jpfletchjr

Linny,

Thanks for the info on John Hopkins.  We are also looking into what may be available at Sloan Kettering. Our concern is whether any company will offer anything but the bare-bone coverage that is mandated by the ACA.  We won't give up.

My only message to others in search of coverage is that when someone joins an "exchange" they may not be able to access the appropriate doctors and drugs like ipilimumab may not be available.  Research, research and more research….and go on this message board and get some help.

Regards

John

Linny,

Thanks for the info on John Hopkins.  We are also looking into what may be available at Sloan Kettering. Our concern is whether any company will offer anything but the bare-bone coverage that is mandated by the ACA.  We won't give up.

My only message to others in search of coverage is that when someone joins an "exchange" they may not be able to access the appropriate doctors and drugs like ipilimumab may not be available.  Research, research and more research….and go on this message board and get some help.

Regards

John

Linny,

Thanks for the info on John Hopkins.  We are also looking into what may be available at Sloan Kettering. Our concern is whether any company will offer anything but the bare-bone coverage that is mandated by the ACA.  We won't give up.

My only message to others in search of coverage is that when someone joins an "exchange" they may not be able to access the appropriate doctors and drugs like ipilimumab may not be available.  Research, research and more research….and go on this message board and get some help.

Regards

John

Anyone relying upon Obamacare – the Affordable Care Act – should take a long look at your lack of options when it comes to available doctors as well as essentially the exclusion to the most advanced drugs we hope will assist in the control of melanoma.  We renewed our individual coverage effective 11/30/13 in order to avoid enrolling in the local Obama plan. My wife was diagnosed with stage IV in her lung on 4/1.  Tomorrow we go for her third infusion of ipilimumab.  If we were part of Obamacare, there would be no coverage for our oncologist nor the infusions.  She is BRAF positive, so we plan on pursing the next step in therapy some time in August.  That therapy also would not be covered.

In anticipation of our need to find coverage on December 1st. I have researched the local Obamacare available and there are NO oncologists on the list.  As stated none of the drugs will be covered.  In an effort to find better options I checked coverage in the Washington DC area where we have family and found a total of 7 oncologists listed.  I have no idea if they are taking new patients and could not find a list of approved drugs for those plans.  I am going to assume the worse at this time and guess that we will not have access to the drugs we may need to contain her cancer.

So, we will be required to join an exchange that will charge us $ 10k or more per year, and not gain access to qualifed doctors or the appropriate therapy.  There are several favorable features in the ACA, but by no means does it do what it portends to accomplish.  

Our out of pocket costs for my wife's treatment with Obamacare would exceed $ 500,000.  So don't piss on my leg and tell me its raining.

I will continue to research plans in other states and will move our residence if something of value does arise.  But I will not hold my breath.

Anyone relying upon Obamacare – the Affordable Care Act – should take a long look at your lack of options when it comes to available doctors as well as essentially the exclusion to the most advanced drugs we hope will assist in the control of melanoma.  We renewed our individual coverage effective 11/30/13 in order to avoid enrolling in the local Obama plan. My wife was diagnosed with stage IV in her lung on 4/1.  Tomorrow we go for her third infusion of ipilimumab.  If we were part of Obamacare, there would be no coverage for our oncologist nor the infusions.  She is BRAF positive, so we plan on pursing the next step in therapy some time in August.  That therapy also would not be covered.

In anticipation of our need to find coverage on December 1st. I have researched the local Obamacare available and there are NO oncologists on the list.  As stated none of the drugs will be covered.  In an effort to find better options I checked coverage in the Washington DC area where we have family and found a total of 7 oncologists listed.  I have no idea if they are taking new patients and could not find a list of approved drugs for those plans.  I am going to assume the worse at this time and guess that we will not have access to the drugs we may need to contain her cancer.

So, we will be required to join an exchange that will charge us $ 10k or more per year, and not gain access to qualifed doctors or the appropriate therapy.  There are several favorable features in the ACA, but by no means does it do what it portends to accomplish.  

Our out of pocket costs for my wife's treatment with Obamacare would exceed $ 500,000.  So don't piss on my leg and tell me its raining.

I will continue to research plans in other states and will move our residence if something of value does arise.  But I will not hold my breath.

Anyone relying upon Obamacare – the Affordable Care Act – should take a long look at your lack of options when it comes to available doctors as well as essentially the exclusion to the most advanced drugs we hope will assist in the control of melanoma.  We renewed our individual coverage effective 11/30/13 in order to avoid enrolling in the local Obama plan. My wife was diagnosed with stage IV in her lung on 4/1.  Tomorrow we go for her third infusion of ipilimumab.  If we were part of Obamacare, there would be no coverage for our oncologist nor the infusions.  She is BRAF positive, so we plan on pursing the next step in therapy some time in August.  That therapy also would not be covered.

In anticipation of our need to find coverage on December 1st. I have researched the local Obamacare available and there are NO oncologists on the list.  As stated none of the drugs will be covered.  In an effort to find better options I checked coverage in the Washington DC area where we have family and found a total of 7 oncologists listed.  I have no idea if they are taking new patients and could not find a list of approved drugs for those plans.  I am going to assume the worse at this time and guess that we will not have access to the drugs we may need to contain her cancer.

So, we will be required to join an exchange that will charge us $ 10k or more per year, and not gain access to qualifed doctors or the appropriate therapy.  There are several favorable features in the ACA, but by no means does it do what it portends to accomplish.  

Our out of pocket costs for my wife's treatment with Obamacare would exceed $ 500,000.  So don't piss on my leg and tell me its raining.

I will continue to research plans in other states and will move our residence if something of value does arise.  But I will not hold my breath.

You can also go to the the National Cancer Institute and look up clinical trials there.   The MK 3475 trial is under the trial protocol ID P07990 and also under NCT01295827.  When you call to check on a location for the trials, refer to NCT01295827.  Their number is 888-577-8839.  I found a location in Atlanta at Emory University and we trying to see it my wife is a viable candidate at this time.  Good luck in your search.

You can also go to the the National Cancer Institute and look up clinical trials there.   The MK 3475 trial is under the trial protocol ID P07990 and also under NCT01295827.  When you call to check on a location for the trials, refer to NCT01295827.  Their number is 888-577-8839.  I found a location in Atlanta at Emory University and we trying to see it my wife is a viable candidate at this time.  Good luck in your search.

You can also go to the the National Cancer Institute and look up clinical trials there.   The MK 3475 trial is under the trial protocol ID P07990 and also under NCT01295827.  When you call to check on a location for the trials, refer to NCT01295827.  Their number is 888-577-8839.  I found a location in Atlanta at Emory University and we trying to see it my wife is a viable candidate at this time.  Good luck in your search.