BRCA costs

[OreTex]

In a response to my earlier post, kathy o raised a question about the cost of BRCA testing (and I forgot to answer, kathy: it's a blood draw, not a swab).



Because only one US company is doing the testing, I'm sure the cost is quite high (I'm not sure exactly what it is, but I'm going to ask tomorrow...perhaps you wise women already know).



Here are my questions (I'll try not to go political):



1.  Many drugs and treatments produced by US companies cost less outside our borders. Does anyone know if this is true for BRCA testing? Have any US citizens in this group gone abroad for BRCA testing?



2. Despite HIPPA, we all know that genetic and medical info can bite us in the a** in terms of insurance coverage, particularly if we are self- or unemployed.  Have any US citizens in the group found a way to do their BRCA testing "off the radar" so as to not raise any red flags?



This is probably opening two humongous cans of grade-A worms, but what else is there to do on Sunday night? :-)

[OreTex]

I just found this information in the Johns Hopkkins website:



Genetic testing tends to be quite expensive, and usually costs $2800 for the first family member tested. If a mutation is identified, testing of other family members for the identified mutation is approximately $350. For Ashkenazi Jewish individuals, testing is more straightforward, and costs about $400. Many insurance companies cover the cost of genetic testing, though most companies require that the family history meet specific requirements.



Unfortunately, this text was included, too:



There are also certain risks associated with genetic testing for cancer susceptibility, including the possibility of insurance or employment discrimination. There are some federal and state laws designed to lower the risk of insurance discrimination, but they only pertain to specific types of insurance.



The URL for the website is:

http://www.hopkinsbreastcenter.org/services/patient_care/boss.shtml

[MickeyVicki]

Yes,  some time ago, someone else found and posted that *wonderful* news about the possible insurance risks associated with vital knowledge about one's health and the health of one's family.  Ridiculous, isn't it??!!

[OreTex]

DON'T EVEN GET ME STARTED!!!!



THe irony is that my late father was a Pharma sales rep (long. long ago) and thus The Man is paying for all of this high priced medical care.  I was worried that the heartless b*^%^&ds would cancel Mother's supplemental after he died 2.5 years ago, but they didn't.



I often wonder why, in the richest nation in the world....



(Whoops!  My liberal is showing!  And that's not always a good thing here in Texas:-)  )

[MickeyVicki]

Yes.  I have decided the key to deciphering the inconsistencies lies in determining the use for the word, "richest."  That word can be used for many sujects, from money to chocolate to compost piles!

[OreTex]

What I'm wondering is if I should go to Mexico and have it done under an assumed name?  I'm only halfway joking?  There are all sorts of plastic surgery and gastric bypass resort pacakges....I could probably get a simple blood draw done!!! :-)

[LitDoc]

If you can wait a day or two for answers, I'll find out from my daughters (both in France) what it would cost for a non-citizen to have the test done in Europe. This might not be an option for people unable to spend a day or two in France, Germany, Italy, or Denmark, but perhaps it would constitute a bit of advertisement for the wonderful, wonderful, humane SOCIALIZED MEDICINE we enjoy in western Europe. Someone else could probably find out what the cost would be if done in Canada. Otherwise, I can also ask my students (most of whom are Mexican) to investigate what that sort of test would cost 'across,' as we say in Laredo.



This has long been a highly unpopular subject in the USA due to the incredible propaganda machine of the AMA and APhA, but the truth is that we have one of the worst medical systems in the world. Yes you read me right. One of the WORST medical systems in the WORLD. By worst, I mean the most unfair, the most unbalanced. Those who have lots of money (or excellent insurance plans -- isn't that the same thing?) get great treatment here; everyone else runs the risk of getting substandard care, or even slipping through the cracks.



Americans are told that under socialized nedicine, people have to wait for a long time for medical care, and that they are unable to choose their own doctors and/or hospitals. This is true in some countries where the system has been mismanaged -- notably in the United Kingdom. I wouldn't wish the UK health system on Saddam Hussein himself!



However, other countries in Western Europe -- notably France, Germany, Italy, the Netherlands, Belgium, Scandinavia, et al. have fabulous systems that take care of everyone in the best possible way. Yes, people do pay high taxes for that care (they also get free education through the PhD, by the way, plus all sorts of other perks and bonuses such as a GUARANTEED retirement pension for everyone!), so -- believe me -- it's more than well worth the taxes.



Final word: shoot me if you will. I'm not anti-American. In fact, I'm actually the daughter of an American career diplomat who had the good fortune of living abroad for a number of years so that I actually got to see the way people live in other countries.



I believe that people such as those of us who have been/are ill enough to read and post on this board should be aware that there are better health systems out there. The only reason we don't have a system like that in the USA is because we've been snowed and snookered by the conservate factions that have governed our country for so long.



Anyway -- let me get that information for those who are interested. As for as the rest of what I've written is concerned, please delete at will if you are offended. If, on the other hand, you're interested in a national health plan that would take care of everyone in this country, rich or poor, PLEASE write your representatives, and also vote appropriately.

Annette

[Gatsby]

I am so amazed that after speaking with 2 people you are now an expert on BRAC1 & 2, and I am even more astounded that you are an expert on American Health Care.  Will wonders never cease?

[Anna-maria74]

....... ouch!



HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!!!!!!!!!!!!!!!!!!!



