WTC Medical Monitoring and Treatment Program

Full Steering Committee Meeting

DC-37

Wednesday, July 7, 2010

Chair: Jim Melius, DrPH, MD, Laborers (JM)

Attendees:

Phillip Landrigan, MD MSSM (PL)

Laura Crowley, MD, MSSM DCC (LCr)

Iris Udasin, MD UMDNJ (IU)

Dave Prezant, MD, FDNY (DP)

Kerry Kelly, MD, FDNY (KeKe)

Jean Weiner, MSSM DCC (JW)

Steve Markowitz, MD CBNS (SM)

Michael Crane, MD MSSM (MC)

Matthew Cassidy, MSSM CC (MCy)

Scottie Hill, DCC (SC)

Melodie Guerrera, LIOEHC (MGue)

Lara Glass, FDNY (LG)

Phil Mouren, FDNY (PM)

Micki Siegel de Hernandez, CWA (MSdH)

Denise Harrison, Bellevue/NYU (DH)

Tamara Smith, Environmental Health Center (TS)

Lee Clarke, DC-37 (LC)

Ben Luft, MD LIOEHC (BL)

George Friedman-Jimenez, MD Bellevue/NYU (GFJ)

Julia Nicolaou, MSSM CC (JN)

Vansh Sharma, MD MSSM CC MH (VS)

Waiwah Chung, RN Environmental Health Center (WC)

Spencer Carroll, FDNY (SC)

Lauri Boni, CBNS (LB)

Vincent Variale, UEMSO (VV)

Marie Stelluti, DCC (MS)

Juan Wisnevesky, MD MSSM DCC (JWis)

Notetakers: Donyetta Conrod, Matt Lenhoff, Dana Schinestuhl

Welcome; Approval of minutes

Minutes approved unanimously

Report on Recently Deceased WTC Responders: Dave Prezant

Active FF Stephen Schwarz, age 49, WTC-related health problems.

Retired FF James G. Cizike, age 54, cancer.

Active FDNY EMT Freddy Rosario, age 45, cancer.

CC/DCC Reports

Queens: Lauri Boni

Wait-time: We have a 1 week wait-time for all visits.

Examinations: In May, we performed 71 monitoring visits out of 98 scheduled. Out of these 71 exams, 26 were V1s and 45 were periodic. We had 11 no-shows and 16 cancellations. We referred 5 patients into physical health and 3 into mental health treatment. We saw 6 initial and 40 follow-up physical health exams; 5 initial and 116 follow-up mental health exams and 12 initial and 6 follow-up social work/benefit appointments.

New Developments: We held our first evening clinic in June, it was successful and we are planning to continue with one evening per month. We are finalizing the service agreement with Innoviant Pharmacy and plan to transition our treatment patients to this provider in July. We hired a new nurse case manager and have identified a potential candidate for our Director of Social Work position.

Challenges: We are short three staff members and it is difficult to recruit anyone because we do not have any type of funding commitment. We made four offers for our nurse manager position and none were accepted. We are reluctant at this time to schedule future monitoring exams because of possible construction work. We have also been unable to negotiate a lease for additional space at this time.

Bellevue: Denise Harrison

Wait-time: We have a 2 week wait-time for all visits.

Examinations: We performed 63 monitoring exams of which 11 were V1. We saw 56 mental health patients and 105 physical health appointments.

Long Island: Melodie Guerrera

Wait-time: We have 1-2 week wait-time for all visits. We are booked 4-6 weeks in advance (but we do have emergency slots open if needed).

Examinations: In May we performed 232 monitoring exams; in June we performed 291. We saw 98 new physical health patients and had 81 new mental health patients. There 123 physical health follow-ups.

New Developments: We are working very strongly with an advocacy groups, the last Sunday in August we will be having a picnic for the responders. We have moved to our summer schedule, our clinic is only open four days a week.

Retention Rate:Our retention rate is 75%

UMDNJ: Iris Udasin

Wait-time: There is a 1 week wait-time for both monitoring and treatment exams.

Examinations: We had a slow month in June; we performed 57 monitoring exams of which 25% were V1. 80% of our patient population is in treatment.

Challenges: Our clinic experienced a lot of no-shows in June.

MSSM: Mike Crane

Wait-time: Our wait-times are down; there is around an 8 day wait for both a monitoring and treatment exam.

Examinations: In June we performed 678 monitoring exams of which 171 were V1. We had 218 new physical health appointments and 45 new mental health appointments.

New Developments: We had a legal clinic on July 6th and it went very well.

DCC: Laura Crowley

Clinical Core: We continue to have our bi-weekly meetings, along with the administrator and PI calls. Hyun Kim is going to meet with each PI to discuss the data on the newly eligible. We will eventually address the SC group again on this issue. Outreach/Retention: The NYPD disability and benefits training took place on June 16th at Bellevue-- it was a success. A full print newsletter has been delivered to the designer.

