Hypothetical question

Sevenstars · Jun 5, 2008

As more and more people are getting carrier screenings, I have begun to wonder what it means for those of us with CF.

Simply put, if prospective parents get screened for CF, find they are a carrier, and decide not to have a child, it will mean less new cases of CF. Eventually this could mean the disease is very very rare (only presenting if people aren't tested, or choose to concieve anyway) and therefore less funding for a cure.

Obviously, it would take a long time for that sort of wide scale testing to go into effect, and babies with CF that are born now have very good chances at leading long, full lives. Still, there is no cure. I just hope that we are able to "knock out" CF with a cure before we "knock out" CF by preventing CF babies from being born.

Does that make sense? What do you guys think?

Discuss! (controversial, perhaps)

Also, I don't mean to make it sound like I want there to be widespread CF just to warrant more funding, and have more guinea pigs available for testing. <img src=""> It's just something I've been pondering.

Sevenstars · Jun 5, 2008

As more and more people are getting carrier screenings, I have begun to wonder what it means for those of us with CF.

Simply put, if prospective parents get screened for CF, find they are a carrier, and decide not to have a child, it will mean less new cases of CF. Eventually this could mean the disease is very very rare (only presenting if people aren't tested, or choose to concieve anyway) and therefore less funding for a cure.

Obviously, it would take a long time for that sort of wide scale testing to go into effect, and babies with CF that are born now have very good chances at leading long, full lives. Still, there is no cure. I just hope that we are able to "knock out" CF with a cure before we "knock out" CF by preventing CF babies from being born.

Does that make sense? What do you guys think?

Discuss! (controversial, perhaps)

Also, I don't mean to make it sound like I want there to be widespread CF just to warrant more funding, and have more guinea pigs available for testing. <img src=""> It's just something I've been pondering.

Sevenstars · Jun 5, 2008

As more and more people are getting carrier screenings, I have begun to wonder what it means for those of us with CF.

Simply put, if prospective parents get screened for CF, find they are a carrier, and decide not to have a child, it will mean less new cases of CF. Eventually this could mean the disease is very very rare (only presenting if people aren't tested, or choose to concieve anyway) and therefore less funding for a cure.

Obviously, it would take a long time for that sort of wide scale testing to go into effect, and babies with CF that are born now have very good chances at leading long, full lives. Still, there is no cure. I just hope that we are able to "knock out" CF with a cure before we "knock out" CF by preventing CF babies from being born.

Does that make sense? What do you guys think?

Discuss! (controversial, perhaps)

Also, I don't mean to make it sound like I want there to be widespread CF just to warrant more funding, and have more guinea pigs available for testing. <img src=""> It's just something I've been pondering.

Sevenstars · Jun 5, 2008

As more and more people are getting carrier screenings, I have begun to wonder what it means for those of us with CF.

Simply put, if prospective parents get screened for CF, find they are a carrier, and decide not to have a child, it will mean less new cases of CF. Eventually this could mean the disease is very very rare (only presenting if people aren't tested, or choose to concieve anyway) and therefore less funding for a cure.

Obviously, it would take a long time for that sort of wide scale testing to go into effect, and babies with CF that are born now have very good chances at leading long, full lives. Still, there is no cure. I just hope that we are able to "knock out" CF with a cure before we "knock out" CF by preventing CF babies from being born.

Does that make sense? What do you guys think?

Discuss! (controversial, perhaps)

Also, I don't mean to make it sound like I want there to be widespread CF just to warrant more funding, and have more guinea pigs available for testing. <img src=""> It's just something I've been pondering.

Sevenstars · Jun 5, 2008

As more and more people are getting carrier screenings, I have begun to wonder what it means for those of us with CF.
 
 Simply put, if prospective parents get screened for CF, find they are a carrier, and decide not to have a child, it will mean less new cases of CF. Eventually this could mean the disease is very very rare (only presenting if people aren't tested, or choose to concieve anyway) and therefore less funding for a cure.
 
 Obviously, it would take a long time for that sort of wide scale testing to go into effect, and babies with CF that are born now have very good chances at leading long, full lives. Still, there is no cure. I just hope that we are able to "knock out" CF with a cure before we "knock out" CF by preventing CF babies from being born.
 
 Does that make sense? What do you guys think?
 
 Discuss! (controversial, perhaps)
 
 Also, I don't mean to make it sound like I want there to be widespread CF just to warrant more funding, and have more guinea pigs available for testing. <img src=""> It's just something I've been pondering.

