Adult decision

Posted on: Sat, 02/18/2006 - 2:13pm
Peg541's picture
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So my son got the OK for Xolair. He's 21 and a Junior in College.

We found out that our insurance pays 20% so the Xolair will cost us $599.00 per month. Two injections per month.

DH said go ahead and do it. I am astounded that we will have to give up EVERYTHING in order to pay for the Xolair. DH says we won't but I can see it getting really tough in the future.

I told DS what his dad said and I promised him I'd try to find out if the drug company can help us pay for the Xolair.

DS called me today and said "Mom I don't want the Xolair. I've done this well for 21 years, I know how to manage. I'd rather not."

I said "even if we can get financial assistance?"

DS said he's got a BIG RESPONSIBLE job as RA (resident assistant, actually called Community assistant in his program.) next year at college, he has a tough schedule this and next year and no car. Getting back and forth the maybe 90 miles to get the injection twice a month is going to be almost impossible. I mean I'll do the driving until he can get a car but jeez the Xolair might be his car too. He decided he'll give it a try after graduation, where ever he ends up.

I have to applaud him this tough adult decision. He knows what Xolair can do for him but he also knows his life is too crowded now besides the financial hardship.

I think DH is just afraid to tell him no, knowing what Xolair could do for him but financially it would ruin us right now.

So no Xolair. I mean to write a nice letter to the wonderful doctor who got us approved. I'm proud my son made such a big decision. I wish it were cheaper and easier to obtain but maybe some day in the future.

Peg

Posted on: Sat, 02/18/2006 - 3:19pm
WoozerMom's picture
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You might want to try the following site:
PPARx.org.
It has information about programs that may help your son with payment for the drugs.
Possibly because he is a college student, there could be some help for him here.

Posted on: Sun, 02/19/2006 - 12:02am
Peg541's picture
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Thanks for the info, I'll have my son take a look. I think he is more interested in the time commitment since he cannot get the drug any closer than maybe 90 miles from school.
We'll see. Thanks.
Peg

Posted on: Sun, 02/19/2006 - 12:44am
Anonymous's picture
Anonymous (not verified)

Peg, if this is important to him, then I hope one day he will be able to get it - without the financial or time-frame hardship.
Isn't Xolair still experimental? I didn't think you had to pay for it when it was part of an experiment.
**********
Hope he enjoys the responsibilities of being an RA. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Sun, 02/19/2006 - 2:42am
Peg541's picture
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Joined: 12/29/2002 - 09:00

He was approved for Xolair for his asthma with a wink to his PA.
We'll figure something out I imagine. I'm just proud of him making this decision. The RA job is important to him but will take all of his time. Still he needs this to experience, to mature, as much as he needs the Xolair I guess.
Peg

Posted on: Sun, 02/19/2006 - 7:14am
rebekahc's picture
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Joined: 12/02/1999 - 09:00

If you can swing it financially, your DS should be able to get his Xolair administered in the town where he lives. We get our Xolair through our prescription drug coverage and their pharmacy ships it to our pulmonologist. Circumstances there make it very inconvenient for us to get the injections (usually have to wait about 3 hours), so I checked into getting it done elsewhere. We can have the meds delivered wherever we want - even our house. If I felt comfortable doing the injection we could choose to administer at home. We found two doctors offices (the only two we asked) who are willing to do the injections for us and they would be much more convenient, but DS is comfortable with the nurses at the pulmo for now.
Based on our experience, it seems your DS might be able to have his meds administered at the health clinic on campus, even.
Good luck and don't give up right away. I'm very proud of your DS for making such an important adult decision. He has always seemed to be very mature by your descriptions and stories.
Rebekah

Posted on: Sun, 02/19/2006 - 12:45pm
Peg541's picture
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Thank you folks, this is the kind of information I really need. I am going to start researching tomorrow and maybe this can happen anyway.
Peg

