FEATURE
Congress stipulated that this review be conducted every two years for 10 years from the date of the first review ( 1994 ); the mandate was later extended for an additional 10 years . The tenth and final NAM review was released in March 2016 . 1 Consultant scientists from the VA and health experts review each new report ( the most recent came in at a hefty 1,115 pages ) and make final recommendations to the VA about expanding the list of presumptive diseases . The buck stops with the VA Secretary , who makes the final decision .
In the latest round , the VA missed its expected August 2016 deadline for final recommendations . Now , the job of deciding whether thousands more American Veterans of the Vietnam War will quality for health care and disability pay rests on President Trump ’ s new VA Secretary , David Shulkin , MD , an internist and previous Under Secretary of VA for Health in the Obama administration .
As of press time , Secretary Shulkin had not yet decided which new conditions to include on the presumptive list , but he will be choosing from the following : hypertension , bladder cancer , hypothyroidism , and conditions with Parkinson ’ s-like symptoms .
Although NAM had supported the link between Agent Orange and birth defects in the children of Vietnam War veterans , more recent reviews have backpedaled , stating that there is “ inadequate and insufficient ” evidence supporting this association . Whether spina bifida will be “ de-listed ” remains to be seen .
Agent Orange , or Aging and Lifestyle ?
The latest NAM report , the 10th report mandated by the Agent Orange Act , may also be the last . It is unclear how new conditions will be added to the VA list
FIGURE Presumptive Diseases Associated With Agent Orange Exposure
• Amyloid light-chain amyloidosis
• Chronic B-cell leukemias
• Chloracne ( or similar acneiform disease )
• Diabetes mellitus type 2
• Hodgkin disease
• Ischemic heart disease
• Multiple myeloma
• Non-Hodgkin lymphoma
• Parkinson ’ s disease in the future and , in September 2015 , Congress quietly allowed the expiration of a provision of the Agent Orange Act that governed the way the VA Secretary determines whether new conditions are deemed presumptive . 2 In the 2016 report , the NAM committee made several suggestions for further studies to be carried out by the VA , including studies of paternal transmission of adverse effects to offspring . They also convened an ad hoc committee in March to further study the issue .
Further complicating the matter of VA coverage are the difficulties in discerning between diseases directly related to Agent Orange exposure and those that are likely to develop as people age . “ The list of diseases deemed to be associated with Agent Orange includes conditions like type 2 diabetes and ischemic heart disease , which are overwhelmingly not caused by Agent Orange ,” said Dr . Steensma , who is also senior physician at the Dana-Farber Cancer Institute , where he is leading a study examining the connection between Agent Orange exposure and MDS in Vietnam War veterans .
“ Prostate cancer , which is also fairly new to the list , is almost universal as men age , regardless of whether they served in Vietnam .”
Indeed , former VA Secretary Anthony J . Principi , JD , who served under President George W . Bush from January 2001 to January 2005 , has repeatedly called for the VA to do a “ clear re-think ” about its mission and how it determines eligibility for compensation .
“ It ’ s time to modernize the VA ’ s antiquated disability compensation system – to develop a new framework that promotes wellness and compensates those whose quality of life and economic well-being have been sacrificed for our sake ,” he wrote in a commentary about “ fixing the VA
• Peripheral neuropathy , early onset * Under VA ’ s rating regulations , must be at least 10 percent disabling within one year of herbicide exposure .
• Porphyria cutanea tarda * Under VA ’ s rating regulations , must be at least 10 percent disabling within one year of exposure to herbicides .
• Prostate cancer
• Respiratory cancers ( including lung cancer )
• Soft tissue sarcomas ( other than osteosarcoma , chondrosarcoma , Kaposi ’ s sarcoma , or mesothelioma )
Source : U . S . Department of Veterans Affairs , “ Veterans ’ Diseases Associated with Agent Orange .” Accessed March 27 , 2017 , from www . publichealth . va . gov / exposures / agentorange / conditions / index . asp . mess ” in the Wall Street Journal . 3 “ Today , the country actually compensates a significant number of veterans for the expected and ordinary effects of aging based on presumptions . For example , while we must compensate veterans for diseases linked to exposure to environmental hazards on the battlefield , we should do so only when those decisions are based on sound scientific and medical evidence that the diseases are caused by such exposures .”
