WTC Medical Monitoring and Treatment Program
Full Steering Committee Meeting
Wednesday, December 1, 2010
Chair: Jim Melius, DrPH, MD, Laborers (JM)
Iris Udasin, MD UMDNJ (IU)
Carol Perret, UMDNJ (CP)
Dori Reissman, MD, MPH NIOSH (DR)
Larry Rhodes, NIOSH (LR)
Max Lum, NIOSH (ML)
Steve Markowitz, MD CBNS (SM)
Lauri Boni, CBNS (LB)
Michael Crane, MD MSSM CC (MC)
Matthew Cassidy, MSSM CC (MCy)
Garry Resnick, MSSM CC (GR)
Phil Landrigan, MD MSSM DCC (PL)
Jean Weiner, MSSM DCC (JW)
Scottie Hill, MSSM DCC (SH)
Ben Luft, MD LIOEHC (BL)
Lin Luo, Bellevue/NYU (LL)
Micki Siegel de Hernandez, CWA (MSdH)
Frank Tramontano, PBA (FT)
Chris McGrath, PBA (CM)
Vincent Variale, UEMSO (VV)
Eric Fay, UEMSO (EF)
Dave Tornberg, MD LHI (DT)
Terry Miles, Environmental Health Center (TM)
Tamara Smith, Environmental Health Center (TS)
Lara Glass, FDNY (LG)
Phil Mouren, FDNY (PM)
Kerry Kelly, MD FDNY (KK)
Dave Prezant, MD FDNY (DP)
Note takers: Annie Lok and Dana Schinestuhl
Report on recently deceased WTC Responders
DP: two police officers who recently died of cancer.
FT: David Mahmoud and Dan Ehmer.
IU: Harry Graves, bone cancer, member of NJ USAR and involved with FDNY and Elizabeth FD.
LL: 63 year old man, architect who assisted in restoration of buildings after 9/11, deputy director of DOHMH when he died- mesothelioma.
Approval of Minutes
Queens: Lauri Boni
Wait time: 1 week wait time.
Examinations/Capacity: We performed 90 monitoring exams in October: 15 V1s and 75 periodic. We scheduled 124 appointments with 26 no-shows and 17 cancellations. 9 patients were referred into physical health and 6 into mental health treatment: 14 initial and 50 follow up physical health exams; 10 initial and 129 follow up mental health exams; and 7 initial and 3 follow up social work/benefits visits. We still have the capacity to monitor 120 patients per month in our clinic, in addition to meeting our current level of treatment activity.
UMDNJ: Iris Udasin
Wait-time: We have a 2 week wait-time for monitoring, and no wait for treatment.
Examinations: We performed 66 monitoring exams in November.
New Developments: We are going to be transitioning to a new pharmacy benefits manager, Progressive Medical. The sleep apnea paper has been submitted to ROC.
Bellevue: Lin Luo
Wait time: There is a 2 week wait-time for a monitoring exam.
New Development: There is a new administrator for space who is more receptive to us.
National Program, Dave Tornberg
Active in Program – 3,600 Responders
Completed MHQs in November – 190
Completed Monitoring Exams 145 in November
Treatment – 1,253, Increase of 33
Environmental Health Center: Terry Miles
Wait time: Between 3 days and 3 weeks, depending on the site
Just over 5000 patients
Wait time is 3 days to 3 weeks
Adding new staff, including physician who was here last week and new psychologist.
Tamara will be leaving us next week for Tuesday’s Children as the Director of the 9/11 Responder Alliance.
Mount Sinai: Michael Crane
Examinations: 509 Monitoring exams in November, 60 V1s. We also had 60 new patients in treatment.
Challenges: Epic – using it and installing it. Getting a useable amount of past records in the system is a problem for us.
Consortium DCC: Matthew Cassidy
Data Management Core:
Health Outcomes Core:
Clinical Core/Disease Surveillance:
Member Services Core:
Steven Markowitz will report on the status of the scheduled for January 5, 2011 at Mount Sinai.
Monthly Scientific Meetings:
MSdH: When will program brochures be ready?
SH: they are being printed this week. I’ll reach out to Clinical Centers to see what they need. You can contact me to send them to you.
MSdH: (question about exam certification?)
JW: right now what each CC has to do is send in a face sheet, … and final letter. We are trying to computerize the process.
MSdH: when will the sarcoid paper be published?
JW: Dr Crowley knows the most about that and we’ll check in with her.
BL: We did not receive data from the DCC to give a report on the proposed satellite in Brooklyn.
JM: The data request went to the PPC.
DP: When FDNY proposed a distant satellite, NIOSH required us to do a zip code analysis to determine the numbers of patients.
BL: We have not paid any rent yet, but Down State has, and they are upset because they have not received any money from us.
SM: Has NIOSH approved a budget?
BL: They have set aside money within our budget for this.
JM: I talked to Roy at the last SC mtg, and he thought the process was appropriate.
