WTC Medical Monitoring and Treatment Program
Full Steering Committee Meeting
DC-37
Wednesday, September 1, 2010
Chair: Micki Siegel de Hernandez, CWA (MSdH)
Attendees:
Iris Udasin, MD UMDNJ (IU)
Dave Prezant, MD, FDNY (DP)
Roy Fleming, NIOSH (RF)
Steve Markowitz, MD CBNS (SM)
Michael Crane, MD MSSM (MC)
Matthew Cassidy, MSSM CC (MCy)
Dori Reissman, MD, MPH NIOSH (DR)
Scottie Hill, DCC (SC)
Carol Perret, UMDNJ (CP)
Melodie Guerrera, LIOEHC (MGue)
Denise Harrison, MD Bellevue/NYU (DH)
Phil Mouren, FDNY (PM)
Tamara Smith, Environmental Health Center (TS)
Julia Nicolaou, MSSM CC (JN)
Jean Weiner, MSSM DCC (JW)
Lauri Boni, CBNS (LB)
Bill Romaka, UFA (BR)
Susan Tindall, DC-37
Lara Glass, FDNY (LG)
Vincent Variale, UEMSO (VV)
Juan Wisnivesky, MD MSSM DCC (JWis)
George Friedman-Jimenez, MD, Bellevue/NYU (GFJ)
Notetakers: Donyetta Conrod, Annie Lok, Dana Schinestuhl
Report on recently deceased WTC Responders: Bill Romaka
We have many others that are sick and in the hospital.
CC/DCC Reports:
Long Island: Melodie Guerrera
Wait-time: We are still able to have monitoring patients scheduled within a week and treatment patients scheduled on the same day. However, we typically fill most of the slots a month in advance for our monitoring visits and try to leave some slots for patients who call and need more immediate appointments.
Examinations: July was a very slow month; we had a holiday, no Saturday appointments, and two power outages at our Islandia location. We performed 251 monitoring exams of which 53 were V1, 52 V2, 65 V3, 64 V4 and 17 V5s. For treatment we have seen 2,195 patients in physical health over the past 12 months. We have seen 825 in our mental health program for that same time period. We have 2,379 unique patients currently in either group. Our August numbers rebounded well and we broke through the 300 number for monitoring visits in this month.
Retention: Our retention numbers should meet or exceed 75% for all monitoring visits. Despite July being a slow month-we still saw a significantly larger amount of patients over last July-251 as compared to 214 last year.
Challenges: We are still in need of a new physician.
Announcements: Our picnic went really well—approximately 750 attended. We want to thank Micki and her husband for helping out. 22 of our staff volunteered their time. Everyone had a great time and we did get some press. We are ready to begin work on next year’s event. Additionally, we have met with Newsday and expect that they will be doing a sizable article on our Oral History Project right around the 9/11 anniversary.
Bellevue: Denise Harrison
Wait-time: There is a two week wait-time for a monitoring exam in our clinic. For a treatment physical health exam there is a one week wait-time and for mental health there is around a two week wait-time.
Examinations: In August we performed 55 monitoring exams. We saw fewer patients than usual because of staff vacations. We had 49 physical health appointments and 77 mental health.
Challenges: As usual space continues to be an issue for our clinic.
MSSM: Michael Crane
Wait-time: We switched our V1 monitoring exam slot to every other week, so we have had a bump in our wait-time.
Examinations: We performed 571 monitoring exams of which 104 were V1. We saw 776 physical health exams in August, 180 of those were new patients. There were also 62 new social work evaluations.
New Developments: We are installing a new electronic medical system (EPIC). We should be up and running with that sometime in mid October.
Queens: Lauri Boni
Wait-time: We have a 1 week wait-time for all exams.
Examinations: In July we performed 89 monitoring exams of which 16 were V1 and 73 were periodic. We referred 10 patients into physical health and 5 into mental health. We saw 12 initial and 39 follow-up physical health exams; 11 initial and 104 follow-up mental health exams and 8 initial and 4 follow-up social work/benefit visits. There were 20 no-shows and 35 cancellations.
Capacity: We still have the capacity to monitor 120 patients per month in our clinic, in addition to meeting our current level of treatment activity.
