Sgt. Daniel Meyer doesn’t need anyone to tell him that the poison he sucked into his lungs at the Joint Base Balad burn pit in Iraq is to blame for the fact that he’s now a 29-year-old trapped in an old man’s body. But it is helpful that doctors have made it official in his medical records. Meyer has Bronchiolitis Obliterans (as bad as it sounds), for which he is on four liters of oxygen a day, as well as fatty tumors of the legs, which keep him wheelchair-bound. His service connection affords him generous VA home health care, since he can no longer leave the house.

Even Meyer, featured recently in the Washington Post, admits his case was so severe that the VA could not deny him. But what about all the men and women who came home with respiratory problems, perhaps not quite as severe but debilitating nonetheless, who don’t know where they got it or where to turn for a proper diagnosis? The VA and Department of Defense have yet to fully recognize that toxic exposures—primarily from the burn pits on all major U.S bases in Iraq and Afghanistan, but also from heavy metals in the sand and dust —are to blame.

Thanks to persistent lobbying and more than one sympathetic representative, Congress passed legislation in 2009 to put tough new regulations on burn pit use in the field including a general prohibition, with giant incinerators replacing the dozens of giant pits operating in Iraq and Afghanistan immediately. But it didn’t quite go as planned.

The Special Inspector General for Afghanistan (SIGAR) has found that millions of taxpayer dollars have gone into putting incinerators into the field that are either not working or not being used. It found that incinerators brought into Afghanistan’s Forward Operating Bases Salerno and Sharana cost taxpayers $11 million, but were not being used because contractors did not install them properly. To add insult to injury, reports indicate that once Sharana was shut down, the inoperable incinerators were likely broken down into scrap.

At Camp Leatherneck, despite the military spending $11.5 million to put four incinerators on the base, “we observed several truckloads of solid waste being delivered to open-air burn pits,” wrote SIGAR John Sopko in July 2013 (page 35). It turns out the incinerators were not being used. This unduly exposed the estimated 13,500 Marines and soldiers who lived there, he wrote, “to toxic smoke from burning solid waste each day,” which “increases the long-term health risks for camp personnel, including reduced lung function and exacerbated chronic illnesses, ranging from asthma to chronic obstructive pulmonary disease.”

Veterans advocates who have been working on the burn pit issue for several years now are hoping that another law, passed by Congress in January 2013, will force the VA and DoD’s hands by establishing the VA Open Air Burn Pit Registry. The registry would reach out to the untold number of ill men and women suffering from possible toxic exposures overseas. It was mandated to launch a year after the bill was signed, but so far, and with very little explanation, the registry has yet to materialize.

“They don’t want to admit there is a burn pit problem and putting out the registry is admitting there is a burn pit problem so this is just another way of putting it off,” charges Meyer, who has been unable to walk for two and a half years. He spent his first tour in Balad in 2007. One of his jobs on the first tour was shooting birds with a BB gun around the burn pit, wholly unprotected from the fumes. His barracks were adjacent to the pit. On his second tour, at Camp Bastion, Afghanistan, his barracks were across the street from the pit.

It’s estimated that at its peak, the pit at Balad burned 250 tons of unregulated hazardous materials, batteries, tires, food, medical waste, and whatever else—a day. And they used jet fuel to burn it, Meyer told TAC.

Vets began wondering publicly about their unexplained symptoms—particularly respiratory problems—as far back as 2009. Burn Pits 360 is a nonprofit run by Rosie Lopez-Torres for her husband Sgt. LeRoy Torres, 40, who was diagnosed with constrictive bronchiolitis after returning from Iraq (great profiles of Meyer and Torres here). Like Meyer, he is severely restricted and stays inside on oxygen most of the time. Lopez-Torres told TAC this week that the informal registry at BurnPits360.org has gathered information from 3,000 veterans who say they are sick.

“I think there is going to be a pretty shocking and a sizable number” if the VA’s registry does what it’s supposed to do, says Nick McCormick, legislative associate for the Iraq and Afghanistan Veterans of America (IAVA), which has been lobbying for the registry to start. “The registry will quantify the numbers.”

But where is it?

