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Author Topic: How to Deal with Insurance Issues  (Read 1542 times)

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Offline wiser

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How to Deal with Insurance Issues
« on: November 20, 2008, 09:06:00 AM »
I have been lucky for the past 5 years in that my insurance provider has honored all submissions from my HIV doc and prescriptions. However, my doc is now recommending that I consider a non FDA approved treatment (IL-2) injections to boost CD4+ count. The cost would be prohibitive ($5,000 for one cycle of injections) and some people have told me they needed 8 cycles before they achieved the treatment goal (could be $40,000+ for the year) which I could not afford.

I know the answer to my question. Pick up the phone and call the insurer. I am just a neophyte at negotiating for my needs with these kind of bureaucracies, especially if I have to put up a fight. I guess my doctor could help to make the case and submit a request of some kind? I know that the office personnel in the doctor's office have in some instances called insurance to inquire about approvals for treatments.

Any feedback on how to approach Insurance inquiries? I guess I know what to do, I just need some emotional support to take the step.

Offline Ann

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Re: How to Deal with Insurance Issues
« Reply #1 on: November 20, 2008, 10:27:25 AM »
Hi Wiser,

The ASO I belong to has an employee (Steve) who goes by the title of "patient advocate". I don't know if your ASO has one of these, but I know that if I had this sort of problem, Steve would be the first person I would call. He has negotiated for me on the phone in the past.

Good luck,
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Offline Joe K

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Re: How to Deal with Insurance Issues
« Reply #2 on: November 20, 2008, 12:04:36 PM »
Hey Wiser,

You have a real opportunity here, to get IL2, which could greatly improve your immune system, but you need to take the lead in the fight to get it approved, or at least paid for by someone, other than you.  Here is what I would suggest.  If you have an ASO with a patient advocate, then by all means use them, but you are still in charge.  Try and remove the emotion from this and put yourself in both your employers and insurance company places.

As an employee, if this treatment helps you, it allows you to be a healthier employee, thereby not needing extended sick leave and it will provide an emotional lift to you, that would be reflected in the quality of your work.  Same for the insurance company.  Yes, $40K is a lot of money, but not when compared with a week or two in the hospital.  This is what the insurer is looking at, not at you personally.  Also, do not forget that the insurer works for your employer and it is your company that has the final say, on any treatment for an employee.  This is why you also need to approach Human Resources and I would suggest taking a letter from your doctor, outlining why he believes this treatment is so necessary for you.

I suggest you start a list and write down all the areas that could be improved, because of this treatment and that includes quality of life issues.  You should also contact the manufacturer of IL2, because they have a compassionate use program, by which, if they accept you, they would provide the drug at no cost to you.  Then take that list and compose a letter of persuasion, that you can use with your employer and insurance company.

Your goal here is to convince your employer, that this treatment is worth the money and its cost will be repaid to the company, through your continued high level of achievement.

By your own admission, this whole issue is strange to you, but believe me, it will not be the last test you will face being poz.  Now is the time, my friend, when you need to stand up and make your needs known.  Look at it this way.  I assume you like your company and you want to remain employed, however, only you and your doctor, can make the argument on why you need this med.  A depressing reality to life with HIV, is that many times, we are the only ones who can truly advocate for our own needs.  You are not looking for a handout, you are looking at a drug, that may help to save your life. 

It is your turn, to stand up and advocate for yourself and if that gets your knees shaking, that is a good thing, as it will keep you sharp.  Just be honest and politely forceful and I suspect that you will gain access to the drug.  As always, if we can help, just let us know.  Good luck.
« Last Edit: November 20, 2008, 12:06:36 PM by killfoile »

Offline wiser

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Re: How to Deal with Insurance Issues
« Reply #3 on: November 20, 2008, 11:00:32 PM »
Thanks Ann and Joe. Your advice is very helpful and motivating. I see I have some work ahead of me. I will approach this an important project with a strategic plan. I can be stubborn and persistent when I want to be.

I am relatively new at living with HIV. I had a few mountains to climb in the beginning and I guess I got to a peaceful plateau for a few years where things were working well. It looks like I am at the beginning of a new mountain climb. And I appreciate your perspective Joe, that there will be more and more of them in the year's ahead.

Offline hotpuppy

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Re: How to Deal with Insurance Issues
« Reply #4 on: November 23, 2008, 10:24:18 PM »
Sell the savings and the benefits....

and God I hope you don't have to go to HR and make a mess.  I would be terrified to do that.  Fortunately I work for myself.  and soon I will be on insurance..... no picnic but better than living with no insurance.

I would make sure if you do go to HR for assistance that you remind them that they are required to keep your health issues PRIVATE, as in to not discuss with others. 

Insurance is a business, at the end of the day if you or your Doc can help show them the benefit this provides they will likely buy in.

Now, past that I don't know much about IL2 shots and it sounds expensive.... care to share a link about it? or explain it some?
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline wiser

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Re: How to Deal with Insurance Issues
« Reply #5 on: November 24, 2008, 10:54:02 PM »
Thanks for the advice. There is a strand om IL=2 on this site in the Treatment and Side effects forum. Also there is an article you can access here bu entering IL-2 into the search box. Simply it is drug approved for cancer treatment that seems to raise CD4 T cells counts in those of who are not getting an increase in Tcells even though Viral Load is being get low or undetectable. Research has not yet supported it's efficacy as a treatment that keeps Opportunisitc Infections away, hence is it not approved for treatment by FDA and could not be covered by insurance. It consists of 5 injections over a five day period. Some on this sight have gone through 8 series of the 5 injections over a year. Some have had incrrases in T cells some have not. And as I said the controversy is whether the T Cell count correlates with improved immune system function.


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