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Author Topic: Looking for help in Los Angeles  (Read 2318 times)

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Offline WithMTN

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Looking for help in Los Angeles
« on: November 02, 2006, 08:11:11 AM »
I apologize if I offend by posting this in more than one catagory :'(
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Ideally, I'm searching for someone who can help me figure out some way of getting ACI or some other cartilage grafting procedure in La La Land.

About me: I am uninsured, and poor (a "starving actor," ho ho). I tore my ACL in '02, had it reconstructed at County-USC in '04, and had an arthroscopy in August (also at County-USC) to remove some plica. During my ACL reconstruction in '04, it was noted that I had some degree of articular cartilage damage, and according to the operative report from my most recent surgery, it is now quite bad (grade III-IV). Subjectively, this tracks with the increasing degree of pain in my right knee; now I can no longer run or walk without pain, standing is unpleasant, and I have become a hermit crab.

According to the orthopods at County-USC, I am an excellent candidate for ACI, and they'd like to do it, BUT THEY CAN'T because County-USC won't pay for any articular cartilage grafting procedures. And, I'm told, my defects are too large for microfracture, and I'm too young (34) for a unicompartmental knee replacement. And, fwiw, there is no way in hell I can pony up the $30,000 for Carticel.

Soooo...Short of winning the lottery or shooting myself, does anyone have suggestions, email addresses, phone numbers, etc? I have already tried to get into a clinical trial and was rejected due to my recent surgery & lack of insurance...

Offline dillon24

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Re: Looking for help in Los Angeles
« Reply #1 on: November 02, 2006, 07:00:53 PM »
Sorry to hear about your dilemma and I don't have any answers. I can pass along some information that can shed a little light on things for you.   The way I understand it, Genzyme Tissue Repair, the manufacturer of Carticel, uses a company called US BioServices as their sole distributor in the US for the Carticel product.  From what I was told when I went through the process, is that they only sell the Carticel product to insurance companies.  They do not sell it to doctors, clinics,  hospitals, or individuals.  The list price for the Carticel is $49,400 (according to my insurance statement). The insurance company(s) has a worked out price with them for about $20,000.

Perhaps if there is anyway to get into an insurance program that covers this, that would be your best and only option the way I understand it.  I know that may be tough, considering most insurance companies, if they do their due diligence, would consider your knee problems a "pre-existing" condition, and may not cover it.

Perhaps someone else will have some info or know something different than I do.

I wish you the best in finding an adequate solution for your knee problems.

Dave
1997 - Lt knee - Microfracture and menisectomy
2006 - Lt knee - Chondroplasty and Carticel Biopsy
2006 - Lt knee - ACI (October)

Offline WithMTN

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Re: Looking for help in Los Angeles
« Reply #2 on: November 02, 2006, 08:38:03 PM »
Sorry to hear about your dilemma and I don't have any answers. I can pass along some information that can shed a little light on things for you.   The way I understand it, Genzyme Tissue Repair, the manufacturer of Carticel, uses a company called US BioServices as their sole distributor in the US for the Carticel product.  From what I was told when I went through the process, is that they only sell the Carticel product to insurance companies.  They do not sell it to doctors, clinics,  hospitals, or individuals.  The list price for the Carticel is $49,400 (according to my insurance statement). The insurance company(s) has a worked out price with them for about $20,000.

Perhaps if there is anyway to get into an insurance program that covers this, that would be your best and only option the way I understand it.  I know that may be tough, considering most insurance companies, if they do their due diligence, would consider your knee problems a "pre-existing" condition, and may not cover it.

Perhaps someone else will have some info or know something different than I do.

I wish you the best in finding an adequate solution for your knee problems.

Dave
I appreciate the advice. I don't think the reason County-USC won't pay for this has to do with the above (although I could very well be wrong); they are part of a vast health beaucracy (the Los Angeles County system) which presumably purchases knee replacements, drugs, etc. in massive quantities at a discount rate...Anyway, that's neither here nor there...what strikes me as odd is that I'm told that they don't cover ANY cartilage grafting procedure (such as OATS, for example, which might work for me)...I'm baffled by that, but perhaps, if I can actually get the orthopod (Dr. Vangsness) I've left 2 messages for to actually speak to me, I can find out why...

Offline runnerbeth

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Re: Looking for help in Los Angeles
« Reply #3 on: November 03, 2006, 02:13:15 PM »
Where is your cartilage damage?  My previous insurance company did not cover ACI or similar procedures for patella defects.  They said the results on patella defects for ACI were not proven and considered it to be "experimental".  They would only pay for microfracture.  I had the microfracture, which didn't work.  I have since moved and changed jobs and got new insurance that did cover ACI, which I had a little over 4 months ago.  So maybe it's the location of your defect that is the problem and not the procedure itself?  Just a possibility.

I lived in LA until earlier this year and had a great OS who is really well known for articular cartilage problems.  Let me know if you are interested in getting a second opinion and I can pass along his info.

Good luck!
Beth

Offline Nick_Knack

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Re: Looking for help in Los Angeles
« Reply #4 on: November 03, 2006, 03:32:19 PM »
Dr. Burt Mandelbaum is one of the 4 big dogs in ACI land in the U.S.  And you are in luck, he lives in L.A.  He is the team physician for the U.S. National Soccer team and probably a butt load of other affiliations.  You'll have as good a shot as w/ anyone w/ him.


Best Of Luck


Nick
Age: 35
1989 rt ACL (+25 degrees ext loss)
1994 rt ACL resection (+ 10 deg)
2001 rt ACL revision (+ 10 deg)
2003 rt med meniscus repair (+10 deg)
2004 rt LOA and post capsulotmy (zero degrees)
2005 rt LOA and tib bone plug removal (even w/ other leg)
2006 rt Fulkerson TTT & ACI Carticel

Offline peggy1

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Re: Looking for help in Los Angeles
« Reply #5 on: November 03, 2006, 04:54:14 PM »
Find out what hospital you would have this procedure done at and then call one of the social workers there. They may be able to point you in the right direction .
Most hospitals have no cost or low cost built into their budgets for people who don't have or can't afford insurance.

Good Luck,

Peggy




Offline WithMTN

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Re: Looking for help in Los Angeles
« Reply #6 on: November 03, 2006, 10:39:16 PM »
Dr. Burt Mandelbaum is one of the 4 big dogs in ACI land in the U.S.  And you are in luck, he lives in L.A.  He is the team physician for the U.S. National Soccer team and probably a butt load of other affiliations.  You'll have as good a shot as w/ anyone w/ him.


Best Of Luck


Nick
Thanks, Nick. I was rejected from BM's clinical trial due to my previous surgery, and after being informed of this, contacted two of his assistants via email (Diane Watanabe and Jeff-something) to plead for any help, suggestions, etc. from the Good Doctor. My emails were ignored. My impression of BM is, shall we say, not as high as yours?

Offline WithMTN

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Re: Looking for help in Los Angeles
« Reply #7 on: November 03, 2006, 10:44:20 PM »
Find out what hospital you would have this procedure done at and then call one of the social workers there. They may be able to point you in the right direction .
Most hospitals have no cost or low cost built into their budgets for people who don't have or can't afford insurance.

Good Luck,

Peggy




Thank you. Good suggestion...