HDIL2 treatment centres

Suekub
Suekub Member Posts: 137
in Kidney Cancer #1

Hi all

i am investigating IL2 treatment and as it is not a treatment available in Australia I am trying to find the best treatment centre and wanted opinions from anyone here that can advise who I should approach in the US regarding costs etc.

Thanks for your help.

Sue

 

Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    #2
    IL-2

    Sue, as everyone knows, I am very happy with Yale New Haven in New Haven Ct. Nysiles was in Boston and was happy with his care. Currently Thaxter's care is by a very experienced cancer center. I guess my point is any center qualified to give IL-2 should be very good. So much depends on how one responds. I would think the west coast would be more convenient for you. Cost can be high. If it is a private pay, negotiations would help. My care was about $300,000 per week. Times 4. Thank god for insurance. I hope you can make this work.

  • DMike
    DMike Member Posts: 259
    #3
    Treatment Centers

    Hi Sue,

    Here is the drug manufacturer's site with recommended centers.

    https://secure.prometheuslabs.com/proleukin/mm/search-treatment-centers.aspx

    My insurance company sent me one check for $169,000 and one for $165,000 to pay Vanderbilt. I assume this was the cost settled on by my insurance company and Vanderbilt, probably after disallowed charges. This is the only time they have ever sent the check to me (made out to me), so I could pay hospital costs directly. I had fun thinking about cashing them in and runnning away, but I knew I'd have an unwanted guest traveling with me. No, I'm not talking about my wife! :)

    David

  • Bellweather
    Bellweather Member Posts: 102
    #4
    MD Anderson

    Sue,

    MD Anderson in Houston Texas is where I received HDIL2.  Their care was wonderful and costs were similar to those posted by others.  Hope you succeed in your quest.

     

  • Suekub
    Suekub Member Posts: 137
    #5
    Bellweather said:

    MD Anderson

    Sue,

    MD Anderson in Houston Texas is where I received HDIL2.  Their care was wonderful and costs were similar to those posted by others.  Hope you succeed in your quest.

     

    Thanks

    For your responses. It is a HUGE cost that would not be covered by my health insurer. I may contact a few centres to see if they would negotiate fees! My concern, of course, is the low percentage of success. I have discussed this treatment with my oncologist who admits she knows very little about HDIL2 but was going to enquire with her colleague who has been involved in it way back when they did it in Australia. She seemed very pessemistic about it (I am sure she is a glass half empty person where I am the opposite). 

    My next lot of scans is April 3 which I am hoping shows stability. 

    Thanks again and hope you don't mind me asking more questions as I think of them.

    Sue

     

     

  • thaxter
    thaxter Member Posts: 124
    #6
    Just got the insurance statement for week 1

    At UVa hospital.  The hospital bill for week 1 of IL2 was about $77K.  This does not include the CT scan done on the day of admission or the port placement which together were over $10K.

    Of the $77K hospital bill, $66K was for drugs (I had 6 doses of IL2 during week 1--and only 3 during week 2 last week).  While I see that $77K was the bill, insurance settled for about half of that.  Under my policy each hospitalization is just $250.

  • GSRon
    GSRon Member Posts: 1,303 Member
    #7
    Suekub said:

    Thanks

    For your responses. It is a HUGE cost that would not be covered by my health insurer. I may contact a few centres to see if they would negotiate fees! My concern, of course, is the low percentage of success. I have discussed this treatment with my oncologist who admits she knows very little about HDIL2 but was going to enquire with her colleague who has been involved in it way back when they did it in Australia. She seemed very pessemistic about it (I am sure she is a glass half empty person where I am the opposite). 

    My next lot of scans is April 3 which I am hoping shows stability. 

    Thanks again and hope you don't mind me asking more questions as I think of them.

    Sue

     

     

    Hi Sue.. Do you currently

    Hi Sue.. Do you currently have any Mets..?  And what treatments have you had so far..?  Have you exhausted the allowed treatments  down there..??

    Ron

  • Suekub
    Suekub Member Posts: 137
    #8
    GSRon said:

    Hi Sue.. Do you currently

    Hi Sue.. Do you currently have any Mets..?  And what treatments have you had so far..?  Have you exhausted the allowed treatments  down there..??

    Ron

    No shortage of mets

    Votrient failed, presently on Afinitor which is a very easy drug to take, very few side effects which I hope is not an indication of the drug not working. I have a stable met on L1 for which I had radiation, mets to spleen and pancreas, psoas muscle, thyroid (removed) but had postive margins plus possible liver which could also be haemangiomas. Next scan April 3.

    If Afinitor fails not sure what next, oncologist is keen to give Sutent a try only other alternative I think is axitinib which comes at a high cost as not covered by our pharmaceutical benefits scheme nor private insurance. I can't help but feel options are running out. We might have one of the best public health systems in the world but so many things are beyond the reach of many even for those of us who have health insurance.

    thanks everybody for your replies. I will consider contacting hospitals direct to see if it possible to negotiate costs. Good luck Thaxter.

    Sue

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #9
    payment

    Hi Sue.  I wanted to let you know that you can negotiate with most hospital billing offices.  It has been my experience that they may be willing to accept the lowest payment that they recieve from government sponsored insurance.  So, if you can find out what Medicare or medicaid pays for a service, along with the copay of the patient, this is the amount that you negotiate with.  Speak with the Business Office Manager, and go above them to the CFO.  The office manager will try to get you to set up credit and make payments.  Offer less money and cash, one time payment.  It works.  Afterall, that is what they contract for as a minimum amount. 

    I was also wondering what things may be like if you went to Canada for treatment.  It's my understanding they have government sponsored healthcare and offer IL2.  Sorry I know nothing more about it.

    I wish you well.  Congrats on your daughter being a senior this year.  Another milestone!

    Annie

  • GSRon
    GSRon Member Posts: 1,303 Member
    #10
    Suekub said:

    No shortage of mets

    Votrient failed, presently on Afinitor which is a very easy drug to take, very few side effects which I hope is not an indication of the drug not working. I have a stable met on L1 for which I had radiation, mets to spleen and pancreas, psoas muscle, thyroid (removed) but had postive margins plus possible liver which could also be haemangiomas. Next scan April 3.

    If Afinitor fails not sure what next, oncologist is keen to give Sutent a try only other alternative I think is axitinib which comes at a high cost as not covered by our pharmaceutical benefits scheme nor private insurance. I can't help but feel options are running out. We might have one of the best public health systems in the world but so many things are beyond the reach of many even for those of us who have health insurance.

    thanks everybody for your replies. I will consider contacting hospitals direct to see if it possible to negotiate costs. Good luck Thaxter.

    Sue

     

    Hi Sue, I now get it.. yes I

    Hi Sue, I now get it.. yes I can see why you would like to try the IL-2.  Sad that in some countries they do not approve some drugs due to cost, Vs helping people.  This seems to be a "theme" in countries with a national health scheme.

    Good Luck..!

    Ron

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