Re: nebulised drug - Pulmozyme

[Guest guest]

Well! Isn't that painful?? I am on my employer-provided ins United Health Care and since it's thru my employer, I pay $200 per month for myself and my Sammy, the Bronchiectasis patient. It is really amazing that we pay SO much for the samething that alot of other countries' gov't provides to their citizens for just being agood steward of their country. Here, it's all about the mighty buck... We havetoo many men running my employer into the ground and since they are selfinsured, I get what ever is left... And unfortunately, so does Sammy...I am SO glad that all of you have discovered the wonder of Pulmozyme, I really am. A bit envious as well. I wish that the FDA would find it possible to cover that drug for all that show AMAZING improvementson it.. But it's NEVER going

to happen.. I am so thankful that Sammydoes not have Cystic Fibrosis, but I have a friend that has a 4yr oldlittle boy w/ a BAD case of CF, and I see Pulmozyme @ her houseeverytime I go over there. I always remind myself of how glad Iam that Sammy is NOT a CF child... We are all so blessed in ourown way, aren't we?? Best wishes to you ALL KrisSubject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

This is all so very interesting.....ie Pulmozyme......I've been emailing to Mayo and National Jewish Hospital trying to decide where I want to go for an evaluation. The gal at Mayo told me she does not know of Pulmozyne but they are doing studies of inhaled Mannitol for mucoactive therapy. She asked if I would like to be in on the study. She then called me and explained the study. I would have to do 9 visits to Mayo in a year - they would either give me the drug or a placebo. I would have to be screened to be accepted but talking with her, I certainly would qualify. Tonight I got a response from National Jewish and the lung dept. said they only use Pulmozyne for CF patients and not bronchiectasis patients and she wrote they have not heard of Mannitol - Mannitol is

some type of a natural sugar they have developed to loosen and thin the mucus according to Mayo. So Alan, you are the lucky one. Your Dr. has prescribed Pulmozyme for you. I am continually searching for all the information I can get. The Pulmozyme sounds really good to me.

To: bronchiectasis Sent: Mon, April 11, 2011 6:38:57 PMSubject: Re: Re: nebulised drug - Pulmozyme

Well! Isn't that painful?? I am on my employer-provided ins United Health Care and since it's thru my employer, I pay $200 per month for myself and my Sammy, the Bronchiectasis patient. It is really amazing that we pay SO much for the samething that alot of other countries' gov't provides to their citizens for just being agood steward of their country. Here, it's all about the mighty buck... We havetoo many men running my employer into the ground and since they are selfinsured, I get what ever is left... And unfortunately, so does Sammy...I am SO glad that all of you have discovered the wonder of Pulmozyme, I really am. A bit envious as well. I wish that the FDA would find it possible to cover that drug for all that show AMAZING improvementson it.. But it's NEVER going to happen.. I am so thankful that Sammydoes not have Cystic Fibrosis,

but I have a friend that has a 4yr oldlittle boy w/ a BAD case of CF, and I see Pulmozyme @ her houseeverytime I go over there. I always remind myself of how glad Iam that Sammy is NOT a CF child... We are all so blessed in ourown way, aren't we?? Best wishes to you ALL Kris

Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

Kris, that "just being a good steward" of other countries carries a very high cost in the form of very high income taxes, and also in rationing of services. My late husband has English cousins and the taxes they pay are staggering. As for their health care, there are long waits for what the govt calls discretionary treatments, that would automatically be paid for by virtually all health insurance policies here in the US. It's why our most prestigious hospitals/med centers here in the US are filled with wealthy Brits who come here whether than wait 5 years for surgery.The bottom line is that high quality health care is VERY expensive! Count your blessings that you only pay $200 for both you and your son. I pay almost $350 for just me, and that's for an Anthem supplementary (to Medicare) policy through my late husband's employer. We all have to pay someway, either through high taxes, high premiums, or a company passing on the high cost of insuring it's employees by passing that cost onto the consumers of it's services or products. There is no Santa Claus!Sent from my iPadSuzanne R Brown