NoExcuses · Jun 5, 2008

i see where you're coming from, but the screening is occuring mostly pre-natally (after pregnancy has occured) or just after birth. This could lead to more abortions, but I still see a ton of babies being born with CF.

there are still plenty of idiots like my mom's 9 brothers and sisters who refuse to get tested to see who carries the gene.

and more CFer's are having children - and I know of two CFers who have CF kids themselves! So even CFer's are not bothering to get extensively tested for CF genes OR they don't care if they have a CF baby.

so, i see where yo're coming from but I don't see it happening

NoExcuses · Jun 5, 2008

i see where you're coming from, but the screening is occuring mostly pre-natally (after pregnancy has occured) or just after birth. This could lead to more abortions, but I still see a ton of babies being born with CF.

there are still plenty of idiots like my mom's 9 brothers and sisters who refuse to get tested to see who carries the gene.

and more CFer's are having children - and I know of two CFers who have CF kids themselves! So even CFer's are not bothering to get extensively tested for CF genes OR they don't care if they have a CF baby.

so, i see where yo're coming from but I don't see it happening

NoExcuses · Jun 5, 2008

i see where you're coming from, but the screening is occuring mostly pre-natally (after pregnancy has occured) or just after birth. This could lead to more abortions, but I still see a ton of babies being born with CF.

there are still plenty of idiots like my mom's 9 brothers and sisters who refuse to get tested to see who carries the gene.

and more CFer's are having children - and I know of two CFers who have CF kids themselves! So even CFer's are not bothering to get extensively tested for CF genes OR they don't care if they have a CF baby.

so, i see where yo're coming from but I don't see it happening

NoExcuses · Jun 5, 2008

i see where you're coming from, but the screening is occuring mostly pre-natally (after pregnancy has occured) or just after birth. This could lead to more abortions, but I still see a ton of babies being born with CF.

there are still plenty of idiots like my mom's 9 brothers and sisters who refuse to get tested to see who carries the gene.

and more CFer's are having children - and I know of two CFers who have CF kids themselves! So even CFer's are not bothering to get extensively tested for CF genes OR they don't care if they have a CF baby.

so, i see where yo're coming from but I don't see it happening

NoExcuses · Jun 5, 2008

i see where you're coming from, but the screening is occuring mostly pre-natally (after pregnancy has occured) or just after birth. This could lead to more abortions, but I still see a ton of babies being born with CF.
 
 there are still plenty of idiots like my mom's 9 brothers and sisters who refuse to get tested to see who carries the gene.
 
 and more CFer's are having children - and I know of two CFers who have CF kids themselves! So even CFer's are not bothering to get extensively tested for CF genes OR they don't care if they have a CF baby.
 
 so, i see where yo're coming from but I don't see it happening

JazzysMom · Jun 5, 2008

IF it was as simple as that I would totally agree. It could be a problem if this happened!

HOWEVER; this is something my husband brought up when I presented the same thing to him.

There is soooo much we have yet to learn about CF including new/unknown mutations & severity/symptoms linked with those & testing for it.

The screenings dont & probably never will cover EVERY mutation due to cost if no other reason.

Now you have the people that are willing to "play the odds" which actually are quite good (with both parents being carries there is 25% chance with each pregnancy of child having CF, 50% chance of child being carrier & 25% chance of child having nothing).

The screening will make some people rethink the choice of having biological children, but I think they are the minority so lets put them to the side for a moment. Now we deal with the majority that want to do what generations & generations before them did....have a baby. The majority take the plunge & the "morals" that come with their decision even knowing the chances are probably handed down to the next generation and so on.

I dont think the # of CFers will decrease that much over all. I do believe that more will be diagnosed & treated early allowing more CFers alive at one time.

Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.

Boy I got long winded......Sorry and I hope you understand what I tried to say!

JazzysMom · Jun 5, 2008

IF it was as simple as that I would totally agree. It could be a problem if this happened!

HOWEVER; this is something my husband brought up when I presented the same thing to him.

There is soooo much we have yet to learn about CF including new/unknown mutations & severity/symptoms linked with those & testing for it.

The screenings dont & probably never will cover EVERY mutation due to cost if no other reason.

Now you have the people that are willing to "play the odds" which actually are quite good (with both parents being carries there is 25% chance with each pregnancy of child having CF, 50% chance of child being carrier & 25% chance of child having nothing).

The screening will make some people rethink the choice of having biological children, but I think they are the minority so lets put them to the side for a moment. Now we deal with the majority that want to do what generations & generations before them did....have a baby. The majority take the plunge & the "morals" that come with their decision even knowing the chances are probably handed down to the next generation and so on.

I dont think the # of CFers will decrease that much over all. I do believe that more will be diagnosed & treated early allowing more CFers alive at one time.

Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.

Boy I got long winded......Sorry and I hope you understand what I tried to say!

JazzysMom · Jun 5, 2008

IF it was as simple as that I would totally agree. It could be a problem if this happened!

