Still no word on FDA approval on Pancrecarb enzyme. It truly is the enzyme that works for my daughter. I called Digestive Care Inc, and they still have not gotten approval. It would be helpful for those who want this enzyme to make their voice heard. I gave them my name and phone #; let them know I am an RN. They suggested sending more letters to the FDA. I will be working on this again. Maybe call the CFF again? This is a CF issue that NEEDS to be advocated for.
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Pancrecarb
- Thread starter Rebjane
- Start date
Still no word on FDA approval on Pancrecarb enzyme. It truly is the enzyme that works for my daughter. I called Digestive Care Inc, and they still have not gotten approval. It would be helpful for those who want this enzyme to make their voice heard. I gave them my name and phone #; let them know I am an RN. They suggested sending more letters to the FDA. I will be working on this again. Maybe call the CFF again? This is a CF issue that NEEDS to be advocated for.
Still no word on FDA approval on Pancrecarb enzyme. It truly is the enzyme that works for my daughter. I called Digestive Care Inc, and they still have not gotten approval. It would be helpful for those who want this enzyme to make their voice heard. I gave them my name and phone #; let them know I am an RN. They suggested sending more letters to the FDA. I will be working on this again. Maybe call the CFF again? This is a CF issue that NEEDS to be advocated for.
jonimackey
New member
Did your daughter have any of the side effects from the medicine?
jonimackey
New member
Did your daughter have any of the side effects from the medicine?
jonimackey
New member
Did your daughter have any of the side effects from the medicine?
I don't mean to interfere with proven awareness protocols such as writing to the NIH, but I believe everyone should make sure their federal and state legislators and governors are not only familiar with the issues of cf but also know you are a concerned and vocal advocate. http://1.usa.gov/NxlC. Including for Pancrecarb.
If one takes time to see how many legislative proposals elected members have to vote on, one would easily understand why lobbyists are the only practical means for legislators to learn what's in the bills requiring a vote. Further, your legislator may not be familiar with cf and not prioritize his/her interest. Every agenda is important to someone so "the squeaky wheel gets the grease". That means inviting them to Great Strides events and other public cf activities. Politicians like to be important and show up at events. If you are able to coalesce your efforts with other area cf families for the fundraising events you engage, you may well be the de facto lobby for the legislator for cf, a problem that fortunately doesn't have 2 sides. The NIH is headed by Francis Collins, who discovered the CFTR gene.
Of course lobbyists have a bad rap as "special interests" but really, most, although biased to their cause, do present information the legislator can use to make an informed decision before voting. Usually there are at least 2 points of view so there are usually 2 or more lobbyist sources getting the legislators ear. The legislator's intuition and the "best presented" case may win the day. This link seems like a good one covering many genetic based illnesses and what states the newborn screening is done. http://bit.ly/pg8sJu .
The cff has this map to see if your state has screening, and if not, be a lobbyist for those new parents who don't know what you know. http://bit.ly/orsoP3
For new parents, the following site covers much of what has been discussed in this forum. http://bit.ly/nP26Fx . Of course everyone should see what answers the cff.org has for the many questions that come up.
Sorry this may have gotten too long.
If one takes time to see how many legislative proposals elected members have to vote on, one would easily understand why lobbyists are the only practical means for legislators to learn what's in the bills requiring a vote. Further, your legislator may not be familiar with cf and not prioritize his/her interest. Every agenda is important to someone so "the squeaky wheel gets the grease". That means inviting them to Great Strides events and other public cf activities. Politicians like to be important and show up at events. If you are able to coalesce your efforts with other area cf families for the fundraising events you engage, you may well be the de facto lobby for the legislator for cf, a problem that fortunately doesn't have 2 sides. The NIH is headed by Francis Collins, who discovered the CFTR gene.
Of course lobbyists have a bad rap as "special interests" but really, most, although biased to their cause, do present information the legislator can use to make an informed decision before voting. Usually there are at least 2 points of view so there are usually 2 or more lobbyist sources getting the legislators ear. The legislator's intuition and the "best presented" case may win the day. This link seems like a good one covering many genetic based illnesses and what states the newborn screening is done. http://bit.ly/pg8sJu .
The cff has this map to see if your state has screening, and if not, be a lobbyist for those new parents who don't know what you know. http://bit.ly/orsoP3
For new parents, the following site covers much of what has been discussed in this forum. http://bit.ly/nP26Fx . Of course everyone should see what answers the cff.org has for the many questions that come up.
Sorry this may have gotten too long.
I don't mean to interfere with proven awareness protocols such as writing to the NIH, but I believe everyone should make sure their federal and state legislators and governors are not only familiar with the issues of cf but also know you are a concerned and vocal advocate. http://1.usa.gov/NxlC. Including for Pancrecarb.
If one takes time to see how many legislative proposals elected members have to vote on, one would easily understand why lobbyists are the only practical means for legislators to learn what's in the bills requiring a vote. Further, your legislator may not be familiar with cf and not prioritize his/her interest. Every agenda is important to someone so "the squeaky wheel gets the grease". That means inviting them to Great Strides events and other public cf activities. Politicians like to be important and show up at events. If you are able to coalesce your efforts with other area cf families for the fundraising events you engage, you may well be the de facto lobby for the legislator for cf, a problem that fortunately doesn't have 2 sides. The NIH is headed by Francis Collins, who discovered the CFTR gene.
Of course lobbyists have a bad rap as "special interests" but really, most, although biased to their cause, do present information the legislator can use to make an informed decision before voting. Usually there are at least 2 points of view so there are usually 2 or more lobbyist sources getting the legislators ear. The legislator's intuition and the "best presented" case may win the day. This link seems like a good one covering many genetic based illnesses and what states the newborn screening is done. http://bit.ly/pg8sJu .
