WTC Medical Monitoring and Treatment Program
Full Steering Committee Meeting
Wednesday, June 2, 2010
Chair: Jim Melius, DrPH, MD, Laborers (JM)
Laura Crowley, MD, MSSM DCC (LCr)
Iris Udasin, MD UMDNJ (IU)
Dave Prezant, MD, FDNY (DP)
Roy Fleming, NIOSH (RF)
Kerry Kelly, MD, FDNY (KeKe)
Jean Weiner, MSSM DCC (JW)
Steve Markowitz, MD CBNS (SM)
Michael Crane, MD MSSM (MC)
Phil Mouren, FDNY (PM)
Matthew Cassidy, MSSM CC (MCy)
Melodie Guerrera, LIOEHC (MGue)
Juan Wisnivesky, MD MSSM DCC (JWis)
Lara Glass, FDNY (LG)
Micki Siegel de Hernandez, CWA (MSdH)
Carol Perret, UMDNJ (CP)
Denise Harrison, Bellevue/NYU (DH)
Tamara Smith, Environmental Health Center (TS)
Dave N. Tornberg, MD, LHI (DT)
Lee Clarke, DC-37 (LC)
Ben Luft, MD LIOEHC (BL)
George Friedman-Jimenez, MD Bellevue/NYU (GFJ)
Bill Romaka, UFA (BR)
Vincent Variale, UEMSO (VV)
Julia Nicolaou, MSSM CC (JN)
Vansh Sharma, MD MSSM CC MH (VS)
Waiwah Chung, RN Environmental Health Center (WC)
Spencer Carroll, FDNY (SC)
Terry Miles, Environmental Health Center (TM)
Mitchell Bass, MSSM CC (MB)
Wajdi Hailoo, MD, CBNS (WH)
Hyun Kim, DCC (HK)
Alison Snow, MSSM (AS)
Notetakers: Donyetta Conrod, Annie Lok, Ashley Hopkins
Welcome; Approval of Minutes:
Minutes approved unanimously
Report of Recently Deceased WTC Responders: Bill Romaka
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 if necessary. 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 April, we performed 280 monitoring exams of which 58 were V1, 49 V2, 82 V3, 65 V4 and 26 V5. In the same month for treatment, we saw 161 initial physical health visits, 96 initial mental health visits, 136 follow-up treatment visits, and 353 follow-up mental health visits. We also provided benefit services to 16 initial visits and 147 follow-ups. The total number of physical health treatment visits that we have seen over the last twelve months is 1,231; the total for mental health is 718, and the total for unique patients is 2,293. Our no-show/cancellations/reschedules are still significant, but many of the reschedules were actually due in part to staff shortages.
Retention: Our overall cumulative retention rate should exceed 72% on all visit categories. Our annual rate is closing in on 70%.
Challenges: We continue to work with one less clinician and one less nurse practitioner. We should have this situation remedied by the end of July.
UMDNJ: Carol Perret
Wait-time: For treatment, there is a one week wait-time; for mental health the wait-time is 1-10 days.
Examinations: In April, we performed 65 monitoring exams and 59 in May. 80% of our monitoring patients are entering into treatment; we have 710 unique patients in treatment.
New Developments: We had four patients come in with Lymphoma diagnosis.
Queens: Lauri Boni
Wait-time: We have a one week wait-time for all visits.
Examinations: In April, we performed 106 monitoring exams of which 19 were V1 and 87 were periodic. We had 23 no-shows and 24 cancellations. 14 patients were referred to physical health treatment; we saw 8 initial and 126 mental health appointments; 18 initial and 12 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: In June we will schedule evening appointments once per month for patients that have difficulty scheduling exams during the work day. We are transitioning to a new pharmacy provider; we will no longer have a contract with CVS and will now use Innoviant Pharmacy. This is the pharmacy provider currently being used at Stony Brook.
Challenges: We have a staffing shortage; currently need to fill 3 positions. We are having difficulty hiring in part to our short funding commitment. We made four offers for a nurse case manager and none were accepted. Also we are unable to negotiate a lease for additional space at this time.
