WTC Medical Monitoring and Treatment Program
Full Steering Committee Meeting
FDNY
Wednesday, August 4, 2010
Chair: Jim Melius, DrPH, MD, Laborers (JM)
Attendees:
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)
Matthew Cassidy, MSSM CC (MCy)
Dori Reissman, MD, MPH NIOSH (DR)
Scottie Hill, DCC (SC)
Carol Perret, UMDNJ (CP)
Melodie Guerrera, LIOEHC (MGue)
Lin Luo, Bellevue/NYU (LLu)
Phil Mouren, FDNY (PM)
Micki Siegel de Hernandez, CWA (MSdH)
Tamara Smith, Environmental Health Center (TS)
Lee Clarke, DC-37 (LC)
Julia Nicolaou, MSSM CC (JN)
Spencer Carroll, FDNY (SC)
Lauri Boni, CBNS (LB)
Terry Miles, Environmental Health Center (TM)
Chris McGrath (PBA) CMC
Bill Romaka, UFA (BR)
Frank Tramontano (PBA) FT
Fatih Ozbay, MD MSSM CC (FO)
Notetakers: Donyetta Conrod, Annie Lok, Dana Schinestuhl
Welcome; Approval of minutes
Approved unanimously
Report on recently deceased WTC Responders: Bill Romaka
(WAITING FOR NAME VERIFICATION FROM BR)
CC/DCC reports
Long Island: Melodie Guerrera
Wait-time: We are still able to schedule monitoring exams within a week and treatment exams can be scheduled on the same day as necessary. However, we typically fill most of the slots a month in advance for monitoring exams.
Examinations: In June, we performed 289 monitoring exams of which 72 were V1, 49 V2, 77 V3, 64 V4 and 27 V5. The month of July was a bit slower, we performed 209 monitoring exams. 2,181 patients received physical health treatment over the past 12 months, 784 received mental health treatment.
End of year summary: Since it is the end of the year, we thought we would provide some detail of our activity over the past year. Preliminary data indicated that we performed 2,495 monitoring exams of which approximately 19% were V1, 24% V2, 30% V3, 18% V4 and 7% V5. We have referred 1,214 into treatment. Since the inception of this program, we have performed 10,073 monitoring exams and our cohort now stands at 5,665.
Deceased Patients: We are aware of 34 patients in our clinic that have passed away. 10 died of causes unknown to us, 4 died of heart attacks, 12 died of cancer, including lung, spinal, larynx, brain, leukemia, and lymphoma. 3 patients died of lung diseases, 3 of car accidents and 1 of a suicide.
Announcements: Outside of this program, we have been involved with the 911 Oral History Pilot Program. We plan to move forward in a larger way and expect to present a proposal to the PPC within the next few weeks. Additionally, we are working to identify appropriate grants and plan to submit applications soon. With regard to that, we will be forwarding a written overview to interested parties to see if letters of support can be considered. We are very excited about how well received the pilot has been and feel it is a tremendous compliment to our medical program. The purpose of our project is to preserve the personal accounts of WTC responders for the American public and future generations in an online archive. 911 by 2011: An Oral of WTC Responders will culminate in a virtual museum designed to educate a broad audience on the implications of the September 11, 2001 attacks on the thousands of Americans who spent time doing rescue, recovery and clean-up. At this time, we envision this virtual museum consisting of the following: an archive of video vignettes, links to actual full-length interviews, a photo album with images of the WTC site and WTC memorabilia, a webinar, and discussion forums. Additionally, we are developing age specific educational curriculum and are exploring conducting interviews both on site and at other appropriate sites and perhaps online interviews using Skype. Using volunteers, we have conducted over 40 interviews; some are semi-structured and captured with both audio and video. Interviews typically last 45 minutes to 1 hour 30 minutes. Website development is underway and should be up and running within a few weeks. Additionally, we have a brochure in the works and have completed promotional video. If anyone wants additional information please let me know. And finally, the plans for the picnic are moving forward—it is still planned for August 28th.
