You've heard about the VA scandal, but you've never heard it like this.
Warning: Graphic descriptions and video. Names and locations have been changed.
Dr. Carlson said he was healing yesterday, but this can't be right. Finally he succumbs, not to the pain, but logic. Eric's wife drives him to the ER. They've been trying to conceive for over a year, but he knows the medication has destroyed that chance: There will never be a child in their rear-view mirror. Stumbling into the ER, Eric holds his broken ribs in place with his hands.
"You're lucky," says the admitting physician presiding over his frail frame, 30 pounds lighter than a few months earlier. "Six more hours and you'd be dead." His wounds have become septic, his system immunosuppressed far too long. He wonders if the health care his country promised him is going to kill him. This is not the war Eric signed up to fight.
There was red tape from the beginning. Within weeks of arriving in Bosnia in 2001, Eric develops rashes and hives. Doctors attribute the mild episodes to the change in climate and seasonal allergies. They continue for over a year. Soon, Eric develops an umbilical hernia. Despite the pain, his sergeant recommends postponing treatment. Eric agrees. Reporting his injury would mean medical holdover status placement; remaining on active duty until he is treated, stabilized, released to duty, or discharged. This also means that instead of returning to his civilian job, he could be stuck behind a desk, pushing papers for up to a year.
Finally back stateside in 2003, Eric is scheduled for his first surgery. The hernia soon reappears. They try again the next year, this time at another hospital. This surgery, too, is unsuccessful. The implanted Kevlar mesh detaches, leaving him in excruciating pain. Deprived of targeted immunosuppressants, he develops pathergy, in which skin becomes hyper reactive to minor trauma. It remains undiagnosed.
Eric's third surgery in 2005 is his final one; but he doesn't heal well. While he doesn't want to leave the army, surgical complications have left him scarred and weak. He's more liability than asset. Medically discharged, Eric joins the ranks of those now dependent on the Veterans Administration.
In order to get the VA to cover his healthcare, Eric applies for disability. It takes two years, but he's finally granted a modest ten percent rating. It's good news. He'll have coverage for his injuries, with just a small co-pay; if he can get an appointment. To the VA, it doesn't matter when he began presenting symptoms: Since his illness it wasn't diagnosed during service in Bosnia, it isn't 'service connected,' leaving him another name on a burgeoning waitlist.
In 2010, alarmed by his worsening condition, Eric steps up his own research. His symptoms are varied and strange, but after weeks of reviewing the medical literature, he begins to suspect Behcet's Syndrome; a chronic, progressive and disabling auto-inflammatory disease in which swelling damages blood vessels throughout the body, often leading to sores, swelling of the eyes and, eventually, inflammation of the brain, spinal cord, and digestive system.
While rare in the United States, Behcet's is common in Southeast Asia and the Middle East, where US military personnel have been involved in decades of war. Genetics may also contribute: Eric's father and his half-brother, Robert, exhibit similar symptoms. There is no blood test for Behcet's; it can only be diagnosed clinically. In fact, with the average time from onset of symptoms to diagnosis at about ten years, chances are that by the time you're diagnosed, multiple organs will have begun to deteriorate.
Luckily, Eric is not entirely dependent on the VA. He has private health insurance through his work as a defense contractor in DC, enabling him to seek treatment from top neurologists at Georgetown University Hospital. He presents his case, and after a negative workup for other rheumatic diseases, they agree. Shortly after, one of the world's top Behcet's experts at NYU reconfirms what they already know. For Eric, half a world away and nine years after Bosnia, the multi-organ system involvement, family history, and environmental factors converge: He's diagnosed with Behcet's.
Soon after, he receives a letter from his battalion physician in Bosnia. Looking back, he misdiagnosed Eric. What he saw were the initial symptoms of Behcet's. While his treatment is just beginning, the progressive illness means chronic absences from his private sector job. Eric is soon terminated and COBRA coverage runs dry a few months later.
Most private insurance plans don't cover what he needs anyway: an inflammatory response suppressant known as Remicade. Even with the Affordable Care Act, Eric can't find an insurance policy that will pay more than 50% of the bill, rendering the $10,000 dollar a month medication far too expensive. The VA HealthCare System, however, will cover it fully- just nine dollars a dose.
