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PCR Testing In the US and Financial planning


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#1 blueCML

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Posted 27 December 2014 - 11:25 AM

Hi Everybody,

 

I am from the UK and I am posting on behalf of my wife, Jenny, she was diagnosed with CML 2 years ago and has been pretty textbook case in terms of response to therapy. A few months ago her levels started to rise so she was switched to Tasigna and initial signs are good.

 

2 years ago when diagnosed we were just about to move from London to North Carolina, we put things on hold so Jenny could get treatment and avail of the free healthcare on the NHS in the UK. We have a great oncologist and labwork has always been easy and reliable with regular PCR tests. We are now going to hit the play button on our lives again and make the move to the US. I am hoping the collective knowledge of this forum can help my wife and I get up to speed with the US healthcare market. I have literally spent the last week researching insurance health plans - whoa what a minefield! I think though I have something organised and our plans are full steam ahead.

 

Financially its going to be very different from the UK and we have made provisions for the cost of Jennys care but I dont want to over burden us with the cost, one area I would like to understand more is how to pay for getting lab tests done. I apologize that my first post on this great forum is a series of questions but I have read through lots of past posts and I dont see these answered.

 

1/ The whole world of "copays" is new to us and I am wondering what the average copay is for you guys when you get your 3 month PCR test done at the lab?

 

2/ We may have to pay for some tests ourselves before the insurance is setup, does anyone do this? How much does a PCR test cost if you have no insurance?

 

3/ I see there are some free PCR testing schemes, I think we would qualify for one of them run by Novartis/Genoptix. It gives free tests every month. Do any of you guys avail of this? Is it good way to go?

 

4/ Do you think we are mad leaving a good setup in the UK to start all over again gettting things setup in the US? (There is a good reason for going, but I dont want to put Jenny's health at risk)

 

 

Thanks ever so much,

 

Paul



#2 chriskuo

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Posted 27 December 2014 - 11:26 PM

Health insurance covered has traditionally varied substantially from employer to employer and insurer to insurer.

People have generally depended historically on their employer to provide low cost, high coverage insurance.
In the past, your wife would have been essentially uninsurable with her preexisting condition unless she received it through your/her employer's group coverage. One reason why so many people in the US did not have health coverage is because they are self-employed, part-time, or low-paid workers who do not have insurance subsidized by their employer. If you have good employer insurance, the copays should not be too burdensome. However, employer plans have been increasing the deductible before they start covering anything.

This year, with the advent of ObamaCare, individuals can access health insurance exchanges without concern for preexisting conditions.
However, the insurance will generally cost you more and provide less coverage than a good employer plan.

In particular, the copays for TKIs may seem quite high to you, even if they are a small percentage of list price, which is often over $100,000 per year. In judging your costs, I would focus on the cost of the drugs. You may be able to get some discounts from the manufacturers, but you generally have to have insurance to qualify. Otherwise, you will probably have to go to charitable organization and show them your income tax return to see if you qualify for charitable support.

#3 story

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Posted 28 December 2014 - 01:17 AM

We pay for our insurance through the Afordable Care Act marketplace, "Obamacare" as we are self employed. The system is a real mess here. Our first ACA insurer is being taken over by the state and being closed down. The only other plan available to us has Tasigna listed as a tier 5 drug with a 50% coinsurance...... About $45000 per year. I'm screwed. The quarterly PCR tests cost about $1000 each with a 20% copay equals about $200 after you have paid the deductible any where from $2800 to $6000. I would not come to the US if you have a national insurance option. Our health insurance system is broken for those of us without employer group plans.

#4 blueCML

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Posted 28 December 2014 - 09:40 AM

THankyou for the information, I will be employed by a large multinational company and Jenny will be covered under my plan and discussion around cost of therapy was the first I had with the insurance company so I am relatively happy I understand the costs involved there.

 

I was able to get less information around the cost of testing and what our out of pocket would be, I didnt realise the test could be $1000 without insurance.

 

Does anyone avail of the free testing schemes from Novartis/Genoptix? Seems like a good option to me assuming the onc is happy with it.

 

Thanks again

 

Paul



#5 CallMeLucky

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Posted 28 December 2014 - 11:56 AM

My lab is genoptix, although I do not get the tests for free.  My doctor uses that lab and my insurance pays for it.  I have a co-insurance plan, where I have $2000 annual deductible at which point the insurance kicks in as an 80/20 split (they pay 80% an I pay the other 20%).  There is a $7000 total out of pocket max for the year (catastrophic ceiling).  Once I hit that then insurance pickups 100%.