Well! Isn't that painful?? I am on my employer-provided ins United Health Care and since it's thru my employer, I pay $200 per month for myself and my Sammy, the Bronchiectasis patient. It is really amazing that we pay SO much for the samething that alot of other countries' gov't provides to their citizens for just being agood steward of their country. Here, it's all about the mighty buck... We havetoo many men running my employer into the ground and since they are selfinsured, I get what ever is left... And unfortunately, so does Sammy...I am SO glad that all of you have discovered the wonder of Pulmozyme, I really am. A bit envious as well. I wish that the FDA would find it possible to cover that drug for all that show AMAZING improvementson it.. But it's NEVER going

to happen.. I am so thankful that Sammydoes not have Cystic Fibrosis, but I have a friend that has a 4yr oldlittle boy w/ a BAD case of CF, and I see Pulmozyme @ her houseeverytime I go over there. I always remind myself of how glad Iam that Sammy is NOT a CF child... We are all so blessed in ourown way, aren't we?? Best wishes to you ALL KrisSubject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

Sharyn:That is amazing to me! My son's pulmonolgist @ Mayo in Rochester, Mnis Dr o Pianosi. Now he's in Pediatrics, but the same lab is usedfor both, adults and pediatrics. I know that where my son was fittedfor his vest was also where they fit adults there @ Mayo. Dr Pianosi worked tirelessly to allow my son to continue on the Pulmozyme. So he IS aware of the drug and very committed tomaking sure everyone that needs it at the very least gets a properscript. Good luck w/ all your research! Seems like you have got the best chances @ the 2 clinics/hospitals you've chosen.I love smart women. I scare my husband sometimes, I am soschooled on all this CRAP!! Kris

Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

I am not sure where all of that is coming from.My response was against corporate greed. ONLY!I travel to Heathrow very, very often and I actuallyspeak to Brits and Canadians about the health caresystem under which they are forced to live. I hearBOTH sides. At Mayo Clinic, I run into many Canadiansvery often. I speak to them,as well. The runningtheme is this: they got cared for in their hometownsup to the point that the doctor has maxed out on theamount of chemo, or surgeries, or radiation, reallyany treatment, that they are allowed to use. Then are sent home to wait... And often sale everythingthey own to pay for travel to the U.S. for world-classtreatment. If you read the entire entry I said over & over how lucky we are, how blessed we are. WE,in

the U.S. have amazing health care. I am remindedoften of my good fortune to be an American. :-)I understand quite well the ramifications of a public,socialist-type health care system. Did I come acrossto you as naive? <My husband would get a kick out ofthat!! It's corporate greed keeping my son from thetreatments that could save his 8 YES THAT'S 8 yearold life. And YES, Suzanne, HE still believes in Santa!!!!!I also see that maybe yes you pay more for your ins thanI do, but you could afford an I Pad!! I work many hoursevery week and I cannot spend cash like that... I guessmaybe Santa's been good to you- KrisFrom: ericnkayn@...

Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

Kris - I am thinking the gal I was talking to @ Mayo who works in the Respiratory Research Dept., is not a Dr., so probably has not been educated on Pulmozyme. It sounded like she basically works at getting people enrolled in the study. The head of the Dept. who must be a Dr. surely has heard of this drug. She is sending me the information, but after thinking about it, I don't think I will enroll in the study because I will not be sure I am actually getting Mannitol. Too long of a drive (over 6 hrs. one way) 9 trips in a yr. to possibly just get a placebo. Keep fighting for your Sammy.

To: bronchiectasis Sent: Mon, April 11, 2011 9:13:51 PMSubject: Re: Re: nebulised drug - Pulmozyme

Sharyn:That is amazing to me! My son's pulmonolgist @ Mayo in Rochester, Mnis Dr o Pianosi. Now he's in Pediatrics, but the same lab is usedfor both, adults and pediatrics. I know that where my son was fittedfor his vest was also where they fit adults there @ Mayo. Dr Pianosi worked tirelessly to allow my son to continue on the Pulmozyme. So he IS aware of the drug and very committed tomaking sure everyone that needs it at the very least gets a properscript. Good luck w/ all your research! Seems like you have got the best chances @ the 2 clinics/hospitals you've chosen.I love smart women. I scare my husband sometimes, I am soschooled on all this CRAP!! Kris

Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

The bottom line is that high quality health care is VERY expensive! Count your blessings that you only pay $200 for both you and your son. I pay almost $350 for just me, and that's for an Anthem supplementary (to Medicare) policy through my late husband's employer. We all have to pay someway, either through high taxes, high premiums, or a company passing on the high cost of insuring it's employees by passing that cost onto the consumers of it's services or products. There is no Santa Claus!..............................

