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NOVEMBER/DECEMBER 2007

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BY RICHARD CURREY
Honey Sue Newby is 36 years old now. Born in 1971, her father served eight years in the Marines and saw three combat tours in Vietnam. When Honey Sue was born, her mother, Suzanne Nesler, knew something was wrong.

“Something was amiss,” Suzanne said. “Honey Sue had severe jaundice and they kept her in the hospital for further observation.”

What was wrong turned out to be spina bifida, a congenital disorder that involves incomplete development of the brain and spine. One of a group of abnormalities known as neural tube defects, spina bifida is caused by the failure of the spinal column to form correctly during the first month of pregnancy.

Spina bifida children can have missing vertebrae or even exposed spinal tissue that necessitates surgical repair. This birth defect can result in paralysis along with associated deformities, bowel and bladder incontinence, varying degrees of mental retardation, seizures, and a condition known as hydrocephalus (“water on the brain”).

People with spina bifida are often forced to use wheelchairs. Many have a wide range of disorders, including seizures, mental and emotional developmental delays, and learning disabilities. They require lifelong care and ongoing medical interventions to manage infections, emergencies, and other complications.
And the lives of their families—parents, guardians, and caregivers—are forever changed, redefined by the disability and its needs.

SEARCHING FOR ANSWERS
The precise cause of spina bifida is unclear, although scientists point to genetic causes as well as environmental exposures. While we understand the mechanics of spina bifida at the genetic and cellular levels, why it happens in the first place is still largely a mystery. Why, in some babies, do the cells that form the tissues of the brain, spine, and nervous system fail to normalize early in pregnancy?

Researchers are still searching for the answer.

The story of Honey Sue Newby is inextricably linked to research that has looked with great interest at possible environmental causes of spina bifida. Might toxic contaminants be a factor? Could dioxin—the operative chemical in the defoliant routinely referred to as Agent Orange (AO)—incite a mutation or cause some damage that is later passed on to an unborn child?

The evidence to support this theory remains mixed, but the Institute of Medicine (IOM) postulated that the scientific basis for an AO-spina bifida connection was at least “limited or suggestive” in a report issued in 1996. The association between AO and spina bifida or any other congenital birth defect was viewed as “tentative,” and some members of the IOM’s AO expert panel thought the evidence was, in the words of panel chair Dr. David Tollerud, “far from conclusive.”

Still, the association was made and a national discussion was launched, in itself a victory for thousands of veterans who believe their diabetes and cancers and other odd or unexpected illnesses are in some way linked to AO exposure while serving in Vietnam. Interestingly, the link between dioxin and birth defects had, in fact, been established in laboratory animals many years earlier—the very reason the United States ceased use of all defoliants in 1971.

The link between AO and birth defects in humans, however, has never been proven beyond absolute doubt—at least according to some scientists. Unless, as many Vietnam veterans believe, they were and are the human “lab rats” that prove the disastrous health impacts of AO in a tide of illness and disease that has besieged the VA and burdened a generation of veterans.

Playing Hardball
Shortly after the IOM report was issued, the VA backed legislation strongly supported by VVA that would provide benefits for the children of Vietnam veterans who had spina bifida. The Agent Orange Benefits Act, which was signed into law on September 26, 1996, established a benefits package for veterans’ children with spina bifida and authorized the VA to provide benefits as of October 1, 1997. These benefits include lifetime health care services for spina bifida and any associated disability, a monthly stipend that can reach nearly $1,500, as well as VA vocational training and rehabilitation services.

But getting those benefits, particularly health and medical services, can be virtually impossible, according to Ron Nesler.

Nesler is Honey Sue Newby’s stepfather, and, with his wife Suzanne, her guardian and caretaker. “The VA recognizes about 1,200 children of veterans who are disabled as a result of AO exposure of one of their parents,” Nesler said. “Of those 1,200, there are about 200 children who are recognized as totally disabled as a result of their father’s AO exposure. These individuals are designated as ‘Level III’ cases.”

In theory, Nesler explains, all Level III individuals receive total health care from the VA. “But in practice,” he said, “they receive virtually none.”

