WTC Medical Monitoring and Treatment Program
Full Steering Committee meeting
DC-37
Wednesday, March 3, 2010
Chair: Jim Melius, DrPH, MD, Laborers (JM)
Attendees:
Laura Crowley, MD, MSSM DCC (LCr)
Jacqueline Moline, MD MSSM CC (JMol)
Iris Udasin, MD UMDNJ (IU)
Kerry Kelly, MD, FDNY (KeKe)
Dave Prezant, MD, FDNY (DP)
Denise Harrison, MD Bellevue/NYU (DH)
Melodie Guerrera, LIOEHC (MGue)
Roy Fleming, NIOSH (RF)
Dori Reissman, MD, MPH NIOSH (DR)
Jean Weiner, MSSM DCC (JW)
Laura Boni, CBNS (LB)
Phil Mouren, FDNY (PM)
Matthew Cassidy, MSSM CC (MCy)
Steven Markowitz, MD, CBNS (SM)
Lara Glass, FDNY (LG)
Michael Crane, MD MSSM CC (MC)
Lee Clarke, DC -37 (LC)
Carol Perret, UMDNJ (CP)
Bill Romaka, UFA (BR)
Kevin O’Rourke, Ironworkers, Local 40 (KO)
George Friedman-Jimenez, MD, Bellevue/NYU (GFJ)
Dave N. Tornberg, MD, LHI (DT)
Spencer Carroll, FDNY (SC)
Waiwah Chung, RN Environmental Health Center (WC)
Vincent Variale, UEMSO (VV)
Mitchell Bass, MSSM CC (MB)
Notetakers: Donyetta Conrod, Ashley Hopkins, Annie Lok
Welcome; Report on Recently Deceased WTC Responders: Bill Romaka
BR: I am happy to report that we have not had any recent deaths.
Approval of Minutes:
BR: There needs to be a correction made in the legislative report (page 6). In the middle of the Instead of “FDNY” it should read “NYPD”.
DH: I was not listed as an attendee at the last meeting, but I was present. My report was also omitted.
Minutes approved; unanimously
CC/DCC Report
Queens: Lauri Boni
Examinations: We had a decline in monitoring appointments in January primarily due to staffing shortages. In January, we performed 71 monitoring exams of which 21 were V1, 15 V2, 14 V3, 18 V4 and 3 V5s. There were 17 no-shows and 47 cancellations.
Capacity: We have the capacity to monitor over 120 patients per month in our clinic, in addition to meeting our current level of treatment activity.
Referrals: We referred 13 patients into physical health and 6 into mental health treatment in January. We also saw 67 physical health visits, 108 mental health visits and 15 social/benefit health visits.
New Developments: Mathilda Lopez has started working with us part-time as a benefit coordinator in our clinic. She has 10 years of relevant experience and speaks Spanish.
Challenges: We are still working to fill staff vacancies and as reported above, are now experiencing the predicted impact in the numbers of exams we have been able to conduct.
Long Island: Melodie Guerrera
Wait-time: Wait-times are unchanged; monitoring patients can be scheduled within a week and treatment patients are able to be scheduled on the same day, if necessary.
Examinations: In January, we performed 205 monitoring exams of which 42 were V1, 50 V2, 50 V3, 35 V4, and 28 V5s. No-shows, cancellations and reschedules are still significant, but many were the result of the weather, we believe. We saw 128 initial physical health treatment visits, 54 initial mental heath visits, 1239 follow-up physical health visits, 288 follow-up mental health visits. We also provided benefit services to 11 initial visits and 80 follow-ups. The total number for physical health treatment patients over the past 12 months is 2,265. The total number for mental health patients over the past 12 months is 1,068. The total for unique treatment for the same 12 month period is 2,586.
Retention: Our retention rate should meet or exceed 70% on all visit categories.
Challenges: We did have a problem with the scheduling patients in Nassau County as it seemed we were encountering resistance. However, we just discovered that the DCC had been segregating our eligibility lists (the lists we use to connect patients) into three categories and we only had access to one. The result of this was our patient call lists were inadvertently restricted to patients who would rather go to our Islandia site. This issue has now been remedied. Our situation with our physician at out Hicksville clinic remains unchanged; he is re-locating out of the area and his last day with us if February 25th. We thought we had worked out coverage, but we have since gotten notification that our new NP is moving and her last day will be in March. We are working to identify coverage, but hiring a physician may be impacted by the length of our funding situation. We do have one physician that is interested in the position. We have posted for the NP position. On a more positive note, our budget coordinator has returned.