I was paying almost $600.00/mo. for 2 years just before I went on Medicare and Humana PLUS deductibles....total out of pocket costs to cover meds, doctors, tests and hospital stays $25,000 out of my pocket. If I didn't have savings (which are now wiped out...I would not have been able to afford my health care and probably would not be here today. Emergency care would not take care of my tests, meds and Dr, visits that we with bronch must have.

This year I required a 4 month treatment with the anti-fungal drug called VFEND......when we reach that stupid donut hole we must pay a huge deductible for brand name meds which in this case is the best med for fungus. My deductible with medicare and humana was $2,000/mo. In this depressed market, I don't even make that amount of money anymore. I had to apply to Pfizer for assistance and they did help me.

This is wrong, wrong, wrong. Tax me higher, I don't mind, but don't keep giving the richest 2%, the corporations, drug companies and insurance companies huge tax breaks and break the backs of the middle class.

The riches 2% were given tax breaks of $700 billion dollars.....just think of how many ways that money could have benefited the sick, the old and the poor....also those without insurance. America the great...I think not anymore! This country is turning into a Fachiest state with the Corporations in contral!!

EILEEN

Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

Unfortunatelly Insurance corps rule in the US. I just heard Republicans have "Draconian Cuts" for medicare in storage. They are unsatiable they will not quit until they destroy Medicare and Social security. They do not give a dam about us. Their pockets are too big. We are lost as long as we have an ignorant and iliterate "prejudice" and selfish population. All they care is about making weapons and playing "Macho" Bully of the block.

EILEEN

Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

Eileen...YES! I said it on here yesterday, Corporate Greed, is an ugly cancereating away at the middle class. I was in NO way complaining aboutpaying $200 for health ins. I know I am damn lucky to have any!I am going in for a thyroid ultrasound on Thurs. (follow up for cancer)and the hospital clinic called today to collect the $120. and 6 centsfrom me 2 days in advance! They WILL get their money, I guess justin case I am really sick they don't want to have to wait until I'm healthyenough to write that check!I just read a front page article re: LOBBYISTS for healthcare providersand clinics/ hospitals in Florida. They listed over 300 lobbyists that represent HMO's, hospitals and a group of doctors in here in FL thatare paying their lobbyists large sums of money to

try to protectTHEIR own interests in a $20 Billion program that the GOP ofFlorida is looking to 'revamp'. The states' responsibility is inquestion when it comes to caring for the sick, elderly, or developmentallydisabled, which by the way has 5 lobbyists going toTallahassee, to compete against the 300 on the 'other side'.I will try to find out which doctors have put their own dollarsup for lobbyists. I will make sure I never trust him/her tocare for my family or me.No gov't is perfect, but for some reason, we have clearlyhave a lot of "people" in my state legislature that have nointerest in the middle class. Scary thing is: the poorestare somehow going to end up getting even poorer. I livein Orlando and we were rated the 5th 'hungriest' city in theU.S. The local gov't has made it illegal to feed the home-less last year. Nice, huh? Kris--- On

Tue, 4/12/11, Eileen wrote:Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Tuesday, April 12, 2011, 5:43 PM

Unfortunatelly Insurance corps rule in the US. I just heard Republicans have "Draconian Cuts" for medicare in storage. They are unsatiable they will not quit until they destroy Medicare and Social security. They do not give a dam about us. Their pockets are too big. We are lost as long as we have an ignorant and iliterate "prejudice" and selfish population. All they care is about making weapons and playing "Macho" Bully of the block.

