Something to get mad about :-(((

May 19, 2003

The relationship between income and survival is a sad statistic indeed,

and it seems to me that here in the usa, where there is no real excuse

for this, that it is avoidable--if only any one were so motivated in our

government to worry about universal medical care for our citizens, and

to base it on tax income to the government rather than piddly litte " tax

refunds " going primarily to the super wealthy--said she, distressedly.

Love to all at cfparents,

n Rojas

May 19, 2003

This is CRAZY because there are so many programs out there to help people

that can't afford medication. I think it has to do with the parents and how

well take care of there child with CF rather then there amount of money they

have. Face it there are parents out there that have kids with CF that don't

give a damn!! And don't have there kids do treatments because it might effect

there social life. It's sad but it is reality. Deb A

May 19, 2003

Managed Care Weekly Digest

May 12, 2003

HEADLINE: CYSTIC FIBROSIS: Income level tied to mortality

The risk of death from cystic fibrosis (CF) is related to the income

level of the family, according to New England medical researchers.

Their study, published in Pediatrics, reports those living with lower

incomes are at a greater risk of death from this disease.

" Financial disadvantage has been shown to have a strong effect on the

health status of individuals, but this effect has never been examined in

cystic fibrosis, " said head author, Dr. Gerald T. O'Connor, professor of

medicine and of community and family medicine.

He led a team of nine researchers from the Northern New England Cystic

Fibrosis Consortium, a regional group of health care professionals that

seeks to improve the quality of care for people with cystic fibrosis.

Participating medical centers include DHMC, Central Maine Medical

Center, Eastern Maine Medical Center, Fletcher Health Care and

Maine Medical Center.

Cystic fibrosis, considered the most frequently occurring lethal

autosomal genetic disease in the white population, affects about 30,000

children and adults in the U.S. Patients produce abnormally thick mucus

in the lungs and pancreas, which causes them to cough, wheeze, and

experience respiratory problems and infections. While there is no cure

for the disease, CF patients are now living longer thanks to advanced

treatments. The researchers wanted to determine if income was a factor.

For the study, the researchers selected records of white patients

throughout the country who were diagnosed with CF before they reached

the age of 18. Clinicians then linked these 23,817 patients with

information from the U.S. census. They adjusted the household incomes

based on state differences in cost of living.

They found a strong association between household income and the death

rate from CF. In the lowest income category, which included families who

earned less than $20,000, the incidence of death was 90.3 per 10,000

person years compared to 62 per 10,000 person years in the highest

income group, which included families who made more than $50,000. This

translates to a 44% increased risk of death among those in the lowest

income category. Furthermore, those in the lowest income group had

reduced pulmonary function and lower body weight.

" The strong effect of low income on outcomes is not yet fully

understood, " said O'Connor. " Detailed studies are in progress to

understand the mechanism by which socioeconomic status plays a role in

clinical outcomes for CF patients. "

May 19, 2003

For somebody like me that was born and raised in a third world

country this is incredible!!!

The USA expends so much money for other countries but can't take care

of their own.

So terribly SAD.

mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf

>

> Managed Care Weekly Digest

> May 12, 2003

> HEADLINE: CYSTIC FIBROSIS: Income level tied to mortality

> The risk of death from cystic fibrosis (CF) is related to the income

> level of the family, according to New England medical researchers.

> Their study, published in Pediatrics, reports those living with

lower

> incomes are at a greater risk of death from this disease.

> " Financial disadvantage has been shown to have a strong effect on

the

> health status of individuals, but this effect has never been

examined in

> cystic fibrosis, " said head author, Dr. Gerald T. O'Connor,

professor of

> medicine and of community and family medicine.

> He led a team of nine researchers from the Northern New England

Cystic

> Fibrosis Consortium, a regional group of health care professionals

that

> seeks to improve the quality of care for people with cystic

fibrosis.