Posted on: Mon, 02/20/2006 - 12:27am
Peg541's picture
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Joined: 12/29/2002 - 09:00

You know I had given up.
Now at 7am I got a phone call from the Xolair coordinator who said she will send our info to the manufacturer to see if we fit into their financial assistance program.
Then they will also let us administer the Xolair ourselves saving DS the trip into Hollywood twice a month.
All in all I used the support I got here to get us this far so I thank you all, sometimes I need someone to say "don't give up Peggy."
Things have been so bad here lately and this Xolair would be one big positive thing we all could use.
Thanks, everyone's support has been invaluable.
Peggy

Posted on: Mon, 02/20/2006 - 2:05am
Anonymous's picture
Anonymous (not verified)

Thanks for explaining Peg. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Good luck!

Posted on: Mon, 02/20/2006 - 2:10am
Peg541's picture
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Joined: 12/29/2002 - 09:00

Anna Marie,
He'd be getting the Xolair for his asthma. That is approved and not experimental and he qualifies.
I forgot you asked this question.
Peg

Posted on: Mon, 02/20/2006 - 3:10am
Daisy's picture
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Joined: 01/16/2006 - 09:00

Peg,
Could he get the shots at the Student Health Center where he attends school? (I remember someone in college getting their allergy shots at our Infirmary b/c she needed to be monitored for 20 min after the shot.)
What a great son you and DH have raised!
Kudos to your DH for wanting it no matter what the cost, and ditto to you for trying to keep costs down for your family.
Best of luck,
Daisy

Posted on: Mon, 02/20/2006 - 3:48am
Peg541's picture
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Joined: 12/29/2002 - 09:00

Yes Daisy I think he can get the shots at school if necessary but I'll bet that if we get approval that won't happen till at least May or June and he'll be home.
This way he can come home for the weekends he needs the shot. The student health at school is certainly another option. I imagine the paperwork is dreadful, I'd rather do it myself anyway.
Peg

Posted on: Mon, 02/20/2006 - 2:54pm
WoozerMom's picture
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Joined: 12/28/2000 - 09:00

I administer shots to my DH, and at first I was very nervous. But now, it is second nature and not at all difficult.
I have a friend who gave himself daily shots for a long time.
I guess we do what we have to do. Good luck to you and your son.

Posted on: Mon, 02/20/2006 - 3:20pm
Peg541's picture
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Joined: 12/29/2002 - 09:00

I'm a nurse so I can do anything I have to do. I'm prepared. LOL I hope my son is.
Thanks
Peg

Posted on: Tue, 02/21/2006 - 12:02am
Anonymous's picture
Anonymous (not verified)

Peg, I think you need a break. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
My thank you was sincere. You did answer my question previously. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Tue, 02/21/2006 - 1:04am
Peg541's picture
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Joined: 12/29/2002 - 09:00

Anna Marie and my answer was sincere also.
I saw that you had asked me if the drug was experimental and I remembered I had not answered your question.
I wanted to do that because it was important for people to know that my son is getting the drug for his asthma not his PA although we'd rather it were approved for his and everyone else's PA it'll hit both problems at once.
Peggy

Posted on: Thu, 03/16/2006 - 2:15pm
rebekahc's picture
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Joined: 12/02/1999 - 09:00

Peggy ~ Any news on DS getting Xolair?
Rebekah

Posted on: Thu, 03/16/2006 - 3:19pm
Peg541's picture
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Joined: 12/29/2002 - 09:00

Rebekah, thank you for asking. We got a fax from the coordinator this week and we are waiting for paperwork to start a search for funding. We have our fingers crossed.
Peg

Posted on: Fri, 03/17/2006 - 8:58am
rebekahc's picture
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Joined: 12/02/1999 - 09:00

Mine are crossed as well! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Rebekah

Posted on: Fri, 03/17/2006 - 9:21am
starlight's picture
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Joined: 01/16/2004 - 09:00