 

The thing to keep in mind with US system is that it is extremely dysfunctional due tot he fact that it developed as a third party payer system in a free market.  Without the pressure of a true free market on it things went completely out of control.  Since "consumers" never really saw the costs and only focused on the out of pocket portion, you had wild price swings among providers for the same services.  To make it worse, a facility might have a contract with a lab that affords their patients lower costs.  Then there are the negotiated discounts with the insurance companies.  So trying to figure out true cost is very problematic.

 

My last bill from Genoptix for PCR was $453.  There was a "plan discount" of $45.  The insurance paid $350 and I paid $50 out of pocket.

 

 

So take that for what its worth.  We have a very complicated system here, but if you work for large company with good insurance you should be reasonable.  I don't think you're crazy in terms of putting your wife's health in any jeopardy, that's not the issue.  Just make sure you factor in enough of your net income to go towards health expenses.

 

Good luck with the move. 


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#6 chriskuo

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Posted 28 December 2014 - 03:12 PM

The key thing to focus on is the maximum out-of-pocket expense of your insurance plan options.

There may be separate limits for medical and drug expenses. For plans with lower limits, your premiums may be higher.

Basically, if you have a well-paid job, you are not going to qualify for FREE anything in the US. Almost everything is means tested.

In any case, the cost of the TKIs is much more important than the cost of blood tests although PCR tests are not cheap at list price.

One thing to check on the drug plan is how all the various TKIs are treated since many CML patients find themselves switching drugs.
For example, my insurance switched Sprycel from Tier 2 to Tier 3 for 2015, increasing the copays.

You may want to retire in the UK since Medicare drug coverage (for over 65s) is more expensive for TKIs than good employer group coverage.

#7 chriskuo

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Posted 28 December 2014 - 03:43 PM

Googling the free PCR testing, it looks like it was a promotion to physicians ending 12/31/14.

Have you identified a local CML specialist in the US? Depending on how close you are to a major medical center, you may want to establish your primary hematologist relationship there with a DR who is very experienced with CML. If that is too far away, you can have a more local hematologist as your primary CML doctor, but in any case verify his/her CML experience. Many hematologists have limited experience with CML.

#8 rct

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Posted 29 December 2014 - 09:32 AM

I do not have CML, my wife does.

 

The difference between ours and the entire rest of the world:  The people discussing "insurance" and "healthcare" with you make a profit from "insuring" you.

 

You can imagine just how much you can trust anything anyone tells you.

 

Good luck.  Knowing what we know from the last almost nine years of CML alone, my wife and I would advise you strongly that if you do not have to come here, do not.  And if my job was not forcing me to move to a country with a system like ours(the only one), I wouldn't put her through it, I'd stay with what you have over there.

 

rct



#9 chriskuo

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Posted 29 December 2014 - 04:25 PM

Assuming your employer has top-notch health-insurance, I wouldn't worry about rct's concerns and the quality of medical care available to you will be as good or better than in the UK.
If you lose your insurance, then the UK system will be better for you.

#10 blueCML

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Posted 29 December 2014 - 05:06 PM

Thanks everyone for the advice (and warnings). We had a great conversation today with the person we think will be our Hematologist - very experienced with CML and very aware of current thinking and will work with us to make it all happen! We are very happy now that its the right move. 

 

I will keep everyone updated on this forum with our progress. Life goes on as they say!



#11 Felipe

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Posted 10 January 2015 - 07:21 AM

Hey There,

I just happened to see this post from last month. I am in a very similiar situation as your wife. I am an American living here in London, which was meant to be only temporary. Back in 2009 I was diagnosed with CML and ran the usual course of treatment for the disease with no major glitches. At the time I was diagnosed I was returning home to San Francisco but discovered that I would not be eligible for health insurance due to my pre-existing condition. I stayed, gave up the job opportunity I had at the time and essentially have been waiting to see what the developments back home would bring. Now after the advent of the ACA, I am ready to come home but am finding that the mire of health insurance, co-pays, deductibles and the possible exorbitant expense that CML might bring has not changed much. 

I am planning to take a sabbatical from my job here in London this summer to try and scope out the situation in California. Even with advice from "experts" and the ACA it seems that the cost of being covered for CML is not going to be easy. I would like to continue to hear how you guys go with your move to know what some of the barriers, if any, that you run into. 