Nesler described what might happen if Honey Sue Newby needs health care. “The first thing we must do is have a doctor write a letter stating that her condition is related to her spina bifida.” This must be done, Nesler added, despite the fact that Honey Sue is an officially designated Level III individual—which means essentially that none of her medical problems will ever not be related to spina bifida.

“Basically, we have two choices,” Nesler said. “Not getting hospital care or falling back on Medicaid. That’s because it takes months and months to get anything approved through the VA.” Even then, Nesler contends, the VA will not approve care without a fight. “The last time we had anything done through the VA, it took congressional intercession to get the care that Honey Sue needed.”

Suzanne Nesler refers to her husband as a “bulldog” when it comes to fighting on behalf of Honey Sue. But Ron Nesler maintains that his persistence is necessary to get anything done.

He offers an illustrative example: “Honey Sue, due to her brain abnormalities, has a great many seizures. She has had them for years, and in the course of these seizures she grinds her teeth. Through many seizures over several years, she ground her teeth down so badly she needed crowns for every tooth.” This problem clearly is a direct result of her spina bifida, and the Neslers have multiple letters and statements from doctors and dentists saying just that. But they found the VA difficult to deal with, sometimes encountering rude or abrupt employees. Then there are the confusing or contradictory regulations.

And the interminable delays.
The dental crowns ultimately were approved by the VA, but about a year later Honey Sue developed an abscess under one of the crowns that invaded her jaw and led to recommendations for surgery. “We again had the letters from the doctors and the dentists, and every one of them agreed that the condition was a result of spina bifida,” Nesler said. “They agreed that she ground her teeth down due to seizures related to spina bifida and her condition [with the invasive infection] was therefore directly related.”

One doctor made it clear: If Honey Sue did not have intervention soon, she would risk major reconstructive jaw surgery, and might even lose portions of her jaw bone and cheek.

But the VA resisted. It took six months to get VA coverage, for a procedure that every doctor and dentist involved in the case agreed was absolutely necessary and was a direct result of spina bifida.

A VA spokesperson, however, suggested the Nesler’s predicament is not typical. Glenn A. Johnson, Chief of Communications for the VA’s Health Administration Center in Denver, home to the VA Spina Bifida Health Care Program, says that the agency has not noted any difficulties in administering its AO-spina bifida benefits program.

“There is an application process in which the parent of the afflicted child must prove that he or she was indeed serving in Vietnam at any time between early 1962 and May 1975,” Johnson said. “Once the child is registered as a beneficiary, health-care is readily available. In fact, the beneficiaries of either program have the complete freedom to see any health care provider they wish and simply submit the bill for their treatment to the VA’s Health Administration Center in Denver for payment.”

However, Honey Sue’s problems result not from difficulties in being accepted into the VA Spina Bifida Health Care Program; rather, from accessing care. “The core problem is that she must reprove her status each time she needs care,” said Nesler.

BAttling the system
Ron and Suzanne Nesler maintain that their experience has been very different. “It’s not just the VA,” Nesler said. “We’ve battled Medicaid, too. Here in Indiana, where we live, we had to hire an attorney and pay $2,000 out of pocket to force the State Medicaid administration to recognize Honey Sue’s illness and approve her for coverage. A large problem is that most people, even doctors and healthcare administrators, are not very familiar with spina bifida.”

Glenn Johnson agrees that problems at the VA also might arise out of lack of knowledge. “In many cases,” Johnson said, “veterans service officers have only a partial knowledge of these programs and may unintentionally mislead or misinform potential beneficiaries about the application process and benefits. This can cause long delays or even the erroneous denial of benefits.”

This, Johnson implied, may be what happened in the case of Honey Sue Newby. But all that Ron and Suzanne Nesler know is that their attempts to care for Honey Sue have been uphill battles requiring extraordinary commitment and a fierce focus on getting the right thing done.