Challenges: Space remains a challenge. We are about to begin transitioning pharmacy providers, so we anticipate a little bit of a challenge with that. We are still on a search for a Director of Social Work.
New Developments: We have a new nurse on staff, she will start this month. We are in the process of leasing an additional 1,000 square feet of clinic space adjacent to our existing clinic.
FDNY: Dave Prezant
CC Report: Monitoring Exams (July)
V2 Baseline: 8
V2 follow-up: 17
V3: 94
V4: 278
V5: 391
V6: 90
Total: 878
Treatment Exams (July)
New Patients: 176
Unique Patients: 768
Current in Physical Health: 4,338
Mental Health (July)
New Patients: 79
Unique Patients: 493
Current in Mental Health: 1,808
DCC Report: The process of starting a sleep apnea study will begin the week after 9/11. We are hoping to do between 200-400 studies. People in our cohort will be getting a letter informing them that they have scored in for the sleep apnea study from the results of the MMP questionnaire. Nearly all of the referrals for this study come from our treatment program which we hope will change. The trend paper regarding PTSD is being evaluated. We have been busy with the sleep apnea study with GERD and sinusitis as well. Our disability paper is going to be sent out by the end of September; we are looking for one more internal review. We are also doing a side study on pulmonary function of people that were never at the WTC site. We have solved all of the computer issues with integrating blood results into our electronic medical records. Abnormal results are automatically entered into a letter and mailed to the patient. We are working on integrating scanning and x-ray reports soon. When we upgrade our system to the newer version (sometime this year), we will have the ability to create graphs. Our cohort will get a graph overtime with the different blood results (even those that are not WTC-related). In November both retired and active members will have their PSA results in their electronic medical record.
DCC: Juan Wisnevesky
Clinical Core: They are in the process of finalizing the ICD9 code list. Working with linkage of NY cancer registry. The 8 cases of Multiple Myeloma have all been confirmed by physicians.
Data Management Core: The EAQ questionnaire is up and running in Trial DB. Data cleaning (with health outcomes) continues. There is work being done to capture all the LHI cohort, we are working with Roy on that.
Scientific Projects: The sarcoid paper has been accepted by AJIM. The exposure assessment paper is going to PPC for a final approval (plan to submit to AJIM). Dr. Moline has submitted a version of her revised EHP paper.
NIOSH Update: Roy Fleming
The national programs grants are on track. There have been a few special cases in the national and consortium programs; eligibility and possibly cases of fraud. We have to pay special attention to the new enrollees. There were 585 new enrollees in the two programs in the last quarter. So the question is: Are we using the same evaluation scheme we’ve always used? Workers’ Compensation requires proof of employment or volunteer activities. We need to pay more attention to fraud. We want to maintain enrollment, but also be cautious about it. The national program does not do any eligibility verification; that will continue to be done by the clinical centers and the FDNY. We will get involved and assist with any cases that seem to be suspicious.
Discussion:
IU: In the national program, is there a strategy for fraud for both new and old patients?
RF: We’re reviewing on case by case basis.
SM: In the consortium, we rely on self reports. Are we considering using different criteria?
RF: That’s the question. At this point of the program, what do we do? How do we protect ourselves against fraud?
DP: When we’ve gone before Congress, especially the Republicans in both the House and Senate, they use the fact that there are many new patients coming in against us. They seem to imply that it’s fraud until proven otherwise. They are wondering how it is possible that nine years later, hundreds of people enroll every month. So to protect ourselves, and allow new patients to come in, how about placing a deadline? A reasonable one, a year or two from now. It’s not a deadline for an exam, but a deadline for enrolling, and to enroll after the deadline would be not allowed or at least allowed under very special circumstances.
MSdH: We have to discuss this further especially if legislation passes. For right now, if there are special cases, they should be brought in to NIOSH. The deadline discussion can happen, but not right now.
MGue: I ask that we not consider taking this to the clinical center level, where we are asked to request proof from patients. It’s harmful to the relationship with the patient. You are being mistrustful from the start. Right now we do the affidavit. It’s uncomfortable but we’ve smoothed it over.
