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February 2013 Archives : Myeloma Voices

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The personal stories of toxic exposures potentially linked to myeloma just keep on coming! I am grateful to all who shared them with me. And once again, the 9/11 compensation fund was in the news on January 30th.  The first 15 compensation awards were given out--but none to cancer patients. Sheila Birnbaum, the special master of the $2.8-billion fund, said she had not awarded money for cancer yet because she had not received completed applications. Of the 16,000 people who have registered, only 2,500 have submitted eligibility forms, and, of those, only 190 have submitted compensation forms and many lack documentation!

So, the dreadful task of completing all the paperwork seems to be the key to potential compensation, and staff advice is apparently available. Myeloma patients need to work through these details in as timely a manner as possible to take advantage of available compensation, as the fund expires in 2016! Current estimates are that over of $8.5 billion will be required to compensate the thousands of people potentially eligible--$6 billion more than the amount approved by Congress in 2010. Being at the front of the queue could prove to be quite important!

Many people have responded to my previous blogs on this topic, including Hardy Jones. Hardy documented the toxic pollution in his system by having his tissue levels tested and had extremely high mercury levels reduced with chelation therapy. His unwavering work to assess and document environmental pollution (he was featured in an NPR story in 2009) is applauded by all and can hopefully lead to meaningful protections and regulatory changes.  

Comments posted by many people here support the correlation between toxic exposures and the subsequent diagnosis of myeloma. Unfortunately, these have to be evaluated on a case by case basis. There are two key points to keep in mind.  First, anyone concerned about toxic exposure should limit potentially harmful exposure. Second, fortunately, the outcomes for myeloma patients have been improving dramatically with use of novel therapies available in the last 5-10 years, with new drugs being approved in rapid succession. Early diagnosis and getting started on therapy are very important. I urge people who were exposed to toxic chemicals during 9/11 be screened for MGUS or smoldering myeloma, which are precursors to active myeloma. I strongly recommended this course of action since early diagnosis will undoubtedly lead to the best results.