“The delay is deeply concerning, particularly when similar registries exist in the United States government. The lack of urgency and communication from the VA is even more troubling,” wrote Sens. Tom Udall, D-N.M., and Bob Corker, R-Tenn., who sponsored the registry legislation and shepherded it into passage after two years of effort. They sent their letter to VA Secretary Eric Shinseki in March in hopes of getting a firm launch date.

Their letter, which emphasized Corker’s “deep concern with the VA’s failure to diligently and expeditiously implement” the registry, according to his spokesperson, never got a response. Nor did the VA return multiple phone calls and e-mails from TAC for comment. The department web page designated for “VA’s Action Plan: Burn Pits and Airborne Hazards,” simply states:

The registry has been delayed. VA needs extra time to design and test the system to ensure functionality, data security and accessibility. Once a firm launch date is established, we will announce how to sign up for it.

It is no secret the department had initially resisted the registry. In a story TAC published in October 2012, VA Deputy Under Secretary for Economic Opportunity Curtis Coy was not only quoted casting doubt on the burn pit connection to post-deployment illnesses, but said a registry would be unhelpful. “Health registries can only produce very limited and possibly skewed results,” he told Congress.

Despite the hesitation, however, publicly available information indicates that the VA is indeed moving forward. It put out a working draft of the questionnaire dated March 18. At 27 pages long, the draft questionnaire canvasses in detail veterans’ deployment, home, and health backgrounds, assessing different exposures and current health needs. It is not restricted to veterans of the wars in Iraq and Afghanistan, but is also open to veterans who were stationed in Djibouti, Africa after September 11, 2001, and Southwest Asia after 1990, as well as veterans of Operations Desert Shield and Desert Storm in 1991.

Advocates who spoke with TAC said they were brought in early in the development phase for feedback, and were initially hopeful of the direction it was taking.

Daniel Sullivan brother, Sgt. Thomas Joseph Sullivan, died at 30 following a long bout with chronic illness upon returning from Iraq, leading Daniel to found the Sergeant Sullivan Center with his parents. Thomas had been suffering from “health complications that included chronic widespread pain, swelling, severe inflammatory bowel issues, and side effects of pharmaceutical treatments,” when he passed away in February 2009. A postmortem found that Thomas had widespread organ and cardiovascular degeneration that had not been previously diagnosed. The Sergeant Sullivan Center advocates for the recognition of toxic exposures and unexplained illnesses, and has been one of the groups in contact with the VA over the registry.

“They asked for feedback and we gave it to them,” Sullivan told TAC. He said that he and Torres participated in an online demo of the aforementioned questionnaire. “It looked like good first steps,” though the subsequent delay and recent silence about the rollout have been “disconcerting.” Sullivan asked a VA official at a recent veterans’ liaison meeting this week about the timeline. “Apparently they’re testing the IT and that might go on for another month,” he said. “It’s impossible to know anything more right now.”

Torres isn’t as sanguine. “I have a lot of mixed emotions about it,” she said. “I know [the registry] is not something they would have done willingly… our organization manages a registry for less than $300 a year, why can’t they do this? What’s the hold up?” “People are dying in the meantime,” she said. She hears from widows fairly regularly: “They are in their 20s—widows in their 20s.”

As though to prove her point, an April 23 headline on The Marine Corps Times announced that Marine Sean Terry’s family is blaming his death on esophageal cancer he got from the burn pits during his service. In fact, a doctor’s letter to his family said “there is more than a 50 percent likelihood” the exposures overseas were to blame, according to the family. He was a 33-year-old father of three.

Sgt. Daniel Meyer

Sgt. Daniel Meyer

Advocates like Meyer worry that the VA is putting off its responsibility because—like Agent Orange among Vietnam veterans—the exposure and resulting injuries represent a tremendous liability for the government. “They told us (the burn pits) weren’t so bad, but obviously that wasn’t the case,” he said. McCormick said veterans have learned the lessons of Vietnam, and groups like IAVA won’t quit until the registry is up and running, reaching everyone it needs to. If done right, the registry will help veterans get proper care and inform the VA where the greatest needs are.

“There is a sense of urgency to make sure the VA is up to speed on this,” he said. Especially as “the war in Afghanistan winds down, we want to make sure that no one gets left behind, no one is forgotten.”

Kelley Beaucar Vlahos is a Washington, D.C.-based freelance reporter and TAC contributing editor. Follow her on Twitter.