> Participating medical centers include DHMC, Central Maine Medical

> Center, Eastern Maine Medical Center, Fletcher Health Care and

> Maine Medical Center.

> Cystic fibrosis, considered the most frequently occurring lethal

> autosomal genetic disease in the white population, affects about

30,000

> children and adults in the U.S. Patients produce abnormally thick

mucus

> in the lungs and pancreas, which causes them to cough, wheeze, and

> experience respiratory problems and infections. While there is no

cure

> for the disease, CF patients are now living longer thanks to

advanced

> treatments. The researchers wanted to determine if income was a

factor.

> For the study, the researchers selected records of white patients

> throughout the country who were diagnosed with CF before they

reached

> the age of 18. Clinicians then linked these 23,817 patients with

> information from the U.S. census. They adjusted the household

incomes

> based on state differences in cost of living.

> They found a strong association between household income and the

death

> rate from CF. In the lowest income category, which included

families who

> earned less than $20,000, the incidence of death was 90.3 per 10,000

> person years compared to 62 per 10,000 person years in the highest

> income group, which included families who made more than $50,000.

This

> translates to a 44% increased risk of death among those in the

lowest

> income category. Furthermore, those in the lowest income group had

> reduced pulmonary function and lower body weight.

> " The strong effect of low income on outcomes is not yet fully

> understood, " said O'Connor. " Detailed studies are in progress to

> understand the mechanism by which socioeconomic status plays a role

in

> clinical outcomes for CF patients. "

May 20, 2003

It also may have to do with the problem of being able to keep food on the table.

If you don't have much money, a lot of the supplements that we can buy for our

kids cost much more than is affordable. You are right, there may also be a

compliance problem, too but we can't assume that it is all because of that. We

all know how important nutrition is, but even with the programs out there for

people who don't have money for food, they are not able to get the same

nutrition as those who come from more money. The programs we have for food

(like WIC) do not differentiate between kids with CF and the rest of the family.

and WIC ends when the child is 5. Don't be fooled into thinking it is all about

compliance alone. It is probably a combination of things. (the parent's

education probably plays a role here too)

Re: Something to get mad about :-(((

This is CRAZY because there are so many programs out there to help people

that can't afford medication. I think it has to do with the parents and how

well take care of there child with CF rather then there amount of money they

have. Face it there are parents out there that have kids with CF that don't

give a damn!! And don't have there kids do treatments because it might effect

there social life. It's sad but it is reality. Deb A

May 20, 2003

In a message dated 5/20/2003 5:50:55 AM Central Daylight Time,

drea@... writes:

> It also may have to do with the problem of being able to keep food on the

> table. If you don't have much money, a lot of the supplements that we can

> buy for our kids cost much more than is affordable. You are right, there

> may also be a compliance problem, too but we can't assume that it is all

> because of that. We all know how important nutrition is, but even with the

> programs out there for people who don't have money for food, they are not

> able to get the same nutrition as those who come from more money. The

> programs we have for food (like WIC) do not differentiate between kids with

> CF and the rest of the family. and WIC ends when the child is 5. Don't be

> fooled into thinking it is all about compliance alone. It is probably a

> combination of things. (the parent's education probably plays a role here

> too)

>

At our clinic one of the nurses there told me how there are lots of families

that come to the clinic there do not take care of there kids are well as we

do. I am sure it does have to do with there nutrition too but changes are

it's because the parents don't give a damn! If they cared about there child

they would work 2 jobs so they could give there kids the proper nutrition. I

am sorry but I know how there are lots of parents that would rather sit in

front of the TV then work. I never asked to have two kids with CF but I am

not going to sit around I am going to do all I can to keep them as healthy as

possible! Sorry about being down in the dumps about people that don't take

care of there kids but yesterday I just talked to a friend of mine that has

two kids with CF and she is now taking care of a brother in law's two kids

who is so into drugs that he can't take care of his two healthy kids and now

she is taking care of her two with CF and his. It just pisses me off to know

end when people bring kids into this world drown themselves in drugs and want

pity GROW UP!!! Take on RESPONSIBILITIES!! CF or not people need to take care

of there kids or don't have them!! Deb A

May 20, 2003

I think what is sad is the fact they the spend so much time with these

statistics. I wish they would use more of their time finding a cure as they

do on little things don't don't mean much to a parent of a CF child. I

just want a cure! I am sure that that took a lot of work to put together.

