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Uber Expensive Specialty Drugs
Old 10-21-2015, 04:52 PM   #1
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Uber Expensive Specialty Drugs

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.
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Old 10-21-2015, 05:09 PM   #2
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I'm so sorry to hear what you're going through. MDS and other blood related disorders are very complicated illnesses, and often hereditary. Treatments are often the same as for cancer, even though they may not be cancerous. The ACA may be your only source of assistance, and you may have to take what's offered. Pharmaceutical companies often offer assistance to those without drug coverage, but it varies between companies. It's usually offered across the board--not means tested. It sounds as if you're in really good hands, and hopefully you're treatable. Just take it step by step, and be optimistic. It's a pretty rare thing to have--which works on your side.
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Old 10-21-2015, 05:45 PM   #3
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Perhaps you could ask your medical group what their experience is........I seem to recall that similar treatments (as opposed to a pill) are covered under medical benefits, not prescription. The medical group should know who they would bill.
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Old 10-21-2015, 06:00 PM   #4
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Quote:
Originally Posted by ARB57 View Post
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).
Bummer to hear that, ARB57. A tough situation, made more difficult by insurance practices.

Drug coverage does not usually depend on where / how they are administered (hospital vs pharmacy). Some companies do offer financial assistance, but much of that is directed to low income people.

Insurance companies publish drug formulates. These show what drugs are covered, and how much the copay is for each one, broken into tiers. The formularies differ from year to year and between insurers, and aren't necessarily different for ACA policies vs other group policies.

Medicare D is a drug plan. On the Medicare website there is a tool where you input your prescriptions and they show you the cost of coverage among different insurers. Even if you are not eligible for Medicare, this tool might help you find an insurer that includes the drugs on your list in their forumulary. https://www.medicare.gov/find-a-plan...ions/home.aspx
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Old 10-21-2015, 06:13 PM   #5
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I'm sorry to hear this. I hope you find the link below helpful.

Financial Resources | Aplastic Anemia & MDS International Foundation

The following link pre-dates the ACA but still contains relevant information.

Topic: Best Ins companies for covering drug cost | MDS Foundation
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Old 10-21-2015, 06:25 PM   #6
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Originally Posted by SCGamecock View Post
I'm sorry to hear this. I hope you find the link below helpful.

Financial Resources | Aplastic Anemia & MDS International Foundation

The following link pre-dates the ACA but still contains relevant information.

Topic: Best Ins companies for covering drug cost | MDS Foundation
From one of the links here: for old folks anyway, suggests that these are covered by pt B (Medical), not pt. D (Drug).......so checking the formulary for Pt D companies might not help. Don't know about younger folks......

"Hi Chuck,
Age is a factor. If you are on medicare, Part B will cover drugs such as Procrit, Aranesp, Neupogen and some other drugs as long as they are administered in the docs office. A supplemental will pick up what mediacre does not.
Your doc or someone in his/her office specializing in insurance issues can provide you with the info."

https://www.medicare.gov/coverage/chemotherapy.html

perhaps this might be useful:
http://www.cancer.org/treatment/trea...ying-for-chemo

for younger folks:
http://www.acscan.org/content/wp-con...whitepaper.pdf

"Cancer drugs typically administered by a physician, such as intravenous chemotherapy, are
often not listed on formularies. This is likely because these drugs are covered under the
medical, as opposed to the prescription drug, benefit. We were unable to find publicly-available
lists of drugs covered under the medical benefit for plans not listing these drugs on their
formulary. "
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Old 10-26-2015, 02:22 PM   #7
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Thank you all for your kind words, links and information. Very much appreciated.
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