As you know, in March 2017, as a Vietnam Veteran who had been diagnosed with the pre-malignant condition, MGUS (monoclonal gammopathy of undetermined significance), I filed a petition with the Secretary of Veterans Affairs. The petition asked that the VA provide copayment-exempt care for the condition to improve health outcomes of all herbicide-exposed Veterans diagnosed with the condition. The accepted standard of care after MGUS has been diagnosed is life-long follow-up monitoring to ensure that progression to a malignancy or another related condition is not occurring. The petition also asked the VA to consider offering screening for MGUS to Veterans who had been exposed to herbicides during their service.
The diseases to which MGUS may progress include the existing presumptive Agent Orange diseases multiple myeloma, non-Hodgkin lymphoma (which includes Waldenström macroglobulinemia and lymphoplasmacytic lymphoma), and AL amyloidosis. Research has shown that essentially all cases of the devastating Agent Orange diseases multiple myeloma and AL amyloidosis are preceded, often by years, by a MGUS diagnosis. The petition pointed to a research study on Vietnam Veterans published in 2015 that showed that the prevalence of MGUS is two-fold higher among Operation Ranch Hand Veterans (7.1%) than Veterans with similar duties in Southeast Asia during the same period who were not involved in herbicide spray operations (3.1%).
In November 2017, the Director of the Pre-9/11 Era Environmental Health Program (Peter.Rumm@va.gov) asked the committee of the National Academies of Sciences, Engineering, and Medicine preparing the 2018 Veterans and Agent Orange Update 11 to study MGUS as a potential Agent Orange presumptive disease. The lead author of the 2015 study, Dr. Ola Landgren, Chief of Memorial Sloan Kettering’s Myeloma Service, and I provided testimony to the Update 11 committee.
In November 2018, the Update 11 committee issued its report which concluded that “findings strongly support an association between TCDD exposure and MGUS.” Furthermore, a VA clinician, Dr. Nikhil Munshi of the Boston VA Healthcare System, had previously determined that MGUS may be related to exposure to dioxin (TCDD) during military service, as required by VHA DIRECTIVE 1601A.02(8) (a & b) for the VA to provide copayment-exempt care for the condition.
The conclusions of the Update 11 committee are currently being reviewed by the VA. The VA is also considering research having these findings: (1) overall survival in Veterans with multiple myeloma is significantly worse if they were previously exposed to Agent Orange, (2) patients with multiple myeloma, who had a prior diagnosis of MGUS, survive longer, (3) patients with a preexisting plasma cell dyscrasia diagnosis (such as MGUS) at the time of multiple myeloma diagnosis who then undergo high dose therapy have a better outcome than those presenting with no previous plasma cell dyscrasia diagnosis, (4) patients receiving “excellent” MGUS monitoring (about every 6 months) have a lower incidence of serious complications occurring before a multiple myeloma diagnosis, and (5) patients with MGUS follow-up preceding the diagnosis of a monoclonal gammopathy–associated malignancy (multiple myeloma, Waldenström macroglobulinemia, or lymphoplasmacytic lymphoma) experience fewer major complications and have longer survival than those not followed. Moreover, Dr. Landgren advises Vietnam Veterans to get simple blood tests to screen for MGUS, because research shows that early detection of MGUS results in better outcomes for those who develop multiple myeloma.
The VA is reviewing the Update 11 report from the National Academies through an extensive, formal process and will be giving recommendations to the Secretary. The VA anticipates that the Secretary’s determinations will be announced in Summer 2019.
I am asking for your support in this effort to improve the health outcomes of herbicide-exposed Veterans. I would appreciate any suggestions about how to accomplish this mission.
P.S. I would be happy to provide you with a copy of any of the documents referenced herein.