look at the research that could've been done in that time.

mother of three ages 6,5,and 4, 6 year old and 4 year old with CF

May 20, 2003

I don't think it has anything to do with actual income. There are tremendous

programs for those who can afford nothing. The " rich " can buy just about

anything they want. I personally believe that in the US it is the middle income

family who gets shafted. They make to much to receive assitance, and way to

little to be able to afford high end treatments.

But money aside, I think that a better indicator than wealth would be parental

knowledge. Lets face it...most people on a really low income are either not

smart or not willing to use it. They didn't finish school, most of them because

they didn't want to obey authority and do the " home work. " When it comes to

dealing with a chronic illness you have to be willing to do both. You have to

obey authority when it is obvious the doctor knows best but you don't want to

face it i.e. initial diagnosis. You have to do your homework when you want to

change your childs protacall an the doctors aren't sure. You need the facts and

figgures to back you up.

With all due respect n you are one intelligent lady. I really believe it

has helped you survive. Those who were only half as intelligent wouldn't make

it out of half of the scrapes that you tell us about. I love you, but I don't

think giving poor people more money is the answer. They need to get up and work

to find and collect what's all ready available. Being poor is no excuse for

having no information resources. Anyone can walk to their nearest library and

surf the net.

Respectfully,

Dawn (whose family is currently considered poor as engineer hubby had to take a

nasty little job when laid off two years ago, but whose children still receive

the utmost care since mom and dad are smart enough to push for it) mom of 4, 7

and under, the youngest wcf

Re: Something to get mad about :-(((

The relationship between income and survival is a sad statistic indeed,

and it seems to me that here in the usa, where there is no real excuse

for this, that it is avoidable--if only any one were so motivated in our

government to worry about universal medical care for our citizens, and

to base it on tax income to the government rather than piddly litte " tax

refunds " going primarily to the super wealthy--said she, distressedly.

Love to all at cfparents,

n Rojas

May 20, 2003

Dear Dawn,

A few weeks ago there was an article on Parade Magazine about hunger

in America, and believe me hunger in America is alive and well. True

there are a lot of programs for the underprivileged, true some people

do not want to help themselves, but the bigger picture is a lot more

complicated than not wanting and not willing to do anything. Before,

a was diagnosed with CF I used to volunteer in just about any

program to feed people, if you ever sit down with some of this

people in a soup kitchen your viewpoint would drastically changed

forever. Now, lets take that mom that came to our soup kitchen, I

used to see her at least once a week, with 4 kids all under 5 and

lets make one of her kids have CF, now think about this, she could

not work, funds had been cut for the headstart program she used to

have her kids in, her subsidised apartment was rat/rouch infected, Do

you think the child with CF would survive very long? Granted

Tennessee has mandatory insurance for all kids under 18, granted

Shelby county, where we live, has food stamps, and wic for children

under 5. You see, it goes even further than that, boy how many times

I wanted to take this mom and many more with me and let her have at

one day of normalcy in their lives!! Sorry, I am taking so long but

as I said before I came from a third world country where things are

very hard, but in America it should not happen. Taxes, true they go

up, we are heavely taxed, but if we don't take care of the

underprivileged now, our problems will be nothing compare to

Venezuela where I come from, it is a matter of time.

mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf

> I don't think it has anything to do with actual income. There are

tremendous programs for those who can afford nothing. The " rich " can

buy just about anything they want. I personally believe that in the

US it is the middle income family who gets shafted. They make to

much to receive assitance, and way to little to be able to afford

high end treatments.