Hi Peg, I asked you a ? in your first Xolair thread, but it was way back in January when you were first talking about it. And I have another new question too.
old question: Say in ten years, they come up with and approve a peanut vaccine. Could your DS stop taking the Xolair? I think I read somewhere that stopping the xolair causes the immune system to go into overdrive, is that true?
new question: if/when your son starts taking the xolair, is he planning on eating "may contains"? Reason I ask is because I don't think xolair would truly benefit me since I haven't had a reaction in close to 20 years, but if it allows PA people to eat "may contains"...well, I'd kill for a Little Debbie snack cake.
Thanks Peg [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 03/17/2006 - 12:10pm
Peg541's picture
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Joined: 12/29/2002 - 09:00

Starlight,
I am not sure about the first question. We will ask all of that once we get funding. I am also wanting to know that.
And no he probably won't eat may contains but he would like to be able to make a mistake once in awhile and eat one anyway.
He's got airborne reactions now which are troubling and he's looking forward to getting rid of them.
Peg

Posted on: Sat, 02/18/2006 - 3:19pm
WoozerMom's picture
Offline
Joined: 12/28/2000 - 09:00

You might want to try the following site:
PPARx.org.
It has information about programs that may help your son with payment for the drugs.
Possibly because he is a college student, there could be some help for him here.

Posted on: Sun, 02/19/2006 - 12:02am
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

Thanks for the info, I'll have my son take a look. I think he is more interested in the time commitment since he cannot get the drug any closer than maybe 90 miles from school.
We'll see. Thanks.
Peg

Posted on: Sun, 02/19/2006 - 12:44am
Anonymous's picture
Anonymous (not verified)

Peg, if this is important to him, then I hope one day he will be able to get it - without the financial or time-frame hardship.
Isn't Xolair still experimental? I didn't think you had to pay for it when it was part of an experiment.
**********
Hope he enjoys the responsibilities of being an RA. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Sun, 02/19/2006 - 2:42am
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

He was approved for Xolair for his asthma with a wink to his PA.
We'll figure something out I imagine. I'm just proud of him making this decision. The RA job is important to him but will take all of his time. Still he needs this to experience, to mature, as much as he needs the Xolair I guess.
Peg

Posted on: Sun, 02/19/2006 - 7:14am
rebekahc's picture
Offline
Joined: 12/02/1999 - 09:00

If you can swing it financially, your DS should be able to get his Xolair administered in the town where he lives. We get our Xolair through our prescription drug coverage and their pharmacy ships it to our pulmonologist. Circumstances there make it very inconvenient for us to get the injections (usually have to wait about 3 hours), so I checked into getting it done elsewhere. We can have the meds delivered wherever we want - even our house. If I felt comfortable doing the injection we could choose to administer at home. We found two doctors offices (the only two we asked) who are willing to do the injections for us and they would be much more convenient, but DS is comfortable with the nurses at the pulmo for now.
Based on our experience, it seems your DS might be able to have his meds administered at the health clinic on campus, even.
Good luck and don't give up right away. I'm very proud of your DS for making such an important adult decision. He has always seemed to be very mature by your descriptions and stories.
Rebekah

Posted on: Sun, 02/19/2006 - 12:45pm
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

Thank you folks, this is the kind of information I really need. I am going to start researching tomorrow and maybe this can happen anyway.
Peg

Posted on: Mon, 02/20/2006 - 12:27am
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

You know I had given up.
Now at 7am I got a phone call from the Xolair coordinator who said she will send our info to the manufacturer to see if we fit into their financial assistance program.
Then they will also let us administer the Xolair ourselves saving DS the trip into Hollywood twice a month.
All in all I used the support I got here to get us this far so I thank you all, sometimes I need someone to say "don't give up Peggy."
Things have been so bad here lately and this Xolair would be one big positive thing we all could use.
Thanks, everyone's support has been invaluable.
Peggy

Posted on: Mon, 02/20/2006 - 2:05am
Anonymous's picture
Anonymous (not verified)

Thanks for explaining Peg. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Good luck!

