WTC Medical Monitoring and Treatment Program
Full Steering Committee Meeting
FDNY
Chair: Jim Melius, DrPH, MD, Laborers (JM)
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)
Ben Luft, MD LIOEHC (BL)
Matthew Cassidy, MSSM CC (MCy)
Dori Reissman, MD, MPH NIOSH (DR)
Scottie Hill, DCC (SC)
Carol Perret, UMDNJ (CP)
Melodie Guerrera, LIOEHC (MGue)
Micki Siegel de Hernandez, CWA (MSdH)
Lin Luo, Bellevue/NYU (LLu)
Lauri Boni, CBNS (LB)
Chris McGrath (PBA) CMC
Frank Tramontano (PBA) FT
Garry Resnick, MSSM CC (GR)
Lee Clarke, DC-37 (LC)
Dave N. Tornberg, MD, LHI (DT)
Terry Miles, Environmental Health Center (TM)
Phil Mouren, FDNY (PM)
Tamara Smith, Environmental Health Center (TS)
Julia Nicolaou, MSSM CC (JN)
Jean Weiner, MSSM DCC (JW)
Lara Glass, FDNY (LG)
Larry Rhodes, NIOSH (LR)
Lindsay Warren, MSSM CC (LW)
Notetakers: Donyetta Conrod, Annie Lok, Dana Schinestuhl
Report on recently deceased WTC Responders
Queens: We would like to report two recent deaths, one from colon cancer and one from lung cancer.
MSSM: To date we would like to report 313 deaths. In September, there were 6.
UMDNJ: To date, we would like to report 7 deaths.
CC/DCC Reports:
Long Island: Melodie Guerrera
Wait-time: We are still able to have monitoring patients scheduled within a week and treatment patients 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: In August, we performed 306 monitoring exams of which 45 were V1, 48 V2, 117 V3, 55 V4 and 41 V5. For treatment we have 2,248 patients in total over the last 12 months and 851 in our mental health program for the same time period. We have 2,434 unique patients currently in either group. A comparison to last year’s activity indicates our monitoring activity has increased 27%--for July and August last year the combined total was 408, while this year it is 557.
Retention: Our retention numbers should meet or exceed 77% of all monitoring visits.
New Developments: In September we had a good amount of media activity. We were very pleased with the Newsday coverage of our 911 Oral History Project. Our new website, dedicated to this project is up and running (911respondersremember.org). Stony Brook was very pleased with the Page 6 coverage. The media department has already inquired about any plans we may have for next year’s anniversary and have expressed a desire to be supportive. We continue to explore ways in which we can work cooperatively with other departments with Stony Brook. Additionally, the research department included an article about our program in their e-newsletter.
Challenges: We would like to thank Phil and Lara for assisting us in identifying a new pharmacy group as the firm we currently use is going out of business in mid November. It will be a lot of work but we expect to have the transition done in time so patients should not be inconvenienced. We continue to work with one less physician.
Announcements: We are actively working on establishing a satellite location in Flatbush, Brooklyn at Downstate University Hospital, SUNY Downstate. We wanted to address a few possible concerns.
1. There are absolutely no plans for this site to see any Firefighters, active or otherwise. Obviously FDNY resides in Brooklyn, there is no need for another site to see their patients and we have absolutely no intent to do so. Any firefighter, active or otherwise, now or in the future, that contacts us will be directed to the FDNY site.
2. We are not seeking to attract any patients active in any other clinical center. We are interested in reaching patients who reside in Brooklyn and have either never been in the program before or have been lost to the program due to an unwillingness to travel out of Brooklyn for care. We have spent many hours working with Downstate Hospital and they have brought concerns to our attention. Specifically, that there are many responders from the Brooklyn community who are having difficulty seeking services outside their community. The impression at Downstate is that there is a significant number of Latinos, Afro-Caribbeans and African Americans, as well as other blue collar workers (both city and non-city) who participated in the rescue and clean up and who have significant disease as a result and are being undeserved. Our effort is to establish a clinic in the heart of Brooklyn, at Downstate, that will serve this deserving population. The location is Central – a map is provided to more clearly demonstrate this. We have always supported local access to healthcare. This is just an extension of that strong belief.
