If you could ask Congress

P

PeteRose

Guest
Hi Everyone,

If you were sitting in front of Congress and had one question to ask them regarding CF, what would you ask them?

Rosie 48 w/cf
 
P

PeteRose

Guest
Hi Everyone,

If you were sitting in front of Congress and had one question to ask them regarding CF, what would you ask them?

Rosie 48 w/cf
 
P

PeteRose

Guest
Hi Everyone,

If you were sitting in front of Congress and had one question to ask them regarding CF, what would you ask them?

Rosie 48 w/cf
 
P

PeteRose

Guest
Hi Everyone,

If you were sitting in front of Congress and had one question to ask them regarding CF, what would you ask them?

Rosie 48 w/cf
 
P

PeteRose

Guest
Hi Everyone,
<br />
<br />If you were sitting in front of Congress and had one question to ask them regarding CF, what would you ask them?
<br />
<br />Rosie 48 w/cf
 

ladybug

New member
Well, I'm not entirely sure this is a question for congress, but I'm interested to know how we can get an immediate vaccine (tested and streamlined) for H1N1 as soon as its found to be a public threat, but for much-needed medications to treat other diseases like CF, cancer, etc. etc., it takes YEARS (sometimes decades) to get through the testing process? And, even when a med is found to be helpful to the CF population (most recently Azli), the FDA still puts up red tape to keep it from people who need it.

And, I won't accept that further testing has to be done on drugs for CF, cancer, etc. and more extensive testing has to be done. We all know there was VERY LITTLE testing done on the H1N1 vaccine and yet it was accepted by the FDA within what... weeks?? Now it is up to the public to decide whether they want to risk the side effects from an ill-tested vaccine (I don't feel this way, I'm getting it!). They never offer that choice to CF patients. Instead, they hold it up for years in R&D.

Funny how that works.
 

ladybug

New member
Well, I'm not entirely sure this is a question for congress, but I'm interested to know how we can get an immediate vaccine (tested and streamlined) for H1N1 as soon as its found to be a public threat, but for much-needed medications to treat other diseases like CF, cancer, etc. etc., it takes YEARS (sometimes decades) to get through the testing process? And, even when a med is found to be helpful to the CF population (most recently Azli), the FDA still puts up red tape to keep it from people who need it.

And, I won't accept that further testing has to be done on drugs for CF, cancer, etc. and more extensive testing has to be done. We all know there was VERY LITTLE testing done on the H1N1 vaccine and yet it was accepted by the FDA within what... weeks?? Now it is up to the public to decide whether they want to risk the side effects from an ill-tested vaccine (I don't feel this way, I'm getting it!). They never offer that choice to CF patients. Instead, they hold it up for years in R&D.

Funny how that works.
 

ladybug

New member
Well, I'm not entirely sure this is a question for congress, but I'm interested to know how we can get an immediate vaccine (tested and streamlined) for H1N1 as soon as its found to be a public threat, but for much-needed medications to treat other diseases like CF, cancer, etc. etc., it takes YEARS (sometimes decades) to get through the testing process? And, even when a med is found to be helpful to the CF population (most recently Azli), the FDA still puts up red tape to keep it from people who need it.

And, I won't accept that further testing has to be done on drugs for CF, cancer, etc. and more extensive testing has to be done. We all know there was VERY LITTLE testing done on the H1N1 vaccine and yet it was accepted by the FDA within what... weeks?? Now it is up to the public to decide whether they want to risk the side effects from an ill-tested vaccine (I don't feel this way, I'm getting it!). They never offer that choice to CF patients. Instead, they hold it up for years in R&D.

Funny how that works.
 

ladybug

New member
Well, I'm not entirely sure this is a question for congress, but I'm interested to know how we can get an immediate vaccine (tested and streamlined) for H1N1 as soon as its found to be a public threat, but for much-needed medications to treat other diseases like CF, cancer, etc. etc., it takes YEARS (sometimes decades) to get through the testing process? And, even when a med is found to be helpful to the CF population (most recently Azli), the FDA still puts up red tape to keep it from people who need it.

And, I won't accept that further testing has to be done on drugs for CF, cancer, etc. and more extensive testing has to be done. We all know there was VERY LITTLE testing done on the H1N1 vaccine and yet it was accepted by the FDA within what... weeks?? Now it is up to the public to decide whether they want to risk the side effects from an ill-tested vaccine (I don't feel this way, I'm getting it!). They never offer that choice to CF patients. Instead, they hold it up for years in R&D.