Discussion:
DP: How does this differ from what the National 9/11 Memorial Museum is doing?
MG: I’m not sure. But what we’re doing is in-depth interviews of responders about what they did, what motivated them.
JM: My recollection is the museum is doing the same. You should check.
SM: Will the videos be edited?
MG: There will be edited vignettes. We are also looking for ways to make the full interviews available. But there might be material that would be disturbing to people, so we have to figure out how to do it in a respectful way.
Queens: Lauri Boni
Wait-time: We have a 1 week wait-time.
Examinations: In June, we performed 63 monitoring exams of which 10 were V1 and 53 were periodic. Out of 110 scheduled exams, we had 17 no-shows and 31 cancellations. We performed 88 monitoring exams in July. There were 6 patients referred into physical health and 4 into mental health treatment. In addition, we saw 8 initial and 36 follow-up physical health exams and 12 initial and 6 follow-up social work/benefits visits.
Capacity: We still have the capacity to monitor 120 patients per month, in addition to meeting our current level of treatment activity.
End of the year summary: We received our quarterly reports and as of June 30, there were 2,624 patients registered with the Queens clinical center. We performed 1,086 monitoring exams, 241 baselines and 845 periodic (41%). We referred 154 patients into treatment (14%). We have 336 patients in our treatment program: 294 have physical health conditions and 135 have mental health conditions (14% of our cohort in treatment).
Deceased Patients: To date, we have identified 20 patients in our clinic who have passed away. 4 died from cancer, 1 car accident, 1 probable heart attack and 14 unknown causes.
New Developments: We have signed the service agreement with Innoviant Pharmacy and will begin to transition our patients this month.
Challenges: The two candidates that were being considered for the position of Social Worker Director did not accept the position. We are beginning the process of recruitment again. Space continues to be an issue; we have been unable to negotiate a lease for additional space at this time. We also have experienced an excessive number of cancellations this month.
Bellevue: Lin Luo
Wait-time: We have a 2 week wait-time for all exam types in monitoring, a 1 week wait-time for physical health and a 2 week wait-time for a mental health visit.
Examinations: In July, we performed 65 monitoring exams, 45 physical health exams and had 70 mental health visits.
Challenges: Space continues to be an issue.
FDNY: Dave Prezant & Kerry Kelly
CC Report: Monitoring Exams (June)
V2 Baseline: 16
V2 Follow-up: 17
V3: 98
V4: 368
V5: 403
Total: 902
Treatment Exams: (June)
New Patients: 196
Unique Patients: 848
Current in Physical Health: 4,300
Mental Health (June)
New Patients: 87
Unique Patients: 546
Current in Mental Health: 1,794
DCC Report: We have seen 10,002 monitoring exams in last fiscal year, including those seen in Florida. We are currently setting up treatment for the 70 patients that we examined in Florida. We also gave that group a patient survey and it indicates they were satisfied with their experience. We’ve worked for years on modifying electronic medical records to include blood and urine values, because we use an outside vendor for that lab work. We were getting paper records, but by last year, we had electronic lab records, but we found it wasn’t used for physicians and nurses. What we can do with e-records is look at trends. We plan to implement a system to look at trends for clinical and quality assurance reasons, and for lab results to be sent to members automatically. Another interesting thing about this project is that we thought we could computerize everything, but that wasn’t the case.
Discussion:
MGue: Regarding out of state treatment, how do you document that the conditions are WTC-related?
DP: We do it the same as we do it here; computerized medical records, or faxed. Every condition they suggest for treatment has to be authorized by us.
SH: When a retired FDNY member calls us, I speak with each of them to make sure they know what all of their options are. Should I advertise the Florida program?
DP: I will give you a script. Not only offering the service, but in a culturally distinct manner. We can give them exams whenever they want, but we prefer to give them exams on weeks when we have the entire clinic, so that patients can see other retirees.
JM: You said the compliance rate is 75% for V4. How much of those who are not coming in are retired or not living in the area?
DP: Of those who came in for V4, we capture 74% of retirees.