“I really think the congressmen who voted for this legislation believe they have provided health care for the Level III AO-affected children of veterans,” Ron Nesler said. “But the fact is that the health care is all but inaccessible. Honey Sue has been officially rated a Level III since she was 30 years old, and in all that time, the only thing the VA has covered was her dental issue and that needed congressional intercession.” Nesler noted that much of Honey Sue’s medical care is of an emergency nature, making a lengthy VA application process medically inappropriate.

The medical issues of most spina bifida-affected individuals will almost always be urgent or emergent. Nesler finds it confounding that, although this is common knowledge, the VA has put a program in place that can take months to process a single request for care.

“The bottom line is we depend almost entirely on Medicaid for Honey Sue’s health care,” Nesler said. “Here we have a 36-year-old person who is profoundly handicapped secondary to her father’s service in Vietnam. On the one hand, we have the Department of Veterans Affairs who says yes, this person is disabled secondary to her father’s military service and is entitled to full medical care, but, on the other hand, they deny her that medical care.”

The VA’s public information materials regarding AO-spina bifida benefits seem to agree with Ron Nesler as well as Glenn Johnson of the VA: Honey Sue Newby, a designated Level III AO-spina bifida individual, should receive unlimited VA medical benefits. According to Johnson, the Neslers should be able to take Honey Sue to any clinic, hospital, emergency room, or doctor’s office in the land and receive treatment. If the VA coverage is not honored immediately at the point of care, the bill may be submitted to the VA for payment.

The Neslers have encountered something quite different. “The staff at hospitals sometimes look at our VA card like we’re trying to pull a scam. I don’t think they’ve ever seen one before. They certainly don’t know what to do with it.”

Indirect Casualties of war
The scientific debate continues at full boil. As late as June of this year, when the Ford Foundation launched the U.S.-Vietnam Dialogue to explore and address AO damage in Vietnam, the old disagreements among leading AO researchers flared. It always comes back to the paucity of hard evidence surrounding AO’s role in birth defects, a debate that will clearly rumble on for some time. But Ron Nesler has a stepdaughter to care for.

“Congress has deemed Honey Sue’s medical condition, and that of others like her, to be a compensable disability,” he said. “The VA has confirmed through its own regulatory policies that Honey Sue is entitled to benefits. This status was earned by her father’s three separate 13-month tours under fire in Vietnam.” If we can compensate the veterans themselves, Nesler contends we can care for their disabled children who are indirect casualties of war.

After what Nesler refers to as “years and years of lobbying with the help of John Garcia, New Mexico Secretary of Veterans Affairs,” he managed to see a memorial passed as a joint resolution in the New Mexico State Legislature. The Neslers lived for a time in Las Cruces, and State Rep. Nathan Cote introduced the joint memorial that urges the U.S. Congress to fully fund medical care and aid and attendant care services for Honey Sue and all other fully disabled Level III spina bifida children.

“This has no actual legislative weight, of course,” Nesler said, “but it does recognize by official decree in at least one state legislature that Honey Sue Newby and approximately 200 other similarly affected individuals are totally disabled as a result of spina bifida that is attributed to their fathers’ combat service in Vietnam. This memorial has been our biggest victory so far.”

The New Mexico memorial calls for Congress to provide full medical care and attendant care to Honey Sue Newby and the other Level III spina bifida children who are totally disabled as a result of their birth parents’ military service in Vietnam. It was resolved “that the New Mexico congressional delegation work vigorously for adequate funding to provide full medical care and aid and attendant care to all Level III spina bifida children who are totally disabled because of the effects of Agent Orange used in Vietnam.”

Without her or her husband, Suzanne Nesler fears for her daughter’s ongoing care. She worries that Honey Sue could end up being warehoused in a long-term charity care facility where her needs will not be met—or even cared about.

The Neslers relate a recent episode in which Honey Sue suffered a series of seizures. “When that happens, she does not sleep, and when Honey Sue does not sleep, we cannot sleep,” Ron Nesler said. “We found ourselves in an ER seeking help. We spent eighteen hours there because no insurance would cover Honey Sue. Then they hauled us off to a hospital that we later realized was a detox center for alcoholics and addicts. Sue and I simply had no choice—that was how bereft we were of options.”