Bellevue: Denise Harrison
(Report from 02-3-2010 meeting that was mistakenly omitted from last month’s minutes will be incorporated into the minutes from that meeting.)
Wait-time: The wait-time for monitoring exams is 1 month for all visits. For treatment physical health exams, the wait-time is 1 week and for mental health it is about 2 weeks.
Examinations: In January, we performed 53 monitoring exams. We also performed 44 physical health exams and had 49 mental health visits.
Capacity: We are still waiting for space.
New Developments: We have a new Spanish speaking psychologist that will start this month.
(New Report from 03-03-2010 meeting)
Wait-time: The wait-time for monitoring exams is 1 month for all visits. For treatment physical health exams, the wait-time is 1 week and for mental health it is about 2 weeks.
Examinations: In February we performed 52 monitoring exams. We also performed 43 physical health exams and saw 56 mental health visits.
Capacity: We are still waiting for space.
New Developments: There will be two new psychiatrists to start in April. Our program is now being utilized by the psychology department at Bellevue as part pf their “Trauma Track”. Externs in psychology can now rotate through our program or the Bellevue Hospital Survivors of Torture Program as part of their training. They will be involved in administering the questionnaires and some counseling supervised by our licensed psychologist.
UMDNJ: Iris Udasin
Examinations: In January we performed 70 monitoring exams and in February we performed 49. We have a no-show rate of 27% for monitoring.
Referrals: We referred 36 patients into physical health and 10 into mental health.
New Developments: We added a GI doctor in Northern New Jersey. We also hired a benefits/outreach coordinator.
FDNY: Dave Prezant & Kerry Kelly
CC Report: Monitoring Exams (January)
V2 Baseline: 10
V2 follow-up: 15
V3: 90
V4: 409
V5: 276
Total: 800
Treatment Physical Health (January)
New patients: 170
Unique patients: 7
Current # of patients in treatment: 1, 572
Treatment Mental Health (January)
Delayed
DCC Report
DP: We continue to improve our clinical database infrastructure. The physical and mental health databases are functioning well; there have been some days of technical and hardware issues, but in general it is doing well. We are working on additional improvements. We are migrating from Oracle version 10 to version 11; this should help us translate that we discuss with patients into easily understandable graphs and figures. We anticipate that we will have this set up by the spring or summer. We were planning to send a dashboard report of critical demographics, but it was delayed. We should be able to send it out in a month or two. We have signed contracts for the scanning project that we are about to undertake. This project should be up and running in a week and finished by June 30th. The software is customized and we will be able to scan all reports that are done outside of out facility. The clinician will have full-time access to documents which will be usable in the exam room.
We are going to have a one week pilot project in Florida where we will be giving monitoring exams. If we were just doing treatment, then LHI could take care of it. But, we also want to do monitoring, so we don’t have any longitudinal dropout. We will be giving these exams in Dade County at a FDNY Wellness Center. They are willing to see our patients as the same cost to NIOSH as is current with our clinics. If this works out well, then we might consider doing it two to three weeks a year.
We have an article in CHEST regarding pulmonary functioning; that should be out in print in March. There has been some press associated with it, but not a lot. We have received galleys from NEJM, I am not sure when it will be published. The major finding is that there is major decline of lung function in the first year, and then it plateaus. Comorbidity of depression and PTSD is being reviewed. Quality of life in treatment group has been resubmitted. We have joined with Mount Sinai to set up a meeting with experts on cancer methods.
Discussion:
MGue: I have a question about scanning. We are planning to do that as well, and we plan to index. But at the moment, they are PDF’s. Can they be converted?
DP: The problem with converting PDF’s to raw data is the image recognition software programs; they work best when PDF images are predictable, but so many of our reports come from diverse locations. Most of the images do not look the same.
VV: So you are only going to be doing monitoring in Florida?’