EILEEN

Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

Well, MY pulmonologist at Weill-Cornell Medical Center in NYC recommended

Pulmozyme and my insurance company approved it immediately (by the way, I still

resent the fact that any insurance company has the last word on my treatment

over what my own doctor says. It couldn't have anything to do with making a

bigger profit for shareholders, could it?).

After a few weeks on this drug I can say that while I am not 'cured' & did not

expect to be, I have had a very good response.

Bronchiectasis sufferers should unite to try any option that can give even hope

of relief from this pulmonary torture.

>

> I had a check-up at my pulmonologist yesterday - doing well enough that I

don't have to go back for 3 months. Yeah!!!

>

> My pulmonologist trained at Washington U Med School - outstanding residency in

pulmonology, worked in pulmonology at Duke U Med School for 14 yrs and was made

chairman of the Dept of Pulmonology at U of Louisville Med School this past

year. So I DO trust his qualifications!

>

> I asked him about Pulmozyme and he said that tests done for NON-CF

bronchiectasis showed not only no benefits, but in some cases it actually made

the bronchiectasis worse. He did say he had no knowledge about its use in

CHILDREN with NON-CF bronchiectasis as they are so very rare and really quite

different to treat.

>

> So, before we all go off demanding this drug and attacking our insurance

companies for not providing it, it IS important to know that research has been

done on its efficacy. He said that at this point, inhaled saline is still the

best for thinning mucus. Trials of the new drug (starts with an " M " ) are in

progress so we don't know if it will be better or not.

>

> Just passing on what I was told.

>

> Suzanne

>

[Guest guest]

Hi Alan,

Well, MY pulmonologist at Weill-Cornell Medical Center in NYC recommended Pulmozyme and my insurance company approved it immediately (by the way, I still resent the fact that any insurance company has the last word on my treatment over what my own doctor says. It couldn't have anything to do with making a bigger profit for shareholders, could it?)..........

I agree and your bet it does!

After a few weeks on this drug I can say that while I am not 'cured' & did not expect to be, I have had a very good response..................................

Glad to hear it.

Bronchiectasis sufferers should unite to try any option that can give even hope of relief from this pulmonary torture......................................

Too bad we don't have the backing or the money of the Lobbyists!!EILEEN

Subject: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Friday, April 15, 2011, 11:06 AM

Well, MY pulmonologist at Weill-Cornell Medical Center in NYC recommended Pulmozyme and my insurance company approved it immediately (by the way, I still resent the fact that any insurance company has the last word on my treatment over what my own doctor says. It couldn't have anything to do with making a bigger profit for shareholders, could it?). After a few weeks on this drug I can say that while I am not 'cured' & did not expect to be, I have had a very good response. Bronchiectasis sufferers should unite to try any option that can give even hope of relief from this pulmonary torture.>> I had a check-up at my pulmonologist yesterday - doing well enough that I don't

have to go back for 3 months. Yeah!!!> > My pulmonologist trained at Washington U Med School - outstanding residency in pulmonology, worked in pulmonology at Duke U Med School for 14 yrs and was made chairman of the Dept of Pulmonology at U of Louisville Med School this past year. So I DO trust his qualifications!> > I asked him about Pulmozyme and he said that tests done for NON-CF bronchiectasis showed not only no benefits, but in some cases it actually made the bronchiectasis worse. He did say he had no knowledge about its use in CHILDREN with NON-CF bronchiectasis as they are so very rare and really quite different to treat. > > So, before we all go off demanding this drug and attacking our insurance companies for not providing it, it IS important to know that research has been done on its efficacy. He said that at this point, inhaled saline is still the best for thinning mucus. Trials of the new drug

(starts with an "M") are in progress so we don't know if it will be better or not.> > Just passing on what I was told.> > Suzanne>

[Guest guest]

Here is a study that was done on using Pulmozyme in patients with

bronchiectasis.

Suzanne

1 of 1 File(s)

2009-09-08_190956_Chest_Bronch_DNA.pdf

[Guest guest]

It should be noted that in this study, subjects received double the normal

dosage recommended for non-CF patients which may have led to exceptional

thinning of mucus making it much harder to expectorate.

