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Thread: ACA insurance plans don't cover major cancer centers

  1. #1
    Super Moderator Top User ddessert's Avatar
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    ACA insurance plans don't cover major cancer centers

    I've been trying to choose a new insurance plan for 2016. My main cancer center has been MD Anderson in Houston. Recently, UT Southwestern in Dallas (much closer) became the 2nd NCI-designated cancer center in Texas. But in reviewing both hospitals, I find that no ACA plans are accepted by either hospital.

    There are a number of insurance plans accepted by either hospital, but they are all group plans. This is a trend that has been ongoing across the country. Insurance companies have been losing money on PPO plans and have shut them down. So I am trying to figure out how to find coverage for my major cancer centers. And it turns out I'm not alone. Several health insurance brokers have said they've been unable to find individual plans for cancer patients. The best recommendation I've had is to supplement an ACA plan with Gap coverage after Jan 1, but no details on how that would work.

    I'm wondering if there are others who've run into the same thing and have ideas about coverage?
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  2. #2
    Have you tried talking to the Financial Department at the hospitals about this? They might have some solutions for you.
    His fight is over. How brave he was. 47 years of love.

  3. #3
    Administrator Top User Kermica's Avatar
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    This has been a problem with the ACA since the program went into law, unfortunately. Many folks have discovered it the hard way as you are experiencing. I don't have a good answer for you, ddessert. Any chance of qualifying for Medicare instead? The problem is much less acute on that side of the fence. Good luck with this and please do let us know how you make out.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

  4. #4
    Super Moderator Top User ddessert's Avatar
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    I re-contacted UT Southwestern and in the last week they have added on six plans that individuals can purchase. Five through the ACA and one privately. So that is excellent news.

    MD Anderson is still holding out from any ACA plans and have said the only option might be as out-of-network coverage if the insurers provide it. MD Anderson was already very expensive and out-of-network might be a last resort.

    I've spent a lot of time on hold and answering the same personal questions just be able to ask about coverage of a specific plan. It's 20+ minutes of preliminaries to get to the point of asking about the plans. Every time you call an insurance company. And when you get to that point, most times it's a question that these external brokers can't answer. The insurance phone banks just forward all their calls to these brokers. I'm on 1st name basis with one broker in Austin who I've been routed to three times. He pays $40 for each of these calls routed to him and has to ask for a refund every time I call. But he's also been a lot of help in telling me what is going on in the background.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  5. #5
    Experienced User
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    Living in Calif we have had Blue Shield PPO offered on ACA exchange for few years and expected to be offered in 2018. Its $600 monthly premium without subsidies and $2500 deductible. Centers like USC Keck and Ronald Reagan UCLA are included. If someone lived in Northern Calif, UCSF is on list.

 

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