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NOW is time to voice concerns about WTC Medical Monitoring

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PostPosted: Mon Mar 29, 2010 10:51 pm    Post subject: NOW is time to voice concerns about WTC Medical Monitoring
From Mon Mar 29, 2010 3:00 am to Sat Apr 03, 2010 2:59 am (included)
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Dear WTC Community Member,

Almost a year ago after hearing many concerns that people in our Ground Zero community had regarding the Mt. Sinai WTC Medical Monitoring & Treatment Program &/or Centers of Excellence, I initiated an effort to communicate them to the program directors Dr.'s Jacqueline Moline & Michael Crane. I also reached out to the New York City Department of Health & Mental Hygiene (NYC DOHMH), who in collaboration with the Agency for Toxic Substances & Disease Registry (ATSDR) created the WTC Health Registry in July '02.

Over the subsequent months, I posted email requests for input from the 9/11 community via direct contact to persons on my e-list, or through various WTC-related groups. I asked for people to contact me with their list of concerns & any attempts made to communicate their concerns directly to Mt. Sinai or the Centers of Excellence via email or letters. I wanted to compile a fairly exhaustive account of issues which our community feels have not been addressed by the monitoring or treatment programs.

My intent was to get a consensus of any similar issues & an understanding of any other concerns unique to you. I wanted to have an idea if you'd voiced these concerns in writing to the program's treatment doctors, or directors...& whether or not you'd had your issues resolved.

I have heard many in our community verbally "venting" about the inadequacies of the WTC MMTP, yet, when I asked for folks to email me with those concerns, I got few responses with few specifics. My sister Denise Villamia & I have both written the WTC MMTP directors with our respective thoughts...but we are 2 people among the approximate 27,000 participants in the program & the 71,000 registered with the NYC WTC Health Registry (WTCHR).

According to a 2008 report titled "An Overview of 9/11 Experiences & Respiratory & Mental Health Conditions Among World Trade Center Health Registry Enrollees" published in the Journal of Urban Health: Bulletin of the New York Academy of Medicine, Volume 85, No. 6...the number of persons believed to have been affected by toxic exposure has been estimated by the WTCHR to be 409,492. This figure includes the responders, volunteers, area residents, employers/employees, & students...besides those who just happened to be in the vicinity when the towers fell. Although 409,492 were eligible to enroll between September '03 & November '04, only 71,437 did...reflecting only 17.4% of the estimated exposed population. And this figure includes an overlap of those who may also be enrolled in the Mt. Sinai WTC MMTP. So the number of those being "monitored" is clearly a fraction of the total.

Therefore, as it is, the programs in place are servicing a very small portion of the affected population. All the more reason that we who are enrolled in them must make every effort to insure that our conditions are being properly tracked, recorded & evaluated for patterns of symptoms that are manifesting in an inordinately high percentage of our population. If we do not feel this is being done to the best of their ability...we have to SPEAK UP.

I recently received word that Dr.'s Moline & Crane are making themselves available to meet with us the beginning of the 2nd week in April regarding our concerns. So there is not as much time as I would have liked to gather input from you in preparation of our meeting. Dr. Moline is leaving the WTC MMTP & this is the only window of opportunity she has to meet with us. I do not know what position she will be assuming, nor who will be replacing her.

If you want to see improvements made in the current 9/11 health care programs, it is imperative that you share your impressions now so that I may bring them to the discussion table. We have a unique opportunity to sit with these directors & have an exchange of ideas on how their programs can better serve our respective needs going forward.

Please set aside a few minutes of your time in the next couple of days & email me a bullet point list of any aspect of the program you would like addressed at the meeting. This can be with the "monitoring" part, the "treatment" part or both. Those of us at the meeting are going to be representing you. We each have had our own personal experience with the program which we will be sharing, but we want to be as inclusive as possible. If you have at any point expressed your concerns to them in writing, please tell us to whom you addressed your letter or email, the date & nature of your concern, & if your issue was acknowledged & resolved or ignored.

I realize I am asking you to work on this in the midst of celebrating Passover & Easter. The timing is unfortunately not ideal, but we had little control as to the scheduling of the date for the meeting. I'd been in contact with them since the fall regarding our request to meet. That is why I was trying to gather your feedback back then...so we would be prepared for the possibility of meeting with them. After all these months, I was given the date the end of last week...& there is no flexibility...so there are only these next few days to compile our data.

I'd appreciate your understanding how important this is. What goes on at this meeting can very positively affect the care we receive from the program. Let your voice count. We need to make a collaborative effort. I look forward to hearing from you. Please send your responses directly to my email: phoenixrjv@yahoo.com.

Rhonda Villamia
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