3. We fully expect to be held to the same NIOSH rules with regard to establishing a satellite operation. In other words, all services must be provided and they must be provided in a cost effective manner or to quote Dave Prezant – budget neutral within 12 -18 months. We firmly believe that establishing this site in Brooklyn is good for the people of Brooklyn and very good for this Program.
Queens: Lauri Boni
Wait-time: We have a 1 week wait-time.
Examinations: For the first time, we reached our capacity of 120 monitoring exams in August of which 26 were V1 and 94 periodic. We scheduled 181 appointments with 34 no-shows and 34 cancellations. We performed 87 monitoring exams in September of which 25 were V1 and 62 periodic. Treatment numbers are not yet available. We referred 18 patients into physical health and 4 into mental health treatment. There were 20 initial and 29 follow-up physical health exams; 3 initial and 166 follow-up mental health exams; and 11 initial and 7 follow-up social work/benefit visits.
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.
New Developments: Our newly contracted pharmacy provider went out of business before we began using them. We are now in the process of identifying an alternative provider who can offer equivalent services. So far we have been talking with Progressive Medical, Inc. and have just received a service agreement for review.
Challenges: Obtaining a lease for an additional 1,000 square feet of space has been delayed until the end of October and is pending the evacuation of the current tenant. This tenant has delayed leaving the space for more than 2 months. We have 2 staff members on medical leave, one of our nurses and our benefits coordinator. We are still in need of a Director of Social Work.
Bellevue: Lin Luo
Wait-time: There is a 2 week wait-time for a monitoring exam; 1 week for a treatment exam.
Examinations: We performed 56 exams in September.
Challenges: Space continues to be an issue.
UMDNJ: Iris Udasin
Wait-time: We have a 2 week wait-time for monitoring.
Examinations: We performed 70 monitoring exams in September; many of those exams were V1.
New Developments: Our manuscript on Sleep Apnea is ready to go to the PPC.
DCC: Matthew Cassidy
Health Outcomes/Data Management: The data management team has completed the development of the new Trial DB baseline and periodic exams and conducted training on all new electronic forms; this was developed on September 27th. The team has also developed a prototype version of the NIOSH Health Care Provider Form (previously called Web App) in Trail DB. A demo of the electronic version was provided to the PIs at the last PI meeting. Work will continue on refining the electronic version. The health outcomes team is working to extract/update data for the frozen 9/11/10 data sets. The will be working with data management to troubleshoot the Trial DB V1 interfaces for the EAQ and IAMQ. There are also plans to map the Trial DB EAQ and Trial DB IAMQ for V1 to the Logician data equivalents.
Clinical Core: The clinical core has been working with the data management team on V1 and new periodic IAMQ that are now available in Trail DB. Usha and the data management team are working together to provide training to the clinical centers on these forms along with additional training to staff on the EAQ. The clinical core has also worked with the data management team on the design of the new Web App forms in Trail DB. The PIs and administrators have met to discuss a variety of topics. Most recently we have been discussing the implementation and design of the health care provider form or “new” Web App forms in Trail DB.
Outreach: Plans are in the works for the Responders Health and Education Conference Project. The conference is planned for April 2011 and the purpose of it is to educate responders about WTC related health findings and benefit changes and permit the opportunity for WTC responders to raise questions directly to program clinicians, leaders etc. Newsletters are going out as scheduled.
Scientific Work: We continue to meet with Dr. Prezant to follow-up on the cancer expert meeting. The main topics of discussion are how to approach external and internal analysis, common exposure methods and work to develop common approaches for cancer definitions etc. Dr. Paolo Boeffetta and Dr. Samara Solan have been participating in these meeting as well. We plan on meeting again next month.
Manuscripts: Dr. Udasin’s manuscript on respiratory symptoms and PFTs has been accepted to JOEM. Minor revisions have been made on the Sarcoidosis manuscript and we are hoping on news of acceptance. The exposure manuscript has been recently submitted to PPC and there has been some feedback from Dr. Melius on revisions needed before submission.