By this point, the Behcet's has progressed from his kidneys to his chest, finally taking hold of his brain, producing severe neurological complications including episodic loss of balance and sight disruption, anxiety, and tremors. The muggy DC summers exacerbate his lesions. Eric and his wife decided that come fall, they will move back west. Eric's family is there and the cost of living, cheaper. They need the extra cash for medical bills.
Georgetown places him on high-dose corticosteroids in an effort to prevent permanent brain damage. It's meant to be a temporary measure, a holdover until he can get to VA facility in his hometown, where he'll no doubt be provided the intravenous Remicade. Upon arrival, Eric is assigned to the VA healthcare System's Dr. David Carlson, an internist and family practitioner. Eric arrives prepared with the diagnosis from NYU, from Georgetown, the letter from his battalion physician, and a novella's worth of medical records. The lesions, the tests, the expert opinions, the pain; Bosnia itself, are all piled in front of Dr. Carlson. The overloaded doctor, however, refuses to read them.
Soldiers are to be "Army Strong." They have to be to survive. Eric, however, breaks down. He cries, imploring Dr. Carlson to review his history. Georgetown had recommended weaning him off the high dose steroids after a month in order to avoid side effects like osteoporosis, ulcers, and increased susceptibility to infection, the latter of which could have permanent consequences for an already compromised inflammatory patient.
Dr. Carlson tells Eric to "save it for Salt Lake," referring to the city's VA Medical Center, where Eric will be sent to undergo invasive procedures to re-diagnose what has already been confirmed. Eric is frustrated, haggard, and God, the pain. If he wants treatment, however, he'll have to play by VA rules. Only the VA doesn't send him to Salt Lake.
Since his Behcet's isn't "service connected," he has to pay his own way. He's scheduled for five appointments, each in a different week. Explaining that he can't afford ten plane fights, five hotel stays, five rental cars, and roughly twenty meals, the VA acquiesces, arranging a week's worth of invasive and repetitive tests he doesn't need. The tests are scheduled for May, five months later.
While he waits, Eric can cease the steroids and slowly let the inflammation smother his organs, one by one, in hopes that he'll get the Remicade in time to revive them, or he can continue the steroids and risk not only the side effects but a highly weakened immune system in which case the tiniest infection could turn lethal. It's a simple question with an unknown answer: Which one will kill him first? He chooses to remains on the high-dose corticosteroids, turning the transitory medication into a six-month affair.
Back from Salt Lake, Eric calls Dr. Carlson's office, satisfied that he will finally be weaned from the steroids- and that the doctor will no longer be able to refute the reconfirmed diagnosis. He can't get an appointment in the next week or so, but he's on the waitlist- they'll call at the first opening. It can't be too long; Dr. Carlson requested to see him as soon as he returned.
A week passes, then June turns into July. He calls. August. No movement. September. October.
Carlson, it turns out, is on paternity leave. Rather than schedule Eric with another doctor, he sits on what would later be termed a fraudulent waitlist. He remains there, without access to the medications requested by the VA's own doctors to negate the steroids' negative effects. The visits to the ER grow more frequent as the months of high-dose steroids manifest: He's left with low bone density; border lining on osteoporosis.
November. December. January.
X-ray studies show early onset osteoarthritis of the hips and shoulders. He didn't need to see the x-ray; his joints now ache with the pain and stiffness so commonly associated with arthritis, despite being only 35 years old. His bones have become so brittle that a three-foot stumble dislodges several ribs. Formerly a distance runner, Eric can't walk half a mile without stopping for rest.
February. March. April.
On May 27th, 2014 following a substantial increase in the Remicade dosage, and his lesions now dripping bloody brown liquid, Eric manages to make an emergency appointment with Dr. Carlson. The nurse agrees his wounds have deteriorated; he's prescribed painkillers until his scheduled appointment in two days.
Two days later, a haggard, overwrought Eric walked into Dr. Carlson's office. Carlson tells Eric he must be picking at the lesions on chest. Carlson implies that Eric is mentally ill, a doctor-shopping hypochondriac.
Shaken by Dr. Carlson's advice, Eric documents his experience that afternoon, videoing himself caring for his "healing" wounds. It seems to be the only way to prove he's not suffering from a fictitious illness. He slowly removes the bandages to disturb as little skin as possible but small sections crumble and wounds ooze pus. He's not following Dr. Carlson's directions: He needs a topical numbing agent to get through the pain and an antiseptic only makes logical sense. That night, Eric calls two of his old friends, doctors. They haven't seen the wounds yet, but the description is enough to tell Eric to go to the ER immediately.
