CF Sufferers in the USA...

[EnglishCFGuy]

Hello again,

As I said, in my previous post here ("CF Men's and Women's Fetility") I am a CF guy in his 20's. I've never been able to ask other CF's questions, so here I am.

This question is one I'd REALLY appreciate some answers to. Yes, I am 100% serious and please, rather than spend time 'questioning motives' I'd appreciate some constructive/informative answers. Don't think I've not been putting in years of thought to this!.....

I am in England, Britain. I am about to finish University with a Degree. However, I would really (for many reasons - employment vocation, personal, etc) like to 'try' moving to USA. I see many people doing it, books written by people who have made 'the move', etc. However, I need a whole bunch of info on an entirely uncovered area: CF!!

In Britain we have the National Health Service (NHS). Here by the virtue of being born 'British' we get free healthcare. As a person you register with a local Doctor and from then on you are entitled to 'turn up' to their Surgery, etc. As for CF's - Well we get directed into a Hospital (I am in a London Respiratroy hospital) and from there you are 'entitled' to treatment. So when it's time for IV's, once the Doctor/your CF Doc, recommends it, you just get admitted.

Now everything I've read regarding USA is that there is NO 'free' NHS. People can't just 'turn up' and aren't just 'given' a Doctor. You have to pay for it. All medical treatment is 'private'. I vaguely understand that most people have Medical Insurance and this pays out if a kid is born with CF and thus that can be used to pay for their treatment through their life.

Now my obvious question is:
"How would I get my CF treated in USA if I'm an English person moving there?".

I guess there are a lot of factors here, like...
# How much money do I have? Well, I'm young and so not that rich!!!
# Would I even be let into the country (eg To be allowed to live there) with a 'previously known and evident' medical condition?

However, all my thinking does prompt the suggestion that:
"If all USA residents have to pay for medical treatment, then LOGICALLY that would mean that all CF sufferers in the USA are either super-rich or dead".

I just don't get it. SURELY that can't be the case??? What about all the 'poor' CF people? How do they survive? I for one know how expensive CF medicenes are!!!

I hate to make this sound so ignorant and uninformed. But this (forum) seems the approriate place to pose this question. Some of my best friends are in USA and I've visited many times over the years. I love the place and the climate is so much kinder to a CF sufferer.

As I said................
I WELCOME ALL FEEDBACK, THOUGHTS AND INSIGHTS.

Thanks.

 

[thelizardqueen]

I hear the same about US Cf patients. I am fortunate that I live in Winnipeg, MB Canada where I do not pay for anything CF related - medications, treatment, etc.

 

[65rosessamurai]

Hello, EnglishCFGuy, welcome to the forum!

I can understand your question, and dillema. One suggestion is whether there is any health care from Britain that can cover you in the U.S.? Or, because the U.S. does not allow free medical coverage, outside of Medicaid, are there any Insurance companies in Britain that are known in the U.S.? Apparently, as soon as you move from Britain, you may be forfeiting the right for the insurance, unless there is somewhere which an agreement between Britain and the U.S. allows some consideration. No doubt, when you return to Britain, I expect that they would give you back the rights to your health care.

I know it's a pain that the U.S. is not structured for "free" medical coverage, but it is part of America's constitution to allow free market. (Sometimes in even the neediest of areas) Perhaps checking with your own Embassy in regards to how health care and you living in the U.S. would work, they may be able to give some guidance and assistance.

I'm sure most people who left Britain (and wrote the books about it) to move to the U.S., didn't have CF, so that was not an issue for them. Maybe I can write a book, the life of a CF'r in Japan!? There's absolutely no CF nothing here, and even though the health insurance in Japan is similar to Britain, There is no CF doctors, either! OF course this brings up an idea that if you find out how to do it, you can write a book about it too, eh?!

I really hope this gives you an idea of where to look for ideas, if you really want to come to the States. If your health is excellent, and your College Major is something quite worth making a lot of money in the States, hopefully you won't have to worry so much about the insurance problems.

Best Regards, and Good Luck,

Fred

 

[cdale613]

Hi EnglishCFGuy,

Well, there are no short answers, but I'll give it a shot.

The US does not have a single payer health care system like the UK (as you know, in the UK, the government is the single payer). In the US, private insurance companies help pay for the health care of individuals who participate in their programs. Those individuals who are uninsured are responsible for paying 100% of their health-related costs. Those individuals who are aged, disabled, and/or very poor MAY (or may not) qualify for varying levels of government provided health insurance.