Desperate for sleep, the Neslers left Honey Sue in the detox center for two days while they got some vital rest.

Suzanne Nesler, though, was incensed. “She was in there with adult men. Not even women! That’s where they sent her! And the patients were allowed to wander in and out of Honey Sue’s room.” Nobody, it seems, was minding the store. Honey Sue was restrained and heavily sedated. “She wouldn’t have been able to even call out for help if she had to. This is what can happen if Honey Sue’s care were left to other people. We can keep her safe when we’re around but what happens when we’re not?”

Ron Nesler concurs. “Realistically, how much longer are we going to be able to take care of Honey Sue? Both her mother and I are in our 60s. When does the VA step up to fulfill its responsibility. We think it’s past due.”

No Comment
Yet another aspect of AO-related spina bifida is the dearth of available information or resources. A Google search using several combinations of search terms yields very little information on the care of AO-spina bifida individuals. To investigate this story further, I turned to the Spina Bifida Association (SBA), a national advocacy organization and clearinghouse. The SBA, according to the organization’s website, aims at prevention “of spina bifida and to enhance the lives of all affected. Since 1973, SBA has acted as the nation’s sole voluntary health agency, working to improve the lives of those with spina bifida.”

The SBA website includes information about the Agent Orange Benefits Act among its FAQs and its fact sheets. Yet when I contacted the SBA about Honey Sue, I was advised by SBA Director of Communications Amanda Darnley that since SBA “has no experience with the service or related problems with this program, we are not in a position to comment.”

The nation’s leading spina bifida organization is not in a position to comment? This response is consistent with the Neslers’ experience and, through them, the plight of Honey Sue Newby—that assistance of any stripe in caring for a spina bifida-affected person is very hard to come by.

Glenn Johnson of the VA says the best thing to do is to go to the program’s website, www.va.gov/hac and proceed to the spina bifida pages: www.va.gov/
hac/forbeneficiaries/spina/handbook/sbhandbook.pdf
Or call the Denver VA Regional Office toll-free at 888-820-1756, or reach them by email at birthdefects@vba.va.gov or the VA Health Administration Center at 800-733- 8387 to find out exactly what needs to be done to apply for benefits or inquire about a claim. Johnson emphasizes that the application process for both health care programs is administered only by the Denver VA Regional Office.

On April 24, 2007, Ron Nesler’s testimony before the House of Representatives Committee on Veterans Affairs was presented by Rep. Brad Ellsworth (D-Ind.). As part of a day of hearings before the Subcommittee on Disability Assistance and Memorial Affairs, Rep. Ellsworth read Nesler’s emotional account into the record.

“We are told by the VA that Level III AO-spina bifida is the approximate equivalent of a 100 percent service connected disability rating for a military veteran,” Nesler said in his testimony. “As a Level III totally disabled AO-spina bifida child, Honey Sue receives about $1,500 per month in VA compensation. [Yet] a 100 percent service-connected disabled veteran whose situation mirrors Honey Sue’s as to cause and result receives about $2,500 per month.

“Honey Sue and the roughly 200 other Level III children receive only scraps of very-difficult-to-access health care coverage from the VA. And these bits and pieces of health care specifically exclude Honey Sue’s greatest need, which is aid and attendance care. Yet the 100 percent service-connected disabled veteran receives full medical care, including aid and attendance when needed.”

Nesler testified that Congress created the law recognizing Level III children as totally disabled as a direct result of a birth parent’s military service, and therefore “Congress should insure full health-care benefits, including aid and attendance care for these children—both Honey Sue and the 100 percent service-connected, disabled veteran are conceded to be totally disabled as a result of military service. They should be treated the same.”

Honey Sue’s biological father, the U. S. Marine with three Vietnam War tours to his credit, suffered crippling PTSD after his service years and now has A/O-related cancer. His life never pulled together, and he was ultimately committed to a VA mental health facility in Texas. His daughter also has seen her life irrevocably changed by the Vietnam War. Like so many dark legacies of that war, this one is troubled, contentious, and with no resolution in sight more than 30 years since the war ended.

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