BR: Do you have the ability to compare PSA numbers?
DP: Yes, but the only ones we can capture now are from retirees. For active members, the vendor can’t do it, but we plan to switch vendors so we can get those numbers. For the Florida project, the only paper records are for PSAs. We’re starting a registry for rheumatologic diseases. We’ve worked for years on modifying electronic medical records to include blood and urine values, because we use an outside vendor for that lab work. We’re getting paper records, but by last year, we had electronic lab records. We found it wasn’t being used for physicians and nurses. What we can do with e-records is look at trends. We plan to implement a system to look at trends for clinical and quality assurance reasons, and for lab results to be sent to members automatically.
MSSM: Laura Crowley
The clinical core continues to have its bi-weekly meetings. Usha has been working with the data management team on both the EAQ and IAMQs. In addition, we have revised the three protocols: See attached.
This protocol describes the kinds of behavioral problems and responses to them. The area of contention is whether to transfer or discharge.
Discussion:
MGue: How do you reach a decision to terminate?
LCr: That’s the issue we need to figure out. As it reads now in the document, the clinical center PI would discuss the matter with NIOSH.
JM: There should be a description of criteria for termination.
LCr: Beyond physically disruptive or threatening behavior, I haven’t heard of other kinds of behavior that would warrant it.
MGue: Is this a termination from the clinical center or the entire program?
LC: The program-- this is my understanding.
LC: There’s nothing written here about discussing the patient’s behavior with the actual patient. And when decisions are made, there has to be a process of appeal; people have a right to be heard. There should also be documentation of the incident; standard documentation across the board. This will protect all parties—program, clinic, patient. And when it says “find other medical treatment for patient” who will be doing this? In addition, who will oversee the appeals process?
LCr: It could be a representative from the DCC, NIOSH, or Steering Committee.
JM: I would think it stays internal at this time. I don’t quite understand the transfer part of it. If the patient is angry at a particular staff member, that makes sense. But there should be an evaluation of the incident and patient to see whether they would be okay in another setting. I assume the institutions have protocols for dealing with disruptive people.
LCr: We’ve had our mental health staff evaluate a patient, and sometimes it was decided that the patient required treatment beyond our program. In those cases a transfer needed to happen.
JM: That makes sense, but we need to delineate the process more clearly.
FO: Perhaps there’s a distinction between administrative and clinical transfers.
SM: We’ve talked about this process for a long time. We need to decide whether to have an appeals process, and if we decide yes, we need to decide what the process is. We need to do it here.
JM: In this context, I think we need more description of evaluation before talking about appeals process. But in general, I agree with you that we need to set up an appeals process.
MSdH: I agree we need an appeals process. Question: if a patient is discharged, I don’t think it’s appropriate to say they will never be eligible for the program again. There needs to be a process by which they can re-enter the program, if appropriate.
DP: I want to repeat the suggestion of reflecting the practices of your institution. Maybe they have a crisis intervention team. In terms of the appeals process, I think we are ignoring the rights of the health care providers. If there is a unanimous opinion among the providers that there shouldn’t be an appeal, then there shouldn’t be one. The health care workers have rights too.
CP: I echo Dave’s comment about going to your institution. I don’t think anything should supersede the institution’s decision. We’d be taking on liability.
LCr: The transfer between clinics has worked.
MCy: The institutions have legal standing, but this program doesn’t.
LCr: Some of the language in this document is from Sinai’s legal department.
MGue: Should clinics make it clear what behaviors are not tolerated?
RF: Make patients’ rights and responsibilities clear to them at annual exams. NIOSH is not a decision-making body. You can get input from us, but when it comes down to it, it should come down to the institutions.
MSdH: As a worker representative, I agree that your workers need be protected, and that’s part of your violence prevention program. For these situations, there should be an internal incident review. This document presumes that it’s completely the patient’s problem. There may be something about the program that is causing this behavior. You may start to see patterns.
JM: Please send written comments to Laura.
This protocol describes the process by which we currently verify responder’s status. We have added a step to contact the institution’s legal department.