Anna  X

[kathy o]

Nothing makes my heart go pitter patter like having a liberal in TEXAS!!!!  LOL

Anyway, Not to take away from your Moms sickness, I think and Pray for her daily....  Thank you for the Brac info, I am on medicare at 47 and have oc so maybe I can get that test done preferalbly both since Grandma died from Breast Cancer. I would like my family to have as much knowledge as possible down the road. I just made an appt to go and talk to my Dr.about getting it done. Thanks again and rant all you want, keeps us all young and thinking!!! Give Mom a hug today!!!

[Barney22]

Hello there - I'm from the UK and was very disappointed to see your comments about our NHS healthcare system.  I think there are a lot of old fashioned ideas around about the NHS which should be challenged.  Yes, you can always find things wrong with it - something so huge and universal will always have things to criticise, but you will also find only a tiny minority of the people here in the UK who would want to change to a insurance based system.  Far more government funding has gone into it in the last few years and has made a difference.  Yes, you may have to wait for less urgent treatments - does that matter in most cases?  It has always been our national occupation to take pot shots at the NHS and swap stories but you just try changing any aspect of it!  That's a pity actually, as improvements can be slowed down.  France and Germany now have real problems with affording their over supplied systems - their doctors are coming here as they can't get jobs at home due to over supply of graduates.  



It only took 2 weeks for me to have surgery after my ovca diagnosis and I have had really good care since then.  It has cost me nothing!  I have been truly shocked over the months reading some of the posts of women who cannot afford insurance in the USA and the minimum treatment they get.  I don't have a clue how much my treatments cost and no-one mentions it at the hospital.  BRACA testing is done free at the hospital I attend and followed up by the offer of surgery to remove the ovaries of women with bad family histories.   Sorry if all this sounds a bit fed up but I do get tired of the NHS 'thing'.  Jenny

[kathy o]

HI,

I don't want to change subject but I have been wondering about you, how was your Cruise and I hope you are feeling ok

Kathy

[Barney22]

Hi Kathy - the cruise was really great - sunny and warm every day and we saw lots of interesting sites on the Greek isles and Turkish coast - Knossus, Delos, Ephesus, Istanbul  etc plus visits to other non-archeological beautiful places like Santorini.  Ate too much and broke quite a few of my diet rules eg had desserts and drank wine, but never mind.  Think it did us both good to get away and forget about cancer for a couple of weeks.  Met a nice couple from Seattle - he's a diabetic specialist - internist?  Not sure what that is here. Came back to my last chemo but discovered my CA125 had gone up from 16 to 35 which was a shock (perhaps the desserts and wine!!); now gone back down again to 26 so my fears of it continuing up were laid to rest.  They keep telling me it can bob up and down but it hasn't happened to me before.  Had the results of my CT scan today which were very good - just a small area of 'thickening' left around the peritoneum near my liver.  Everything else pretty well gone.  I start my drug trial in 2 weeks time and have mixed feelings - part of me is keen to try something which might hold a further relapse at bay, but the other part wants a rest from medication (and side effects) and would love to just let things rest.  Our 2nd grandchild was born last week - Rosa - so that was very positive - went to see her again today on the way home.  There's a bittersweet aspect to seeing her and her sister - how long will I have to see them growing up?  Still, I'm holding up well under the treatments and just expecting 'something to turn up' as someone said - damned if I can remember who!  Can you?  How are you doing?  Have you kept up with the ginger?  Cheers Jenny

[kathy o]

Thw closest I have came to ginger is the Ginger Flavored Altoids!!!  I know the feeling about the young ones, I pray that I get to see my neice qand nephews grow up and get married and have children. But Congrats they sure are cute and loveable.  So glad you had a good time on your cruise!!  I am totally off  everything again except for a pain killer here and there.  My ca125 is bouncing around too but I feel really good. I hope the trial is sucessfull and not a lot of pain and problems associated with it. Take care Jenny....Cheerio Kathy

[OreTex]

Jenny: I, for one, have nothing bad to say about you NHS.  My 81 year old aunt, who lives near Liverpool, has received excellent care.  And when my mom and I were over to visit her last summer, we took a jaunt to Scotland.  Near Inverness, in a remote hotel on a rainy Sunday, my mom felt quite ill.  She was terrified it was a pancreatitis attack (in retrospect, I'm sure it was related to what we now know was rampant ovca).  The hotel gave us the number of the hospital in the nearest town, and when we called and discussed the case with the triage nurse, she consulted the doc and called us back in 20 minutes.  They felt a drive on winding roads in iffy weather and a long wait in the ER would not be in my mom's best interest and offered to send a doc to our hotel figuring the wait would be about the same.  I asked about costs and she replied, "Oh, there will be no costs."  I ALMOST FELL OVER.  The doctor arrived about two hours later, gave Mother a full examination, calmed her fears, and left prescription medication for her.  He did tell us that the nurse was incorrect and there would be a fee since we were foreigners...he wasn't sure how much, but he didn't think it would be very high.  Imagine our surprise the next day when a nurse called to not only check on the patient but to tell us that the fee would be (drum roll.......) 35 pounds, or about 70 bucks.  



Now that's a bargain in any country.  Not that you could find many American doctors willing to come to your HOUSE on a SUNDAY AFTERNOON.