Health Outcomes: We are mapping and reforming data for V1s and the SAMHQ for V2s.

Data management: We are scheduled to go live with TrialDB sometime this month; Jon Mercado will touch base with clinics on the July 7th and 8th about the demographics section.

Manuscripts: We will have a draft for review of the exposure manuscript before the next SC meeting. A revised version of the EHP paper will be circulated to the PIs for review this week. Dr. Udasin’s paper and the sarcoid paper both went back out for consideration.

Philip Landrigan: The search for Dr. Moline’s successor is moving along well; we have seven candidates to consider and we hope to have made a decision by the end of the summer.

FDNY: Dave Prezant

CC Report: Monitoring Exams (May)

V2 Baseline: 8

V2 Follow-up: 18

V3: 91

V4: 296

V5: 356

Treatment Exams: (May)

New Patients:228

Unique Patients: 868

Current in Physical Health: 4,241

Mental Health (May)

New Patients: Delayed

Unique Patients: 564

Current in Mental Health: 1,770

We were able to examine 70 responders for our pilot program down in Florida. We are hoping to do this again next year. Many of our retiree’s exams are being performed at our satellite clinics; we are thinking of possibly expanding the days of operation at these sites. Going forward we will be sending blood results directly to our patients homes for better streamlining and we hope that having done this they will pay better attention to their results.

National Program Update

The contract is up for renewal; a request for a proposal will go out shortly. There will be no interruption in patient services.

Survivor Program Update: On agenda, but not discussed

Cancer Update: Dave Prezant

The cancer analytic meeting went well; a lot of issues were discussed. I thought the experts gave a wide range of expertise, including cancer studies and occupational cohorts. There was uniformity on the depths of the problems and there were no easy solutions. The best recommendation was that there be common exposure assessment definitions and common cancer definitions. We should involve the tumor registry on this. It was also stated that internal comparisons be superior to external comparisons. As far as the DOH, there was a huge amount of scientific pressure for them to adjust their rate for multiple comparisons. I don’t know whether that would be helpful to them, but the experts thought that it would be. The next step is to develop a common exposure assessment for the workers at the site, and then a common assessment for residents. Each cohort should be represented, including union reps.

Uniformed Services Disability Pension Board Meeting: Scottie Hill

The NYPD Disability Benefits Training took place at Bellevue Hospital on June 16 from 10am to 5pm.The training covered a variety of topics related to benefits and care issues specific to NYPD law enforcement responders, such as the NYPD Heart Bill, line-of-duty injury claims for WTC-related conditions, the public sector presumption bill, pension options for WTC-related and non-WTC-related disability, prescription drug coverage resources for active and retired NYPD responders, and an overview of the services offered by POPPA.

Speakers represented various law enforcement unions, the police pension fund, POPPA, and law firms in partnership with law enforcement unions, and other union representatives attended and participated via discussion, answering questions, etc.

There were 40 attendees at the training, and amongst them were representatives from all clinical centers of the WTC MMTP consortium, the FDNY WTC program, the WTC Environmental Health Center, and the NYC 9/11 Health Registry.

The day after the training, I circulated an online training evaluation via Survey Monkey to all training participants.Soon after, I emailed each one individually, thanked them for attending and participating in the training, and encouraging them to complete the evaluation.As of today, 30 participants completed the evaluation form.

Of those who completed the survey:

53% found the training “very useful” and 33% found it “useful.”

100% indicated that the training met their professional needs and that they were introduced to new information.

70% found the training “very interesting,” and 30% found it “interesting.”

Participants were asked about the strengths and weaknesses of the training.Strengths noted were:

The expertise and knowledge of all training speakers.

The 9/11 Responder Panel, in which program participants talked about their own personal experiences trying to negotiate these systems.

Comprehensiveness of topics covered.

Weaknesses notes were:

Many “none that I can think of” responses!

Time constraints (a lot covered in a little time).

I could have used this training 5 years ago!

Participants were also asked to list 3 things they learned in the NYPD Disability Benefits Training.There were multiple and various responses to this question, but a few interesting things stand out.

The unique relationship between POPPA and NYPD and the need for WTC MMTP to work more collaboratively with POPPA, especially for active NYPD members who currently suffer from or are at risk for mental health-related disability.

Large numbers of responses indicating what was learned were very basic of these systems (i.e. retired NYPD responders cannot access LODI benefits, that a Heart Bill exists, etc.).

Many commented on the fact that they had been sent a message that NYPD and FDNY responders are very well taken care of, have almost guaranteed access to LODI and pension benefits, and, therefore, are rarely in need of social work and benefits coordination services.They further commented that this training taught them that that is not in fact true for NYPD responders, and that there is a clear need for more social work involvement in assisting these workers.

