Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Hello all!Just wondering if I can hear from the group about which nebulizer meds you areusing. My son, Sammy- 8yrs old- is not able to take Pulmozyme anymore.My health insurance company has refused to pay the $2300 per month.NOT COST FEASIBLE!! I have been at my company for 21 years and thisis how I am thanked for all these years of service!His Mayo Clinic drs say to try Hydrotonic Saline. Just have to do a few puffsof albuteral 10 mins prior. He was just doing SO well on Pulmozyme.I have gone to my H-R and to my union. I have had 3 different pulmonologistsappeal this. I have now contacted my senator a democrat, so maybe he'll help.I also emailed my congressman, I do not expect anything from him tho.Are any of you on Hydrotonic Saline? Is that the med that leaves a dirty filmall over everything in the room? I honestly don't care, I will re-paint the room when he leaves for college.Sammy was just diagnosed with bronchitis last Friday. He was placed on a3 day course of zythromax. He's just so lethargic and now has edema!He was on Pulmozyme for 2 yrs and 1 month and Mayo said that he wason his way to being cured. He played BASEBALL last summer! Now hecan barely get out of bed. I hate American Insurance Companies. Theyare a FOR PROFIT business. Buyer beware. Any advice any of you cangive would be s appreciated Thank You, all of you! Be well and breatheeasy... e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 usually when a company turns down a med, it's because there is a generic available. and if not, your doctor should be able to petition your company saying that there is no substitute. I use albuterol. probably not equal to each other. other members should be able to tell you if there is a substitute or your pharmacist prob can. Re: which neb meds Hello all!Just wondering if I can hear from the group about which nebulizer meds you areusing. My son, Sammy- 8yrs old- is not able to take Pulmozyme anymore.My health insurance company has refused to pay the $2300 per month.NOT COST FEASIBLE!! I have been at my company for 21 years and thisis how I am thanked for all these years of service!His Mayo Clinic drs say to try Hydrotonic Saline. Just have to do a few puffsof albuteral 10 mins prior. He was just doing SO well on Pulmozyme.I have gone to my H-R and to my union. I have had 3 different pulmonologistsappeal this. I have now contacted my senator a democrat, so maybe he'll help.I also emailed my congressman, I do not expect anything from him tho.Are any of you on Hydrotonic Saline? Is that the med that leaves a dirty filmall over everything in the room? I honestly don't care, I will re-paint the room when he leaves for college.Sammy was just diagnosed with bronchitis last Friday. He was placed on a3 day course of zythromax. He's just so lethargic and now has edema!He was on Pulmozyme for 2 yrs and 1 month and Mayo said that he wason his way to being cured. He played BASEBALL last summer! Now hecan barely get out of bed. I hate American Insurance Companies. Theyare a FOR PROFIT business. Buyer beware. Any advice any of you cangive would be s appreciated Thank You, all of you! Be well and breatheeasy... e No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1204 / Virus Database: 1435/3441 - Release Date: 02/13/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 I assume your son has cystic fibrosis. I found the following info which you might want to follow-up.<Genentech is committed to helping all patients get access to Pulmozyme. Pulmozyme Access Solutions is a free program that can help you find assistance and informational resources available to you.To speak live with one of our specialists, call 1- from 6:00 am to 5:00 pm PT, Monday to Friday, or fax1-, or visit www.PulmozymeAccessSolutions.com.>Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Dear e, I hate American Insurance Companies. They are a FOR PROFIT business. Buyer beware............. YOU ARE SO RIGHT...IT'S DISGUSTING....THEY ARE BEYOND GREEDY!!!! Too bad we don't have GOVERNMENT INSURANCE like Congress has!! I had that problem when I had pneumonia and a pseudomonis infection. My VFend had a $2,000/mo. deductible and I needed it for 4 months. Humana would not lower the deductible no matter what the Drs. said, and told me to try and get Medicaid, which I refused to do. My pharmacist told me to contact Pfizer, which I did. They sent me not 4 months, but 8 months of meds. I am very grateful to them as the substandard meds that Humana would pay for would not be as effective. VFend is the best and I feel great now. So my suggestion is to contact the manufacturer and see if they have a Patient Assistance Program. Best of luck to you. EILEEN EILEEN Subject: Re: which neb medsTo: bronchiectasis Date: Monday, February 14, 2011, 9:44 AM usually when a company turns down a med, it's because there is a generic available. and if not, your doctor should be able to petition your company saying that there is no substitute. I use albuterol. probably not equal to each other. other members