Bellevue: Denise Harrison
Wait-time: We do not have a wait-time at our clinic for a physical heath exam. There is currently a 2 week wait-time for a mental health visit.
Examinations: In May, we performed 58 monitoring exams, of which 22 were V1. In treatment, for the same month, we saw 47 physical health exams and 86 mental health visits.
MSSM: Michael Crane & Mitchell Bass
Examinations: In May, we performed 620 monitoring exams, of which 169 were V1. Also of this 620, 141 of them needed treatment at the time of their monitoring visit. We saw 802 physical health visits of which 204 were unique. There were 30 unique mental health patients.
SM: How many treatment patients are in your system?
MC: About 3800.
MGue: How many are in mental health?
MC: As of April, there were 933; now there are 960.
We are having our second Responder Day event, taking place on June 16th. All of the events will take place in the area surrounding Ground Zero. There will be an opening press event that will kick everything off at 11:00 A.M. We expect Congressman Maloney and Dr. Howard to be present. We reached out to labor leaders and community organizers and they will be speaking at the press event. All of the events will be indoors at places like St. Paul’s Cathedral, the Millennium Hotel and the Police Museum. We will be showing films made by responders that focus on community and recovery/rebuilding. Also this year, we will be reading letters that were archived that were written in the days and months after 9/11. Like last year, there will be live music and art and music workshops. There will also be a closing ceremony that will take place at 6:30 P.M. that evening.
MGue: How many people do you expect are coming?
MB: We have no idea, but the word has been spread pretty widely. We expect a good turnout.
JM: Is the FealGood Foundation involved.
DCC: Laura Crowley
Teams: This month the clinical core is organizing a scientific meeting to discuss proposals for projects; we planned to have an open forum discussion. This meeting will be this Friday. The data management team is working on the phone bank migration; Jon Mercado is developing a SOP for IDX.
Papers: The Sarcoidosis paper was accepted by AJIM with revisions. The asthma paper has been revised and we are discussing a target journal. The exposure assessment paper is going through revisions and we will re-circulate it when we have a new draft. Dr. Udasin’s paper was reviewed and revisions have been suggested; Dr. Luft’s paper was also reviewed and revisions were suggested.
Presentations: On June 25th, Dr. Chen will present on exposure and in September, Dr. Marmur will present on PTSD. The NYPD Disability and Benefits training is taking place on June 16th at Bellevue.
Meetings: The clinical core, along with NIOSH, met with the FDNY to discuss web application revisions.
Outreach: The e-newsletter went out on May 27th; it included information on mental health and seasonal allergies. A print newsletter went out as well.
MGue: The registration numbers were off in January, February and March. Why was that?
MC: It was more than likely because of the litigation.
IU: Can you clarify what you said about the exposure paper?
LCr: You haven’t seen it yet. Hyun Kim and Susan Woskey have been working on it. We are trying to make it more readable.
BL: We will liked to be informed if the exposure criteria changes; it is important that we see this paper and be involved.
HK: We are adding new criteria, not changing the old criteria.
LCr: We want to wait to send it out when it is easier to read so that everyone can understand it, including labor.
FDNY: Dave Prezant
April was a very busy month for us. About half of our retiree’s exams are done at our satellite locations. 81% of retires have had a 3rd exam.
CC Report: Monitoring Exams (April)
V2 Baseline: 22
V2 Follow-up: 16
Treatment Exams: (April)
New patients: 204
Unique patients: 876
Current in physical health: 4,029
Mental Health (April)
New Patients: Delayed
Unique Patients: 500
Current in mental health: 1,594
We will have numbers on our Florida retirees next month. We set up 96 appointments for our Miami Dade pilot program and we had 70 responders show up. The members responded positively. Our goal with this program is to reduce longitudinal drop out, especially for our responders that move out of state, at no additional cost to us. We are looking to expand this program to different states, including the Carolinas and Phoenix.