DP: Yes. If they need treatment, then there are some options: 1) the center doing the monitoring can do the treatment. 2) Have LHI do the treatment. Right now we are contacting people who have expressed interest in the program, but we will contact unions as well.
VV: Is this for new patients or will there be a mailing to members?
DP: We are looking for a quick hit right now, so we are not seeking out new members for this pilot program. If it works out, then we will reach out to people who have dropped out of the program or have never been.
SM: The indexing system that you referred to, is that commercially available software?
DP: It’s a hybrid of being commercial and customized for us.
SM: Regarding the NEJM article, the firefighters had the initial large decline, and then it stayed steady, so this means no recovery and the typical age-related decline.
DP: Correct.
MSSM: Jacqueline Moline
Wait-time: Our wait-time is less than 2 weeks for an English language exam. V1 exams can be performed the next day. We have experienced an increase in non-English language wait-times.
Examinations: We performed 508 monitoring exams in February; 574 in January. In February last year we did 473 monitoring exams. We performed 92 physical health exams and saw 15 patients in mental health.
New Developments: We have had a new influx of new patients in monitoring. We have V1 days weekly now for the next 6-8 weeks. This influx is due mostly to the new law enforcement officers that have enrolled since learning that the Law Enforcement Cardiac Screening program will be ending in June. We might see this for the next few months.
Discussion:
IU: Are the law enforcement officers mainly NYPD?
JMOL: Yes primarily, with some FBI and others. Not so many from the Port Authority.
DCC: Laura Crowley
The clinical core continues to work on three protocols that were discussed previously at this meeting. The protocols have been redrafted and we want Micki and Lee to look over them. We are also working with mental health at Sinai to see what the protocol at Sinai is for behavioral issues.
We did organize a PFT training to take place on March 26th; this will be a re-training for techs and doctors. This training will be attended by Paul Enright.
Scottie will host a meeting on LODI. The newsletter draft that is focused on mental health was circulated this week. Please submit comments, if you have any.
The health outcomes and data management cores are working with the clinics and NIOSH to produce updated quarterly reports. They have bi-weekly meetings with clinic administrators. Jon Mercado is working to transition the phone bank from Logician to Trial DB.
We have received feedback on our asthma paper from the Scientific Advisory Committee; sarcoid paper has been resubmitted. Mental health working group and pulmonary group are working on dynamic upper airway paper. David Kriebold will be presenting on occupational health surveillance and Paul Enright will present on quality of spirometry.
Discussion
LC: Is the Mount Sinai outreach report for the entire program?
JMOL: It is done by Mount Sinai staff, but for the entire program.
LC: I am concerned with the title of the report. There may be a perception by other groups that only Mount Sinai does outreach activities.
JMOL: All the clinics do outreach. Some of the clinics might not have turned in their reports this month.
SM: So there are 1800 or so new registrants. I just want to make sure we are tracking how many of those are getting scheduled, and what the profile of then is.
LCr: I will talk to Scottie about it and report back to the group.
SM: She wouldn’t be the source fro the referral information.
LC: There would have to be some cross-matching.
DR: There is interest from the WTC Registry about personalized outreach; why people know about the program or why they have not come in.
JM: They said the NIOSH would not fund them.
MGue: Does the registry mail or call people?
JM: Both. They are a little better now at getting information to people, referrals to other programs such as the community program. It is better quality information than it used to be.
National Program Update: Dave Tornberg
DT: The treatment numbers are down; at some point the cohort should stabilize. The demographics, because of the volunteers are very different.
February Numbers:
303: Histories completed
240: Labs completed
52: Completed Exams
18: Referred into treatment
12: Moved into case management
22: New patients enrolled
NIOSH Update: Dori Reissman & Roy Fleming
DR: We are working with the clinical centers on GI issues such as GERD and its progression and psychological practice questions.
RF: There are adequate funds, I think for all programs, to finance this year. I suggest getting in your progress and budget reports to us by April 16th. We will talk about how to structure this; prepping applications and justifying budgets. Budget period 5 is now 3 years long--this is unprecedented. There has been a request that we engage with the PIs about additional requirements in reporting, including claims, health conditions, medications and procedures performed. If those system adjustments were to cost a lot more than available dollars, we would have to figure out what not to fund. Right now we think there is enough money to accommodate additional reporting systems.
