(WOMENSENEWS)--When she volunteered to fight disaster, Deborah Mitchell had no idea she was creating a health catastrophe for herself.
"When I helped at Ground Zero, all I thought about was saving the people who I hoped were still alive there," says Mitchell.
"As I dug through the rubble, I didn't think about the effects of the toxins I was inhaling. I didn't learn until months later that the eight days I spent at the site were among the ones when lead levels measured the highest."
Mitchell suffers from chronic sinusitis, stomach problems and headaches that have left her bedridden for days at a stretch and that last year forced her to take a semester off her job teaching marketing at Binghamton University in Binghamton, N.Y.
"Five years ago, I had none of these problems, but was an avid walker who went to the gym daily," she says.
After eight rounds of treatment at the Mayo Clinic in Rochester, Minn., Mitchell says she is frustrated and angry over delays in her screening, treatment and care.
"Because of miscommunication problems in the government, I wasn't diagnosed with these conditions until April 2003," contends Mitchell. "If I had received care right away, I wouldn't be as sick as I am."
Deborah Walker, deputy director of the World Trade Center Health Registry, did not respond directly to Mitchell's statements. She explained, however, that the New York City Department of Health and Mental Hygiene doesn't provide direct treatment in these cases.
"But we always do provide referrals to health care providers and, if those affected by 9-11 don't have resources for care, we offer them references to agencies that provide this treatment. We are very concerned about the health of these individuals, and about making sure they do get appropriate care."
Struggling for Treatment, Benefits
While researchers say the complete health impact of Sept. 11 won't be understood for another 20 years, studies show half of the estimated 40,000 volunteers and emergency workers who responded to the World Trade Center attacks--one-third of them women--are suffering from health troubles linked to their heroism.
As thousands of Sept. 11 responders still struggle for treatment, workers' compensation and benefits, many groups are trying to back them up.
As part of their efforts to get better care for responders, organizations--including the American Federation of State, County and Municipal Employees and the New York Committee for Occupational Safety and Health--are protesting the appropriations bill passed by the House of Representatives in June that rescinds $125 million in Sept. 11 workers' compensation aid.
"Many of the men and women who gave of themselves without thinking twice are just now developing illnesses," Rep. Carolyn B. Maloney (D-N.Y.) said this week. "Taking away this money without knowing exactly how much is needed to help is premature."
In October, the Senate will likely vote on the bill, which supporters say is justified because the need for aid is not as large as initially estimated.
More than a quarter of the total 10,420 Sept. 11th-related claims applications are being contested and the appeals process for a denied workers' compensation claim can take up to a year, says Jon Sullivan, a spokesperson for the New York State Workers' Compensation Board.
Aid Getting Blocked
Though more than $7 billion has been raised by charity groups and the government to help Sept. 11 victims, health advocates say the money isn't getting to responders who are uninsured, underinsured or who don't qualify for government-sponsored help.
On Sept. 10, the Washington-based Government Accountability Office found that a Department of Health and Human Services initiative called the World Trade Center Federal Responder Screening Program "accomplished little" because it stopped screening people in March 2004 and reached only 394 of its 10,000 intended beneficiaries: responders who were federal employees.
Studies at Columbia University (among the few to look at these health effects on a gender basis) show that pregnant women exposed to pollutants at Ground Zero had children with slightly reduced gestation time, head circumference, birth weight and length. While these effects are minor, researchers say they are statistically significant and that they plan to track them over time.
Female responders also say they have suffered health problems including irregular periods and breast cancer that may be related to the attacks.
The symptoms of some first responders can baffle even the best-trained doctors.
"When I went for treatment at the Mayo Clinic, they scraped pollutants out of my sinuses that the pathology department had never seen before," says Mitchell. "We could only guess it was a mix of dust and plastic and glass."
Clinicians have a hard time knowing if health problems are related to Sept. 11. "One of our long-term goals is to determine which of these health effects are Sept.11-related and which are not," says Mark Farfel, director of the World Trade Center Health Registry, which tracks the health of 71,427 responders, area employees, residents and schoolchildren.
Sherri Fiebert, an emergency medical technician from Queens who was involved in the cleanup, says she often wonders if she's suffering from Sept. 11 or not.
"When you begin to cough or feel nauseous, you never know if it's a bout of the flu or health trouble from working at Ground Zero," says Fiebert, who says she has had one colleague retire, a second lose her job and a third die due to health problems stemming from their work at the site.
Registry Tracks Ailments
The World Trade Center Health Registry shows that a quarter of registrants have suffered stomach trouble and 40 percent have sustained eye injuries. Psychological distress is 60 percent more common among responders than among other New York City residents.
More than half of Sept. 11 responders still suffer from breathing problems such as asthma and 20 percent have post-traumatic stress disorder, according to a September 2004 study by the Mount Sinai School of Medicine.
"When they smell smoke, they have flashbacks to the horrors of that day," says Jacqueline Moline, an assistant professor of community medicine at Mount Sinai.
Amid myriad frustrations, advocates for responders say they are also winning some victories.
In May, the World Trade Center Medical Monitoring Program, closed in April 2004, was resurrected by a new federal grant.
Run by the Mount Sinai School of Medicine and four other local health facilities, this program has screened and provided treatment referrals for 14,000 workers and volunteers (independent of the 15,000 firefighters screened by the New York City Fire Department). Funded for the next five years, the program aims to reach thousands more responders.
In June, New York passed a law entitling city or state workers who were injured or developed cancer, respiratory illness or certain skin conditions after working 40 or more hours at Ground Zero to receive a 75 percent disability pension. The same month, the American Red Cross said it would fund $16 million in treatment for 15,000 responders.
Meanwhile, Mitchell and others say they worry about out-of-state volunteers who may not realize why they are getting sick and may not get adequate treatment.
"I fear we have toxins embedded in us," says Mitchell. "And I fear we are never going to get them out."
Molly M. Ginty is a freelance writer based in New York City.
For more information:
World Trade Center Health Registry:
World Trade Center Medical Monitoring Program:
Congresswoman Carolyn B. Maloney--
Special Update on the 9/11 Recovery
Working for New York’s Fair Share:
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