BR: Did all of the 96 scheduled do phone interviews?
DP: Yes they did, but only 2/3 of them showed up.
MGue: Was everything regarding the exam identical to what we do at our clinics, minus the phone interview?
DP: Yes. We were concerned about web access, but we modified the questionnaire to be done by phone; we also brought our own PFT Spirometer; we used their staff and flew down 2 of our staff members to assure that quality was maintained and to reinforce the culture that this is an FDNY exam.
Papers: Last month we had two papers accepted: the sleep apnea study at the Journal of Sleep and Breathing and the association between Alpha 1-Antititrypsin deficient at CHEST. The disability paper is under final review and I am meeting with the Office of Actuary this Monday to send it off. We have finished the respiratory trends paper with interaction between PTSD and depression; studying our lung transplant patient’s lung tissue—carbon nanotubes—didn’t find them in these lungs, but we found a lot of silicates. We are looking to see if this is different from our control group—checking with matching cases from Columbia-Presbyterian. We have our skin project on schedule to finish during our fiscal year; the fire department is looking to develop a web portal for people to submit their bills online and track where the payment process has gone (for non-WTC bills and WTC bills) the program would pay maintenance costs for this system. We’re hoping that will go online this summer.
IU: How did you come to the decision to do Alpha 1-Antititrypsin tests on firefighters?
DP: It was a convenient sample; completely random. In the future we want to look at the group that declines the least and the group that declines the most and evaluate them for a variety of inflammatory markers and if there’s a difference, use that to tell the truth. That’s a plan for the future.
DT: How is this reflected in the population over the course of their career?
DP: We adjust for their career by matching for years of service and we look at their decline rates prior to 9/11. In terms of exposure, we look at duration of months spent down there and it sorts out on basis of arrival time because that was so predominant for exposure for our people. I want to add that the bioinformatics of this are part of the NIOSH study. Anything we can use for inflammatory markers has to come from outside funding. NIOSH won’t fund this.
LCr: Did you look at phenotype?
DP: We realized we should be genotyping. Our friend in Florida offered to do this for us.
SM: are you intending to pursue future studies with the Alpha 1-Antititrypsin group?
DP: Yes, we will compare those who show the least decline and those who show the greatest decline. We’ll look at inflammatory markers.
SM: Is there discussion about the ethics of learning more about Alpha 1-Antititrypsin and screening workers?
DP: Not yet. We do not do genetic prescreening on firefighters nor do we do HIV prescreening before hiring. The Alpha 1-Antititrypsin data is not part of the FDNY database.
IU: You have picked out a population who is vulnerable.
DP: This population is not vulnerable for firefighting but they’re vulnerable for 9/11.The data was far too primarily with only 11 that tested positive.
National Program Update: Dave Tornberg
312: Completed medical histories
176: Completed lab studies
8: Referred into treatment
1,021: Referred into treatment since the program started
We have 85 patients that are due for an exam, but we have been unable to reach them.
Survivor Program Update: Terry Miles
We currently have 4,719 patients in our program; we are averaging 16 new patients per month. Almost all that call are eligible for our program, if they are not we have a process in place to refer them to other programs. We can see patients in as quickly as one day or three weeks depending on the clinic location. We will have a table at Responder Day so that we can pass out information about our program. We are also planning a large education based event for the people that live in the community for September 15th. September is the month that we have an increase in patient volume, so we will renew our subway campaign at that time.
JM: How are the other sites fairing besides Bellevue?
TM: The Gouverneur site has about 1,100 patients. We are on target; most of our patients are meeting our criteria, possibly because we have spread the word around. Our newer patients are coming in sicker and are requiring more intense services.
MSdH: Are you seeing the affects of the outreach done by the registry?
TM: Yes. We have partnered up with the Department of Health and have come up with a variety of strategies with them, including mass and direct mailing. A personalized letter is more effective; the registry is doing a huge mailing in June.
BL: Do you have basic demographic information?