HOWEVER; this is something my husband brought up when I presented the same thing to him.

There is soooo much we have yet to learn about CF including new/unknown mutations & severity/symptoms linked with those & testing for it.

The screenings dont & probably never will cover EVERY mutation due to cost if no other reason.

Now you have the people that are willing to "play the odds" which actually are quite good (with both parents being carries there is 25% chance with each pregnancy of child having CF, 50% chance of child being carrier & 25% chance of child having nothing).

The screening will make some people rethink the choice of having biological children, but I think they are the minority so lets put them to the side for a moment. Now we deal with the majority that want to do what generations & generations before them did....have a baby. The majority take the plunge & the "morals" that come with their decision even knowing the chances are probably handed down to the next generation and so on.

I dont think the # of CFers will decrease that much over all. I do believe that more will be diagnosed & treated early allowing more CFers alive at one time.

Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.

Boy I got long winded......Sorry and I hope you understand what I tried to say!

JazzysMom · Jun 5, 2008

IF it was as simple as that I would totally agree. It could be a problem if this happened!

HOWEVER; this is something my husband brought up when I presented the same thing to him.

There is soooo much we have yet to learn about CF including new/unknown mutations & severity/symptoms linked with those & testing for it.

The screenings dont & probably never will cover EVERY mutation due to cost if no other reason.

Now you have the people that are willing to "play the odds" which actually are quite good (with both parents being carries there is 25% chance with each pregnancy of child having CF, 50% chance of child being carrier & 25% chance of child having nothing).

The screening will make some people rethink the choice of having biological children, but I think they are the minority so lets put them to the side for a moment. Now we deal with the majority that want to do what generations & generations before them did....have a baby. The majority take the plunge & the "morals" that come with their decision even knowing the chances are probably handed down to the next generation and so on.

I dont think the # of CFers will decrease that much over all. I do believe that more will be diagnosed & treated early allowing more CFers alive at one time.

Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.

Boy I got long winded......Sorry and I hope you understand what I tried to say!

JazzysMom · Jun 5, 2008

IF it was as simple as that I would totally agree. It could be a problem if this happened!
 
 HOWEVER; this is something my husband brought up when I presented the same thing to him.
 
 There is soooo much we have yet to learn about CF including new/unknown mutations & severity/symptoms linked with those & testing for it.
 
 The screenings dont & probably never will cover EVERY mutation due to cost if no other reason.
 
 Now you have the people that are willing to "play the odds" which actually are quite good (with both parents being carries there is 25% chance with each pregnancy of child having CF, 50% chance of child being carrier & 25% chance of child having nothing).
 
 The screening will make some people rethink the choice of having biological children, but I think they are the minority so lets put them to the side for a moment. Now we deal with the majority that want to do what generations & generations before them did....have a baby. The majority take the plunge & the "morals" that come with their decision even knowing the chances are probably handed down to the next generation and so on.
 
 I dont think the # of CFers will decrease that much over all. I do believe that more will be diagnosed & treated early allowing more CFers alive at one time.
 
 Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.
 
 Boy I got long winded......Sorry and I hope you understand what I tried to say!

NoExcuses · Jun 5, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom

Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.
</end quote></div>

Good point.

Socialized medicine countries such as Australia do not cover full genetic testing. People have to pay out of pocket which doesn't occur all that often....

And to add, pre-natal, newborn screening or just random adult testing most likely isn't full panel anyway.

NoExcuses · Jun 5, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom

Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.
</end quote></div>

Good point.

Socialized medicine countries such as Australia do not cover full genetic testing. People have to pay out of pocket which doesn't occur all that often....

And to add, pre-natal, newborn screening or just random adult testing most likely isn't full panel anyway.

NoExcuses · Jun 5, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom

Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.
</end quote></div>

Good point.

Socialized medicine countries such as Australia do not cover full genetic testing. People have to pay out of pocket which doesn't occur all that often....

And to add, pre-natal, newborn screening or just random adult testing most likely isn't full panel anyway.

NoExcuses · Jun 5, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom

Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.
</end quote>

Good point.

Socialized medicine countries such as Australia do not cover full genetic testing. People have to pay out of pocket which doesn't occur all that often....

And to add, pre-natal, newborn screening or just random adult testing most likely isn't full panel anyway.

NoExcuses · Jun 5, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom
 
 
 
 Now throw in the fact that I am only referring to the US. You have countries that cant get the same care/coverage/testing that we have so who knows how that would affect things for the rest of the world.
 </end quote>
 
 Good point.
 
 Socialized medicine countries such as Australia do not cover full genetic testing. People have to pay out of pocket which doesn't occur all that often....
 
 And to add, pre-natal, newborn screening or just random adult testing most likely isn't full panel anyway.

Hypothetical question

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