FDNY: Dave Prezant
October was an amazing month for us. We performed 1,158 monitoring exams in October. Our outreach effort to retirees has also been successful.
Monitoring Exams (October)
1st Visit: 15
2nd Visit: 24
3rd Visit: 65
4th Visit: 143
5th Visit: 243
6th Visit: 276
7th Visit: 194
8th Visit: 118
9th Visit: 63
10th Visit: 17
Treatment Exams (October)
New Patients: 232
Unique Patients: 891
Current in Physical Health: 4,498
New Patients: 76
Unique Patients: 563
Current in Mental Health: 1,876
Major accomplishment last week – SAMQ and PH questionnaires have been revised and launched (successfully) online. It will also help is in the long run to generate automated referrals.
Our oracle update will be done in January and will be very helpful to providers which will allow them to graph out results.
We have been trying to generate three questions that every patient to ask three questions to their doctors. That was put off due to faulty skip logic. But now we should be able to do that. By January we should be able to give patients graphs of their PFT results and other values so they can show their doctors. We continue to try to pass papers for the Lancet initiative.
MC: these questionnaires are on the computer? The patient sits at the screen?
DP: yes, they can use touch screen, keyboard or mouse. And we have peers around to help them.
Long Island: Ben Luft
Wait-time: We are able to have monitoring patients scheduled within two weeks and treatment able to be scheduled on the same day if necessary. However, we typically fill most of the monitoring slots 4-6 weeks in advance but leave some slots for patients who call and need more immediate appointments.
Examinations and Retention: In October we saw 310 monitoring patients of which 53 were V1’s, 53 V2’s, 66 V3’s, 77 V4’s, 48 V5’s and 13 V6’s. During the past 12 months 2,322 patients utilized our physical treatment program and 888 utilized our mental health program. A total of 2,507 unique patients are currently in either group. During the month of October we conducted 376 physical health treatment visits and 522 mental health visits. Our SW benefit activity remains robust with slightly more than 200 visits in October. Our retention numbers should exceed 75% for all monitoring visits types. In November, despite our sites being closed on the 25th and 26th for Thanksgiving, we anticipate meeting, if not, surpassing the projected 300 monitoring exams.
Challenges: We continue to work toward meeting the Expanded Reporting requirements.
New Developments: Our Islandia site has upgraded to fiber connectivity and now has Wi-Fi capabilities. Our Oral History project is progressing very well with media venues expressing interest. Dr. Luft continues to work with other Stony Brook departments delivering educational programs to a wide variety of Stony Brook students.
We have identified a doctor to fill our vacancy and anticipate their starting in mid January or early February. We will consolidate sites in Nassau County- one instead of two. We’ll have a seminar series at Stony brook called “9/11, the anatomy of a health disaster.” It will be a broad array of people and expertise—historians, ministers, physicians, social workers. It will be a webinar and put on our web site.
ACTION ITEM: Dr. Luft to circulate the curriculum for the “9/11, the anatomy of a health disaster.” seminar.
Scientific meeting update, Steve Markowitz
It will be on January 5, 1-5PM at Mount Sinai, and all the PIs should have gotten notices. Half papers from FDNY, half from Consortium. Only published papers. 20 minute presentations, 5-10 minutes for questions. The purpose is for clinical providers to know what has been found. It’s limited to program personnel, SC members, DOH personnel, EHC personnel. If it’s useful and it has a good turnout, we can repeat it.
DR: Is it possible for conference call, for the NP doctors?
JW: not sure.
JM: I think it’s reasonable to consider for future such meetings.
NIOSH Update: Dori Reissman
Introduction: Max Lum, Director of Communications at NIOSH – handles all media issues related to WTC. We also handle the social media activities for NIOSH.
We are still waiting on the legislation, so there is not much of an update to give.
Cancer Update: Dave Prezant
We have been having some fantastic meetings on both cancer and exposure.
Exposure is defined as the same across all cohorts. We have been having meetings to discuss the definitions. We have analyzed the data to see if it follows similar paths for all programs (FD, Consortium, EHC, etc). We are also trying to create a common duration variable. We are hoping to be able to add that soon.
We have come up with a variety of cancer ascertainment rules. We have decided that we will be reporting two different types of definitions. We will be comparing to the registry definitions (because we are using their data). We are hoping to summarize these two projects (exposure and cancer) in abstract form, and eventually in journal form.
FT: What about releasing the data itself – just numbers?
DP: The raw numbers are very, very misleading. I feel as though we have an ethical responsibility to display this data correctly.
FT: By not reporting the data it limits other people’s use of it.
DP: Anyone can do the analysis once we provide the information to them. There are some experts that have said we should match to every registry.
PL: We follow a similar process.
FT: There has to be one cancer that came out of 9/11. We need someone to look at this data and help us.
KK: There are statistics available by the pension office. If you just want raw numbers, go there.
JM: I think the frustration is that this is taking too long.