Discussion:
DP: I don’t see this as providing any answers. I think we should do what everyone else does. If someone comes to a hospital, says they have insurance but they don’t, then you do what your hospital’s policies say. We can’t have people who misrepresent themselves continue to get services from us.
MGue: I agree that we shouldn’t provide services to them, but I don’t agree that we should do whatever our institution says to do. The eligibility here has always been determined by the DCC, and we should continue to go to the DCC.
DP: But hospitals give you malpractice coverage. You can also send patients with serious health problems to your hospital.
IU: When we’ve seen a case of misrepresentation, it was brought to our attention by law enforcement, so that was a no-brainer. But in other cases, when we suspect someone, what should we do? I had a patient who said he was a volunteer, went to the FealGood foundation, and they investigated and found he wasn’t even there. I did not want to stop treating him, and said I will continue until my Steering Committee tells me to stop.
SM: I don’t think this document needs to say anything about going to our institutions. It might say that we need to go to the DCC, or to NIOSH.
MSdH: I think this document should include discussion of other health care options, such as the Survivor Program.
JM: We worked on a process some years ago, and added step #2 and #3. And if there are further questions about a person’s status, further steps can be taken but those can’t be specified. But what we need to determine is what to do when the person is actually ineligible.
TS: Is the affidavit a notarized document or just a form?
JM: Just a form.
LC: This document should state what the eligibility requirements are. Also, if someone had WC benefits for WTC work, that should be enough proof, no?
RF: There could be inadvertent misrepresentation. There should be an arbitration process.
SH: I review all the eligibility cases. There are two issues: fraud and discrepancies in information. The second is most common.
JM: This group decided at a previous meeting that documentation could be requested to clear up discrepancies in eligibility information when that is an issue.
JM: I will send notes to Laura. Everyone else can do the same
This protocol is for an instance where a patient switches clinics, and the new doctor has a different clinical opinion about whether something is WTC-related. Three doctors, preferably occupational medical doctors, review the medical records and talk to treating doctors.
Discussion:
MSdH: I know doctors have different opinions all the time. But if a patient has a covered condition, and they’ve been treated for it, I don’t see why we should take the treatment away.
MGue: We have a case where a patient who recently transferred to our clinic has been receiving treatment that none of the doctors deems as appropriate.
MSdH: But that is different from a doctor saying something is not WTC-related.
KK: It’s different when you’re talking about a different treatment modality.
SM: Doctors are going to disagree on attribution. And when it comes to a C-4 form, and deposition in court, the doctor will have to answer honestly. We have to address this.
DP: In the case of Obstructive Sleep Apnea, we only treat it as a secondary condition. Different clinics interpret this differently, and if a patient switches clinics, they might be subject to different treatment.
JM: We’ll have to address this; it will become more and more of an issue over time.
MCy: The scenario addressed by this protocol may be kind of rare.
LB: This scenario has happened, between Sinai and Queens.
JM: Please give comments to Laura.
This is a follow-up to a prior discussion of this topic. Many questions were raised, only some can be answered due to data limitations. People continue to report the same symptoms.
Discussion:
JM: In the early years, people were coming in for monitoring. Now, they’re coming in for treatment. Ethnicity data: many unknown.
DP: What I’m interested in is whether people with long-term PTSD are now showing more depression, or if they’re converting to depression.
FO: Comorbidity between the two indicates more disability and poorer prognosis for both diagnoses.
RF: This data goes through Sept 09. Is there any reason to think there is anything surprising or different in the data since then?
IU: Do you have data on occupations?
LC: We’ve begun to look at that; it is complicated to get the data.
IU: It could show significant findings.
NIOSH Update: Roy Fleming
There was a Senate hearing and questions came up about our spending habits. We need to enhance our reporting requirements; this will happen over the next year. There were also questions about different group of patients, including the children from the Survivor Program. This program continues to be under great scrutiny.
Discussion:
MSdH: Where do things stand with the National Program?