Meetings: Recently a small group (Dr. Reissman, Dr. Prezant, Dr. Sharma and others) convened to discuss clinical issues related to the mental health exam, ICD9 codes, etc. We are also working with Dr. Prezant to refine the list of experts needed for the GI meeting. Dr. Crane, Dr. Markowitz and Dr. Prezant met to discuss a Scientific Update conference so that we can work on bringing WTC clinicians, scientists and labor representatives together so we can provide up-to-date scientific information from WTC studies published by the FDNY and WTC consortium authors over the past few years. On Friday, September 24th, Dr. Marmar (Dean of Psychiatry-Bellevue Hospital) presented to the WTC MMTP on PTSD. David Richardson from UNC will be talking about the history of the atomic bomb study on October 22nd.
MSSM: Michael Crane
Examinations: In September we performed 608 monitoring exams of which 138 were V1. There were 800 physical health and 603 mental health exams. The number of visits to the treatment program (including mental health, physical health, and social work) has exceeded 100,000.
New Developments: We have sent out letters to patients that may have been affected by the stolen hard drive incident. We have set up a hotline number for people to call if they have any questions and we are receiving about 20-30 calls per day.
Discussion:
SM: I feel that we need to have these communications in writing, these are official matters. We need to know what happened and in a timely matter. We have our own obligations at our own institutions.
MGue: I agree it did put us in an awkward position with our institutions as well.
BL: On our consent letter, we have the phone number of the IRB and sometime patients will call that number. Sometimes they know of these things before we do. It puts us in an awkward position.
RF: It seems that the minimum thing that can be done is share the name of the patients. Under this program you are a covered entity. Going down the road that institutions would share an IRB, they would involve a lot of coming together.
MC: We will go back to our legal department to see if we can draft a simple statement, but the issue would be that we could only put so much information in it and requests would come in for more. We need to figure this out with our lawyers.
ACTION ITEM: Matt Cassidy (Sinai CC) will go back to their IRB and see if they can draft some sort of a simple statement regarding the recent stolen hard drive incident that can be circulated to the other CC’s IRBs.
FDNY: Dave Prezant
CC Report: Monitoring Exams (August)
1st Visit: 6
2nd Visit: 31
3rd Visit: 63
4th Visit: 125
5th Visit: 152
6th Visit: 172
7th Visit: 178
8th Visit: 92
9th Visit: 40
10th Visit: 8
Total 867
Treatment Exams (August)
New Patients: 171
Unique Patients: 788
Current in Physical Health: 4,400
Mental Health (August)
New Patients: 87
Unique Patients: 519
Current in Mental Health: 1,854
DCC Report: The GI expert panel meeting has been confirmed; we are just trying to pinpoint speakers at this time. Once we have speakers confirmed, we will then need to find a time that fits everyone’s schedule. We hope to have something settled for December. We are still waiting for comments to come back on some of our manuscripts, including the paper on PTSD trends. We mentioned at the last meeting that we will start sending out blood lab results to patients; this has deployed successfully. This is going to allow us to have everything electronic and also allow us to check mailing addresses, because we are getting returned mail. We are also computer programming to match ICD-9 codes. We have started a new effort to update our physical exam. We also sent out 400 letters to patients that scored high enough to get in the sleep studies. We have received calls from people that would like to participate. We need 100 participants and we plan on sending out reminder letters to people that have not yet responded.
NIOSH: Roy Fleming
We have a new administrator by the name of Larry Rhodes that would act as a liaison between the WTC programs and NIOSH. The National Program contract has been awarded to LHI; there will be a meeting to talk about new issues in the consortium and the community programs. This meeting will be on October 26th and 27th in Wisconsin. If there are any clinical centers that would like to be included, please let me know in a week or so. The funding for the Health Registry has been extended. We are in the 2nd stage of enhanced reporting, which is cost reporting. The new reporting will most likely be implemented for the January-March QR due on May 15th.
Survivor Program: Terry Miles
We currently have 4,927 patients. We have had a major increase in our call volume directly related to our subway campaign. We have around 120 new patients scheduled to be seen over the next few weeks. We have been fortunate to have a low no-show rate. Currently the rate is 10% at Govenur and 30% at Elmhurst and Bellevue. We are pleased with the amount of R.S.V.P that we have received for our conference.
