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Discussion about insurance, treatment costs, and patient assistance programs

Private health insurance in the U.S.

by ClaireK on Tue Feb 10, 2015 1:18 am

I need some information on private health care in the USA and we are not getting any valuable information from the insurance companies at all.

My husband is American and I am from the UK. We currently live in Australia. We are considering moving back to the US. We lived there for 10 years before moving to Australia. I held a green card for 10 years and had Tufts private insurance for 7.

Two years ago I was diagnosed with multiple myeloma and amyloidosis. I did 5 cycles of chemo and a stem cell transplant, which was all done in Perth and with very little out of pocket expenses. I am currently in complete remission.

My husband has sent several emails to insurance companies in the US, trying to get information on preexisting conditions and what we we can expect to pay as far as out of pocket expenses should I need treatment again.

None of the insurers will give him a figure (even a percentage) of what we can expect to pay. Their reply emails are so vague and say you need to contact them by phone but, in order to talk to someone on the phone about policies, you need to be a member with a policy.

We are finding it very frustrating and it is beginning to stress us out so much. We know and accept the fact that we will be out of pocket for treatments, but are we going to land up losing everything we own to pay for it ?

Any advice will be appreciated.

Claire

ClaireK
Name: Claire
Who do you know with myeloma?: Self
When were you/they diagnosed?: Feb 2013
Age at diagnosis: 43

Re: Private health insurance in the U.S.

by Rneb on Tue Feb 10, 2015 1:33 am

Go on web site (obamacare).
Put in your last zip code.
Enter family demographics.
Estimate income.
Go to site re subsidies... pick a plan/ deductible.
You have an estimate...

Fill out app. There is no pre-existing condition bar to coverage.
So long as your hubby / kids are us citizens-and you file a us tax return, you should be able to sign up for coverage.
Good luck.

Rneb

Re: Private health insurance in the U.S.

by tck on Tue Feb 10, 2015 9:19 am

What we are looking for is not just what your premium would be but rather for treatment / monitoring

  • Out of pocket costs
  • what is the most you would have to pay if treatment is required
  • Are most things covered (stem cell transplant, drugs and anything else needed)
  • Looking for other peoples experiences with insurance and overall costs during treatment / monitoring
  • what could be reasonable with regards to expectations for treatment / costs
Talking on the phone with the insurance companies as well as getting quotes hasn't answered anything yet. Some things are covered, but I've read some drugs may not be. The issue is, if moving overseas, it's a big risk to take winging it and hoping everything is covered. Knowing what to expect helps a lot when going into something.

tck

Re: Private health insurance in the U.S.

by Nancy Shamanna on Tue Feb 10, 2015 12:15 pm

Hi ClaireK,

This is a complicated problem that you have about trying to move between countries, as a myeloma / amyloidosis patient! One question I have is whether or not you would be able to retain your Australian health care if you leave AU. I think that the only reason that you could have had low expenses thru a stem cell transplant and five rounds of chemo is that it was on Health Care.

Unfortunately, myeloma does tend towards a relapse for most patients, and also the treatments are not affordable for most patients unless they have health care, either thru a government or through a private insurer.

Undoubtedly there are more drugs available to treat myeloma in the US than anywhere else, so that is an advantage for someone in the US who is covered for full care. That is not to say that we do not get really good care in other countries, too, but that sometimes drug access may be an issue for patients.

Hope that helps ... please let us know what you find out! In a way your family has 'dual citizenship'.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Private health insurance in the U.S.

by Multibilly on Tue Feb 10, 2015 1:14 pm

Claire,

Note that it is now US law that a green card holder in the US have insurance ... otherwise, you could face fines (more info here).

Do you know what state you want to move to? Depending on the state, the health care exchange will either be managed by that state or the federal government. With my state (Colorado), it is pretty easy to run side-by-side comparisons of premium costs, out-of-pocket percentages and limits, etc.

Each plan can vary GREATLY in what their costs and coverage percentages and out-of-pocket maximums are. You will basically have to trade off premium costs for degrees of coverage. You will hopefully find a plan that has the right balance between what you pay for, premium-wise, versus what you would pay for out of pocket over time.

