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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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2011, Vietnam Veterans of America. All Rights Reserved. 8719 Colesville Road, Suite 100, Silver Spring, MD 20910