TM: The average age for a patient is 47; half of our population is Caucasian, the other half is Hispanic/Asian.
JM: How is the pediatric program?
TM: We have just over 50 children in that program. We did a collaborative mailing with the Department of Education and we saw an increase of young adults. We established a relationship with a community based organization that is devoted to pediatrics and are finalizing a contract to do outreach with them.
MGue: Where are all your sites located?
TM: Bellevue, Elmhurst (Queens), and Gouverneur (Lower East Side).
NIOSH Update: Roy Fleming
In the last couple months we’ve seen an issue arise: being able to clarify if a person is eligible for the responder program or the survivor program. We need to know if the grant can cover both; the ability to communicate between programs needs to be there. We will be completing the national program contract—it’s been extended through the end of September. Most of you know the funding for the responder program is now available so we will clarify the awards after some discussion. There are some new concessions for the extensions: reporting elements--specifically costs. The reporting needs to include information on more than just monitoring and treatment but details regarding medications and what we’re spending on different health conditions and how do we arrive at a cost for service types (categories of illnesses). It will affect our ability to arrive at numbers for reporting, so over the next year we will work on reporting those numbers.
Legislative Update: Jim Melius
The Congressional Budget Office approved the extensions going forward, for all programs except for the registry and the NYC mental health reimbursement benefit program. The mental health program will not be continued. The city did put in a proposal for the mental health program to be under the Survivor program, but it was not approved. Yesterday we learned at a meeting with the registry that either late this week or next week the mental health program will send letter to all patients, by next January 7, 2011 letting them know that this program is expiring. I expect the Sinai DCC will start getting calls from people wanting to know if they are eligible for the WTC program. I believe there are 3,000-4,000 signed up for the program, and about 1,500 getting treated. This number includes a fair number of people who would be eligible for this program, who may already be participating.
The mark-up on the WTC bill in Energy and Commerce Committee was last Tuesday. Terry, Lee, Bill and I were all there. It was a long, contentious markup; there was a lot of talk about the deficit. It went from 10AM to 8:30PM., with breaks in the middle for votes and so forth. The committee markup included one major change: the cap on enrollees was increased to 25,000. There were some debates on v-codes, such as marital counseling. In order to help HHS deal with this program, they added more administrators, so NIOSH may be reporting to more people. Possible new limitation we will not be able to enroll anyone on the terrorist watch list.
RF: The City mental health program was only a temporary program: when people enrolled in it, they were told this. The issue is whether they can even provide services through January 7, 2011 because they may run out of money. And the proposal is to fund through that date. It is true that some of these people may qualify for this program.
MGue: In the letter, will they only refer to phone bank, or mention the multiple sites?
MSdH: I think the clinical centers should look at the letter before it goes out because it may not have information on the multiple sites.
JM: I suggest you call Jeff Hon. He is coordinating this, and we’ve expressed this concern to him.
RF: Based on numbers they provided to us, 4,700 people enrolled and fewer than 1,500 people would meet criteria for community program.
JM: I think that might be wrong. The 1,500 number they gave us indicates how many are in treatment. The eligibility criteria may have included city worker status. We don’t know right now, but it may be more than 1,500.
SM: Does that mean there’s a list that we have to match with?
JM: That’s why there are additional administrators. One of them would do that. Defeated amendment includes an administrator who would have to certify every year that the national debt would not be increased by the program.
SM: The HIPAA informed consent requires we disclose to whom we share their information. Do we have to add that their names would be given to whoever matches them with the terrorist watch list?
JM: Not sure what the law is on that.
LC: We’re not there yet?
CP: What about illegal immigrants?
JM: That was defeated. Abortion amendment was turned down. It was a very partisan session. The good news is that all the Democrats supported this, and in the subcommittee that was not the case. Only two Republicans supported it, we lost one from last time.
JM: Another concession—Shanksville and Pentagon were added, or can be added to program at administrator’s discretion.
