When I was diagnosed in 2016 with a condition that precedes the fatal diseases multiple myeloma and amyloidosis 100% of the time, it was like hearing “the other shoe drop.” For decades, as a Vietnam-era veteran, I had been informing my primary care doctors that I was at increased risk for Agent Orange diseases. That was because the herbicides we were all exposed to during the war were contaminated with a powerful carcinogen called dioxin. All of a sudden, I had a stealth, pre-malignant condition called monoclonal gammopathy of undetermined significance (MGUS) that significantly increases my risk of progressing to one or more of those terrible Agent Orange diseases.
Subsequently, I discovered research had been published in 2015 by investigators at the NIH, CDC, and other institutions that showed conclusively that my Agent Orange exposure had more than doubled the risk veterans like me would develop MGUS. It began to sink in that I was stuck with a disease that would require preventative health care, including life-long, periodic monitoring for progression to a then-current Agent Orange disease and monitoring for other health complications. Those complications are unpleasant to think about, too, and include increased susceptibility to infections (including COVID), heart damage, nerve damage, kidney damage, blood clots, bleeding, and vision loss.
At my VA doctors’ appointments, I noted that many Vietnam-era veterans would have trouble paying copayments for health care for a disease that is positively associated with their wartime toxic exposure, and I felt that the situation was unfair and shortsighted. It did not make sense to me for the VA to impose barriers that would prevent veterans from receiving the preventative health care that had been shown to improve health outcomes of patients with MGUS. So, in 2017, I filed a formal petition with the VA Secretary to add MGUS to the VA Agent Orange presumptive disease list in support of all such veterans, and I filed a claim asking the VA to waive copayments for health care for my non-disabling condition, MGUS. My petition also asked the VA to consider offering simple blood tests to Vietnam-era veterans to screen them for the asymptomatic disease that they might not know that they have. Senator Tester’s office was supportive of my efforts.
In 2018, Mayo Clinic researchers reported that people like me with the IgM subtype of MGUS have a one in six chance of progressing to a current Agent Orange disease over their lifetimes. I am a lucky guy, but I do not like those odds.
Meanwhile, my VA petition ended up in the hands of a supportive VA official who asked an independent scientific organization called the National Academies to review the 2015 research. In 2018, the National Academies’ Update 11 committee issued its report that concluded “findings strongly support an association between TCDD [a dioxin] exposure and MGUS.” In light of 2018 and earlier 2016 National Academies findings, Senator Tester led a group of senators who asked the OMB to stop blocking a decision by the VA Secretary to add MGUS and other Agent-Orange-exposure-related diseases to the Agent Orange presumptive disease list.
The Honoring Our PACT Act, championed by Senator Tester, adds those diseases to the list and identifies a number of other toxic-exposure situations and diseases experienced by members of our Armed Forces. It sets out a rational way for such exposure-related situations and diseases to be evaluated by the VA in the future. I encourage Montanans to thank him for his good work for veterans and to ask our other members of Congress to support it.