Ep 306 – Agent Orange: “I Have a Client Who . . .” Pathology Conversations with Ruth Werner

A woman with spina bifida sitting outside in a wheel chair.

A client’s parent is a veteran of the Vietnam War, and the client has been left with the aftermath of the genetic damage caused by one of the deadliest toxins known: TCDD dioxin. She has spina bifida, a well-recognized consequence of parental Agent Orange (AO) exposure, and a slew of other physical and emotional challenges.

What is Agent Orange, and how did this happen?

And is there any way our work can help?

Resources:

Pocket Pathology: https://www.abmp.com/abmp-pocket-pathology-app

Current list of “presumptive conditions” recognized by the VA as the consequences of direct Agent Orange exposure:

Administration, U.D. of V.A., Veterans Health (no date a) VA.gov | Veterans Affairs. Available at: https://www.publichealth.va.gov/exposures/agentorange/birth-defects/index.asp (Accessed: 29 November 2022).

Administration, U.D. of V.A., Veterans Health (no date c) VA.gov | Veterans Affairs. Available at: https://www.publichealth.va.gov/exposures/publications/agent-orange/agent-orange-2021/presumptions.asp (Accessed: 29 November 2022).

‘Agent Orange’ (2022) Wikipedia. Available at: https://en.wikipedia.org/w/index.php?title=Agent_Orange&oldid=1115064660 (Accessed: 29 November 2022).

Birth defects linked to Agent Orange (2022) Veterans Affairs. Available at: https://www.va.gov/disability/eligibility/special-claims/birth-defects/ (Accessed: 29 November 2022).

Dioxins and their effects on human health (no date). Available at: https://www.who.int/news-room/fact-sheets/detail/dioxins-and-their-effects-on-human-health (Accessed: 29 November 2022).

Editors, H. com (no date) Agent Orange, HISTORY. Available at: https://www.history.com/topics/vietnam-war/agent-orange-1 (Accessed: 29 November 2022).

Fresques, C.O., Hannah (no date) The Children of Agent Orange, ProPublica. Available at: https://www.propublica.org/article/the-children-of-agent-orange (Accessed: 29 November 2022).

Ornstein, C. (no date) Agent Orange Act Was Supposed to Help Vietnam Veterans — But Many Still Don’t Qualify, ProPublica. Available at: https://www.propublica.org/article/agent-orange-act-was-supposed-to-help-vietnam-veterans-but-many-still-dont- (Accessed: 29 November 2022).

Schmidt, C. (no date) Is Agent Orange Still Causing Birth Defects?, Scientific American. Available at: https://doi.org/10.1038/scientificamerican0616-70.

Veterans Exposed to Agent Orange: Legislative History, Litigation, and Current Issues (no date). Available at: https://www.everycrsreport.com/reports/R43790.html (Accessed: 29 November 2022).

What is Agent Orange? (no date) The Aspen Institute. Available at: https://www.aspeninstitute.org/programs/agent-orange-in-vietnam-program/what-is-agent-orange/ (Accessed: 29 November 2022).

Woods, N. (2020) Are Children or Grandchildren Eligible for Agent Orange Disability Benefits?, Woods and Woods, LLC, Veterans Disability Lawyer. Available at: https://www.woodslawyers.com/agent-orange-birth-defects-grandkids/ (Accessed: 29 November 2022).

Author Images: 
Ruth Werner, author of A Massage Therapist's Guide to Pathology.
Ruth Werner's logo, blue R and W interlinked.
Author Bio: 

Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote A Massage Therapist’s Guide to Pathology, now in its seventh edition, which is used in massage schools worldwide. Werner is also a long-time Massage & Bodywork columnist, most notably of the Pathology Perspectives column. Werner is also ABMP’s partner on Pocket Pathology, a web-based app and quick reference program that puts key information for nearly 200 common pathologies at your fingertips. Werner’s books are available at www.booksofdiscovery.com. And more information about her is available at www.ruthwerner.com.   

Full Transcript: 

0:00:01.2 Ruth Werner: Hey, "I Have A Client Who... " listeners. Did you know I have a growing library of NCB-approved one-hour online self-paced continuing education courses that you can do any time, anywhere? Well, now you know. Current classes include, What's Next: COVID-19 Updates From Massage Therapists, and, A Massage Therapist's Introduction to Pharmacology, Part I, and brand new, A Massage Therapist's Introduction to Pharmacology, Part II. Classes are $20 each, and they confer one-hour of continuing education credit. Wanna know more? Visit my website at ruthwerner.com and check it out. Be sure to sign up for my mailing list so you'll never miss a new class. 