>

> But money aside, I think that a better indicator than wealth would

be parental knowledge. Lets face it...most people on a really low

income are either not smart or not willing to use it. They didn't

finish school, most of them because they didn't want to obey

authority and do the " home work. " When it comes to dealing with a

chronic illness you have to be willing to do both. You have to obey

authority when it is obvious the doctor knows best but you don't want

to face it i.e. initial diagnosis. You have to do your homework when

you want to change your childs protacall an the doctors aren't sure.

You need the facts and figgures to back you up.

>

> With all due respect n you are one intelligent lady. I really

believe it has helped you survive. Those who were only half as

intelligent wouldn't make it out of half of the scrapes that you tell

us about. I love you, but I don't think giving poor people more

money is the answer. They need to get up and work to find and

collect what's all ready available. Being poor is no excuse for

having no information resources. Anyone can walk to their nearest

library and surf the net.

>

> Respectfully,

> Dawn (whose family is currently considered poor as engineer hubby

had to take a nasty little job when laid off two years ago, but whose

children still receive the utmost care since mom and dad are smart

enough to push for it) mom of 4, 7 and under, the youngest wcf

> Re: Something to get mad about :-(((

>

> The relationship between income and survival is a sad statistic

indeed,

> and it seems to me that here in the usa, where there is no real

excuse

> for this, that it is avoidable--if only any one were so motivated

in our

> government to worry about universal medical care for our

citizens, and

> to base it on tax income to the government rather than piddly

litte " tax

> refunds " going primarily to the super wealthy--said she,

distressedly.

> Love to all at cfparents,

> n Rojas

>

May 20, 2003

I agree. We are EXTREMELY lucky in Canada, and particularly in Ontario.

I remember the days of writing the letters to our government reps and

joining the lobby (unpaid patients and families of CF) for meds to be

covered so young adults and families would be able to work when able and

not have to go on social assistance just to ensure meds were covered

....so we have not always been so fortunate.

The coverage differs from province to province and even to some extent

from Clinic to Clinic within the provinces. Even with the extensive

covereage we have, it is still more costly to provide well for someone

with CF and those costs are very significant for some families. In

Ontario, we do pay for our own nebuizers and a minimum of 25 per cent of

the cost of other equipment such as compressors and postural drainage

boards (more than 25 per cent of the cost if we upgrade to more than the

basic models for which the government allows). Not all meds that may be

helpful are covered. For instance, Pulmozyme has not been covered in

Ontario. Tobi has not been covered and so Tobramycin is still the

prescribed choice for inhalation. Various supplements my son takes are

not covered. We happen to think they benefit his health so we pay for

them ourselves. Some people have additional insurance through places of

employment to cover some of the extra costs but many do not. Some are

self-employed and do not have such plans.

Not everyone receives the Children's Handicap benefit ... some fall into

the middle class that just misses being eligible.

Our Foundation just recently won the argument for certain levels of CF

to qualify for the disability deduction in federal taxes.

When a child or spouse with CF is ill or in hospital or waiting for

transplant and a family member takes time off to be with them, it may be

unpaid time. Some choose to have one parent at home full-time to provide

the best care they can but it may stress finances.

Thank goodness, clinic visits and hospital stays are covered but when I

spent 2 weeks staying in the hospital with my son, the costs of eating

out, parking, my husband driving down to visit, and care for our

children at home was not covered.

Paying for babysitters to come into my home, while I was home, and be

trained to do meds and therapy, just to have the opportunity to go out

on a few occassions was an extra expense not covered.

My point is that even though we are extrememly lucky to live where we

have most health costs of CF covered, there are still significant costs

that would be a stress to many. In other places where there are fewer or

no costs covered, it must be extrememly difficult.

jen mavretic wrote:

>I just had to step in. I'm am from Canada and most of

>what kayla needs is paid for by ohip. The cf clinic

>gives out all her medication plus boxes and boxes of

>ensure every month for free, so none of this is a

>concern for me whether i make alot of money or not.