RF: Today at 4pm is the deadline for proposals; there will be a review in late August and we will award by the end of September. There will be a one-year base contract with options to continue.
Survivor Program Update: Terry Miles
Wait times vary from 1 week in Elmhurst and 4 weeks in Bellevue. Our no-show rate is around 20% with the lowest being at Bellevue. We have had patients pass away in our program and I will have someone work on that data. We are working with the DOH mental health program looking at claim data to see how many people are actually getting served. We found 600 patients need to be transferred from that program into ours. We are doing this month by month. In terms of pediatrics we have signed a contract with CBO to do outreach to younger patients. We will be running our MTA ads again in the fall.
Cancer Update: Dave Prezant
We’ve been following major recommendations from the expert panel. We will continue these meetings to discuss the exposure matrix for responders and another one for all groups looking at non-responders. This does not preclude any one group from using their own matrix. In our meetings we’re trying to be as liberal as possible and include as many questions as possible. Hopefully we will start writing in a few months. Cancer definition: internal comparisons will be much more useful than external ones. They better take into account healthy worker effects. Also external comparisons are using tumor registries, not cancer registries—there is none. Someone with three tumor biopsies is counted three times in a tumor registry. Our first meeting on this is next week. Labor and community representatives are on both panels. The WTC Registry and FDNY have the most complete information in matching cancer cases with registries. Sinai and Bellevue are catching up.
Discussion:
BR: Will our rates be compared to tumor registries?
DP: We have to adjust for that. And we need to have rules that are agreed upon by cancer experts to translate tumor information into cancer information. Another thing that’s important is when the cancer is diagnosed. Do we count it when the tumor is registered, or when the cancer is actually diagnosed?
FT: What is the difference?
DP: It’s a difference of how information will be interpreted. We want to use a date that doesn’t move our rates one way or another. We want cancer experts to decide that.
FT: And you don’t have all your cancer data?
DP: No, we need help from unions in getting their members.
FT: When will the data be released?
DP: I can only speak for the FDNY. We did have final data through the end of 2005, and now we can update to 2006, which is the last year the NY State had the tumor registry. We will apply whatever rules come from the meetings, and hope to release data sometime in the end of this year. But we will be behind due to a lag in the tumor registry. I think the Registry is maybe a year behind us.
LCr: We’re actually pursuing another match other than cancer registry to make it more robust. And then we will integrate that into our database.
FT: So we have nine years of data and nothing to report. I think the data should be released at this point.
DP: We released WTC cough data more quickly than the other cohorts, but they soon followed. We knew those symptoms were very prevalent in our cohort. It was very clear that it was a huge increase. With cancer, it will make a big difference if we miss two or three cases. We made a big effort tracking pancreatic cancer and multiple Myeloma because we saw reports of them. But we were surprised by what we found.
FT: What about the multiple Myeloma report? Needed to confirm a number of cases?
SM: What has happened with that?
LCr: Samara Solan is still working on that.
FT: If that report stated those numbers, why is there not a link made?
DP: There was no statistical analysis in that paper on whether there is elevated multiple Myeloma in this population.
SM: Under age 45, there appeared to be more than expected, but because there were only 4 in that group, it wasn’t sufficient.
DP: Confirmation process can be lengthy and complicated.
FT: Will someone update us on the multiple Myeloma cases.
ACTION ITEM: Consortium DCC will provide an update to the SC on the 8 multiple myeloma cases previously described in the multiple myeloma paper as 'unconfirmed', as per request of Frank Tramontano (PBA).
Uniformed Services Disability Pension Meeting Report: Scottie Hill
I gave my full report last month on the June 16 LODI training. I have received feedback from participants that they could have used this type of training years ago. I also looked back through the Benefits Assistance Survey, and talked to social workers during the monthly call, and a few topics came up over and over. There is an interest in training for NYS Workers’ Compensation and Federal Workers’ Compensation. I think clinicians across the board need this information, as well as, doctors and social workers. Other topics that came up were training on end-of-life and bereavement issues, dealing with chronic illness, especially cancer. We discussed how the program can better respond to spouses or relatives of deceased responders and issues related to PTSD, drug abuse/addiction.