The cff has this map to see if your state has screening, and if not, be a lobbyist for those new parents who don't know what you know. http://bit.ly/orsoP3
For new parents, the following site covers much of what has been discussed in this forum. http://bit.ly/nP26Fx . Of course everyone should see what answers the cff.org has for the many questions that come up.
Sorry this may have gotten too long.
If one takes time to see how many legislative proposals elected members have to vote on, one would easily understand why lobbyists are the only practical means for legislators to learn what's in the bills requiring a vote. Further, your legislator may not be familiar with cf and not prioritize his/her interest. Every agenda is important to someone so "the squeaky wheel gets the grease". That means inviting them to Great Strides events and other public cf activities. Politicians like to be important and show up at events. If you are able to coalesce your efforts with other area cf families for the fundraising events you engage, you may well be the de facto lobby for the legislator for cf, a problem that fortunately doesn't have 2 sides. The NIH is headed by Francis Collins, who discovered the CFTR gene.
Of course lobbyists have a bad rap as "special interests" but really, most, although biased to their cause, do present information the legislator can use to make an informed decision before voting. Usually there are at least 2 points of view so there are usually 2 or more lobbyist sources getting the legislators ear. The legislator's intuition and the "best presented" case may win the day. This link seems like a good one covering many genetic based illnesses and what states the newborn screening is done. http://bit.ly/pg8sJu .
The cff has this map to see if your state has screening, and if not, be a lobbyist for those new parents who don't know what you know. http://bit.ly/orsoP3
For new parents, the following site covers much of what has been discussed in this forum. http://bit.ly/nP26Fx . Of course everyone should see what answers the cff.org has for the many questions that come up.
Sorry this may have gotten too long.
I don't mean to interfere with proven awareness protocols such as writing to the NIH, but I believe everyone should make sure their federal and state legislators and governors are not only familiar with the issues of cf but also know you are a concerned and vocal advocate. http://1.usa.gov/NxlC. Including for Pancrecarb.
<br />
<br />If one takes time to see how many legislative proposals elected members have to vote on, one would easily understand why lobbyists are the only practical means for legislators to learn what's in the bills requiring a vote. Further, your legislator may not be familiar with cf and not prioritize his/her interest. Every agenda is important to someone so "the squeaky wheel gets the grease". That means inviting them to Great Strides events and other public cf activities. Politicians like to be important and show up at events. If you are able to coalesce your efforts with other area cf families for the fundraising events you engage, you may well be the de facto lobby for the legislator for cf, a problem that fortunately doesn't have 2 sides. The NIH is headed by Francis Collins, who discovered the CFTR gene.
<br />
<br />Of course lobbyists have a bad rap as "special interests" but really, most, although biased to their cause, do present information the legislator can use to make an informed decision before voting. Usually there are at least 2 points of view so there are usually 2 or more lobbyist sources getting the legislators ear. The legislator's intuition and the "best presented" case may win the day. This link seems like a good one covering many genetic based illnesses and what states the newborn screening is done. http://bit.ly/pg8sJu .
<br />
<br />The cff has this map to see if your state has screening, and if not, be a lobbyist for those new parents who don't know what you know. http://bit.ly/orsoP3
<br />
<br />For new parents, the following site covers much of what has been discussed in this forum. http://bit.ly/nP26Fx . Of course everyone should see what answers the cff.org has for the many questions that come up.
<br />
<br />Sorry this may have gotten too long.
<br />
<br />
<br />If one takes time to see how many legislative proposals elected members have to vote on, one would easily understand why lobbyists are the only practical means for legislators to learn what's in the bills requiring a vote. Further, your legislator may not be familiar with cf and not prioritize his/her interest. Every agenda is important to someone so "the squeaky wheel gets the grease". That means inviting them to Great Strides events and other public cf activities. Politicians like to be important and show up at events. If you are able to coalesce your efforts with other area cf families for the fundraising events you engage, you may well be the de facto lobby for the legislator for cf, a problem that fortunately doesn't have 2 sides. The NIH is headed by Francis Collins, who discovered the CFTR gene.
<br />
<br />Of course lobbyists have a bad rap as "special interests" but really, most, although biased to their cause, do present information the legislator can use to make an informed decision before voting. Usually there are at least 2 points of view so there are usually 2 or more lobbyist sources getting the legislators ear. The legislator's intuition and the "best presented" case may win the day. This link seems like a good one covering many genetic based illnesses and what states the newborn screening is done. http://bit.ly/pg8sJu .
<br />
<br />The cff has this map to see if your state has screening, and if not, be a lobbyist for those new parents who don't know what you know. http://bit.ly/orsoP3
<br />
<br />For new parents, the following site covers much of what has been discussed in this forum. http://bit.ly/nP26Fx . Of course everyone should see what answers the cff.org has for the many questions that come up.
<br />
<br />Sorry this may have gotten too long.
<br />
DS was on Pancrease, but had to switch to Creon last August instead of automatically going to Pancreaze. BCBS still will only approve Creon and more recently Zenpep this past April and from our correspondence last fall don't intend to approve Pancreaze any time soon.
DS was on Pancrease, but had to switch to Creon last August instead of automatically going to Pancreaze. BCBS still will only approve Creon and more recently Zenpep this past April and from our correspondence last fall don't intend to approve Pancreaze any time soon.
DS was on Pancrease, but had to switch to Creon last August instead of automatically going to Pancreaze. BCBS still will only approve Creon and more recently Zenpep this past April and from our correspondence last fall don't intend to approve Pancreaze any time soon.