[RadiantTiger]

Is multiple myeloma one of the most expensive diseases?

by RadiantTiger on Tue Mar 10, 2015 11:26 am

I am wondering if multiple myeloma might be one of the most expensive diseases to treat. I am newly diagnosed, age 54, and am trying to figure out how to get top-notch care but not go broke.

I am covered close to 100% through the VA, but going VA-only will probably limit my treatment options and I would not have access to the most experienced specialists and clinical trials unless I get private insurance. (I just started treatment a few weeks ago, and am currently getting the Revlimid / Velcade / dexamethosone [RVD] induction treatment with the VA.)

Several people have recommended Stanford as the best-rated facility within a 3 hour drive of my home. I'm guessing the out-of-pocket costs and travel expenses could equal my cost of insurance each year, once I go outside the VA system.

I know that Insurance companies can't deny you for pre-existing conditions any more, but how do they determine your premiums when you have a disease that may cost $600K or more to treat in the first few years! (assuming a possible stem cell transplant, plus the uber-pricey RVD treatments, plus ongoing expensive tests, etc)

I'm guessing the out-of-pocket costs and travel expenses to Stanford could equal my cost of insurance each year, once I go outside the VA system. I need to put a proposed budget together for the next few years, and evaluate whether Stanford is worth it.

Any recommendations on where to start for getting private insurance? Any recommended companies?

RT

[Multibilly]

Re: Is multiple myeloma one of the most expensive diseases?

by Multibilly on Tue Mar 10, 2015 1:25 pm

Radiant Tiger,

I think an option that may be available to you is to simply establish a relationship with a multiple myeloma specialist and to see that specialist 2-3 times a year. That specialist can then make recommendations on a treatment plan, but you could then be covered and receive your ongoing tests and treatment through the VA. That way, you would only be paying out-of-pocket for a couple of visits to the specialist each year (which would only be about $150/visit).

Of course, this approach would hinge on the VA doctor you are working with being willing to take guidance from an outside source. And you would need to verify which drugs the VA will cover (which one needs to do with just about any insurance company before signing up for a specific insurance policy)

My personal experience is that the doctors I have met with so far are happy to consider working with outside multiple myeloma specialists, if that is my desire. I know that several other folks on this forum use this type of arrangement, especially if they find that they don't have access to a multiple myeloma specialist in their local area.

I may be wrong, but I don't believe you have to be on a private insurance plan to get access to a clinical trial. But I think it is a good idea to get some recommendations from a true multiple myeloma specialist on just which trial to consider (I'm not sure that I would feel comfortable picking a trial on my own without the expert guidance of a specialist or two).