > > bolivars for 1 dollar, not knowing if they are good or > counterfitted. > > Sorry that I am taking so long, but Venezuela is not very far from > > the US, and talking to the mom of this child I have learned that of > > all the cf patients in this childrens hospital only her child is on > > some kind of cf protocol, which due to the money problem he will > not > > be after this round of toby, he does not have anymore Creon 10, > > either. > > My question to everyone on this list is: Is there any > pharmaceutical > > company that can help this child? Is there any company that I can > > write to help this child? When they came to Miami last summer they > > bought enough medicine for a year, this family is not rich, they > have > > done a great deal of fundraising. Their biggest hurdle is not being > > able to get US currency or any other currency for that matter. > > Again I apologize for the long post but if it helps them it is > worth > > it. > > > > mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Is there a fund set up for your friend in Venezuela? How can we get more people involved to help them? I hate to think of how many children are in this position. Gale > > > As I have said before I am a native of Venezuela, through the > > spanish > > > list I met a lady with a 6 year old child that has CF, they live > in > > > Caracas, Venezuela. > > > Let me tell you a little bit about Venezuela's situation right > now. > > > The unemployment rate is 30 something percent, doctors, > engineers, > > > attorneys are working for minimun wage, not in their fields, if > > they > > > find work. Most of all the industries are not working. > Venezuela > > is > > > the 3rd producer of oil in the world, but because of a 2 month > > > strike, the industry is barely working. The country has a > > president > > > that has taken Venezuela back to the 18th century. To give you > an > > > idea of this guy, his best friend is Fidel Castro from Cuba, very > > > scary. > > > Well, going back to the child with cf in Venezuela, for many > years > > he > > > had been diagnosed with everything imaginable, from asthma to mal- > > > nutrion , which he did have. One of his lungs is very much > damaged, > > > well you can all imagine for 5 years he was not doing what he was > > > suppost to do. Finally a doctor at the childrens hospital where > he > > > was interned and where he pretty much lived all his life, ordered > a > > > sweat test and of course it was cf. > > > At any rate last year with a lot of sacrifice and fundraising > they > > > took their little boy to the city of Miami, Florida where he was > > put > > > on TOBY, Pulmozyme, he takes 3 different types of Creon, > albutarol, > > > all the cf medicines. With much sacrifices they were able to buy > > > this drugs for him, except for albuterol, none of this drugs are > > > found in Venezuela. Since, December, the president of venezuela > > has > > > imposed a monetary exchange control, set the value of the dollar > > from > > > 760 bolivars per dollar to 1600 bolivars per dollar. The worst > is > > > that it is almost imposible to buy a dollar through normal means, > > the > > > only way to buy dollars is in the black market, and it sells for > > 2500 > > > bolivars for 1 dollar, not knowing if they are good or > > counterfitted. > > > Sorry that I am taking so long, but Venezuela is not very far > from > > > the US, and talking to the mom of this child I have learned that > of > > > all the cf patients in this childrens hospital only her child is > on > > > some kind of cf protocol, which due to the money problem he will > > not > > > be after this round of toby, he does not have anymore Creon 10, > > > either. > > > My question to everyone on this list is: Is there any > > pharmaceutical > > > company that can help this child? Is there any company that I > can > > > write to help this child? When they came to Miami last summer > they > > > bought enough medicine for a year, this family is not rich, they > > have > > > done a great deal of fundraising. Their biggest hurdle is not > being > > > able to get US currency or any other currency for that matter. > > > Again I apologize for the long post but if it helps them it is > > worth > > > it. > > > > > > mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf Quote Link to comment Share on other sites More sharing options...
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