 

[music] 

 

0:00:55.4 RW: Hi, and welcome to I Have A Client Who Pathology Conversations with Ruth Werner, the podcast where I will discuss your real life stories about clients with conditions that are perplexing or confusing. I'm Ruth Werner, author of A Massage Therapist's Guide to Pathology, and I have spent decades studying, writing about, and teaching about where massage therapy intersects with diseases and conditions that might limit our client's health. We almost always have something good to offer even with our most challenged clients, but we need to figure out a way to do that safely, effectively and within our scope of practice. And sometimes, as we have all learned, that is harder than it looks. 

 

0:01:42.3 RW: This week's episode is on a situation that I have heard about in the past but never encountered myself. It has to do with long-term damage related to Agent Orange, not just to the person who was exposed, but also to their children. And in that context, it is sometimes referred to as second-generation Agent Orange exposure. And spoiler alert, this is now being seen in the grandchildren of exposed people. It is the penalty that keeps on penalizing. I'm going to break from my usual pattern for this topic to provide a bit of background on Agent Orange or AO and similar substances, first. Then, I'll talk about what direct exposure can do, and we'll finish by looking at the effects of AO on the children and now the grandchildren of the people who were once exposed. Then, I will share today's I Have A Client Who story so we can hear it in appropriate context, and think about massage therapy for this person. At this point, I wanna invite you if this is likely to be upsetting to you, to skip this episode. 

 

0:02:53.8 RW: Most of the time, I feel like I can talk about pathologies with some sense of equipoise, because I find the human body so miraculous, and most of the time when things go wrong, we can figure out ways for them to get better or at least to improve. And to me, that is just an amazing thing that can be celebrated. But here is a situation that was human-made and avoidable, and that was made much worse by a lack of transparency and failure to take appropriate responsibility, and I must tell you these words are highly edited because my original phrasing involved a lot of swearing, and it impacted people who weren't even born when the exposures took place, and it continues to do so, and the whole thing makes me furious. 

 

0:03:42.1 RW: Furthermore, I'll let you know that I posted on my personal Facebook page that I was preparing some information on Agent Orange, mainly just to discharge some of my own big feelings about this. And I was inundated with people telling me stories about their loved ones and friends and neighbors who were victims, and I don't use that word lightly, victims of Agent Orange exposure. So clearly, this is an important topic with far-reaching implications, and a 15-minute podcast will not do it justice. Well, this one might go to 20 minutes, I still won't be thorough. But my job here is pretty limited, I wanna figure out some key decision points about how to make massage therapy as safe and effective as possible for people affected by AO exposure, either directly or through epigenetic changes that leave their mark on their descendants. 

 

0:04:37.0 RW: I'll do the best I can, and I might be able to cover a tiny sliver of information, but maybe I can help you if this is something close to you, to find some good resources to speak to your own questions. That said, one of the challenges about preparing this podcast has been finding sources of information that I feel are trustworthy. As I began, I found it was pretty much a choice between the documents produced by the Veterans Administration, and the VA's role in this has not been stellar, and the websites of attorneys whose job it is to try to win compensation for people exposed to AO. These are not exactly disinterested parties. 

 

0:05:19.8 RW: I have stuck with as neutral sources of information as I can find, and of course, you'll have my full bibliography in our show notes. 

 

0:05:31.4 RW: Right. Agent Orange or AO. The name, Agent Orange, refers to a color code for a variety of herbicides. We have also used Agent Pink, Green, Purple, White, and Blue, but Agent Orange was the strongest of them all. It was developed in the 1940s in the United States, for farm use, but it was also sprayed along the edges of railroads and under powerlines to manage plant growth in those areas. And then, in a strategy that began as Operation Hades and then changed to Operation Ranch Hand, Agent Orange was used by the United States military from 1961 to 1971 at super high concentrations like 20 times its original version, to defoliate jungles, and in this way, expose enemies and kill local crops. It is most associated with Vietnam, but it was also used in Cambodia and Laos. And it has been tracked to illnesses in people servicing aircraft in the Korean demilitarized zone and Air Force bases in Thailand. 