ACTION ITEM: Update on reporting requirements to be added to next month’s agenda items
Legislative Update: Jim Melius
We are headed for a mark-up in the Energy and Commerce Committee around March 16th. Bill Romaka and others will be going down to DC on that day. So there is a lot activity going on—there was a meeting of NY Congressional Delegation last Wednesday to get organized for the mark-up. There are some amendments to the bill being prepared, but not any huge changes that should affect the program. Some Republicans and the Blue Dog Democrats may oppose the bill. There will be a fair amount of lobbying in the next coming weeks. One of the issues that are likely to come up is the treatment of undocumented foreign nationals in the program. The Daily News has already reported on this issue. You might be getting some questions soon from the media. Another issue is musculoskeletal disease and why it is treated in the program. If Congressman Rangel or Weiner’s staff calls you, please be responsive.
Discussion:
RF: We got an inquiry to our counsel about undocumented workers
JM: If you get any questions, the answer is that you are providing care to people who responded to 9/11. And as far as you know, they were eligible, and we don’t know of any restrictions as long as they are eligible. The Bush administration never restricted the program that way.
DP: The city asked for an update on our numbers. The biggest issue for funding is the confusion about fees for monitoring and 300-400 for treatment. We could figure that it is 900 for both, but the bill might not interpret it that way. I’ve asked the city to deal with that.
BR: How will Congressman Rangel’s stepping down affect the bill?
JM: He temporarily stepped down as chair from Ways and Means Committee. I don’t think it should affect the bill. His replacement, Congressman Stark from California, is supportive. My question is when will this go to the floor for voting and then when will the Senate take it up. I will circulate a possible amendment on the cut of the reimbursement rates. You can respond. The firefighters are having their conference that week as well, that is why we are going on the 16th.
Subcommittee on Essential Services: Scottie Hill
Scottie Hill could not attend this meeting.
Cancer Update: Jim Melius & Dave Prezant
DP: We have been having parallel phone conversations about cancer, if one views the WTC efforts as four groups consisting of FDNY, the clinical centers, WTC Registry and the community program. These conversations have been going on for quite some time on cancer data collection. There was a meeting two or three years ago about definitions of possibly confirmed cases of cancer. We used national standards and came up with reasonable requirements. There have been other discussions, such as about multiple Myeloma. Another group I started to chair that dealt with analytic tools for counting cancers that are not as obvious or routine as I thought originally. We can’t just plug in our data to the American Cancer Society analysis. There are special statistical issues in this program. The question is, “When do we start counting person years, maybe from birth, from 9/11, or entry into program?” I invited NYU/Bellevue to set up statistical model meeting; to talk about statistical methodology. We don’t have to use the same method, but we should be informed. NIOSH is participating, and all groups and we also have a list of outside statistical experts. We’ll go over that list next week and have another call to confirm the list, and invite people to come in. I want to state clearly: results will not be mentioned in this meeting, in April or early May. This is to allow groups to get their results together sometime after. The four groups are not operating on the same timeline. We’ll have to decide on how to deal with that. Mount Sinai is probably ahead of all of us, or same as FDNY, in looking at blood-borne cancers, but not for other kinds of cancer. FDNY is probably ahead in looking at all the cancers. The Registry is close but months to a year behind us at least. Bellevue community program is furthest behind. This might be a challenge in communicating the findings to the public.
Discussion:
BR: Don’t invite that French guy back.
DP: No, they have been excluded from the process.
BR: We keep pushing everything back. We need to be careful, but there are people who need help now.
DP: From the FDNY perspective, our data analysis that is ready for primetime will be complete by April. As long as nothing earth shattering comes from this meeting, we can incorporate their suggestions in another month. I think the answer is more difficult – it wouldn’t really matter what model we use, if there’s an overwhelming obvious increase in cancer. This methodology becomes necessary in the absence of that.
BR: You’re looking at 5 years before and 5 years after 9/11, but we’re seeing cancers now and going forward.
DP: One of the reasons we’re contemplating closing at 5 years out is the tumor registries that exist statewide, their data is stamped as gold standard only up to end of 2006. They always lag 2 to 3 years behind. To incorporate their data, we only have their seal of approval up to 2006. Next year we can go to 2007. We’ll always be behind. Whether we do two analyses, or examine expected impact, we are dealing with the infancy of cancer data.