CP: I think fraud can occur at any point in the program, not just on entry. Currently we have two responders that altered our referral forms to get procedures that were not authorized.
IU: And almost all our suspect patients are volunteers. It might be important to look at who the enrollees are, whether they belong to an existing group.
MSdH: Roy, will you have enough information at next meeting for a discussion?
RF: Not yet.
MSdH: Can the policy revision be ready for next week?
JW: I will ask Laura.
DR: We have a resource line; the number is 866-505-5134.
RF: Please don’t give out this number to a responder right away. Talk to me or Kecia Leatherwood before referring responder.
MSdH: Who does this number get you to?
RF: This is a WTC resource line for responders who are unhappy with the process. It just supports the process, the system of the program. No medical advice. It would get to me or Kecia Leatherwood. We also need to discuss the corollary issue—responders who live in NYC area and want care in the area from the national program. There are more and more of these folks that don’t stay away from NYC permanently; they go back and forth. It’s difficult because of policy of not allowing people to change clinics more than once a year. Why are they transferring?
MGue: Will there be an update on the possible program audited?
RF: Not yet. I will let you know as soon as I know. Inquiry from two places, but no clear timeline yet. We are better to be prepared.
Survivor Program Update: Tamara Smith
Terry couldn’t come today because Fox News is at the clinic. I’m sorry but I don’t have any numbers. But our subway campaign is back up, and will hopefully run through the beginning of October if not longer. We’ve done focus groups and there are people who still don’t know about our program. We have an event on the 15th of September at the CUNY graduate center (5-8:30pm) to reach out to potential patients. This is in partnership with WTC Registry. We printed up postcards and mailed them out.
Discussion:
DP: Who were the postcards mailed to?
TS: Many who are in registry--about 40 thousand people.
DP: We know there are people in the registry who are in the FDNY program, and the responder program. This can be confusing to them.
TS: These were not mailed to responders. But since we have a pediatric program who serves children of responders, the consortium program will have a table at the event.
MSdH: These cards were also available in bulk at community advisory committee, where there were union members and others.
Cancer Update: David Prezant
We are finalizing the GI expert meeting—purely to address treatment questions, not for research or surveillance. We are considering what to do if Barretts keeps coming up, what treatments should be considered. This will be similar to the OSA meeting; we are hoping to have it in afternoon after a SC meeting in November or December. We circulated a list of topics based on the questions we received. Those are supposed to be finalized this afternoon as a draft then circulated to everyone for final comments. Everyone is invited, but it will be based on physicians’ questions. On cancer, we’ve been having meetings every other week based on the expert comments (cancer and exposure definition). Union representatives, EHC representatives have been participating. The city health department was invited, but they will likely attend just one. We are required to use previously asked questions. Right now we’ve been concentrating on responders, going through questionnaires to find what has been common across cohorts. Nothing is exactly common, but perhaps we could come up with a liberal commonality. Now each group will be submitting the questions and answers and logic patterns for programming in the next coming month. We will check to see if there are any commonalities. Everyone seems to have enough information on commonality of exposure to dust cloud. We hope to get you something final in next month or month and a half. We are hoping that what we learn from responder questions and answers, we can apply the philosophies to the community groups. A colleague came up with a good idea: After coming up with revisions of cancer definitions based on NYS cancer registry, etc., he said we should have tumor review boards, with representatives from all groups, to review all tumor cases in question. Not about whether one has cancer, but how cancer is classified. The board would review classification; whether it was correct for the year it was diagnosed. That idea was universally thought of as good.
Discussion:
SM: Juan, I would like to be on the cancer working group. And Dr. Prezant, can you please circulate the scheme being developed by cancer group.
DP: Yes, I can circulate to all the PIs. I am waiting for a review by one person. Some time next week it should be available.
MSdH: I want to add to what Dr. Prezant said about exposure questions. It’s been a process of looking at what everybody asked, and it may come down to just five commonly asked questions. And this approach can be used for analyses of other diseases. The other questions shouldn’t be thrown out of course. The EHC and consortium have both asked about indoor exposures, but not FDNY. But that doesn’t’ mean we shouldn’t’ analyze that.
ACTION ITEM: Dr. Prezant will circulate the scheme being developed by the cancer working group to the clinical center PIs.
