WTC Medical Monitoring and Treatment Program
Full Steering Committee Meeting
November 4, 2009
Chair: Jim Melius, DrPH, MD, Laborers (JM)
Attendees:
Phillip Landrigan, MD
Laura Crowley, MD, MSSM DCC (LCr)
Jacqueline Moline, MD MSSM CC (JMol)
Iris Udasin, MD UMDNJ (IU)
Steve Markowitz, MD Queens CC (SM)
Roy Fleming, NIOSH (RF)
Kerry Kelly, MD, FDNY CC
Jean Weiner, MSSM DCC (JW)
Michael Crane, MD MSSM (MC)
Lauri Boni, CBNS (LB)
Denise Harrison, MD, Bellevue/NYU CC (DH)
Marie Stelluti, DCC (MS)
Lee Clarke, AFSCME DC-37 (LC)
Bill Romaka, UFA (BR)
Vincent Variale, UEMSO (VV)
Phil Mouren, FDNY (PM)
Matthew Cassidy, MSSM CC (MCy)
Melodie Guerrera, LIOEHC (MGue)
Lara Glass, FDNY (LG)
Micki Siegel de Hernandez, CWA (MSdH)
Carol Perret, UMDNJ (CP)
Scottie Hill, MSSM DCC (SH)
Dave N. Tornberg, MD, LHI (DT)
Tamara Smith, Environmental Health Center (TS)
Chandra Matthews, CC (CM)
Waiwah Chung, RN Environmental Health Center (WC)
Spencer Carroll, FDNY (SC)
Brett Trusko, DCC (BT)
Wajdi Hailoo, MD, CBNS (WH)
Note takers: Ashley Hopkins, Dana Schinestuhl, Donyetta Conrod, Matt Lenhoff
Meeting held at DC37, 5th floor.
Welcome; approval of minutes
CC/DCC Reports
Queens: Lauri Boni
Wait-time: We still have a two week wait-time for monitoring and no wait-time for treatment.
Examinations: In September, we performed 108 (18 V1, 47 V2, 26 V3, and 17 V4) monitoring exams out of 198 scheduled appointments. We performed 54 physical health exams, referred 9 patients into physical health and 1 into mental health treatment. We also had 114 mental health appointments and 13 social work/benefits appointments.
Capacity: We have the capacity to monitor over 120 patients per month, in addition to meeting our current level of treatment activity.
New Developments: We have recently contracted with two new mental health providers, one of whom is a Queens based psychiatrist. Our lead social worker, Irene Rosenthal is in the planning stages of developing a support group for responders. If there is sufficient interest, the group will meet one evening a week in our clinic. Outreach activities at the DCC are having a positive impact identifying new responders in our clinic. In addition to an increase in new law enforcement participants, we have begun seeing new EMS responders who were informed through the efforts of the DCC that the program was still accepting new V1s.
Challenges: The burden of storing medical records and x-rays within our limited clinical space is becoming increasingly difficult. Social workers are reporting an increase in the number of patients who are unemployed and who are in need of benefits.
Long Island: Melodie Guerrera
Wait-time: Monitoring patients can be scheduled to come in within a week to 10 days. Treatment patients can be scheduled on the same day as necessary.
Examinations: Our volume is picking up significantly over that of the summer months. In September, we saw 263 (33 V1, 84 V2, 97 V3 and 49 V4) monitoring patients. We are scheduling and seeing V5s and those numbers should begin to be reflected in the October and November months’ summary. No-shows, cancellations and reschedules are still significant but have lessened since the summer. Of 387 available slots, 57 were no-shows, and 67 were cancellations. Regarding treatment, we saw 119 initial physical health visits, 69 initial mental health visits, 154 follow-up physical health visits and 256 follow-up mental health visits. The total number of physical health visits for the past twelve months is 2,197; total for mental health is 904; total unique physical health is 2,431.
Retention: Our retention rate is back to at least 70% on all visits categories. We expect that number to continue to climb; our October summary indicates that we have hit the elusive 300 monitoring visits for the month, despite having a Monday holiday. We continue to schedule Saturdays as needed, as well as late afternoons. Despite the increase in volume we are still getting our final and urgent letters out in a timely way.
Challenges: We have run out of seasonal flu shots at two out of three of our sites. NUMC received theirs later and still have a supply. H1N1 is not being offered at this point.
Announcements: Our Hicksville site open house is scheduled for December 3rd. All are invited and will receive written notification.
UMDNJ: Iris Udasin
Examinations: We performed 80 monitoring visits in October. This is great, because for this time of the year we usually don’t go over 70. We have very few no-shows. We scheduled a Saturdays recently and everyone came in for their appointment, we were highly surprised and pleased. We have made more mental health referrals; a lot of these patients had been referred previously and never utilized the services. We have 6 patients that have dual membership with both our clinic and LHI. These patients are largely located in PA, NY and MA.
