Healthcare and Crohn's - need advice please

[WJPII]

Wondering if anyone is in a similar position that I am in and could share their experience or if they found a solution.

I am 52 and have had Crohn's for about 31 years. On and off battles, drugs, therapies, clinical trials, surgeries, etc. Last year, came out of remission hard again, but this time, the Crohn's caused inflammation in many other parts of my body. Sub sequentially, I became clinically disabled. I was fortunate enough to have been paying into a private insurance long term disability program for 20 years and was approved. My company let me go, but allowed for me to go on COBRA for medical coverage. So, I have income, but the COBRA policy expires by the end of this year and I have been trying desperately every single day to find a way to get medical coverage after the COBRA expires. In the USA, I cannot get a regular PPO or HMO due to the pre-existing condition. For ACA, due to my income, the quote I am getting is $1300 to $1900 a month for insurance, and then obviously the huge deductible annually of $10,000. But with ACA (obviously NOT affordable), none of the insurance companies will pay for Stelara or my upcoming (2nd) small intestines surgery. And on top of that, for the AVA plans, it is a HMO and I lose my Dr's and get stuck with NA's. I have tried the VA since my whole family was in the military, but they don't cover children over 25. I am working through the SSD system, but that will take 2-4 years plus another 29 months if I am approved to go on Medicare. I am still trying to find a loophole for Medicaid, but it is a battle with them due to the income. The SSD people told me I should move to Mexico to get treatments because it is much cheaper there. So, I have even contacts consulates for over 20 countries and every international insurance company and none of the countries will accept a long term resident visa and national medical care and none of the insurance companies will cover me (due to the pre-existing condition). So, I feel like everyone is giving me a death sentence. I have been in and out of hospitals for years and have seen the bills....who can afford $250,000 and up for hospitals stays without insurance? And Stelara (the last drug I can take) raised their price to $37,000. But the insurance company did get a discount down to $28,000 every 6 weeks.

Is there anyone else out there that is disabled due to Crohn's, under the age of 65, no family to help and has income that has found a way to get good healthcare at an affordable price? I feel like I have no options left. Trying to get all the medication and surgeries out of the way this year....but everyone knows I am going to have more episodes in the future.

Thanks for the help.

 

[my little penguin]

So preexisting condition do not count if you don’t have lapse in coverage .
Which is what cobra is for
Temporary coverage while you get permanent insurance
No lapse = no preexisting denial

Insurance on your own has high premiums
Only short term or super cheap insurance won’t cover pre existing conditions
These cover next to nothing abd should be avoided

Have you tried bcbs
https://www.bcbs.com/individuals-familiesthere they can give you a ppo
But you will pay for it
Aca is cheaper hmo style because it’s grouping folks together who are high risk

ssd depends on the state you live in .

a lot of southern states have longer battles
Northern states long but not 4 years
Getting a good lawyer is the key

Getting Stelara covered -call Jansen they have programs of you don’t have insurance or government insurance
They can help
Talk to the social worker at the hospital where your Gi is at
They can also help with drug costs
Unfortunately if you want to go the cheaper route that would mean hmo

there are a few on here getting ready to retire or are retired so maybe they know more
my ibd kiddo is only 17 so ….
Still covered under my insurance

 

[WJPII]

So preexisting condition do not count if you don’t have lapse in coverage .
Which is what cobra is for
Temporary coverage while you get permanent insurance
No lapse = no preexisting denial

Insurance on your own has high premiums
Only short term or super cheap insurance won’t cover pre existing conditions
These cover next to nothing abd should be avoided

Have you tried bcbs
https://www.bcbs.com/individuals-familiesthere they can give you a ppo
But you will pay for it
Aca is cheaper hmo style because it’s grouping folks together who are high risk

ssd depends on the state you live in .

a lot of southern states have longer battles
Northern states long but not 4 years
Getting a good lawyer is the key

Getting Stelara covered -call Jansen they have programs of you don’t have insurance or government insurance
They can help
Talk to the social worker at the hospital where your Gi is at
They can also help with drug costs
Unfortunately if you want to go the cheaper route that would mean hmo

there are a few on here getting ready to retire or are retired so maybe they know more
my ibd kiddo is only 17 so ….
Still covered under my insurance

Thanks for the response. I currently have anthem blue cross blue shield as part of my old company Group plan. It is really good. But, I already talked with them and every other private insurance company and they will not cover pre existing conditions. It doesn't matter if I currently have insurance with no lapse. Is there something magic I should be saying to them?