Training/Conference Planning Update: Scottie Hill
We are in the early stages of planning a conference for April or May 2011. It’s been five year since the last one. It will take place on a Saturday, probably from 10am to 4pm. DC-37 has offered us space. It will be similar to the previous conferences we have had in the past. We want to present health findings, benefits updates, etc. Annie and I have finalized a survey that she’ll send out through Survey Monkey to our email listserv to find out what might keep people from attending, and what topics they’re interested in. We would also like to have feedback from you on what you think should be covered.
Discussion:
DR: How would this work together with mayor’s health report?
SH: I don’t know, I am not familiar with that report.
SM: One good topic would be current scientific updates, a broad overview.
SH: I expect cancer would be requested. And I think we need to start talking now about how to respond to questions on that subject.
MGue: We do need to give a lot of thought, even before we survey patients, on whether or not we are prepared to meet the needs of patients. They’re expecting answers to their questions. I’m not sure if we’re in position to answer.
SH: I will circulate the survey. Right now there isn’t one topic listed that we haven’t already covered--cancer is not listed. There is an “Other” option, and that’s where I expect the harder topics to be listed.
DR: Another area is cardiac findings, which we might not be prepared for.
TS: Another one is the status of the program.
MSdH: I think as a program, we have to stop thinking from an academic point of view about when we’re ready to release data. There has to be a discussion about why it takes so long. This would be an great opportunity to educate people on the process.
GFJ: If you’re going to release numbers on cancers, it’d be helpful to release numbers of expected cancers for age groups in a time period. This would put our numbers in context.
MSdH: I’m not suggesting we release number of cases. But this is an opportunity to talk about context, how you look at and interpret the numbers. People don’t know about the epidemiology of this.
SH: We need to be transparent about the efforts of the program to understand the numbers. But we might not even need to release numbers or talk about studies. And it’s not just cancer. What about other illnesses, and what is the process for determining what is attributable to WTC.
DP: I’d like to ask NIOSH to sponsor something for us about risk communication, so we are prepared to address the public. I found that when I talk to people about this, I can do a better job, but I’m not sure how to. I think we would all benefit from this, perhaps just an hour or two during a SC meeting day.
DR: We can look into that.
ACTION ITEM: Scottie Hill will circulate the patient survey about the upcoming conference to the SC group.
Legislative Update: Micki Siegel de Hernandez
The WTC-12 forms are due Monday, September 13th. Regarding the 9/11 bill: we’re hopeful that there will be a vote in September. Congress returns the week of September 13th; the vote can happen as early as the following week. President Obama has said he will sign the bill. There are two events sponsored by the national and state AFL to call for the bill’s passage—one will take place on September 8th at 10AM on Broadway between Barclay and Vesey Streets. There is also a lobby day in DC on September 15th at 10:30AM. There is a rally that day on the west lawn of the capitol.
Discussion:
DR: Does the WTC-12 form have anything to do with eligibility for this program?
MSdH: No it’s a placeholder for a future compensation case. It’s similar to an attestation. The questions are broad there. No work history. The board does not review it like a claim. Just work timeframe.
BR: Harry Reid has also come out in support for the Zadroga bill.
PM: There was talk of compromises on controversial parts of the legislation. Do you have information on that?
MSdH: No I don’t. The issue that led Democratic House members to call for the special vote was about undocumented immigrants. But as far as I know the legislation has not changed.
BR: The NY legislation said they might look at how it’s paid for to sway the Republicans.
MSdH: Originally the Democrats suggested closing tax loopholes for foreign companies. Republicans said that’s a job killing bill. The Democrats are looking for other ways to pay for it.
SM: At the consortium meeting last month, we talked about discrepancies across consortium clinics. We will continue that discussion today and we will report to SC next month. I was also wondering about continuing education within the program based on studies published by the program, geared toward physicians. This will bring us up-to-date on what is known. Perhaps we can do a video conference. I wonder if other people think it’d be useful?
MGue: I would suggest that it’s taped so all the physicians can view it.
MSdH: I would expand that beyond physicians, to nurses and others.
Announcements: The next meeting will be on Wednesday October 6th at FDNY.
Adjourn