ER physicians indicate that they do not think he is the source of the symptoms but that they appear "typical of a highly immunosuppressed state." A CT scan confirms the tunneling latent infection throughout his chest wall. He's placed on antibiotics.
"Six more hours and you'd be dead."
The staff is under a communication ban so that Eric can be evaluated without the prejudice of his previous doctors. After a few days, Eric is ready to be discharged, but he knows he won't find private insurance to cover the Remicade. Eric has again found himself in the unimaginable position of only having the VA, the organization whose negligence has nearly killed him, to turn to for help.
In preparation for departure, he contacts the VA to be switched to another clinic nearby, in hopes of finding an objective practitioner. But there's a note in his file. Despite VA policy that patients have freedom of choice in primary care clinics, he's only to see Dr. Carrillo, the director of both clinics, and Dr. Carlson's boss. Even though he's exhausted, Eric holds his ground until a patient service representative finally gives in to VA policy.
Eric is hopeful when he first meets the new doctor, but Dr. Truscott is clearly skeptical. No doubt he's heard about Eric. After reviewing his medical history, Dr. Truscott is no longer suspicious; he's dumbfounded. It's clear what has happened to Eric, the records show it. Sure enough, another MRI shows the development of avascular necrosis, the death of bone tissue associated with long-term use of steroids.
Maybe now, maybe this time, maybe outside the VA system, this veteran will get the help his country promised. Eric is lucky, in a way. He'll never fully recover, but he didn't die on the waitlist like thousands of others. But that's just the reason he's telling his story.
Leave no man behind.
A formal complaint to the Office of the Inspector General, whose mission is "to prevent and to detect criminal activity, waste, abuse, and fraud," elicits the following response:
"Because we receive more complaints than the OIG has resources to review in depth, we limit investigative efforts to issues that have the most serious potential risk to Veterans and VA operations or for which the OIG is the only forum for relief." In other words, you're shit out of luck.
After repeated attempts to have claim addressed, he authors a letter to the Medical Chief of Staff of his VA facility, Dr. McDevitt. He's told to contact the center's risk manager, who tells him he has one option: file a civil lawsuit and to have his counsel contact the VA regional counsel office. But that's not actually his only option. The Code of Federal Regulations designates that the VA has a legal obligation to disclose to the Veteran any harm done by the VA in the course of his or her treatment.He informs them of this.
They'll get back to him.
Dr. McDevitt calls along with the risk manager. They'll write a "disclosure of adverse event" letter. They summarize its contents over the phone, but he'll have to submit a formal records request to obtain a copy. Eric goes back to his initial clinic a few weeks later to obtain a full copy of his records. He talks to the patient privacy advocate, who drops an interesting fact: Early the previous summer, right after Eric's hospitalization, nearly the entire staff in the nursing and scheduling departments had been transferred or promoted to other positions at various locations within the VA system.
Eric asks the nurse to provide a list of who had access or made changes to his medical file. She's confused. Despite VA policy, which denotes that patients that may present a risk of malpractice liability must be marked as private, Eric's records weren't tagged, meaning there's no way to see what changes were made- or what's been redacted.
While the American government is strong, so are the people who have the right and the ability to stand up when strength becomes tyranny. The VA has, in effect, told Eric the same thing it's told thousands of other veterans. File a civil lawsuit, and good luck trying to prove it; a method that's sure to be more difficult in Eric's case, given the VA's ability to rewrite history. There's a reason, however, why nearly 70% of all claims against them are eventually granted at some level on appeal. It's easier to throw money out the back door than face the media on the front lawn. But Eric won't be settling. The VA needs change more than he needs the money.
The VA should be the fulfillment of a promise: health care in the service of those way we claim to honor most, those who have worn the uniform and offered the last, full measure of their worth for their nation. It has become, in reality, a vending machine, dispensing care through a maze of impersonal, bureaucratic machinery that is inured to patient needs and soldiers' pain. It is top-down health care, trying to deliver compassion through an ever-more complicated Rube Goldberg machine that tries to cure too much bureaucracy with more bureaucracy, paperwork, and regulation. What we have today is a VA that is only able to fit patients to whatever health care they are able to give, instead of fitting care to the patient. The tragedy is not that this is the worst the VA can do for our soldiers. It's that this is the best they can do.