>Kayla also recieves a Children's handicap benefit

>every month of $400 which covers travel to hospitals

>and groceries for high fat high calorie. Hospital

>stays and stuff like that are also free, I couldn't

>even imagine having to pay for any of this as i would

>be on the streets. Health care each country is always

>so different and it is too bad its not all like this.

>The only thing we are lacking is funding for the

>vests, which i hope to see soon. Thanks

>Jen

>

May 20, 2003

You know, I grew up dirt poor and very hungry. You can make it. So I don't

have to sit down with these people...I've been these people. I'm still saying

that the help is out there... You just have to figgure out how to get it...

Dawn mom of 4, 7 and under, the youngest wcf

Re: Something to get mad about :-(((

>

> The relationship between income and survival is a sad statistic

indeed,

> and it seems to me that here in the usa, where there is no real

excuse

> for this, that it is avoidable--if only any one were so motivated

in our

> government to worry about universal medical care for our

citizens, and

> to base it on tax income to the government rather than piddly

litte " tax

> refunds " going primarily to the super wealthy--said she,

distressedly.

> Love to all at cfparents,

> n Rojas

>

May 20, 2003

Well, I would had thought somebody that has been there would be more

sensitive, at any rate, I have never experienced being poor, I am

actually what you would consider an upper class, very well educated,

successful business woman, I speak a few languages and I hope never

to be in the down side of this path call life, but as you may be up

you can go just as quickly down, hey newton's law, not quiet but

paralell. I do believe some people need just a little help and some

need a lot of help, it has been proven that poverty is a disease in

itself and it goes hand in hand with hunger, add CF to the equation,

and life is no longer feasible.

mom of a 9wcf, Venanzio 6 nocf, Pepe 3 nocf

> > I don't think it has anything to do with actual income. There

are

> tremendous programs for those who can afford nothing. The " rich "

can

> buy just about anything they want. I personally believe that in

the

> US it is the middle income family who gets shafted. They make to

> much to receive assitance, and way to little to be able to afford

> high end treatments.

> >

> > But money aside, I think that a better indicator than wealth

would

> be parental knowledge. Lets face it...most people on a really

low

> income are either not smart or not willing to use it. They

didn't

> finish school, most of them because they didn't want to obey

> authority and do the " home work. " When it comes to dealing with

a

> chronic illness you have to be willing to do both. You have to

obey

> authority when it is obvious the doctor knows best but you don't

want

> to face it i.e. initial diagnosis. You have to do your homework

when

> you want to change your childs protacall an the doctors aren't

sure.

> You need the facts and figgures to back you up.

> >

> > With all due respect n you are one intelligent lady. I

really

> believe it has helped you survive. Those who were only half as

> intelligent wouldn't make it out of half of the scrapes that you

tell

> us about. I love you, but I don't think giving poor people more

> money is the answer. They need to get up and work to find and

> collect what's all ready available. Being poor is no excuse for

> having no information resources. Anyone can walk to their

nearest

> library and surf the net.

> >

> > Respectfully,

> > Dawn (whose family is currently considered poor as engineer

hubby

> had to take a nasty little job when laid off two years ago, but

whose

> children still receive the utmost care since mom and dad are

smart

> enough to push for it) mom of 4, 7 and under, the youngest wcf

> > Re: Something to get mad about :-(((

> >

> > The relationship between income and survival is a sad

statistic

> indeed,

> > and it seems to me that here in the usa, where there is no

real

> excuse

> > for this, that it is avoidable--if only any one were so

motivated

> in our

> > government to worry about universal medical care for our

> citizens, and

> > to base it on tax income to the government rather than piddly

> litte " tax

> > refunds " going primarily to the super wealthy--said she,

> distressedly.

> > Love to all at cfparents,

> > n Rojas

> >

May 20, 2003