LC: I don’t think the millionaire amendment is a good idea. You can have a city worker who years ago bought a Staten Island home for 1 million, and because of rising property values, plus pension and income of spouse, that puts them over $1 million in assets.
JM: City/WC amendment- if the city were inappropriately holding up Workers’ Compensation benefits, each year it would increase the cost of the program by 1%. But the people who drafted it got it wrong; they thought the city administered Workers’ Compensation, and that they had an insurance carrier, etc. I would like to thank Dave and Laura and others in FDNY and Sinai who gave us information to give to the CBO. Some of it was used by congressional reps during the hearing. What we don’t have yet is a CBO score. Mike Crane was there and made rounds with some Republicans. The whole dynamic was about the deficit, and Barton actually apologized to King. No one was against the program or bill per se, but there was nitpicking about the deficit and budget. The next steps include more Committee approvals that do not require hearings. We need the Ways and Means committee to provide a way to pay for it. We also need to get it scheduled for the House floor. We know Pelosi is for the bill. We need to get it in before July recess so we have time to work on getting in the Senate. You might hear from them, but their staff has changed. But the Republican staff has not changed. The goal is to get this passed in the House and Senate by September 11 of this year. If you’re interested in all the amendments and votes on them, they are on the committee’s web site. They were pretty much along party lines. Thank you to everyone who sat through the hearing.
Cancer Update: Dave Prezant
We have had several conference calls regarding the planning of the analytic meeting on the cancer data. The problem that we are facing is that the room is starting to fill up. Typically a meeting with statisticians is small with a blackboard, but in this meeting there will be 9 experts from all over the country with about 90 plus people in attendance. There are about 20 analytic questions grouped into 4. At the end of the day, there will be an open forum for questions that the non-analytic group can participate in. This is how we are getting around the large group. Each smaller group will have 9-12 analytic people in it. Attendees will be getting packets shortly.
SC Agenda Changes: Jim Melius/Steve Markowitz
I sent an email on Friday asking for people to submit topics that they would liked discussed here; policy, scientific or other types of topics. I did not get any responses but I encourage you to do so. We can also discuss them now. The first thing I thought of was having people from other monitoring and compensation programs come in and give us a presentation on how their operate their programs. Groups that come to mind are the DOE and the VA by other monitoring and compensation programs, such as DOE (special exposures), the VA (Agent Orange Program). I would volunteer myself and Jim in future meetings to give a presentation on DOE programs. Would there be interest?
DP: Yes, especially as it relates to cancer and things of that sort?
SM: What other topics?
JM: Jeanne and Steve Stellman have been involved for a long time on the Agent Orange subject.
BL: One thing we’ve been doing in our center is quality improvement. It might be useful to have someone with expertise to talk about this; getting data to evaluate our program, etc.
JM: In the legislation, we inserted increased emphasis on that. The health care debate has been amusing- Republicans were all for fee-for-services. But in the context of this bill, they are against that model. So instead there’ll be an inspector general.
MSdH: There are a number of issues that arose from benefits survey.
Separately, there’s the issue of physician determinations of WTC-related disease. There seems to be inconsistency across the clinics. After the cancer meeting, there should be a continued discussion of whatever gets discussed there.
DP: That should be at the July SC meeting.
MSdH: I’d be interested in hearing, as physicians what do you find responders have the most concerns about when they come in, what they find most confusing, medically. So we can address it in future educational efforts. We really need to have conversation about treatment modalities.
JM: There should be an update on Bellevue Community/Survivor program. I know Joan has clinic this day, but perhaps someone else can do it.
Terry: Yes we can do that.
MSdH: Something else we never settled—patient appeals. We don’t have a written process. There are things that come up with individual patients that get dealt with or attempted to, within clinical centers, but we don’t have a method.
JM: And how is the attribution to WTC made? That’s a major confusion among patients. We need to know how to communicate this with them.
MSdH: Related to that, Workers’ Compensation questions.