DP: When we started this program, we were wrong. We did not start our data center to study cancer. We were focused on respiratory issues and PTSD issues. By the time we realized this mistake, it was around 2006. We have gotten 2 data dumps from NY State. If we do not get the next one (which was promised to be this month), we will move on and give you the data we already have without it.
ACTION ITEM: FDNY and NY/NJ Consortium need to provide a firm schedule for the release of cancer data at the January 5th meeting.
Legislative Update: Jim Melius
Last night we were told there was going to be a closure vote. It had been postponed. If you announce a cloture vote, at least 30 hours after the announcement, you vote on it. Senator Reid did say he would announce closure vote on this bill and two others. Today Republicans announced they would refuse to support closure vote until the tax law is resolved. So the schedule is up in the air now. We have 59 votes now, and may well have at least one more republican in support. The senate finance committee has offered up some other ways to pay for this bill, taxes and fees,, that may be more palatable to Republicans. There has been a lot of activity by the FD and PD and labor unions. Commissioner Kelly is down in DC today. There has been a lot of pressure from a lot of people. We should have a good chance of getting bill through. NIOSH sent 300+ pages of financial documentation to Senator Enzi’s office. There is serious Republican opposition to this, including Enzi and McConnell. Senators LeMieux, Murkowski, Kirk, Collins are pretty much committed. No Democratic opposition. Don’t know of any who would vote against it. The cloture vote is on the House approved bill, with the bad pay for. Some Senators don’t want to go on record as supporting that pay for.
PM: if there is a new pay for, won’t it go into conference?
Medical Monitoring Requirements, Dave Prezant
JM: there are people in treatment in this program who are not having their monitoring exams. Dave asked for data from everybody. The issue became how do we define “people coming back?”
DP: I proposed at the PI meeting that we come up with appropriate data questions. I thought the philo was that everyone would get treatment if they need it, even if they haven’t had monitoring (as long as they’re eligible). But I think once people are in treatment, they feel they don’t need to go to monitoring any more. Unless we explain to them that monitoring has broader questionnaires, and blood tests. Unless we explain and enforce that, people will drop out of monitoring. So I think we should tell people that they should schedule a monitoring exam before they next treatment appointment.
SM: I would oppose any coercion because it’s unethical. I don’t think we can tell them we will no longer treat you unless you come for monitoring.
BL: the way the program is currently constructed… it was first a monitoring program, then identified their diseases, then treated them. And treatment patients have a choice as to whether their monitoring data is included. The monitoring exam is important because it identifies diseases.
KK: most of our treatment and monitoring doctors do both. And we warn patients it might take some time. As a doctor without comprehensive information, treatment may not be complete. If you only see someone four times a year and give them brief evaluations, you’re missing the big picture.
DP: if we’re doing exams every year, certainly it’s acceptable to say they should have had an exam at least in the last two years.
SM: as long as you have the word “should” in there, I don’t object.
Data Sharing Protocols, Jean Weiner
Data sharing protocols were not discussed – to be discussed at PI meeting first.
Protocols: “Differing Physician Opinions on Patient Conditions in the Treatment Program”, “Discharge and/or Transfer of WTC Patient due to Behavioral Problems”, and Review of Responder Status in the Event there is Concern Regarding Misrepresentation of Status”.
ACTION ITEM: Review the “Differing Physician Opinions on Patient Conditions in the Treatment Program”, “Discharge and/or Transfer of WTC Patient due to Behavioral Problems”, and Review of Responder Status in the Event there is Concern Regarding Misrepresentation of Status” by the next meeting. Any comments should be given to Dr. Melius.
LHI Update: National Program: Dave Tornberg
PowerPoint presentation given.
MC: The Acuity levels are an interesting idea. How was that established?
DT: it was clear at outset or program that many of them had a wide range of issues. We felt we had to have case mgmt process. It was also clear the acuity levels varied. And we could devote all staff time to the most challenging cases. And there are callbacks, more often for higher acuity levels. The needs go beyond the scope of the program. These people have a willing ear and they talk to us.
BL: we need to be able to identify those needs and maybe create a CPT code, for your phone time, for example.
DT: 3,600 being followed by LHI. 1,425 in treatment. 473 with MH diagnosis;
MSdH: what’s the direction of the benefits part of the program?
DT: the broad knowledge base is here, in the consortium. I’m reluctant to hire a social worker who isn’t familiar with the population and the state, federal systems. We would like to look for someone in the NY area who is familiar with the program. If you have someone like that, please refer to me.
JM: how many of your recently enrolled pts are retirees?
DT: a small percentage. Larger percentage is responders who were responders, perhaps they ere in AOEC group.
JM: How many referred from FealGood?
DT: periodically. Not huge number.
JM: with the legislative activity, I’m just wondering if that has led more people enroll with LHI.
MSdH: Is there any outreach by the LHI?
DT: we initially received list of 4600. For new people, there is no advertising campaign.
The next meeting is on January 5th at Mount Sinai.