Cancer Update: Dave Prezant
We’ve been meeting regularly with consortium partners. The meetings are now split up into two meetings; a core group goes to both. (1.Common exposure definitions. 2. Cancer meetings, with same core group of epidemiologists, cancer experts and patient representatives). Since we’ll be publishing independently, or at least reporting separately, it would be confusing without a core definition. Regarding benign brain tumors, it is hard to get a true rate of them in this country. Some of us would have to expand surveillance to include them. We have had a series of conversations about “laterality.” For example, one patient who has breast cancer in one breast, then later cancer in the other one, this applies to all organ pairs. Do we count it once or twice? There have been definitions in the cancer registry world, so we’re trying to conform to one. We will count that as two tumors. This becomes more complicated with colon cancer, which has complicated rules with multiple sections. We will continue to evaluate this. Of course there is cell type and there are many different kinds in the lung, and they all would be documented but all counted as lung cancer.
Exposure: A core group is needed to define common exposure definitions for all four cohorts. Initial arrival time and time spent in dust cloud we’ve found are predictors of respiratory and mental health issues. We would think the same would apply to cancer. But each group has defined exposure terms differently. Some things, like respiratory protection, won’t be a core exposure term because the data isn’t good enough across the programs. But individual programs can look at their own data.
Discussion:
BL: Matt mentioned an exposure paper. If your group comes up with a definition, and the exposure paper has another one then what would happen?
MSdH: The Sinai one looks at specific topics in their data. The cancer group is just looking at what everybody asks, and what questions were common enough to each of the groups. And because of gaps, it’s going to boil down to very few questions.
JM: The Sinai paper is essentially a descriptive paper of who did what in that cohort. My concern is that it isn’t specific enough about the tasks that people performed. Should reach out to unions, clinics.
DP: I talked about the process; I didn’t talk about the outcome. So, where is there a delay in getting this data out? I feel these definitions will be good enough for cohorts to use within a month or two. Everyone is waiting for latest tumor registry data dump. FDNY, consortium, registry, have all requested that. People have been told that data will be available in December, maybe January. We at the FDNY can integrate that data quickly. This dump will bring us 2008 data. Comparison to US data, the FDNY pre-9/11 data will be presented here before outside group. FDNY data will be presented to each fire union separately, and then presented here soon after.
Training/Conference Planning Update Scottie Hill
The consortium-wide brochure is finally at the printer. It was delayed a bit because of issues with translations. Thank you for allowing us to photograph your staff and patients at your clinic.
I’ve started work on federal Workers’ Compensation training as requested. My group is basically starting from scratch on this subject. I’ll keep you posted on progress.
Annie Lok circulated a survey about the program conference to the members of this group; we have had no significant feedback on that yet. The Mount Sinai Advisory Board suggested we bring in a group such as Tuesday’s Children to provide a “fun” workshop in addition to the workshops we plan. As we use our email listserv more, a lot of organizations have approached me recently asking us to use the listserv to advertise their events. I’ve said no, since we’ve not used it for program events, just to get out information. I don’t want the program to be seen as endorsing an outside organization, at the same time, resources for responders are dwindling, so it’s helpful to educate them. And for example, what Tuesday’s Children does is interesting and beneficial to our patients but not something we would not do.
Discussion:
JM: It’s been talked about before, but it could be problematic.
MGue: When we did the picnic, we were approached by providers of holistic medicine and others.
JM: If it’s a program that offers services that you see as good quality, I’d rather see it as part of the newsletter—such as what outside resources are available.
MSdH: It depends on the group and the event. And it should be talked about here.
JM: Don’t do a separate communication to everyone; it should be part of the newsletter. And also I don’t think you should be using the newsletter politically.
MSdH: For the conference agenda, are you going to wait until you get the surveys back?
SH: In the survey, we don’t list cancer as a topic, but we have a fill-in field and we think people would write it in there. I do think it’s a good idea for us to know what we would say to patients about cancer.
TS: I just want to say that we are working with Tuesday’s Children on this event.
JM: Once you start notifying people about specific events, then you have to a policy about which ones you would publicize.