should be able to tell you if there is a substitute or your pharmacist prob can. Re: which neb meds Hello all!Just wondering if I can hear from the group about which nebulizer meds you areusing. My son, Sammy- 8yrs old- is not able to take Pulmozyme anymore.My health insurance company has refused to pay the $2300 per month.NOT COST FEASIBLE!! I have been at my company for 21 years and thisis how I am thanked for all these years of service!His Mayo Clinic drs say to try Hydrotonic Saline. Just have to do a few puffsof albuteral 10 mins prior. He was just doing SO well on Pulmozyme.I have gone to my H-R and to my union. I have had 3 different pulmonologistsappeal this. I have now contacted my senator a democrat, so maybe he'll help.I also emailed my congressman, I do not expect anything from him tho.Are any of you on Hydrotonic Saline? Is that the med that leaves a dirty filmall over everything in the room? I honestly don't care, I will re-paint the room when he leaves for college.Sammy was just diagnosed with bronchitis last Friday. He was placed on a3 day course of zythromax. He's just so lethargic and now has edema!He was on Pulmozyme for 2 yrs and 1 month and Mayo said that he wason his way to being cured. He played BASEBALL last summer! Now hecan barely get out of bed. I hate American Insurance Companies. Theyare a FOR PROFIT business. Buyer beware. Any advice any of you cangive would be s appreciated Thank You, all of you! Be well and breatheeasy... e No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1204 / Virus Database: 1435/3441 - Release Date: 02/13/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Yes I wish there was a generic, though I have had bad luck with generics, myself. I would still @ least give it a try for my son. This drug, Pulmozyme is actually live enzymes that actually attack the DNA that make the mucous that is causing all Bronch patients the issues. It's only approved by the FDA for one treatment, the control of CF. My son has been tested all different ways by several different docs and clinics from Orlando to Rochester, Mn. and he does NOT have CF. My son has idiopathic bronchiectasis. He falls into a category that is not seen often in such little guys. Even Mayo has no idea what brought this on in him. He still has cylindrical bronchiectasis, which by definition is curable. But now since UNITED HEALTHCARE refuses to pay the $2300 per month, my son is back on anti-biotics and is exhausted. I just talked to my senator's office, they are more than willing to help! I am so glad for his help. They actually have 2 counselors that specialize in issues w/ ins companies and such things. Depending on how much they can do for me, I'll let everyone know if that's a good option for any future battle w/ their own U.S. ins companies. Thieves, I tell you, all of them are thieves! Happy Valentine's Day! eSubject: Re: which neb medsTo: bronchiectasis Date: Monday, February 14, 2011, 9:44 AM usually when a company turns down a med, it's because there is a generic available. and if not, your doctor should be able to petition your company saying that there is no substitute. I use albuterol. probably not equal to each other. other members should be able to tell you if there is a substitute or your pharmacist prob can. Re: which neb meds Hello all!Just wondering if I can hear from the group about which nebulizer meds you areusing. My son, Sammy- 8yrs old- is not able to take Pulmozyme anymore.My health insurance company has refused to pay the $2300 per month.NOT COST FEASIBLE!! I have been at my company for 21 years and thisis how I am thanked for all these years of service!His Mayo Clinic drs say to try Hydrotonic Saline. Just have to do a few puffsof albuteral 10 mins prior. He was just doing SO well on Pulmozyme.I have gone to my H-R and to my union. I have had 3 different pulmonologistsappeal this. I have now contacted my senator a democrat, so maybe he'll help.I also emailed my congressman, I do not expect anything from him tho.Are any of you on Hydrotonic Saline? Is that the med that leaves a dirty filmall over everything in the room? I honestly don't care, I will re-paint the room when he leaves for college.Sammy was just diagnosed with bronchitis last Friday. He was placed on a3 day course of zythromax. He's just so lethargic and now has edema!He was on Pulmozyme for 2 yrs and 1 month and Mayo said that he wason his way to being cured. He played BASEBALL last summer! Now hecan barely get out of bed. I hate American Insurance Companies. Theyare a FOR PROFIT business. Buyer beware. Any advice any of you cangive would be s appreciated Thank You, all of you! Be well and breatheeasy... e No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1204 / Virus Database: 1435/3441 - Release Date: 02/13/11 Don't get soaked. Take a quick peek at the forecast with theYahoo! Search weather shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Eileen, Hello and Happy Valentine's Day!Yes I was all signed up to start receiving a grant for Sam's meds from Genetec and then they realized