Challenges: We had a lot of V1s in September and October and that is making our retention numbers look low.
New Developments: We did a great amount of outreach; we met with an organization called Voices of 9/11. This group is very interested in mental health outreach. We have also hired a new psychiatrist.
Bellevue: Denise Harrison
Wait-time: We have a 1 month wait-time for a monitoring exam. There is no wait-time for a treatment exam.
Examinations: We performed 80 monitoring exams for the month of September.
DCC: Phil Landrigan and Laura Crowley
Dr. Landrigan: I just wanted to praise Dr. Herbert for her work with this program. The plan for the DCC is that I will sit in as the PI until the legislation is passed. On another note, the NY Naval Militia presented the Flag of Heroes to Mount Sinai. This display has the names of all the responders from all the rescue jobs printed on it. It will be on permanent display at Mount Sinai in the main hospitable building.
Dr. Crowley: The clinical core has been working with the PIs on a regular basis on a number of topics. We have discussed the E-newsletter, patient protocols and the retention letter that is scheduled to go out very soon. The PIs have also been discussing final letter revisions –when it is done it will be brought to the group. The migration of Logician is being worked on as well. Our Sarcoid manuscript is being resubmitted. We met with Dr. Katz and the mental health working group. This month our scientific monthly meeting will be on Post Traumatic Stress Disorder.
Discussion:
SM: We were wondering if we can get some of the data on out patients concerning mental health. We would like to get some idea of what new registrants over the past 7 months are being treated for.
LCr: We can work together to get you those numbers.
MGue: It seems to be an accessibility issue to our data in Trial DB. We should be able to access our data; it is not helpful to not be able to see it. We should not have to pick and choose what we want to see; we want to be able to see it all.
JM: It is a complicated issue—there are IRB, consent and NIOSH issues to contend with. But we should try to resolve this issue.
MSSM: Jacqueline Moline:
Wait-time: Our wait-time for a V1 exam has increased quite a bit. We have no wait-time for a follow-up exam in English, but a 1 month wait-time for Spanish and Polish language exams. We did set aside days dedicated just for Spanish and Polish exams, but we had a dismal turn out.
Examinations: In October, we performed 659 monitoring exams out of 1,100 slots available. We saw 200 treatment visits, 50 unique social work visits and 140 follow-up social work visits.
Challenges: We have been getting a lot of emails from volunteers who are feeling that they are not being heard and that there are a number of ailments that we are not addressing in the monitoring program. The issue is that people are expecting that if they have any medical problem, regardless of what it is, that began after 9/11; it has to be associated to the work at the site.
Discussion:
LC: Is it possible to create a forum for these people to get together to voice their concerns? There could be staff from the clinical centers to answer their questions. We should a least try to help with some of their issues.
MSdH: EHC did a similar forum with responders and it was helpful.
JMol: We have asked the volunteer group to help us put together our next conference.
SH: I have always felt that we needed to have a participant advisory board.
MGue: I think that this issue is broader than the volunteers. Some folks are just not satisfied with what we can do as a program. We can only explain to them what our limits are, but if we delay it will only make it worse in the long term.
ACTION ITEM: Scottie Hill will get back to the group with some recommendations on how to resolve the issue of the volunteers feeling as though their concerns are not being heard.
FDNY: CC Examination Numbers
(NO DCC Report)
Monitoring: September 2009
V2 baseline: 15
V2 follow-up: 40
V3: 184
V4: 482
V5: 215
Total 936
Treatment (Physical Health)
New Patients: 200
Unique Patients: 666
Current Members: 3,606
Treatment (Mental Health)
Delayed
National Program Update: Dave Tornberg
October Numbers:
256: Completed Exams
854: Patients in treatment
21: New patients in case management
Discussion:
SH: What is the best way to fast track a patient in the National Program who may need care immediately?
DT: You can just email me or Sarah Parrins.
WH: What is the distribution of these patients by state?
DT: I don’t have that information on me, but I can bring a map at the next meeting and break it down state by state.
ACTION ITEM: Dave Tornberg will bring a map of the NP responder’s locations to the next meeting.
Fleming
(LHI No-show/cancellation policy is distributed)
The federal government is under continual resolution, which means that we can use the funds available. This program is stable through next June. If there are any needs that might arise in terms of expenses we will like to know in advance at least 60-90 days. There are still 150-200 people that we have not been able to reach for the National Program and 500 or so responders have been allowed to stay with their own provider.
We wanted to bring to the group the no-show/cancellation policy. The basic approach is that after the 2nd cancellation or no-show, we leave it up to the responder to make the effort. We are not rejecting the patient; we are just leaving it up to them to contact us. When a patient cancels an appointment, we still have to pat the provider.