And on the pharmacy company help, they have strict income guidelines that I fall outside of. And not one individual insurance plan would cover stelara anyway. ACA or otherwise. My ex sister in law is on Medicaid with MS and she has been trying to get on a biologic for 2 years.

 

[westernbuddy]

You all need to protest over health care in the USA.

The most wealthy county in the world and yet people with a disease have a worry like this.

Europe Canada uk Australia everyone is treated equal rich poor student or retired.

Everyone simply pays a sum out of wages to government each month for life in return you get free health care, no worries or concern no matter your circumstances in life. Cost of surgery or medicine is never debated.

Would love to see the news and people protest in the usa about health care, and for it to change and become equal and not a worry or concern for all there.

Usa is a place I'd like to live, and that's what puts me of, is the pure scammy health care system that needs a huge huge re vamp.

Sorry I haven't helped with your concern, its just frustrating watching people in the most wealthy county on the planet have to worry about getting medicine for a serious disease.

Sounds worse than a 3rd world country.

Shouldn't be that way, you only have to look at the nhs uk or many other health care systems in France Germany Spain Italy and so on.

 

[WJPII]

You all need to protest over health care in the USA.

The most wealthy county in the world and yet people with a disease have a worry like this.

Europe Canada uk Australia everyone is treated equal rich poor student or retired.

Everyone simply pays a sum out of wages to government each month for life in return you get free health care, no worries or concern no matter your circumstances in life. Cost of surgery or medicine is never debated.

Would love to see the news and people protest in the usa about health care, and for it to change and become equal and not a worry or concern for all there.

Usa is a place I'd like to live, and that's what puts me of, is the pure scammy health care system that needs a huge huge re vamp.

Sorry I haven't helped with your concern, its just frustrating watching people in the most wealthy county on the planet have to worry about getting medicine for a serious disease.

Sounds worse than a 3rd world country.

Shouldn't be that way, you only have to look at the nhs uk or many other health care systems in France Germany Spain Italy and so on.

First, thanks for the response. Second, please don't get political on any forum. Third, I have checked into the countries you mentioned and their healthcare sucks and the taxes are outrageous. And on top of that, unless you run across the borders illegally, you are not able to just get a resident visa and get free healthcare. I have checked over 20 countries and not one will allow you to just apply for a long term visa, pay an income tax and get free healthcare. If that was the case, every country with this "free quality healthcare" would be over run with people from the African continent, Latin America and the Middle East and would bankrupt the countries systems.

Now, if YOU want to come to the USA legally, you can get a quality healthcare plan under ACA. And they take pre-existing conditions. However, they do not cover Stelara specifically and limit the amount of visits to Dr's annually. Unless, you want to pay about $1900 a month (which is what I was quoted). But from checking with the other countries, with my income, that $1900 a month is cheap compared to what I would have to pay in taxes.

Maybe someone can chime in on a solution that can help?

 

[my little penguin]

As far as Stelara coverage
That is an uphill battle
We -my kiddos numerous specialists-spent 8 months each time -on prior authorization/appeals /secondary appeals /peer to peer reviews to get it covered
This last time took -another 8 months to get it re approved even though he had been on it same insurance for 4 years (yearly approval )
I do know you have to normally appeal and prove all lower meds failed - which in his case did
Medicaid (medical assistance) does cover Stelara in some states -but only at the fda approved dosing (90 mg every 8 weeks. ) -they will not budge if you need it every 4 weeks

Check different states
Some have better state aid than others
And better loopholes for medical assistance or private insurance -those do vary vastly by state in terms of price
Also ask your previous employers HR personnel
About the pre existing thing
They know Hr insurance terms more than anyone else and may know of a way

I know others who obviously younger switched from their parents plan to an employer plan with
Pre-existing conditions without any issues in coverage.

 

[WJPII]

As far as Stelara coverage
That is an uphill battle
We -my kiddos numerous specialists-spent 8 months each time -on prior authorization/appeals /secondary appeals /peer to peer reviews to get it covered
This last time took -another 8 months to get it re approved even though he had been on it same insurance for 4 years (yearly approval )
I do know you have to normally appeal and prove all lower meds failed - which in his case did
Medicaid (medical assistance) does cover Stelara in some states -but only at the fda approved dosing (90 mg every 8 weeks. ) -they will not budge if you need it every 4 weeks

Check different states
Some have better state aid than others
And better loopholes for medical assistance or private insurance -those do vary vastly by state in terms of price
Also ask your previous employers HR personnel
About the pre existing thing
They know Hr insurance terms more than anyone else and may know of a way

I know others who obviously younger switched from their parents plan to an employer plan with
Pre-existing conditions without any issues in coverage.