that he is NOT a CF patient. So Pulmozyme has been written off-label for him for over 2 years, by 3 different doctors that ALL agree that he NEEDS this medication! I even got my own union involved to go after United Healthcare, They explained to my union rep that my son's medication is just not cost effective! Can you imagine?? A little 8 year old boy! Capitalism, what a LOVE STORY and on Valentine's Day, no less! Kris Subject: Re: which neb medsTo: bronchiectasis Date: Monday, February 14, 2011, 9:44 AM usually when a company turns down a med, it's because there is a generic available. and if not, your doctor should be able to petition your company saying that there is no substitute. I use albuterol. probably not equal to each other. other members should be able to tell you if there is a substitute or your pharmacist prob can. Re: which neb meds Hello all!Just wondering if I can hear from the group about which nebulizer meds you areusing. My son, Sammy- 8yrs old- is not able to take Pulmozyme anymore.My health insurance company has refused to pay the $2300 per month.NOT COST FEASIBLE!! I have been at my company for 21 years and thisis how I am thanked for all these years of service!His Mayo Clinic drs say to try Hydrotonic Saline. Just have to do a few puffsof albuteral 10 mins prior. He was just doing SO well on Pulmozyme.I have gone to my H-R and to my union. I have had 3 different pulmonologistsappeal this. I have now contacted my senator a democrat, so maybe he'll help.I also emailed my congressman, I do not expect anything from him tho.Are any of you on Hydrotonic Saline? Is that the med that leaves a dirty filmall over everything in the room? I honestly don't care, I will re-paint the room when he leaves for college.Sammy was just diagnosed with bronchitis last Friday. He was placed on a3 day course of zythromax. He's just so lethargic and now has edema!He was on Pulmozyme for 2 yrs and 1 month and Mayo said that he wason his way to being cured. He played BASEBALL last summer! Now hecan barely get out of bed. I hate American Insurance Companies. Theyare a FOR PROFIT business. Buyer beware. Any advice any of you cangive would be s appreciated Thank You, all of you! Be well and breatheeasy... e No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1204 / Virus Database: 1435/3441 - Release Date: 02/13/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 You could petition the drug company, and ask them why the stuff is so prohibitively expensive that insurance companies, let alone individuals, can't even pay for it! The problem starts there, I would think. I am so sorry for Sammy's troubles. It has been interesting to read about zythromax, since I was only able to get rid of a year's long infection when I was finally switched from treatments with azythromycin to amoxicillin/clavulanic acid for a standard treatment period. The infection that had plagued me for years was not responding to the azythromycin, but did to the other drug. It was such a blessing to not have the constant low-grade mucus accumulation, hour long nightly percussion sessions, and more or less constant feeling of unwellness. I guess different things work for different people, but what a life-draining experience trying to find the right combination of treatments! I still sometimes get mucus in my lungs when I get a cold and it lingers for a few weeks, but so far I've only had to repeat the amoxicillin once, after a mild case of the H1N1 flu it settled in my lungs. Again, the amox did the job. Whatever works for each of us is the message, I guess. Kay Re: which neb meds Hello all!Just wondering if I can hear from the group about which nebulizer meds you areusing. My son, Sammy- 8yrs old- is not able to take Pulmozyme anymore.My health insurance company has refused to pay the $2300 per month.NOT COST FEASIBLE!! I have been at my company for 21 years and thisis how I am thanked for all these years of service!His Mayo Clinic drs say to try Hydrotonic Saline. Just have to do a few puffsof albuteral 10 mins prior. He was just doing SO well on Pulmozyme.I have gone to my H-R and to my union. I have had 3 different pulmonologistsappeal this. I have now contacted my senator a democrat, so maybe he'll help.I also emailed my congressman, I do not expect anything from him tho.Are any of you on Hydrotonic Saline? Is that the med that leaves a dirty filmall over everything in the room? I honestly don't care, I will re-paint the room when he leaves for college.Sammy was just diagnosed with bronchitis last Friday. He was placed on a3 day course of zythromax. He's just so lethargic and now has edema!He was on Pulmozyme for 2 yrs and 1 month and Mayo said that he wason his way to being cured. He played BASEBALL last summer! Now hecan barely get out of bed. I hate American Insurance Companies. Theyare a FOR PROFIT business. Buyer beware. Any advice any of you cangive would be s appreciated Thank You, all of you! Be well and breatheeasy... e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Capitalism, what a LOVE