BR: I find it upsetting to learn from WCB that if you retired before 9/11 and you have 9/11-related cancer, they’ll pay for it out of volunteer’s fund.
JM: In the volunteer WC program, there is no controversion, so they are compensating some cancers. That’s what they told us on the phone.
MGue: If a doctor supports it, then it’s yes.
LC: The volunteers have always found it a lot easier.
KK: Not many doctors who take WCB treat cancer.
BR: Outside of the system, just the cost of prescriptions is very high. The volunteers WC program says they are paying for them.
SM: The cancer issue is going to be very complicated, and the initial release of data is only the beginning. We need to set up a system that works.
IU: What can we do to get our members treated? How do we release the data without hurting our members?
JM: Where is Sinai with your analysis?
LCr: Sylvan Wallenstein, the biostatistician in Cancer working group, with David Savtiz—in terms of blood cancers, we’re almost there. In terms of all cancers, that’s more of a challenge for us. It requires more work.
JM: It seems to me, given the latency for hematological cancers, getting them covered soon is good.
DP: We are not slowed down in terms of looking at all cancers. There have been outcries about esophageal cancers, thyroid, pancreatic.
Responder Day: Mitch Bass
The Mount Sinai Advisory Group has approved having another Responder Day and we’ve started working groups. When we talked to participants after the last event, they said there were too many events in one day. So we decided to have the event take place on two days, June 4th and 5th. Events will take place both in the afternoons and evenings. We will be working with a lot of the same organizations as the last time and having some of the same activities. I want input from this group on the dates and whether we should have a press event to kick the event off. Marie Stelluti would work on that if there is interest to get elected officials there. In terms of publicizing it, there is much more lead time to go around. The first ad will be in a Mount Sinai insert of upcoming newsletter. It’s a Sinai initiative, but we welcome collaboration. We will not turn any responders away. I am not sure about mechanisms to get word out to other clinical center participants.
Discussion:
DP: How many people came last time?
MB: Around 500-700.
DP: For the political segment, how many people showed up?
MB: There was about 100-200 people there.
JM: My advice is to plan on a press event. It’s too early to tell where things will be legislatively. You may want to invite Dr. Howard.
MB: We had some coverage last time with little media outreach. And this year we have much more lead time.
RF: My first event with this program was a health conference in 2006. That was a fabulous gathering, it did include a few politicians, but it allowed responders to ask questions about health problems. That type of meeting seems to meet the heart of the needs of responders.
JMol: There hasn’t been one since then. There were funds budgeted for that conference.
MGue: We had one in Long Island that was well-received as well.
MB: For the Friday of Responder Day, we are thinking of having a forum where people can ask questions of doctors, mental health professionals and benefits counselors.
MGue: These conferences were well received because people could talk to each other, and ask questions of experts who heard them.
MB: If anyone has any ideas, or want to participate in a working group, please contact me.
JM: Please include in Mount Sinai report so we are updated on this.
MB: It’s going to be in the WTC area; St. Paul’s chapel, the Hilton, tribute center, memorial museum.
SM: I would like to make a motion that we recognize and thank Jackie Moline for her contributions to the program for the last 8 and half years.
MGue: I second.
JM: Approved
SM: Jackie has a lot on her plate at Mount Sinai, and 8.5 years ago she added this program. Not only her hard work, but her ability to solve problems, in difficult institutional environments such as Mount Sinai, is laudable. She has spent half of her professional career on this issue, and she’s moving on to something I commend.
LC: A friendly amendment—I think you have to look at the impact of her career on working people, in this program and at Mount Sinai in the Selikoff clinic, it cannot be dismissed.
JMol: My last official act at Mount Sinai will be hosting a conference on 4/9 as part of NY/NJ ERC. “From Fear to Flu” --Iris will be contributing. We have a panel of people from PEF, Nurses Association. John Howard will be the keynote. www.nynjerc.com. Please contact me with any questions. I thank Steve and Lee for their kind words. I will continue to improve occupational safety and health at North Shore.
Announcements
Next meeting: April 7th
Adjourn