He also noted that 80 percent of the more than 1 million new insurance claims filed annually with the VA are filed by veterans whose service time predates September 11 , 2001 . Thirty-seven percent of those are filed by Vietnam War veterans , which is nearly double the number filed by recently discharged veterans .
Missing Myelodysplastic Syndromes
Veterans seeking VA benefits who fall outside the current VA list of confirmed diseases and exposure locations must make a case for a concrete connection between their conditions and herbicide exposure . This case-by-case process is not always successful , said Dr . Steensma . He estimates that only about half of veterans who go before a judge are awarded disability compensation .
“ Obviously , politics and financial considerations affect the definition of a ‘ presumptive disease ,’” he said , adding that determining which conditions make the list can seem almost arbitrary . For example , some conditions deemed by the NAM authors to have “ limited or suggestive evidence ” of a link to herbicide exposure are added to the presumptive list ( such as ischemic heart disease ), whereas others with the same NAM designation ( such as hypertension ) are not .
One condition that has not made the cut , but that Dr . Steensma would like to see added , is myelodysplastic syndromes ( MDS ).
“ Tens of thousands of veterans who served in the Vietnam conflict were exposed to a toxic mix of chemicals that include known carcinogens that can injure bone marrow cells or cause DNA mutations ,” said Dr . Steensma . “ We have recently learned that to develop MDS , it takes multiple DNA mutations acquired over time , and so remote exposures may contribute to specific mutations in MDS in this patient population .”
With funding from the Aplastic Anemia and MDS International Foundation , Dr . Steensma launched the Agent Orange MDS-Veterans Study at the Dana-Farber Cancer Institute in November 2016 . Researchers are hoping to recruit at least 100 Vietnam War veterans who qualify as presumptively exposed to Agent Orange and will compare their DNA samples with those from a control group of agematched patients who did not serve in Southeast Asia .
“ Many of the veterans who served in Vietnam and are now getting MDS or other diseases of aging are keen to know if their conditions might be linked to Agent Orange and its contaminants ,” he said . “ We will never be able to prove causality definitively , but we are looking for a particular genetic signature in the veterans ’ samples that we might also see in cases of a particular type of MDS that develops from DNA damage – say , from exposure to radiation or chemotherapy ,” Dr . Steensma explained . “ We want to see if these veterans have a pattern consistent with MDS that results from DNA damage after exposure to these environmental elements , or if they show a genetic pattern consistent with cases of MDS that come out of the blue , so to speak .”
One frustration for Dr . Steensma is that MDS is often misunderstood . Some may think it is “ just an anemia ” – including some of the judges who are tasked with determining whether veterans have just cause for disability compensation . And it is also not “ non-malignant ,” as the most recent NAM report labels it . “ MDS has been classified as a malignancy by the World Health Organization for about 20 years ,” he noted .
Veterans who develop MDS , “ which is probably much more likely to be Agent Orange-related than diabetes , have to go the long way to get benefits ,” Dr . Steensma said . If MDS were added to the coverage list , patients would be able to claim 100 percent disability . The potential disability payment could be as high as $ 35,000 per year so , understandably , the people who hold the purse strings are hesitant to expand the list . That other conditions for which there is far less evidence are included on the list “ just boggles the mind ,” he said .
The Politics of Exposure Locations
Like the list of presumptive diseases , a definitive list of exposure locations is also a moving target . There have been confirmed and unconfirmed reports of Agent Orange ’ s use beyond Malaysia , Vietnam , and Korea , and it was most likely used in several countries for development and agricultural purposes .
The Department of Defense denies Agent Orange was ever used outside Vietnam , military bases in Thailand , and the Korean demilitarized zone – meaning that veterans like Master Sergeant Leroy Foster , who claims to have routinely sprayed Agent Orange to control vegetation around Andersen Air Force Base in Guam during the Vietnam War , and to have multiple diseases as a result of this exposure , is ineligible for VA benefits for his ailments .
On February 1 , 2017 , Representative Dennis Ross ( R-FL ) introduced the FOSTER Act , ( Fighting for Orange- Stricken Territories in the Eastern Region ), a reference to Master
ASHClinicalNews . org ASH Clinical News
49