STORY.......................................... Oh, but we have plenty money for Bombs and a $7 BILLION dollar tax break for the richest 1% and plenty of money for foreign aid, but for the poor and middle class, there is no money..........just excuses! EILEEN Subject: Re: which neb medsTo: bronchiectasis Date: Monday, February 14, 2011, 9:44 AM usually when a company turns down a med, it's because there is a generic available. and if not, your doctor should be able to petition your company saying that there is no substitute. I use albuterol. probably not equal to each other. other members should be able to tell you if there is a substitute or your pharmacist prob can. Re: which neb meds Hello all!Just wondering if I can hear from the group about which nebulizer meds you areusing. My son, Sammy- 8yrs old- is not able to take Pulmozyme anymore.My health insurance company has refused to pay the $2300 per month.NOT COST FEASIBLE!! I have been at my company for 21 years and thisis how I am thanked for all these years of service!His Mayo Clinic drs say to try Hydrotonic Saline. Just have to do a few puffsof albuteral 10 mins prior. He was just doing SO well on Pulmozyme.I have gone to my H-R and to my union. I have had 3 different pulmonologistsappeal this. I have now contacted my senator a democrat, so maybe he'll help.I also emailed my congressman, I do not expect anything from him tho.Are any of you on Hydrotonic Saline? Is that the med that leaves a dirty filmall over everything in the room? I honestly don't care, I will re-paint the room when he leaves for college.Sammy was just diagnosed with bronchitis last Friday. He was placed on a3 day course of zythromax. He's just so lethargic and now has edema!He was on Pulmozyme for 2 yrs and 1 month and Mayo said that he wason his way to being cured. He played BASEBALL last summer! Now hecan barely get out of bed. I hate American Insurance Companies. Theyare a FOR PROFIT business. Buyer beware. Any advice any of you cangive would be s appreciated Thank You, all of you! Be well and breatheeasy... e No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1204 / Virus Database: 1435/3441 - Release Date: 02/13/11 The fish are biting. Get more visitors on your site using Yahoo! Search Marketing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 I hadn't read the newer posts when I suggested contacting the drug manufacturer... Kay Re: which neb meds Hello all!Just wondering if I can hear from the group about which nebulizer meds you areusing. My son, Sammy- 8yrs old- is not able to take Pulmozyme anymore.My health insurance company has refused to pay the $2300 per month.NOT COST FEASIBLE!! I have been at my company for 21 years and thisis how I am thanked for all these years of service!His Mayo Clinic drs say to try Hydrotonic Saline. Just have to do a few puffsof albuteral 10 mins prior. He was just doing SO well on Pulmozyme.I have gone to my H-R and to my union. I have had 3 different pulmonologistsappeal this. I have now contacted my senator a democrat, so maybe he'll help.I also emailed my congressman, I do not expect anything from him tho.Are any of you on Hydrotonic Saline? Is that the med that leaves a dirty filmall over everything in the room? I honestly don't care, I will re-paint the room when he leaves for college.Sammy was just diagnosed with bronchitis last Friday. He was placed on a3 day course of zythromax. He's just so lethargic and now has edema!He was on Pulmozyme for 2 yrs and 1 month and Mayo said that he wason his way to being cured. He played BASEBALL last summer! Now hecan barely get out of bed. I hate American Insurance Companies. Theyare a FOR PROFIT business. Buyer beware. Any advice any of you cangive would be s appreciated Thank You, all of you! Be well and breatheeasy... e No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1204 / Virus Database: 1435/3441 - Release Date: 02/13/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Kistine I had bronch from childhood - was fully widespread all lobes by age 18. I'm now 58. Have fibrosis and lots cysts (tho negative tested CF). Idiopathic bronch. (tho did have 'extenuating' circumstances in infancy. At least there's more info now than my Mum had, better management, better meds (I had penicillin or penicillin - hit or miss dosages). So he has a better chance of living ok with it than I've had. And I've climbed a volcano (semi-live) & a few other smaller mountains, gorges etc; traveled (well, not really far, but still did), got a degree, worked o/s for a year ... Couldn't hold down jobs well, got sick too often, but then there were my own life situations that won't be anything to do with your sons'. What I'm trying to say is that is goes in cycles through life, you learn coping skills, and determination. What i really lacked were doctors who gave me useful help, and really no-one ever to ask anything until I joined this group 3 years ago. So your son is way out in front!! hugs, joy Quote Link to comment Share on other sites More sharing options...
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