Finally, participants were asked to list any suggestions for future training topics or additional comments in general.

Training suggestions included:workers’ compensation, medical presentations on all WTC covered conditions, other major benefits systems, how to address cancer care with WTC patients, bereavement and end-of life issues, mental health-related trainings (addiction, PTSD, meds, etc.).

Finally, after the training, I received numerous emails from participants thanking me for organizing the training and pulling people together.Many people have asked for more frequent trainings bringing the various groups and programs together for discussion around issues specific to the needs of WTC responders.Some comments that I particularly liked:

“Do you know how great it was this morning when I interviewed an NYPD responder and he told me he was retired and getting a disability pension and I understood the whole situation?”

“I will certainly have more of our staff there next time. “

“From time to time in dealing with the responders, training like this is important to learn, and refresh the social work drive which lies inherently in this line of work.”

Discussion:

MGue: In terms of other trainings, is it possible to have more?

SH: It is certainly something that we can do, but we need the resources to back it up along with the ability for people to attend.

MGue: I would like to see training on how to address the topic of cancer with patients, what conditions are covered or not covered and why.

LB: Could all this information be incorporated into a resource guide?

SH: Yes all of this information will be readily available online soon.

Legislative Update: Jim Melius

We are making significant progress regarding the legislation. We have a firm commitment from Speaker Pelosi. There were a number of amendments by the Energy and Commerce Committee, but we expect a vote sometime this month. There has been clear movement in the Senate; Senator Gillibrand introduced the bill last year. There was also a hearing, Dave Prezant and I both testified. There was also a firefighter there that had a lung transplant and a community resident who is a participant in the Survivor Program. John Howard was in attendance. The hearing was chaired by Senator Harkins. The only negative from the hearing was from Republican Mike Enzi (Wyoming). He tried to postpone any discussion about the legislation, stating that there was fraud involved and the money was not going to be spent on what it is intended for. But overall, I felt that it was a good hearing and there will be a follow-up discussion. If the legislation does pass in the Senate, it is likely that the Energy and Commerce markup would be the final bill. Hopefully by September 11th we will have some new legislation.

Discussion:

MGue: Do you feel secure that we have the votes in the House?

JM: Yes we have the votes. The only attack against the bill is how much it cost,

someone will have to come up with $11 billion dollars to pay for the legislation. Another problem is the settlement with Captive; there will be a lot of new lawsuits come September. We have requested that attorneys organize a seminar with the clinical centers to explain these issues to your staff because you should expect to be getting a lot of questions from patients. We have not heard from them yet, but we will follow-up again.

BL: In our clinic we discuss only what’s medically indicated. To start getting involved with the interpretation is a legal issue and not medical. The relationship in this regard is between the lawyer and their client.

MSdH: It will be the patients with the more serious conditions (Tier 4) that will be going through this process. Their attorney should have explained everything to them.

JM: Another issue that came up is there is no medical coverage in the settlement. They will totally be dependent on this program. The City agreed that for their employees, they will not try and reclaim what was paid through Workers’ Compensation and that the workers will continue to get medical care.

DOE Medical Screening Program/EEOICPA Program: Steve Markowitz & Jim Melius

SM: This medical screening program was created in 1993. There are 17 clinics that conduct the examinations through the national protocol. The Worker Health Protection Program has seen over 20 thousand people; these patients get screened every three years. Some disease has been found, but we do not make any diagnosis, if we find something the patient is then referred out. There were 66 cancers signaled out, most were early stage 1 or stage 2. 1%-2% of people who go through the program have a suspicious nodule. The DOE spends about $20 million a year on the entire national program. We have CT scans at 7 sites, which cost $3 million.

JM:

Earlier history:

This program came out of a lawsuit. The community sued first and they received a monitoring program. There was a settlement on a worker lawsuit in the Clinton administration. We approached this administration and the DOE. We got the medical program it authorized through Congress with annual appropriations. In 2000, there was a compensation program suggested, in the last days of the Clinton administration. This program was for people that were employed in the past, not current workers.

Overview:

This program included subtitle B which includes automatic compensation for people with three particular illnesses, including ongoing monitoring (the largest group being people with cancer). This money is under entitlement (available every year). Each person that gets compensated gets $150 thousand dollars and ongoing care for that cancer or people with a 50% chance or greater of having a cancer that is related to their DOE employment.

Subtitle E takes into account more than radiation and cancer, it bases the compensation on whether or not a person is disabled. Some people are being compensated who worked in 1940s.

ACTION ITEM: Steve Markowitz to provide a few key literature articles relating to the DOE Medical Screening Program/EEOICPA Program.

Announcements: The next meeting is on August 4th at FDNY