Private Insurance: generally speaking, employers are the "gate-keepers" to private health insurance in the US. Yes... you are correct, this makes no sense. (for the rest of my post, I will refrain from pointing this out, as it would become redundant and annoying). Anyway, an individual's employer often has a great deal of power in determining the health insurance options for its employees. Employers and employees are equally responsible for paying the costs of purchasing this insurance. Employers are not mandated to provide health insurance to their employees, and employees are not required to chose a plan. Employers who elect to provide health insurance usually get a nice fat tax break from the gov't for doing so. All the specific questions you have about how coverage affects an individuals dependents (husband or wife/ children) varies greatly from plan to plan, as does the specific terms of amounts of coverage, and the amount of out-of-pocket expenses individuals are responsible for.
CF patients who are fortunate enough to be able to work, or have a parent or spouse who works, would get their health care from private insurance.


Uninsured: If you aren't uterly destitute, or extremely disabled, you're usually responsible for 100% of medical costs you incur.

Government Assistance: If you are deemed disabled (very hard to do), or are over the age of 65, you qualify for Medicare - this is government sponsored health care that covers acute hospitalizations and dr. visits, etc. Not suprisingly, its not very good coverage for chronic conditions - it will pay for your care when you get really really sick, but won't pay for a lot of the small stuff that might keep you out of the hospital.

Medicaid is available for individuals who are aged and disabled AND poor. Eligibility criteria and services provided varies wildly depending on which state you live in. In many places, being poor and having CF may not be enough to qualify for this coverage... they'll only give it to you once you are sick enough to be deemed disabled. Being Poor is not enough to gain eligibility, unless you are poor and in a family with children... then, for the sake of the kids, you may be able to get coverage.

Note -- many of these government programs care about US citizenship.... this could impact you greatly.

SO, unless you have a job all lined up waiting for you when you get off the boat, and have health insurance all lined up with it, you may be hard pressed to get health care. Even if you have a job all lined up, you may be denied by your employers health insurance based on "pre-existing condition" clauses, which say that they don't have to cover costs for conditions present before your insurance started. Yes, this is bullsh*t. Once you have insurance, these clauses are somewhat easier to deal with, thanks to several pieces of legislation, the most important one being something called COBRA (Consolidated Omnibus Budget Reconcilation Act of 1986). Anyway, bottom line is that coming from a foriegn country that was smart enough to provide for your health care will probably not help you out here.

SO.... not saying its impossible, but I'd be darn sure if I were you that you 1) had an employer waiting to give you health insurace and 2) that your potential employers health insurance would not deny you. The best people to talk to about that would be your potential employers benefits office AFTER they had hired you (if you talk to them about it first, they may not be so keen on hiring you... sad but true.

OK, that was too long, but good luck to anyone who can say as much in fewer words!!

Chris

25 w/CF

 

[anonymous]

Which state would you plan on moving to? Some states offer gov't assistance to people with CF. California, for example, has the Genetically Handicapped Persons Program (GHPP) and Cystic Fibrosis fits under it's qualifications. It pays for everything that private insurance won't pay for, as long as you get your care at a CF center. You do have to be a resident of Calif. and be over 21 yrs old, though. Like Chris said, there may be requirements for citizenship as well, I don't know.

 

[ReneeP]

Hello EnglishCFGuy,

It's funny how we always want to see what the other side is like...I've always wanted to move to London just to see what life is like. I've never been but have always been fascinated.

There's no doubt that we have excellent health care in the US (not that England doesn't of course), but our system is so much more complicated. Nothing is simple when it comes to healthcare. Nothing's logical either. I am all for living your dream and if you really want to move to the US, I say plan, plan and plan some more. You can do it but you have to be prepared. First thing I'd say is be darn sure you can go back and get your healthcare back in England if you need to. If it doesn't work out for you here, or you just plain hate it, you need something to fall back on. Then I'd say pick a state and study it; the healthcare system, the job market, the climate, etc. I have no idea what kind of work you plan to do but that will also play a roll. When you find the state you want to move to, find out what employers are there. Then most importantly, research the insurance they provide. Know everything about it. Since you've probably never had to worry much about insurance, it would be a good idea to have someone here look at the policy and give you advice. There are little things you may not think of but someone here who's been through it might. (and I don't mean totally healthy people as they probably won't have a clue either... I mean someone who's life depends on the insurance as those are the ones who've learned all the hard lessons).