Thanks. Yes - Stelara is the last medication that I can try. All others have failed after a while. And unfortunately, as you know, Stelara is now the most expensive drug in the world. It is crazy. My existing insurance has covered Stelara twice now. And as of Friday, I was finally able to get past the monthly rejection and appeal process for my next dose to ship out this week. But, unless I can figure something out, I will not be able to continue it in about 3 months.

I am still battling with Medicaid. You are not supposed to make over $17,200 a year in order to get it. But, two insurance companies and an attorney I know showed me proof online that I can qualify for Medicaid because my insurance income is not taxable. But as you probably know, dealing with any government agency is worse than pulling teeth (unless you are giving them money).

What you mentioned about other states is a good point and one that I have not thought about. I thought when I ask for medical coverage, it was nationwide. But now I will start checking insurance, ACA and medicaid in other states. Maybe something will pop up.

On a side note - I was in Mexico last week talking with Dr's to see how to get healthcare there. It is "possible", but just like other countries with a "national healthcare system", the care is not very good and the lead time to get anything done is long. The up side though is that I may be able to move there and pay for everything out of pocket. Except Stelara of course. I called every pharmacy on the list that Jannsen gave me in Latin America to get pricing and the jerks jacked the prices up from Brazil to Mexico. You used to be able to go to Costa Rica or Panama to buy biologics for $2500 USD. Now all those countries are $25k+.

 

[WJPII]

Health is very political sorry to say.

And you won't be able to simply up and leave county and get health care, most countries with good hospitals you need marriage or a highly skilled job for a visa., and it shows how much reform the usa health care needs if your even contemplating it. As an outsider usa health system looks in desperate need of reform.

Europe uk if you earn less than 16,000 usd per year you pay 0 tax and get all the health care you could ever want.

Over 16,000 usd earnings you pay 20% tax all health care you need included plus your also building up a pension.

You get 300 usd a week pension plus your mortgage paid if needed plus free health care when retirement starts.

Over 55,000usd approx you must pay 40% tax.


The average person in the uk europe pays 4,000 tax per year.

For this you get free health care, if you lose your job wages are subsided and house paid by government, when you reach 65 you get pension paid and free health care.

So in Europe for an average of 4k a year you never have any health worries, and even if you don't work don't pay any taxes your a citizen its still free.


What your telling me 1900$ a month $23,000 a year for a policy that limits my doctor visits and gives me no stelera.

That deserves one huge protest, not black lives matter, all lives matter.

You don't even get a pension or any other benefits for that money, we get many.

It would not bankrupt the country, usa hospitals way overcharge insurance companies.

A scan in usa for 1000usd same scan costs 100usd here.

Stelara costs 2800usd per 90mg injection here. But nobody pays or even has to worry about paying.

If it was government run costs would be way way lower.

You should look into uk hospital costs vs usa hospital costs.

Even simple stitches cost ten times more in the usa.

Even biden here in the uk at g20 summit was saying he wants the usa health care more like Europe.

And I don't buy saying immigrants would bankrupt systems.

You make the hospitals charge much less than they are now, you make everyone contribute out of taxes., it works in many other countries so I don't buy the theory of saying it won't.

It's a very profitable business health care in the USA, its not profitable in Europe so business people won't give up there ways change without fight.

You have not helped at all... Why are you soap boxing about how great "Europe" is? And how does that help me? No way in hell I am paying 40% of my income in taxes for garbage healthcare. Why do you think most people from Canada, UK, Germany, etc fly to Costa Rica, Mexico, Malaysia, Thailand, etc for surgeries? Because the medical in all the "socialized medicine" countries have massive wait times, massive taxes and out dated everything for medical equipment. I have friends in Europe and they wished they lived in the USA for medical. But, they don't have pre-existing conditions....

 

[my little penguin]

Definitely check different states - it’s not a federal program but state run
They all have different rules.
so while you may switch docs at lest you may still get university level specialists
(North east or California easier rules /more loophole options imo vs south which tends to have the more stringent rules -middle states could go either way for Medicaid at least from parents of other kiddos with chronic conditions and qualifying -adult land may be different

 

[Jo-mom]

USA health care is expensive, but it is the best in the world. People fly from all over the world and pay cash for surgeries in the USA. My best friends Mom is a nurse in Buffalo, NY. They have rich residents from Canada coming to Buffalo all the time paying for stuff cash because either they can't get it in Canada or the wait time is really long.