Discussion:
LC: What does it mean that you will have a patient describe to you what they will do to try and not miss another appointment? I would personally get defensive if you asked me that question.
RF: We will try and make it more of a dialogue with the patient.
MGue: We have learned that after a few no-shows, we leave a patient alone for 6-8 months.
MSdH: In general, I think the policy is good. Have you tracked why people are not showing up?
RF: We don’t have the numbers, but we have caught it in a broad concept. The problem with trying to categorize why people are not coming in is that we won’t be able to help with that. The overbooking approach won’t work for us. On another note, enhanced reporting will include: PH and MH patients broken down out into categories. It would be helpful for people to understand the health conditions of this population. NIOSH will be putting out some of this information on our website. We want to have an agenda for the afternoon as well. We want some additional structure to those meetings.
BR: Will you include cancer data?
RF: Things that are not included on the WTC covered list, we will not include.
Legislative Update: Jim Melius
We are still waiting for the Energy and Commerce Committee to consider our legislation. Legislators from the House and Senate are planning on visiting NYC next month and will meet with FDNY, Mount Sinai and the City—their interests: reimbursement issues, Line of Duty, and Workers’ Compensation. On Nov 18, the FealGood Foundation will hold a rally for the legislation. There will be a number of Congressional speakers—I urge people to participate. This will be a great chance to be visible.
Subcommittee on Essential Services: Micki Siegel de Hernandez
Each clinical center has received their interpretive reports. The next step is to tackle issues of training, outreach, patient materials.
Follow-up on Multiple Myeloma: Jim Melius
The working group with Steve Markowitz will be meeting and will follow up at the next SC meeting.
Eligibility Issues: Scottie Hill & Chandra Matthews
(Phone Bank Registration and Eligibility Script Draft was distributed)
SH: We have worked on revising the phone bank scripts; there has been a full-rewrite mostly because the eligibility requirements have changed. There was also the anticipation of the new data sets.
CM: One of the first things that we looked at was the registration section of the system. We wanted to start excluding information that we don’t actually collect and use, like marital status and social security numbers. We are still collecting patients preferred language, union affiliation (at the time of 9/11 and current affiliation). Regarding the eligibility determination, we wanted to expand the script to include a more detailed description of the program-- expectations, funding. If a responder was not eligible, we want to be able to refer them to another program that they could be eligible for. Attestation of program eligibility script will include signing an affidavit. We will have a separate script for federal worker, FDNY responders (process for responders who are active versus those who are retired), PATH tunnel workers, vehicle maintenance workers and law enforcement workers (this script may change pending legislation being passed).
Discussion:
RF: You might want to include a brief piece about the National Program. In case they move down the road.
MGue: I am upset about the hierarchy of eligibility for the law enforcement workers. What is the distinction of eligible groups? There are provisions in the legislation to make other groups eligible…that should be the starting point for discussion.
SH: Also we will have to decide who could be grandfathered in if legislation passes. My opinion is that we currently grandfather in these people before the new legislation. The eligibility determination has been changed over time. There are provisions in the legislation to make other people eligible.
RF: Do we have a number for people that are ineligible?
SH: Not yet.
JM: Robin looked at it and it was around 1,000 or so. There are a lot of people out there that think they aren’t eligible, but may now be as our criteria have changed.
RF: My understanding is that we have 34,000 eligible. I agree with Melodie, it should be applied to all occupations.
SH: Refine wording: specific groups for monitoring, specific conditions for treatment, general program eligibility—trying to target clean-up workers, how do you determine eligibility, area workers versus people who were hired to clean up? Should someone who just had to clean up their workspace eligible for our program? I think we decided in Steering Committee that they don’t. Not sure if that distinction still matters, we may still have to have a discussion about this. The locations were a responder did work are the same. Work hours are now 80 hours 911/01-7/31/02. 4 hours from the 11-14th still in place.
CM: The eligible script is based on WTC work. In terms of national patients, it is based on zip code and what zone they fall into. The responder is given all of their options.
ACTION ITEM: Comments on the Phone Bank Registration and Eligibility Script should be given to Scottie Hill. Revisions will be discussed at the next December SC meeting.
PPC Issues: Jim Melius
Mailing for the law enforcement program: The conference was included in the materials. The mailing was done by a transfer house; no other access was given other than for the mailing. An abstract was done on data without the PPC and what the process is for the PPC. It would be helpful to clarify how things are handled in the PPC-including distribution, making sure abstracts get circulated, making sure everyone is aware of who is responsible. Jean and I will create a procedural document and present it to the group.
ACTION ITEM: Jim Melius and Jean Weiner will draft a document on the PPC protocol which will also encompass the issue of Data Access for the CC’s.
Announcements: We will indeed be meeting in January, on the 6th.
Adjourn