I know absolutely nothing about moving to the US, becoming a resident or citizen or anything else in that area so I'm of no help there. I do know about insurance (partly from life experience and partly from working in the insurance industry for several years). That I can help with. Even with private insurance you can be out of pocket a whole lot of money. For instance, for each prescription you may pay anywhere from $10.00 out of your pocket to 25% of the cost (which for something like TOBI, is a whole lot of money). Also, for hospital visits or clinic visits you may have to pay the first $500 or $1000 and then pay 20% of the bill after that. (there is usually a yearly out of pocket maximum but it can be pretty high) Keep in mind you will also be paying a premium payment to have the insurance in the first place which could be $25.00 a week or $125.00 a week or more... depending on your employer. That's why I say study the insurance policy with a fine tooth comb. Get a good one and you're set, but those are not the most common ones. They are out there but you have to look for them. As far as a pre-existing condition clause goes, they cannot hold that against you as long as you were previously covered for the past year. Obviously you didn't have private insurance but you were covered. I'm not sure how that will work itself out, but I'm positive you can fight that.

Please don't let anything I've said put a damper on your desire to move. I still say "go for it", just be prepared and cover all your bases. For us in the US, it's that way everytime we move anywhere. Just moving from one state to another is frightening and overwhelming because no two states have the same coverage or rules when it comes to insurance.


Best of luck to you, whatever you decide. I hope to someday visit your part of the world.

 

[Faust]

There are "free clinicis/free hospitals" here in the states, but you have to be poor, and there aren't any free specialty clinics that say are CF clinics that take care of CF people for free, that I know of. There are some programs though. You can get relatively free health care via medicare/medicaid as far as I know. It's a double edged sword with regards to free health care vs private healthcare. People in canada (from what I heard) have their taxes totally raped for their free health care. I'm assuming it's the same in Most parts of Europe. Free health care doesn't just appear, someone has to foot the bill. It all depends on what you valyue I suppose. Work for a company that offers health coverage for say 40 - 80 bucks a month, or get free health care that takes a considerable more than that in taxes from what you earn.

 

[JazzysMom]

I have been to Canada where many of the natives complain about the high taxes paid to subsidize their healthcare. I am not saying it is/isnt a rip off, but at least it is there with no major $$$ up front when you are sick which is probably the least chance of you having $$$. In the US there are many, many people who are uninsured. Some with CF & some without. Many of these people are working class families that make too much for assistance from their states, but dont make enough to handle medical bills/insurance on their own. The problem that compounds things is that with CF you really cant afford to be without medical care, meds &/or insurance of some sort to pay for it so its IMPERATIVE that you research and plan well. This is one political issue here in the U.S. that has people all over the world baffled.......how such a powerful country can have so many citizens without adequate healthcare due to no insurance! Good Luck in your search & endeavers!

 

[Emily65Roses]

I've wanted this country to get government-paid healthcare since I learned what it was. Yes, I know you still pay for it with much higher taxes. But that way, everyone takes care of everyone. There are no people without health insurance just because they can't afford it. The rich take care of the poor, etc. Health insurance is way too important to screw around with, and I wish our stupid country would realize that. My one question everytime this subject comes up is... How come we provide free lawyers for those who can't afford it (Miranda rights, "You have the right to a lawyer. If you cannot afford a lawyer, one will appointed to you.") but not free healthcare??? I understand lawyers are important, but I think healthcare is even more so. What good is a defense attorney in case you get arrested... if you die from lack of proper medical treatment?

Anyway I'm rambling for no reason because you're from the UK and you know how well that healthcare system works. I don't need to sell you on the idea. Hahahaha. But others are right, the healthcare system here is really really complicated. I'm still on my mother's insurance (I'm 21), and can stay so indefinitely because of my disabled status. I can also, however, get on my own if I ever choose to do so (and work a dececnt full-time job with good enough healthcare). Or I can get on my husband's after I'm married. The main thing is that I would make sure you have a job lined up, and adequate healthcare with it (that you can't be denied). After you have that, you're pretty much good to go. But check in very carefully with the healthcare plan. My copays for meds are only $10 a prescription, but as I'm on several different drugs, it can still cost like $100 a month, easily. And a $10 copay is one of the lowest there is. Sad, I know. As for citizenship and stuff, like some of the others, I am of no help whatsoever there. Sorry. Heh.