Discussion
JM: Were you ever able to identify a Federal Workers’ Compensation representative?
SH: Years ago, Diane Stein and I made contact with a lawyer in Massachusetts. But I have not had contact with her since then.
TS: I may know one.
Legislative Update: Jim Melius
Anthony Weiner has an op-ed today in the NY Times about the legislation. Basically, the NY delegation’s approach to the bill fell apart. Instead of a full vote on legislation, a decision was made to do a suspension vote which requires a 2/3 majority. It is unclear whether Republicans really opposed the bill, but they were certainly opposed to how the democrats proposed to pay for it—closing foreign corporation tax loophole. We got more than 60%, but not 2/3, and the odds are slim that we will. Right now, we are pressing the Speaker’s office for a real vote as soon as they come back in September. The likelihood is fairly good. The downside to a real vote is that the Republicans would be able to add amendments that may not have anything to do with the bill to poison it. Or it could directly relate to the bill, such as banning illegal immigrants from the program. There is talk that the democrats are reluctant to go on record on that issue right before the election. The problem with waiting after November (lame-duck session) is that it would not leave enough time for Senate action. We’re pushing for a vote in September, around the anniversary.
Discussion:
FT: The Senate depends on the House bill?
JM: Senator Gillibrand is working on it, but it will have to be forced from the House side.
DP: My concern on this issue is that the House vote has to occur before the Senate’s vote. That’s a reality. But all the maneuvering is about protecting certain aspects of the bill that will not fly in the Senate. If this bills comes out of the House without a ban on illegal immigrants, or a cap of only 25,000 new participants, or people can get a settlement and apply for VCF, Senators have already told us they would vote no. Shouldn’t we go for the big picture?
JM: We don’t know how they will vote until there is a bill to vote on. There have been concessions and there might be more.
BR: Where is the white house on this?
JM: They have been silent; neither for nor against it.
MGue: If the bill doesn’t pass this year, how much funding do we have at this point?
JM: There is money in appropriations for the next fiscal year, meandering its way through. That bill is also caught in a partisan fight. But there should be enough for the following fiscal year.
RF: Presumably that will come through before June 2011.
JM: The Senate can but won’t put forth its own bill at this point. The best advocacy for this is the large number of sick people. We need to focus on that. What’s amazing in the debates is how little focus there is on the actual content of the bill.
WTC-Related Medical Conditions: Iris Udasin and Steve Markowitz
SM: There seems to be a variation on how patients are being treated from clinic to clinic. There also seems to be a variation at the clinics on how clinicians are diagnosing conditions and relating those conditions to 9/11. There are also questions being raised on diagnostic workups, treatments, and why some clinical centers are doing more CT scans than others. We all know that variations in treatment are fairly common in medical practice, but the attribution question really needs to be addressed.
IU: One issue is treatment; the second issue is filling out C-4s and other forms for patient benefits. At our clinic, we’re comfortable with saying that occupational asthma can be worsened by an exposure, so we find most cases WTC-related. One of my treatment doctors and I wrote something about Obstructive Sleep Apnea. So clinics might consider doing something condition by condition. Asthma may be the clearest. Any third group of cases, I’m not going to comment on WTC-relatedness, but I’ll make sure you get good care.
Discussion:
MSdH: It is very important to talk about treatment modalities. Attribution is extremely important. I don’t think that we are doing a good enough job of coming to some sort of a consistent way of looking at the covered conditions. Some doctors in the program have reputations for being conservative in attribution, some have the opposite. Patients can go to a different doctor and get a different response. As a program we need to deal with this.
LC: I agree with Micki. Given the hurdles that the responders have to negotiate to get the entitlements outside of this program, attribution is very important. In a clinical setting where doctors are reluctant to make attribution, and there’s no basis for it, that’s a problem.
MGue: That is an issue. Doctors need training in these systems, and how to maintain medical integrity and say something for the patient’s case. We need to provide this training.
