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HIV Health and Treatment Issues >> Treatment & Side Effects

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John H

Castleman's Syndrome
      #90154 - 02/22/04 07:30 PM

My friend Woody has Castleman’s Syndrome.

He’s failed on two chemotherapy drugs, cytoxan and rituximab. His physicians at UCLA Medical Center / Westwood have initiated treatment with the new anti-cancer drug Velcade. Blue Cross of California has now refused to cover the cost of Velcade. The appeal is now pending for an Independent Medical Review with the State of California Department of Managed Care.

Does anyone have any knowledge they could add for the treatment of Castleman’s with Velcade? This may assist the State in making a decision?

Can anyone offer any assistance in recommending an activist attorney who has knowledge of HIV issues and complications of HIV? Castleman’s Syndrome is a complication of HIV that does not fit the Blue Cross “algorithms”.

Woody was hospitalized at St. Joseph’s Medical Center in Burbank under the “care” of the Lakeside Medical Group for weeks in the middle of 2003. A friend recommended we talk to a Doctor at UCLA, who diagnosed him within two minutes. Now that we found the Doctor’s who can treat the illness, Blue Cross of California is interfering with the Doctor’s decisions, even after treatment has been initiated. We’ve been told this borders on malpractice, bad faith, and quality of care issues.

Any help would be appreciated. Please respond to

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Reged: 03/25/04
Posts: 4
Loc: North Carolina
Re: Castleman's Syndrome new
      #93804 - 03/30/04 03:57 AM

I'm not sure if they can help...but you might want to try the ACLU (American Civil Liberties Union).

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