TS: Announcement—November 8th, we are having a parenting workshop at Bellevue, morning and afternoon session. I will circulate a flyer.
Policy Update: Carol Perret
In your packets there’s a rough draft on Rights and Responsibilities. Suggestions are welcomed.
(A handout is distributed to the group)
Discussion:
MSdH: What precipitated this?
CP: We felt a need to spell out what our treatment program is about and responsibilities of the responders.
JM: It’s intended for the entire program?
CP: Yes.
RF: Multiple responders have challenged what the program offers them, or should offer them. Something like this would communicate to them what the program is about, what to expect and what to be expected of.
JM: Would some of this be institution-specific?
SH: When we did the benefits assistance survey, one of the questions was how in your clinical center your patients are told what the program is, what to expect. And we got as many responses as respondents—no consistency. It’s a very big issue.
MSdH: Patients need to know what the program provides in language that is clear and makes sense. This document does not take the place of improvements that would help on those issues.
BL: What are the ramifications for not fulfilling these expectations, on either the program or the patient’s part? How would that be dealt with?
SM: Regarding Responsibility #3, I would omit the part about making decisions responsibly and healthy lifestyle choices.
CP: The intention behind it is that the patient would communicate with the provider obstacles in achieving healthy life choices.
SM: It doesn’t say that here.
DP: I think this document is a good idea. There are some areas of confusion that could cause some problems down the line. Right #2, I would separate the second sentence—we cover only WTC-related conditions that are federally approved. That is a huge area of confusion. Cancer is under many disability pension plans, and even if the person or his/her doctor thinks it’s WTC-related, we cannot cover it. Responsibility #1 should say that eligibility is determined by WTC exposure.
Responsibility #6: I would say it needs to go further, and say that you must go to the monitoring exam in order to receive treatment.
MSdH: This document doesn’t have a good feeling to me, if it’s read by a patient. It doesn’t tell the patient how participating benefits them. In Responsibility #5—I don’t think it’s the patient’s responsibility to report fraud. Maybe it’s their responsibility not to be fraudulent, but it’s not their responsibility to report it.
DR: At NIOSH we’re trying to update the FAQs, and we can share them with you, Carol.
MSdH: I think a FAQ-type document would be more helpful.
JM: Send comments to Carol. Next meeting with revisit this and the MP issue also.
ACTION ITEM: SC members will forward any comments or concerns regarding the responder’s rights and responsibilities document to Carol Perret.
Legislative Update: Jim Melius
The House passed Zadroga bill last week. Thank you everyone for your input and help. The next step is the Senate. There are concerns that will come up there. You may be hearing from the Republican side. We’re not sure when. It will probably be during the lame duck session.
Discussion:
FT: I’ve heard about how the pay-for may change. But I haven’t heard about changing the body of the bill. Have you heard anything?
JM: My understanding is the House bill will be voted on during lame duck session with a different pay-for. The rules indicate they can bypass committee process with a bill referred from the House. The Senate version is significantly different. I will let people know if there will be significant changes other than the pay-for; whether there’ll be amendments will depend on process. There might be limits on amendments. I will circulate to the SC the latest version. It is also available online. There may be threat of filibuster. And also a committee member can object, since this won’t go through a committee. This will need 60 votes to be considered.
BL: Senator Gillibrand had a date that she said was promised by Reid.
JM: Reid announced that two weeks ago. I will email out Senate Rule 14. Right now there is no certain date for this.
MG: Is there any information on what the backup plan is if this legislation doesn’t pass?
JM: I believe the program will still receive this year’s funding level in the next budget.
RF: The same options will exist as did last year.
Proposed Stony Brook Satellite Clinic Ben Luft
About a year ago, the chair of medicine at downstate approached me about Brooklyn patients. He expressed concerned about responders in his community that were being underserved. I visited the area and understood more about the population and health care disparities. He knew about this program, and pointed to the lack of a clinic site in Brooklyn. At the same time, Stony Brook got directive from the chancellor to collaborate more with other institutions in the SUNY system. We looked into working together, and informed our Long Island staff, and there was a lot of enthusiasm. We have many staff that were from Brooklyn, and would be interested in going down to pilot the site. We had a certain capacity to do this. We then approached NIOSH and asked them how this could be done. NIOSH said there was a precedent, but would need to be rigorous and deliver a high quality of service in a financially responsible way. Downstate came up with a beautiful facility with great parking in Flatbush. We’re interested in seeing patients who are not currently being seen by the program. We have doctors, nurses and social workers who are willing to go down and pilot and train. It’ll be a modest pilot. There are modest milestones we want to reach, and if we don’t reach them, we’ll stop doing it.