 

[anonymous]

Simple,

Get a good job, with a good company, and with the job you will receive insurance. You will pay a minimum out of pocket expense for care, though the insurance through your work will cover most things. Larger companies sometimes have better, more comprehensive coverage options. As long as you work you will be insured. Lose your job, and you will be hating life.

Poor people with CF die. No if ands or buts. They receive care up to a point. If it is too expensive, they toss you like yesterdays refuse.

You should probably stay in merry ole' England, unless you already have a job offer.

Best.
Grendel

 

[Emily65Roses]

As Grendel said, poorer people with CF die. If it's too expensive, they won't cover you just because they don't effing feel like it. Can anyone tell I'm still angry? Heh. See here for an example of such "care" :
<a target=new class=ftalternatingbarlinklarge href="http://save-allan.org/
">http://save-allan.org/
</a>

 

[Faust]

Also remember that free health care (via massive taxes) = the system is highly congested. Those who I have talked to have told me if they need something remotely special procedure wise, it takes forever. So, yeah, it has its pluses and downsides.

 

[anonymous]

Hi: My wfe I have had the experience of living in the U.K. while on a graduate sabattical at the Univ. of London. Our two children attended school there. We still have our National Health cards, and have visited the U.K. frequently since 1967. I have family in Northampton, and my cousin was a National Health doctor till his retirement last year. Since "Maggie," health care in the U.K. has declined, but as for distribution, to give you an idea of the difference, sixty million Americans have no health insurance, so they are out of luck unless they get on the welfare rolls. It is quite demeaning for those who are working full time on low income trying to raise a family, but as their income does not meet the limits set by law, they can't get medical care. If you saw the disaster of the hurricane Katrina, hundreds of thousands of poor (mostly blacks) were displaced and lost everything they had as the government failed them. Thousands still have no place to live, and do not know where their loved ones are. What health care they get...which is minimal...is from charity. This is typical of America's general philosophy towards the poor. Through the years, national health care legislation has been proposed, only to lose in Congress due to the lobbying by special interests groups. In reality, Americans have been sold on the ideas that socialism is bad, and as a national health care system would be socialism, it has to be bad, too. Their ignorance is disgusting, so a change to a better system is not in the making. Blair is not exactly a shining example of progressive thinking, but so far, at least you have the semblance of a health care system available for all. We hear nothing but horror stories about Euopean and U.K. health care, most of it fabricated. Economic opportunity exists in the U.S., but before you come over, visit extensively if you can. Our many friends and relatives in the U.K. rarely visit now, as visa difficulties make it a problem. I wish you good health, and please contact me via the net if you wish. Hal (74 2/3rds years old with CF) hasoloff@snet.net

 

[Faust]

Just wait till Lord Bush is out of office. The next election, there will be a massive left leaning president in office, and there will be many changes. I'm independent myself, but it seems a good deal of people are sick of what we have had for two terms now. I'm all for change.

 

[kybert]

<blockquote>Quote<br><hr>Also remember that free health care (via massive taxes) = the system is highly congested. Those who I have talked to have told me if they need something remotely special procedure wise, it takes forever. So, yeah, it has its pluses and downsides. <hr></blockquote>

while this is true in some cases [non urgent surgery, surgery that is essential at some point but has heaps of other people waiting too] people who need things urgenty get them quickly. as for cfers needing procedures, we get them asap. if i had to choose between government funded and privatised healthcare id definately choose government funded. an even better choice would be to have government funded healthcare and pay small fees when you need to use a service. that way the fees can go towards maintaining the hospitals because at the moment there is only enough money to run them, not maintain them.

 

[Emily65Roses]

And which is better:
Waiting a long time for a procedure you need? Longer than you potentially would if you had perfect private healthcare?
or
Dying because you couldn't afford it?

 

[kybert]

darn straight em. thats how i look at it.

 

[JazzysMom]

All thru US history there has been no healthcare system established in the US to assure everyone gets adequate healthcare & coverage. We might not have much luck with this president in your opinion, but I didnt see a whole lot of difference on this subject with the former Commander in Chiefs either!

 

[anonymous]

To be fair, the Clinton admin. did attempt to introduce legislation that would have resulted in massive health care reform. Thanks to Newt and others, this plan never had the bipartisan backing to make it a reality.

 

[anonymous]

When you say "the Clinton Administration" do you mean the group as a whole, or do you mean the hole Hiliary?