 

0:06:38.2 RW: Agent Orange wasn't the only defoliant the military used during this time, but it is the one most associated with health risks, and of course, the 20 million gallons of AO sprayed over Southeast Asia didn't just affect enemy combatants; crops, water sources and farmland were all contaminated. This impacted civilians, their children, and it continues to affect their children's children. The Red Cross estimates that Agent Orange has affected three million Vietnamese people, including 150,000 children born with severe birth defects. 

 

0:07:14.1 RW: So, what is this stuff? And what makes it so dangerous? AO is a mixture of two different herbicides. Most of this mixture degrades after a few weeks and is no longer toxic, but one ingredient does not degrade well and it is still found contaminating farmland and water sources where it was originally sprayed, and this is a group of chemicals called dioxins. There are a few types of dioxins and they were used in other herbicides as well. Dioxins have a long half-life. In humans, this can be up to 20 years. In the environment, if it's buried underground or if it's in the sediment under rivers or lakes, its half-life is over 100 years. 

 

0:07:57.1 RW: For this reason, dioxins are part of a group of chemicals called Persistent Organic Pollutants. We're still exposed to dioxins from waste incineration and manufacturing processes and other sources, but at nothing like the levels seen with people exposed to Agent Orange. I can't go into a deep dive here about the mechanisms of dioxin exposure. Let's leave it at this; exposure causes various kinds of cancer and neurological problems and auto-immune diseases, and heart disease and liver failure, and more including genetic damage that can then impact the health of that person's children and maybe their children too. 

 

0:08:37.8 RW: The United States Department of Veterans Affairs estimates that 2.6 million American military personnel were exposed to Agent Orange. The first claims of illness were reported in 1977. It took a shockingly and shamefully long time for the Veterans Administration and other government agencies publicly to acknowledge the damage that AO exposure did to veterans, nevermind its continuing effects on their children. But now, the list of presumed conditions associated with primary exposure includes 17 different diseases. I'll put the whole list in our show notes, but here's a short sampling; eight different types of cancer, Parkinson's disease, diabetes, amyloidosis, all of these are now presumed to be related to AO exposure when they occur in Vietnam veterans who were there during a specific time period. Agent Orange was banned in the United States in 1971, and all remaining stocks were destroyed by 1978. 

 

0:09:41.0 RW: Okay, but what about these vets and what about their children? According to a truly inspiring work of investigative reporting, a 2016 ProPublica article did what the Veterans Administration would not with all of their stored data, ProPublica gathered that data to look at the risk of birth defects among the children of Vietnam veterans, and they found this. This is a quote; "The odds of having a child born with birth defects during or after the war were more than a third higher for veterans who say they handled, sprayed or were directly sprayed with Agent Orange, than for veterans who say they weren't exposed or weren't sure. This analysis controlled for variables such as age and health status." Well, how does that happen? How does Agent Orange or dioxins affect the genetics of the following generations?  

 

0:10:37.0 RW: Here's a quote from a Scientific American article that captures this concept better than I ever could; "Emerging evidence in rodents at labs around the world shows that TCDD, that is a particular type of dioxin, alters the epigenome, the biological system that controls which genes in a cell are turned on or off. TCDD can reprogram these epigenetic controls, with consequences that might appear long after the chemical has been cleared from the body." "The effects don't necessarily occur at the time of exposure." 

 

0:11:14.9 RW: Explains Michael Skinner, a biologist at Washington State University. "Instead, the Epigenome can be stuck in an altered state with effects that can occur at any time during your life." When Skinner gave pregnant rats high doses of TCDD, he found that the second and third generation offspring had elevated rates of ovarian and kidney disease, and the fourth generation had lower sperm counts. Asked if those results were relevant to the experience of humans exposed to dioxins in Vietnam, Skinner emphatically answered, "Yes." So that's the end of the quote from Scientific American. 

 

0:11:54.8 RW: As you can imagine, this is a very controversial topic and it's difficult to study in humans for ethical reasons. The Veterans Administration has now acknowledged that some birth defects in the children of Vietnam vets can be attributed to their OA exposure, but it's an uphill battle to make the case for any care or benefits because we are exposed to dioxins from many sources. The most predictable birth effect related to OA exposure in a parent, is spina bifida, but many such children have lots of other challenges including missing or shortened limbs, auto-immune disease, GI tract dysfunction, renal anomalies, neurological problems, and much, much more. 