Also noted: subjects in this study were less likely to continue using other

forms of chest physiotherapy at the same time which, had they been used, would

logically have made pulmozyme more effective.

So, bottom line: while in no way a cure, I think this drug can be very helpful

as an additional tool to fight this horrible condition. On the other hand, it

should not be relied upon exclusively.

It works for me - my situation is now vastly better.

>

> Here is a study that was done on using Pulmozyme in patients with

bronchiectasis.

>

>

>

>

> Suzanne

>

[Guest guest]

Thank you--that was the experience I have had--also others at my treatment center who are non-cf. Good luck. Judy in MN

Re: nebulised drug - Pulmozyme

It should be noted that in this study, subjects received double the normal dosage recommended for non-CF patients which may have led to exceptional thinning of mucus making it much harder to expectorate. Also noted: subjects in this study were less likely to continue using other forms of chest physiotherapy at the same time which, had they been used, would logically have made pulmozyme more effective.So, bottom line: while in no way a cure, I think this drug can be very helpful as an additional tool to fight this horrible condition. On the other hand, it should not be relied upon exclusively.It works for me - my situation is now vastly better. >> Here is a study that was done on using Pulmozyme in patients with bronchiectasis.> > > > > Suzanne>

[Guest guest]

Hi e,

I can not believe that your local government made it illegal to feed the homeless. What a sad thing to legislate! I also didn't realize how many poor and hungry people live in Orlando. Wow!

My daughter just moved to Florida because of her husband's job transfer. Until she moved I watched my 2 1/2 year old grandson every Saturday and saw him frequently on other days of the week. Before she left I asked her to have him tested for Autism. I saw a regression in him that started last summer. Sadly, he was diagnosed with Autism. Hopefully, he has a mild to moderate form but he is very delayed in receptive and expressive language.

She is struggling to get any services for him. Out of pocket she is paying $1,000.00 a month. I am trying to help her. She works for the largest shoe store in the world and their insurance will not cover any services even with a presrciption by the neurologist. The state is providing her with very minimal services such as speech by a very mediocore therapist once a week.

I am sitting in Illinois waiting to retire in two years. The state has borrowed from our teacher's retirement fund several times and has not been able to pay it all back. They borrowed as recently as two months ago. Economists are predicting a dire situation for teachedrs retiring even though we did contribute to our own pension as well as the school district contributed. The state didn't do their share. Teachers are not allowed social security in Illinois. I paid in to social security in another state and at a second job in Illinois. I am a widow who was married 38 years, and not even allowed my deceased husband's social security.

Meanwhile, Congress is talking about cutting "entitlements" that I have paid in to for over 40 years. I really do believe the poor and the middle class are being hardest hit right now as well as children, the elderly, and those with disabilities.

Somehow, we need to make our voices heard. A country stays economically sound with a strong middle class.

By the way, I developed my bronchiectasis by having repeated pneumonia. The pneumonia was caused by me being in a school with a mold problem. The mold cultured my lungs and sinuses. I also developed chronic sinusitis. The state owed us millions and our district was not maintaining its schools. I became ill in 2001 and was diagnosed in 2006, several months after my husband passed away. It effected other teachers and who knows how many students. It was a school with 99% poverty and the students moved frequently. That is why we never really knew how many children were also sickened from the mold.

I may have told you all this before. I shared this experience when I entered the group. Your letter really struck home to me. I know you have struggled to get the right medicine for your child and you have been turned down by the insurance company. That is sooooo wrong and so sad as well. I hope he will stay healthy with the use of his other meds. I can't imagine what you must feel about the refusal of the insurance company to keep a little boy well. Have you tried talking directly to the drug company?

