Need help with Patient Advocate information please.

[Motown_Johnny]

A good friend of mine, of ~33 years now, has had a long run of medical issues. I don't need to give you a laundry list so I will skip to the point.

She is in need of a specific medication, for which there is not a generic substitute, and her insurance company is not willing to pay for it. She was unable to work for several months due to illness and is still fighting her disability claim in court so this lotion/creme that runs $500.00 a tube is not an option for her if she needs to pay out of pocket.


I can provide details if necessary but I am really just trying to point her in the right direction. All I can find is the Patient Advocate Foundation. Does anyone have any knowledge of this organization or others like it?

Any help is greatly appreciated, thanks.

[Ms. Toad]

1. If she has not done so already,

She needs to appeal to her insurance company.

Insurance companies routinely reject step therapy drugs (drugs where you have to try something else first). A competent doctor both knows what these are, and knows how to submit the pre-authorization or appeal - but we recently ran into a doctor who was otherwise competent who was absolutely clueless about this process. (If this is the basis for the denial you should be able to tell this from the plan benefits documents.)

Insurance companies also typically have a formulary (a list of drugs which are approved). As long as you don't have the option to get some coverage for off-formulary drugs (Kaiser's trick), you can usually appeal a denial for an off formulary drug based on medical necessity. Your friend will need her doctor's cooperation to appeal, and the doctor will have to convince the powers that be that none of the formulary drugs are medically appropriate.

Finally, if she can't get it via an insurance appeal, go to the drug manufacturer's site and see if they have a compassionate prescription drug program your friend qualifies for.

[Motown_Johnny]

2. She has been doing that for months.

The really bad part here is that she does insurance for a living. Even she hasn't been able to get it done.

Checking the drug manufacturer's site for compassionate prescription is a great idea. Thanks.

[Ms. Toad]

3. Has she got a cooperative doctor?

My two biggest challenges are fighting to get to talk to the right person at the insurance company, and getting the doctor to understand s/he must be involved in the appeal (if they don't do it voluntarily).

What is the reason they are giving for denying it? And does she have a cooperative and competent doctor?

[Motown_Johnny]

5. From what I can tell.. yes

She is going to the University of Michigan for special treatments and the medicine she has not been able to get is through a U of M doctor who is also a professor. It sounds to me as if she is very happy with him but I have no first hand knowledge.

She does complain to me about problems with other doctors so I am inclined to believe that the doctor is not the problem here. She has also mentioned how helpful the nurses there are every time she calls.

[Ms. Toad]

6. Unfortunately, none of that means anything

when it comes to insurance.

Your friend may have already sorted it out - but my first steps would be to read through her benefits plan and make sure she thoroughly understands what her rights are as to prescription meds. There can be a ton of categories, and knowing which category a med falls into is the first step to getting it.

The second step is sorting out her appeal rights. If it is more complex than getting pre-approval, there has to be a denial which can then be formally appealed (there will be time limits and a process which should be set out in the denial letter).

Don't count on even competent doctors to understand insurance - my spouse's and daughter's favorite doctor is a complete idiot as to insurance.

[Motown_Johnny]

7. She does insurance for a living, and has for decades

Health insurance isn't really her thing but she is in the business and knows people who do it. She does Home, car, boat, motorcycle... etc. but has talked to others about it and I am under the impression that she knows that she should be able to get this specific medicine. She has had a series of illnesses for years now and has been through this kind of thing before. The nurses, and others in the office, also seem to know about this type of thing. That is why I make a point of mentioning them in my earlier post.

I know nothing about it myself. I pretty much send a check and hope things work out. Of course the difference is that I have not had any serious health issues.

This is why I thought the patient advocate route would be the logical next step.

[Ms. Toad]

8. Aside from going into business myself

(which I have actually contemplated), I don't know how to be useful beyond listing the steps I would follow.

Health insurance is a very different beastie than the other insurances - and the nurses & doctors in my spouse and daughter's doctor's office also knew all about these things. The problem is they knew wrong, based on their experience of having tried and failed repeatedly to get the meds for others without ever once having picked up the rules (or called someone) to figure out how they were supposed to get an exception. They initially told her she wouldn't be able to get it at all, despite it being listed on her formulary as an approved step therapy.

Short of finding a patient advocate, your friend really needs to dig in and do the hard work of figuring out whether she is entitled to the medicine (based on what her policy says), if she isn't - what her appeal rights are for medications outside the formulary. Find out why they were denied. And figure out who it is that will need to take the next step (her or the doctor).

Sorry to sound like a broken record - but really the only way to make the insurance companies behave is to know their game better than they do. I've had way too much exerience at it...

[Tanuki]

4. Try this website

WWW.needymeds.org
Be sure to look at the "other resources" menu on the left side of the home page.