 

0:12:39.3 RW: And now, those children are having children and they also are more likely than the general population to have various kinds of birth defects. So that's a tiny snapshot about Agent Orange and its effect on the people who are exposed, and their children. I've left out a huge amount of information, but we have enough now to take a running start at looking at this I Have A Client Who story on which this episode is based. 

 

0:13:08.2 RW: So in response to my call for stories that I put out a few weeks ago, a practitioner replied that they had a client with second-generation Agent Orange exposure. I asked for some more details, and here's what they sent me. This client is 47 and on disability as she is unable to work. She has, among other things, spina bifida, congenital foot deformation, drop-foot, numerous spinal surgeries including fusion and laminectomy at L4-S1, a synthetic disc at L4, multiple gynecological issues which required multiple surgeries including hysterectomy, bilateral carpal tunnel surgeries, osteoarthritis, depression and anxiety, go figure, migraine headaches, diabetes, neuropathy in the extremities resulting in numbness and pain, chronic sciatica, chronic pain, chronic fatigue, insomnia, joint swelling and temporal mandibular joint disorder, and she also has multiple chemical sensitivities. 

 

0:14:09.2 RW: She's had a lot of neuropathy in her arms the past couple of years, and by the time she was finally able to be taken seriously, those are her words, by her orthopedist, her lower cervical vertebrae from C4 to C7 had fused themselves together, so there was nothing they could do. Between the pain, neuropathy and drop-foot, she has multiple mobility aids, including a home-made cane/walking stick, which is actually more stable for her than anything she's been given by any of her doctors. It's tall and broad-based and gives her the stability of a ginormous trekking pole. Her goals are always pain relief or pain reduction. She's very pragmatic. I use jojoba exclusively with her due to her multiple chemical sensitivity, and she feels safer not being too slippery. 

 

0:14:56.2 RW: For the most part, everything always hurts, so we generally work on whatever is bothering her the most when she comes in. She's been to many massage therapists and body workers and is a good advocate for herself. She sued the VA and won, and they now pay not only her medical bills, but also her disability income. Given how hard it is to prove parental AO exposure as causative, I'm impressed. So yeah, good self-advocate. I mostly use myofascial release and dermoneuromodulation. And that's the end of the contribution. 

 

0:15:34.6 RW: Well, listeners, I just don't have a lot to add. Frankly, I'm a bit tongue tied about all of this. This client has a host of physical and emotional repercussions of actions in which she had no say. She seems to be a remarkable woman, and I applaud her self-advocacy, and I love that she is able to get massage as part of her self-care. Decisions about massage therapy need to be based on her goals, which our contributor has done. I wanna encourage this practitioner to stay on top of what medications or devices she has to use in case that requires any special accommodations. 

 

0:16:12.5 RW: But this client is really unique, isn't she? And she needs accommodations in virtually every aspect of massage; from positioning, because of her spinal problems, to pressure, because of neuropathy, to lubricant because of hypersensitivity. Anything this practitioner can do to add a little sunshine to her life is contributing to the greater good. I wanna thank our contributor for bringing my attention to what has been a problem largely swept under the rug by people who should know better and who should do better. And I wanna add that while Agent Orange won't be an issue in the future, we have new generations of military veterans who've been exposed to many other toxins and we haven't done a great job with them either. 

 

0:17:00.4 RW: Since I announced I was doing this project on Facebook, I have heard from literally dozens of massage therapists who know someone or who has clients who are otherwise affected by Agent Orange exposure. There's just no way to look at the situation through rose-colored glasses. It stinks all the way around and all the way through. But if we can be just a tiny part of a helpful way to cope for people with this problem, then we can at least be part of a solution. Sometimes, that's the best we can hope for and it's all we can do. 

 

0:17:33.9 RW: Hey, everybody, thanks for listening to "I Have A Client Who... " Pathology Conversations with Ruth Werner. Remember, you can send me your I Have A Client Who stories to ihaveaclientwho@abmp.com. That's, ihaveaclientwho, all one word, all lowercase, @abmp.com. I can't wait to see what you send me, and I'll see you next time.

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