Forgive me for what is likely to be a lengthy (and at times meandering) post. I have been diagnosed by my local hematologist with MDS (a form of blood cancer). That said, I've gotten second and third opinions from some of the leading experts in the field (Fred Hutchinson Cancer Research Center in Seattle and my former hematologist who used to be on the faculty at the cancer center at Johns Hopkins Hospital.) They say that my bone marrow biopsies (one in 2010 and one earlier this year) are NOT diagnostic of MDS. They say, however, that the tests don't rule out the possibility that MDS is "brewing". The test isn't like a pregnancy test (either you are or aren't). The test can confirm MDS, but not completely rule it out.
Fast forward to today. My COBRA insurance will be running out soon and I'm researching ACA insurance options. So far, many of the drugs used to treat MDS are not covered by most insurance companies. They are very expensive and only designed to extend life. A bone marrow/stem cell transplant (risky and has limited success) is the only potential cure. Here are my questions:
if you've had experience with expensive specialty drugs ($10,000 a month) can you shed some light on the situation? Does insurance treat coverage differently if the medication is administered in the hospital, or other medical facility...than they do medication that is taken at home? In other words, is the drug covered in the hospital a "medical benefit" instead of prescription benefit? If the drug is not covered by insurance, I know that some pharmaceutical companies offer financial assistance. Any experience with how much they're likely to help? Is the assistance based on income...or is it also means tested (i.e. how much $$$ you have).
I realize I'm really thinking ahead, but since MDS could well be in my future...planning ahead seems like a prudent thing to do.
Any input would greatly appreciated.
Fast forward to today. My COBRA insurance will be running out soon and I'm researching ACA insurance options. So far, many of the drugs used to treat MDS are not covered by most insurance companies. They are very expensive and only designed to extend life. A bone marrow/stem cell transplant (risky and has limited success) is the only potential cure. Here are my questions:
if you've had experience with expensive specialty drugs ($10,000 a month) can you shed some light on the situation? Does insurance treat coverage differently if the medication is administered in the hospital, or other medical facility...than they do medication that is taken at home? In other words, is the drug covered in the hospital a "medical benefit" instead of prescription benefit? If the drug is not covered by insurance, I know that some pharmaceutical companies offer financial assistance. Any experience with how much they're likely to help? Is the assistance based on income...or is it also means tested (i.e. how much $$$ you have).
I realize I'm really thinking ahead, but since MDS could well be in my future...planning ahead seems like a prudent thing to do.
Any input would greatly appreciated.