Cindi

To: bronchiectasis Sent: Tue, April 12, 2011 10:36:03 PMSubject: Re: Re: nebulised drug - Pulmozyme

Eileen...YES! I said it on here yesterday, Corporate Greed, is an ugly cancereating away at the middle class. I was in NO way complaining aboutpaying $200 for health ins. I know I am damn lucky to have any!I am going in for a thyroid ultrasound on Thurs. (follow up for cancer)and the hospital clinic called today to collect the $120. and 6 centsfrom me 2 days in advance! They WILL get their money, I guess justin case I am really sick they don't want to have to wait until I'm healthyenough to write that check!I just read a front page article re: LOBBYISTS for healthcare providersand clinics/ hospitals in Florida. They listed over 300 lobbyists that represent HMO's, hospitals and a group of doctors in here in FL thatare paying their lobbyists large sums of money to try to protectTHEIR own interests in a $20 Billion program that the GOP

ofFlorida is looking to 'revamp'. The states' responsibility is inquestion when it comes to caring for the sick, elderly, or developmentallydisabled, which by the way has 5 lobbyists going toTallahassee, to compete against the 300 on the 'other side'.I will try to find out which doctors have put their own dollarsup for lobbyists. I will make sure I never trust him/her tocare for my family or me.No gov't is perfect, but for some reason, we have clearlyhave a lot of "people" in my state legislature that have nointerest in the middle class. Scary thing is: the poorestare somehow going to end up getting even poorer. I livein Orlando and we were rated the 5th 'hungriest' city in theU.S. The local gov't has made it illegal to feed the home-less last year. Nice, huh? Kris

Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Date: Monday, April 11, 2011, 12:35 PM

Re: nebulised drug - Pulmozyme

I use Empire Blue Cross for health insurance and pay US$1,500/month premium for individual coverage. Co-pay for a big box of pulmozyme is $5. No problem whatsoever to get it.On the other hand, am also currently undergoing chemo for CLL/leukemia. Cost is $33,000/week but my co-pay is $10.

Thanks Alan,

Best of luck with your leukemia treatment. Is Empire in the Northeast U.S.? I'm in CA and we pay $1568 per mo. to Anthem Blue Cross and have $4,000 deductibles, each, per yr. Not good insurance, that's for sure.

Kay

[Guest guest]

I must have been one of the rare cases of not CF as a child. Even though it wasn't diagnosed unitl I was 19, I'm sure I had it as a child. The first specialist I saw thought so too.

Keep well everyone. Theresa

Subject: Re: Re: nebulised drug - PulmozymeTo: bronchiectasis Received: Thursday, 14 April, 2011, 4:47 AM

I had a check-up at my pulmonologist yesterday - doing well enough that I don't have to go back for 3 months. Yeah!!!My pulmonologist trained at Washington U Med School - outstanding residency in pulmonology, worked in pulmonology at Duke U Med School for 14 yrs and was made chairman of the Dept of Pulmonology at U of Louisville Med School this past year. So I DO trust his qualifications!I asked him about Pulmozyme and he said that tests done for NON-CF bronchiectasis showed not only no benefits, but in some cases it actually made the bronchiectasis worse. He did say he had no knowledge about its use in CHILDREN with NON-CF bronchiectasis as they are so very rare and really quite different to treat. So, before we all go off demanding this drug and attacking our insurance companies for not providing it, it IS important to know that research has been done on its efficacy. He said that at this point, inhaled saline is still the

best for thinning mucus. Trials of the new drug (starts with an "M") are in progress so we don't know if it will be better or not.Just passing on what I was told.Suzanne

[Guest guest]

hi Judy,

so agree - again, common sense, keeping a mid-way line, not going to

extremes trying to get a cure - there isn't one anyway!

joy h

[Guest guest]

many things / diseases cause bronchiectasis - one of the being PCD.

If the cilia are damaged, destroyed they can't move mucus up and out

- therefore infx. Enough infxn results in bronch,,,,

joy h

[Guest guest]

hi Alan,

so glad that it turned out something that worked for you - like I

said earlier it's so variable. You may find in the future that it

doesn't quite give same relief. Then's the time to try diff dosage

or product. It's the same for us all, always having to look out for

changes...

joy h

[Guest guest]

Alan, Eileen,

the CF Foundation was set up mostly by parents of kids with CF. If

we set up a Trust, and anyone with a few spare dollars when we pass

on could donate to it, gradually we'd have funds to have some

clout. Anyone like the idea? I figured it this way it wouldn't be

too financially

joy h