CMC: When I talk to my members who have disability cases, I tell them to have a conversation with the doctor, and explain to that doctor what police work is. Ask the doctor to render an opinion on your disability, or attribution to WTC. And a reminder, please tell your patients to file the notice of participation by September 11, 2011.
DP: No program is perfect. But I think there needs to be training, and updates as medical information changes and rules change. What we do at the FDNY is we meet every three months with treatment doctors, it’s part of their work. They hear the latest updates, given articles, we discuss them. We update them on the typical treatment protocols, since they are not ENT, GI specialists. We have an internal hierarchy. Any cases doctors are unsure about are moved up the chain, to me, Dr. Kelly, and other doctors in our department. In the clinical centers perhaps the PI should make some of those decisions.
SM: There are two fundamental problems that guarantee variability. The covered conditions say that the doctor has to determine that WTC exposures are related to the illness. That’s very vague and lends itself to interpretation. This is more an issue now because its many years after 9/11, and we have to decide whether new onset sinusitis is related to exposure 9 years ago. We don’t have good precedent or good science to help us make the decision.
JM: If you look at the legislation, we have to make the decisions, but NIOSH has to approve them. How do we operationalize that? What do you consider when you try to attribute? We should come up with this for NIOSH. In addition to attribution, NIOSH or whoever funds this program will decide whether treatment is medically necessary.
LC: Are the clinics aware of these nuances in the legislation?
JM: I don’t know.
DP: There’s a huge body of evidence saying occupational asthma does not occur 10 years after exposure. Now, if as experts we want to say that WTC exposures are different, we need the data to show that. One way around that is going through records. In any event, we should produce a document explaining attribution. We have the GI meeting happening soon. The next thing we can add is occupational asthma and occupational sinusitis. Have experts come in and talk about whether this is possible.
CP: The feedback we get from responders lately is not that different doctors have differing attribution opinions. They are calling and saying their lawyers told them they need a diagnosis of asthma, can you send me to a doctor who would give me that diagnosis?
MSdH: This has been happening for a long time. I know of cases of dispute that are not all new. When we did the Benefits Assistance Survey, this was one of the common comments made by staff, by doctors, wanting guidance on determining WTC-relatedness.
IU: I can circulate something I’ve worked on for Sleep Apnea. About asthma—if you’re coming in now, and you’re a new asthma case, and even if I went through the records and see they’ve been treated, I think that’s okay. I think we should expand on our thoughts and share them.
MGue: We do have some training for doctors. I want to suggest a survey of doctors to say anonymously how they’ve made attribution determinations.
SM: I think we need to have discussion among doctors about this.
MSdH: How does that happen?
SM: Why don’t we discuss that during the consortium meeting after this?
JM: There should be training for new doctors in the program, mechanism for doctors to consult with each other, to review difficult cases. Do we want to define the major components of attribution to WTC? If the clinics each did one condition, it wouldn’t be too hard. What might be more difficult is attributing the secondary conditions. In terms of outside credibility, that question comes up all the time in Washington. But I think attribution is generally consistent here.
MGue: Listening to the discussion among doctors here, it seems they each come to the decision on their own.
JM: If this legislation passes, someone at NIOSH will have to say, “Your attribution is correct.” And the same for VCF. They might want to look at how the diagnoses were made. And the more new people come into the program, the more questions we might have to answer.
RF: Once the legislation passes, this system has to be in place in a matter of months, so it’s good to start thinking about it now.
JM: Yes, if the bill passes, you won’t be able to treat unless NIOSH says you can.
MSdH: Do individual clinics have a sense of variability of doctors within that clinic? A sense of the conditions where there are greatest difference of opinion? And some doctors in the program are not occupational medical doctors, so even the work-related part is in question.
DP: The work-relatedness of a pulmonary condition is different from that of a musculoskeletal condition. It has to be evaluated for each job.
JM: Perhaps the PIs can continue to talk about this at the second meeting today. We will have to confront this sooner or later.
Announcements: The next meeting will take place on September 1, 2010 at DC-37
Adjourn