Discussion:
JM: So you’re staffing it, not Downstate?
BL: There are refurbished offices that we would use for the pilot. It has a receptionist and an administrative staff. Initially we’ll send one of our doctors and one of our nurses to do the initial training. Hopefully they’ll have someone there we can train. Hope to be able to use the hospital’s facilities for treatment.
SM: What is the evidence that there are underserved responders in Brooklyn, or that there are Brooklyn patients in the program that is not being served by other clinical centers?
BL: It is all anecdotal. Also there are many responders who have to travel for a long time and distance for services.
SM: If you plan a new project, you need data to support it.
BL: What is your concern about setting up a clinic close to where people live?
SM: I have no concern about this.
MC: I have 2,000 or so patients who live in Brooklyn. My concern is… let’s say there’s a 30% drop-off rate. So there are 600 not coming in, so we’ll call them, and now you will call them. … also, I haven’t heard any complaints from any Brooklyn patients. If there’s a need, let’s assess it. What has been done is you’ve started something without assessing the need. Another concern is Downstate does not have occupational medicine program.
IU: I graduated from Downstate, and I remember a need for French speakers.
MGue: First, this is a pilot. It will determine whether there is a need or not, and if we can do it consistent to the programs standards and cost effectively. Also, we are doing what has been done. When the Staten Island clinic started, there were fears by the New Jersey clinical center.
I asked during an administrative call for a list of the Brooklyn patients who have not come back to our program in two years. It’s done by geography, not by clinical center.
DP: This problem I think is due to the rules not being clear. Once that Staten Island clinic opened, it gave everyone the idea to find areas of unmet need. I think that NIOSH or the SC should provide some rules for order. FDNY satellites were begun on the stipulation that they are budget neutral. I would like NIOSH to maintain that rule for everyone. If you define your targeted population as Brooklyn patients who are in the program but haven’t come back in two years, they should receive a letter offering them services at other sites as well.
MGue: I agree. We were expecting patients from Canarsie, Bed-Stuy. And I have a question to union representatives, have you heard from members who live in Brooklyn?
JM: We all have members in Brooklyn. But we haven’t heard from them. We discussed at the SC meeting whether to expand care to Brooklyn a few years ago, and no one saw the need. For the EHC, Elmhurst has not expanded as much as we thought. This program is a closed program. It’s the way it’s sold to Congress. There are criteria to adding clinics in the legislation. We are in a transition. Cost-neutrality is not an issue if the legislation passes. It’s hard to say what rules will apply next year.
MC: I would just suggest that more due diligence be paid to this pilot and be reported back to SC. For the Staten Island pilot, there was an official request by a Congressman and PBA leadership. More due diligence at this point would be key.
MGue: We are talking about caring for responders, who meet the eligibility requirements.
JM: I am talking about a closed group of providers.
MGue: As late as last month, Dave was talking going to Miami. Right now, in this program, there is a patient in Hawaii who receives monitoring and treatment visits close to his home, and the patient in Flatbush doesn’t. That is just wrong.
BL: Why is there no equal protection for people in Flatbush?
MGue: We were approached by Downstate, we followed the rules that everyone else has followed in setting up a satellite.
JM: Can you provide a copy of the proposal?
MGue: So we’re being held to a different standard? What is going to be done with that information?
JM: So I can decide if there is a need.
JW: For the record, the DCC does provide data that is requested for operational purposes. All you need to do is fill out a DRF and we can provide numbers to you.
MGue: I want to make clear that we are talking about responders (those who have fallen away or never been in).
JM: I think it would be good to provide a summary of your proposal to the SC.
Announcements: The next meeting is on November 3rd at DC-37.
Adjourn.