With the high-cost multiple myeloma treatment over time, the coverage details and percentages were my prime decision criteria, since the differences in these costs typically dwarfed the differences in any premium outlays. As an example, a low cost premium policy that only covers 50% of the cost of a multiple myeloma drug that can cost $25,000 / month is probably not a great choice for someone with active multiple myeloma. But a more expensive policy that covers 90% of the drug's cost and / or has a maximum out of pocket cost of $1,000 for all drugs each each year might be a good deal and worth the extra premium expense.

There are no limitations on pre-existing conditions for these health care exchange plans.

You can start here: https://www.healthcare.gov/ If a state runs its own exchange, the aforementioned link will point you to it.

As you narrow down your choices, you should take the time to read the various "certificates of coverage" (this will spell out things like transplant coverage, etc) and drug bulletins for each of the policies (i.e. what their coverage policy might be for Kyprolis) to make sure it lines up with what you need. There's just no easy way around these last steps if you want to be sure you are signing up for the right kind of policy for your specific situation.

Lastly, be sure that the facility you want to use takes the coverage that you are selecting. Don't rely on the web site to be accurate in this regard.

Hope this helps a bit.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Private health insurance in the U.S.

by Ian on Wed Feb 11, 2015 4:00 am

Interesting discussion, this one, but I'm confused ... Are we now trying to answer two separate sets of questions for two different people / couples facing a similar problem – first Claire, and now tck?

Ian

Re: Private health insurance in the U.S.

by ClaireK on Wed Feb 11, 2015 10:59 pm

Hi Ian,

TCK is my husband. He is in the US at the moment. As we are planning to move and can't decide if it's the UK or US, as we have family in both countries. Tom is taking this opportunity to look at the job market and health care / hospitals / treatment centers in the US. He has been dealing with the insurance companies and most of them can't / won't give him a straight answer.

It is hard to know what to do as before I was diagnosed health care was not a big issue. We have heard horror stories of others who land up with so much debt, and we have worked hard to keep ourselves debt free. Like I said before, we know that we will have to pay for treatment, we accept that, but also don't want to land up living in a cardboard box because we made the wrong decision when choosing a health care provider.

Thank you everyone for your input so far.

Claire

ClaireK
Name: Claire
Who do you know with myeloma?: Self
When were you/they diagnosed?: Feb 2013
Age at diagnosis: 43

Re: Private health insurance in the U.S.

by TomK on Sat Feb 14, 2015 11:59 am

Multibilly

Thank for that information. We are considering Washington, Colorado and Massachusetts at the moment. I have been trying to research the hospitals and insurance in those three states. With regards to Colorado, do you have any recommendations for good hospitals or insurance providers we could look at?

Cheers
Tom

TomK

Re: Private health insurance in the U.S.

by Multibilly on Sat Feb 14, 2015 9:46 pm

TomK,

See my recent post here regarding Colorado facilities.

Boston, MA is loaded with some top choices for multiple myeloma specialists, including the Dana-Farber Cancer Institute and Massachusetts General. There are quite a few folks on this forum who are from the east coast and can comment on facilities in and around the Massachusetts area.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Private health insurance in the U.S.

by ClaireK on Sun Feb 15, 2015 9:19 pm

Thanks Multibilly.

At the moment I am in remission. I was treated first with thalidomide, which caused clots and led to emergency surgery. I was then given Velcade and dex, then a stem cell transplant (SCT).

As I am in remission at the moment, it is difficult to say what drugs I will need in the future. I have read that some insurance companies refuse to pay for drug treatment if it is not a drug they approve of. I can see their point, but as I have multiple drug allergies and I have already had a severe reaction to thalidomide, who knows what will happen when I relapse.

Have you had any problems getting any drugs that you need, or have you been denied any on your health care plan?

Cheers
Claire

ClaireK
Name: Claire
Who do you know with myeloma?: Self
When were you/they diagnosed?: Feb 2013
Age at diagnosis: 43

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