DP: Perhaps one of the psychiatrists can discuss implication of consistently high or climbing scores in mental health screenings? We have members for whom this is a consistent issue. We try to refer them to the treatment program, but they say they’re fine, or more commonly they say they’re already in treatment. I wonder how you deal with this scientifically and clinically.
BR: There’s also a problem with the covered conditions list, it has not been changed to reflect clinical realities. We decided on that list many years ago.
IU: We were working on that the day Dr. Enright was in town. Perhaps we can have a document of clinical concerns from PI meetings?
BL: I would like to discuss use of medications; in particular PPI’s for GERD. Patients want the medications, but they get sent to the GI specialist and nothing’s found. In the meantime they’ve been on the drugs for years and there are concerns about side effects. What is going on with these patients? It would be great to have some of our clinicians to come and give their accounts and insights.
MGue: My concern is that were are talking about it and not actually doing something about it. Perhaps we should have subcommittees about many of these issues to move them forward outside the SC meeting.
DP: About GERD: we are planning a long meeting about that, similar to the sleep apnea meeting. We can add the PPI question.
SM: Can we afford a half hour in the SC meeting?
MGue: Can we just submit reports in writing?
JM: They are not that long, and there are enough questions.
Summer Meeting Schedule
All agreed to have a meeting in July and discuss then or whether or not to have an August meeting.
Update on New Enrollees: Laura Crowley
PowerPoint Presentation Slides will be sent to the group.
ACTION ITEM: Laura Crowley will email PowerPoint presentation to the Steering Committee group.
MSdH: Some of these slides raise questions that perhaps we can discuss in the future. Are the differences in diagnoses distribution across clinics due to the population, or another factor?
LCr: I think this highlights your earlier question about how different doctors have different practices.
SM: So this is restricted to people who came in for V1 in 2009? It looks like roughly 50% were referred for treatment. Are these folks who waited several years to sign up, were these people who had conditions prior to coming in and now need treatment or are they people who were fine for several years, now have conditions, and doctors here are deeming them WTC-related? We need to discuss this.
MSdH: How many of these people have sought treatment before? Did treatment work?
LC: It would be interesting if you could capture, when they come into the program and why? Was it an outreach effort? We need to have some discussion or update on outreach.
MGue: It would be good to have a snapshot of V1s from another period and compare it to this. I would propose the first two years of the program. But then they’d still have to be in the program now, because we didn’t have treatment data then.
KK: We still see people who come in now who need mental health treatment. Sometimes it can be triggered by another work event, or something happened in their personal lives.
IU: Can you break it down to population without federal workers? I’ve encountered scenarios where people are already in treatment, but they come in because they heard a friend or relative was treated by us. Also where people live; close but not in the NYC area (PA, DE).
BL: It would be interesting to see where people are in their job cycles, for example, uniformed workers close to retirement, where they can look at their health without imperiling their jobs as much. It would also be good to look at people who are actually in retirement.
MSdH: I’m assuming the clinical centers don’t ask systematically why people are coming in now. Maybe there are no consistencies, but it’s either something to consider doing as formal part of intake, for further study.
HK: I had the same questions about variations in clinics when I saw the data. What I would propose is a one-page survey form given to patients about what brought them in now.
WH: We collect that information informally. The majority of them say they have never heard of the program. The second group has been treated by another doctor; third group want to document their experience and medical history, for retirement, for example.
MGue: The questions that we ask were created by this group so we are consistent. If we are going to be systematic, we should add this topic to the list that Steve has started.
ACTION ITEM: Laura Crowley will present a breakdown of the numbers on new enrollees according to attendees request at the next meeting.
Cancer Treatment Resources: Alison Snow
I’m an outpatient oncology social worker at Mount Sinai. Scottie Hill invited me here to present some cancer treatment resources that I come across in my work. I brought some handouts, a calendar of events at Tisch Cancer Center, and a list of resources.
ACTION ITEM: Alison Snow will email the PowerPoint presentation on cancer resources to members of the Steering Committee group.
Announcements: Next meeting is on July 7th 2010 at DC-37