 

Although, I love London, the UK and the travel in Europe, I would like to return home to the USA to push "play" on my life as well. However if it means that I end up in the poor house, It might be better to finally accept that the UK will be home. It would be a shame but if that's the reality, it will have to be.

 

I would be grateful of ANY information at all on your experience. 



#12 rcase13

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Posted 10 January 2015 - 08:09 AM

I will give my situation as an example. I am married and have CML. My out of pocket max for health insurrance is $8000. My out of pocket max for drugs is $2000. My copay for Tasigna is $75. I have a prescription copay card that lowers that to $0. I basically get Tasigna for free. My wife works for Wellsfargo and our insurance is through her. This is typical for employee sponsored health insurance. So basically the most I will pay in a year is $8000. This plus law school loans puts us in a dire situation with barely enough to live on. I am a Solutions Architect for HP and my wife is an Attorney for Wells Fargo. Welcome to America!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#13 Marnie

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Posted 10 January 2015 - 09:06 AM

It will depend on your insurance coverage.  Before my employer switched to an HSA-type of insurance, my costs were minimal.  A few years ago, when they switched, I ended up with $4000 out of pocket on the first of the year when I purchased my prescription of Gleevec.  After that one time hit, everything else was covered.

 

I switched to my husband's insurance, and now the cost is again tolerable, though higher than my initial costs.  I pay $140 for a 3 month supply of Sprycel.  I have a minimal copay for oncology visits.  PCR tests used to be covered, but now have a $100 copay.   Hospital and x-rays have a similar copay.

 

Monthly premiums are high but doable on my salary. 

 

Insurance plans vary widely.  Not having insurance puts you in the poorhouse. 

 

Marnie



#14 rcase13

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Posted 10 January 2015 - 09:45 AM

Marnie is correct. We have an HSA as that is all Wellsfargo offers.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#15 Marnie

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Posted 10 January 2015 - 10:46 AM

Many companies seem to be leaning toward HSA plans, much to the dismay of their employees.  In my opinion, HSAs encourage people to NOT get the health care that they should be getting, as people try to keep their costs low.  Then after something happens so that they end up paying the entire out-of-pocket cost, they go overboard with uncalled for doctor visits and procedures, because at that point there is no more out of pocket cost.  It's a stupid system that encourages people to stay away from the doctor and then go overboard with the doctor.

 

But it saves the employers money.



#16 pammartin

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Posted 10 January 2015 - 11:11 AM

I lost my coverage because when the affordable care act kicked in, my husband's employer dropped all coverage for spouse/family. We are paying $696 a month for my insurance. I still cannot seem to find a policy that covers the BCR/ABL testing, my co-pay for the Bosulif is $2000 and a co-pay program card brings monthly cost to $200 a month. Getting approval for the Bosulif took two months. There are many that have coverage for the testing, I still do not know why I continue to be denied. I will pay $8000 out of pocket before my insurance kicks in for the 80/20 co-pay. The larger companies seem to offer better coverages, but I believe that is changing also. Best of luck.

#17 Antilogical

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Posted 10 January 2015 - 05:37 PM

My company offers 2 HSAs, 2 HMOs, and 1 PPO.  The on-line calculator showed that they were all pretty comparable.  For very healthy folks with maybe one doctor visit a year, the HSAs make more sense.  Otherwise, for folks like us with some major health issues, the payments are just distributed differently (up front versus pay-as-you-go).  I elected to go with my tried-and-true local HMO.  I know what to expect.  I pay around $550 monthly for employee+spouse coverage.  Primary doctor visits are $20 and specialists are $25. I pay almost nothing when hospitalized, and my testing is already covered.  A 30-day prescription is $10 or less for generic, $25 for formulary, and $50 for non-formulary.  Gleevec is $25, and that is the reason I selected this coverage.  Specialty drugs with the HSAs and PPOs were at retail, until a max is reached.  My payments are spread out, and I like that better.

 

My husband's company only offers 1 HSA, so he's on my plan.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#18 rcase13

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Posted 10 January 2015 - 06:23 PM

Yeah HSAs are great! Basically it will be $4000 due every January!

You would think a company like Wellsfargo would have better choices.

But I am sure there will be a cure next year so this whole conversation is pointless! :)

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!





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