@lukesjr - As a Canadian, I can say that I am very happy to be one. Yes, wait times for MRI's might be longer but if it's an urgent matter, it won't be long. Rich Canadians will pay the thousands of dollars to get a quick MRI in Buffalo but not because Canada's health system isn't good, it's because they just want answers ASAP and can afford to do it within a relatively short drive from Toronto. I read this forum and am sadden when I see how many have to fight insurance companies in the USA to get the medicatiion they need. It shouldn't happen anywhere in the world. People all have a right to good health care.

 

[lukesjr]

@lukesjr - As a Canadian, I can say that I am very happy to be one. Yes, wait times for MRI's might be longer but if it's an urgent matter, it won't be long. Rich Canadians will pay the thousands of dollars to get a quick MRI in Buffalo but not because Canada's health system isn't good, it's because they just want answers ASAP and can afford to do it within a relatively short drive from Toronto. I read this forum and am sadden when I see how many have to fight insurance companies in the USA to get the medicatiion they need. It shouldn't happen anywhere in the world. People all have a right to good health care.

I appreciate you like your system, but why does everyone have to believe what you believe? Why does everyone in the world have to copy a universal health care type of program? Can't other countries do different things at that is ok? The vast super majority of people are covered in America with great health care. There are a few outliers that end up in the cracks. Don't believe what you read in the on the propaganda sites.

 

[WJPII]

I appreciate you like your system, but why does everyone have to believe what you believe? Why does everyone in the world have to copy a universal health care type of program? Can't other countries do different things at that is ok? The vast super majority of people are covered in America with great health care. There are a few outliers that end up in the cracks. Don't believe what you read in the on the propaganda sites.

I was going to just ignore the Socialists from Europe, but then you stepped up. So, thank you for chiming in. I guess on my original post I did not think of asking for American's only to respond. The rest of the world who lives in Communist or Socialist societies clearly don't understand the freedom of choice. They are used to just listening to what is on CNN about how great everything is in their own country and how horrible America is. When we clean up the corrupt voting mess the socialists created and Trump is back in office, the world will back to normal as America being the greatest country on the planet.

Just wish I am able to figure out how to get healthcare that excepts pre-existing conditions with Stelara at a reasonable price. But there is no way I am going to a crap European country with 40 to 80% taxes to get garbage medical care....

 

[lukesjr]

WJPII, the one thing you can do which other have done is you can try and reach out to the company. Some companies will give you a direct substainial discount.

 

[WJPII]

WJPII, the one thing you can do which other have done is you can try and reach out to the company. Some companies will give you a direct substainial discount.

You mean Johnson and Johnson for the medication? I did that. They refer me to their foundation and jannsen carepath. And I am on carepath. But, that will expire once I do not have medical insurance.

 

[WJPII]

https://www.google.com/amp/s/amp.th...-affordable-healthcare-uninsured-underinsured

https://www.kff.org/uninsured/issue-brief/key-facts-about-the-uninsured-population/
This is a huge number who can't afford insurance, and I'm getting the impression that some may think if I'm OK bugger the rest of society.

I do not even live there it should not be winding me up.

There are literally that many articles about it on Google it's unbelievable.

And all I do is point out the fact, usa is the most wealthy country, less wealthy countries don't have this issue.

This is not on not fair, millions are suffering unable to get medicine or treatment.

Usa is a great great country we can't deny that, health care looks frightening and not impressive however.

We don't pay huge taxes most 10-20% of income.

Seriously? I am trying my best not to be rude in anyway. But, can you please stop? I don't care about any other countries "wonderful" health policies. This is not helping me. I am only looking for solutions for America. And I am very thankful to those who have helped me. (I am on the phone with Medicaid as I type)

Yes - everything is very expensive in America. But, it has the best medical care in the world by far. But being the best also has a cost associated with it. You cannot keep saying how wonderful you have it when you are a small country with a smaller GDP than just one of our States (out of 50). And as I have already said, all these European countries that have a national healthcare system, will not allow me or anyone else to just apply for a resident visa, pay a tax and start going to a hospital - see Dr's - get $37,000 every 6 week medications. If that were the case, your systems would be bankrupt and overrun from a billion people rushing in. Hence, this is why America doesn't have social medicine. It simply doesn't work in the long term. In addition, all the development for drugs and procedures are done in a free market, capitalist system. There is a massive cost for this that American's are paying for, for the rest of the entire world. So when you say Stelara is so cheap in your country, it is because American's and American insurance companies are paying back the development costs. You should be thanking us for your cheap medication!!

Lets stop with the politics please.

 

[Lisa]

Thread has been locked as the original post has been derailed.