Posted on: Mon, 02/20/2006 - 2:10am
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

Anna Marie,
He'd be getting the Xolair for his asthma. That is approved and not experimental and he qualifies.
I forgot you asked this question.
Peg

Posted on: Mon, 02/20/2006 - 3:10am
Daisy's picture
Offline
Joined: 01/16/2006 - 09:00

Peg,
Could he get the shots at the Student Health Center where he attends school? (I remember someone in college getting their allergy shots at our Infirmary b/c she needed to be monitored for 20 min after the shot.)
What a great son you and DH have raised!
Kudos to your DH for wanting it no matter what the cost, and ditto to you for trying to keep costs down for your family.
Best of luck,
Daisy

Posted on: Mon, 02/20/2006 - 3:48am
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

Yes Daisy I think he can get the shots at school if necessary but I'll bet that if we get approval that won't happen till at least May or June and he'll be home.
This way he can come home for the weekends he needs the shot. The student health at school is certainly another option. I imagine the paperwork is dreadful, I'd rather do it myself anyway.
Peg

Posted on: Mon, 02/20/2006 - 2:54pm
WoozerMom's picture
Offline
Joined: 12/28/2000 - 09:00

I administer shots to my DH, and at first I was very nervous. But now, it is second nature and not at all difficult.
I have a friend who gave himself daily shots for a long time.
I guess we do what we have to do. Good luck to you and your son.

Posted on: Mon, 02/20/2006 - 3:20pm
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

I'm a nurse so I can do anything I have to do. I'm prepared. LOL I hope my son is.
Thanks
Peg

Posted on: Tue, 02/21/2006 - 12:02am
Anonymous's picture
Anonymous (not verified)

Peg, I think you need a break. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
My thank you was sincere. You did answer my question previously. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Tue, 02/21/2006 - 1:04am
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

Anna Marie and my answer was sincere also.
I saw that you had asked me if the drug was experimental and I remembered I had not answered your question.
I wanted to do that because it was important for people to know that my son is getting the drug for his asthma not his PA although we'd rather it were approved for his and everyone else's PA it'll hit both problems at once.
Peggy

Posted on: Thu, 03/16/2006 - 2:15pm
rebekahc's picture
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Joined: 12/02/1999 - 09:00

Peggy ~ Any news on DS getting Xolair?
Rebekah

Posted on: Thu, 03/16/2006 - 3:19pm
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

Rebekah, thank you for asking. We got a fax from the coordinator this week and we are waiting for paperwork to start a search for funding. We have our fingers crossed.
Peg

Posted on: Fri, 03/17/2006 - 8:58am
rebekahc's picture
Offline
Joined: 12/02/1999 - 09:00

Mine are crossed as well! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Rebekah

Posted on: Fri, 03/17/2006 - 9:21am
starlight's picture
Offline
Joined: 01/16/2004 - 09:00

Hi Peg, I asked you a ? in your first Xolair thread, but it was way back in January when you were first talking about it. And I have another new question too.
old question: Say in ten years, they come up with and approve a peanut vaccine. Could your DS stop taking the Xolair? I think I read somewhere that stopping the xolair causes the immune system to go into overdrive, is that true?
new question: if/when your son starts taking the xolair, is he planning on eating "may contains"? Reason I ask is because I don't think xolair would truly benefit me since I haven't had a reaction in close to 20 years, but if it allows PA people to eat "may contains"...well, I'd kill for a Little Debbie snack cake.
Thanks Peg [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 03/17/2006 - 12:10pm
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

Starlight,
I am not sure about the first question. We will ask all of that once we get funding. I am also wanting to know that.
And no he probably won't eat may contains but he would like to be able to make a mistake once in awhile and eat one anyway.
He's got airborne reactions now which are troubling and he's looking forward to getting rid of them.
Peg

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