Funny how that works.
 

ladybug

New member
Well, I'm not entirely sure this is a question for congress, but I'm interested to know how we can get an immediate vaccine (tested and streamlined) for H1N1 as soon as its found to be a public threat, but for much-needed medications to treat other diseases like CF, cancer, etc. etc., it takes YEARS (sometimes decades) to get through the testing process? And, even when a med is found to be helpful to the CF population (most recently Azli), the FDA still puts up red tape to keep it from people who need it.
<br />
<br />And, I won't accept that further testing has to be done on drugs for CF, cancer, etc. and more extensive testing has to be done. We all know there was VERY LITTLE testing done on the H1N1 vaccine and yet it was accepted by the FDA within what... weeks?? Now it is up to the public to decide whether they want to risk the side effects from an ill-tested vaccine (I don't feel this way, I'm getting it!). They never offer that choice to CF patients. Instead, they hold it up for years in R&D.
<br />
<br />Funny how that works.
 

Qiangshi

New member
Interesting topic, this one is. Ask for a better legislation and more rights to people not only suffering of cf, but all kinds of chronic debilitating diseases, including more anti-discrimating laws, I would. Too much healthcare inequality both socially and economical in US, there is.
 

Qiangshi

New member
Interesting topic, this one is. Ask for a better legislation and more rights to people not only suffering of cf, but all kinds of chronic debilitating diseases, including more anti-discrimating laws, I would. Too much healthcare inequality both socially and economical in US, there is.
 

Qiangshi

New member
Interesting topic, this one is. Ask for a better legislation and more rights to people not only suffering of cf, but all kinds of chronic debilitating diseases, including more anti-discrimating laws, I would. Too much healthcare inequality both socially and economical in US, there is.
 

Qiangshi

New member
Interesting topic, this one is. Ask for a better legislation and more rights to people not only suffering of cf, but all kinds of chronic debilitating diseases, including more anti-discrimating laws, I would. Too much healthcare inequality both socially and economical in US, there is.
 

Qiangshi

New member
Interesting topic, this one is. Ask for a better legislation and more rights to people not only suffering of cf, but all kinds of chronic debilitating diseases, including more anti-discrimating laws, I would. Too much healthcare inequality both socially and economical in US, there is.
 

bkc3

New member
Why does it cost 1 trillion dollars for a health plan that still isn't good enough for you and your family?
Why after tens of millions of dollars in tax payer funded research are medications still out of reach for people that need them?
Why are the companies that you and your families are heavily invested in so important to bail out yet health care is the priority?
How do you live a ten figure life style on a 6 figure salary?

I could go on for a while <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

bkc3

New member
Why does it cost 1 trillion dollars for a health plan that still isn't good enough for you and your family?
Why after tens of millions of dollars in tax payer funded research are medications still out of reach for people that need them?
Why are the companies that you and your families are heavily invested in so important to bail out yet health care is the priority?
How do you live a ten figure life style on a 6 figure salary?

I could go on for a while <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

bkc3

New member
Why does it cost 1 trillion dollars for a health plan that still isn't good enough for you and your family?
Why after tens of millions of dollars in tax payer funded research are medications still out of reach for people that need them?
Why are the companies that you and your families are heavily invested in so important to bail out yet health care is the priority?
How do you live a ten figure life style on a 6 figure salary?

I could go on for a while <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

bkc3

New member
Why does it cost 1 trillion dollars for a health plan that still isn't good enough for you and your family?
Why after tens of millions of dollars in tax payer funded research are medications still out of reach for people that need them?
Why are the companies that you and your families are heavily invested in so important to bail out yet health care is the priority?
How do you live a ten figure life style on a 6 figure salary?

I could go on for a while <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

bkc3

New member
Why does it cost 1 trillion dollars for a health plan that still isn't good enough for you and your family?
<br />Why after tens of millions of dollars in tax payer funded research are medications still out of reach for people that need them?
<br />Why are the companies that you and your families are heavily invested in so important to bail out yet health care is the priority?
<br />How do you live a ten figure life style on a 6 figure salary?
<br />
<br />I could go on for a while <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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