September 11, 2001 is a date that Americans have vowed never to forget. Many people still bear the emotional and physical scars from the attack on the World Trade Center and the weeks of rescue and recovery—and years of rebuilding—that followed. People were injured, lost family members and friends, witnessed horrific tragedies, and had the realizations that their lives would never be the same. Some of the first to arrive on the scene were firefighters, law enforcement officers, and EMTs. None of their training could prepare them for what they saw then and in the weeks that would follow. They acted selflessly, making endless sacrifices, which for many included their own lives. These heroes were also some of the last to leave “the Pile” and many of them are still living with reminders of their sacrifices 15 years later.

In the rescue efforts at Ground Zero, the air was thick with debris and toxins. Reports have shown more than 400 substances found in samples of the WTC dust. Many rescue workers reported that they did not wear dust masks, or used them minimally. Their lungs were exposed to everything from particles of fiberglass and asbestos to combustible gases to heavy metal dusts. In addition to the injuries some rescue workers sustained—injuries from digging through the tons of collapsed steel—even more developed illnesses like cancers and respiratory conditions. Some illnesses developed even years after they’d left Ground Zero. None of this even begins to cover the emotional trauma that so many have to live with.

Several years after the attacks, media outlets had reported on the deaths of rescue workers from sarcoid-like respiratory diseases. The infamous “WTC cough” was a blanket diagnosis for anyone who experienced respiratory problems from dust inhalation at the WTC site, but it was clear some people were developing more serious medical conditions. Just over 14,000 FDNY rescue personnel involved in WTC rescue missions were monitored in the five years following the attacks. A total of 26 developed sarcoidosis-like symptoms at some point during those first five years. All of these workers were present in the 72 hours after the WTC collapse, when concentrations of toxins and particulate matter in the dust were highest. All 26 workers were diagnosed with granulomatous pulmonary disease, and 23% presented with sarcoidosis-type symptoms in other organs as well.

The etiology of sarcoidosis is unknown, however the origin of the FDNY workers’ respiratory problems was proven as a result of September 11th. All had clean chest scans and health reports prior to the attacks. Because of this, physicians deemed their condition “sarcoid-like granulomatous pulmonary disease,” or WTC-SLGPD instead of sarcoidosis.

Other studies have shown similar results. A study completed in 2007 found 34 confirmed cases of sarcoid-like granulomatous disorder in the population enrolled in the WTC Medical Monitoring and Treatment Program, which included some FDNY and additional rescue workers. Another 51 of the respondents in the study self-reported sarcoid-like granulomatous disease or symptoms, but did not yet have a confirmed diagnosis. Sarcoidosis and sarcoid-like disorders have become more prevalent in this population as the years have passed. The ambiguity of diagnosing either sarcoidosis or WTC-SLGPD means that the statistics are not likely representative of the actual population affected.

The James Zadroga 9/11 Health and Compensation Act was passed in 2010 and signed into law at the beginning of 2011. The act funded a healthcare program for first responders and survivors of the attacks. It was named after James Zadroga, an NYPD police detective who died from a respiratory illness he developed in the years after working at Ground Zero. The bill was controversial for several reasons, and advocates had to spend years lobbying while Congress argued over how funding would be allocated. Finally, the solution came from both closing of a corporate tax loophole and a 2% tax on certain foreign imports.

The passing of the bill, however, was a short-lived victory. The James Zadroga Act was set to expire in December of 2015. If it were not renewed, healthcare and compensation for those exposed to the hazards of Ground Zero would end by late 2016. Renewing it should have been an easy decision, since many of the conditions covered were either permanent disabilities or chronic illnesses that would require lifelong care. Unfortunately, this was not the case. While America had vowed to never forget the victims of 9/11, Congress overlooked the selfless heroes, who lived with daily reminders of their sacrifices.

For months before the bill expired, first responders were making rounds up and down the halls of congress; some had oxygen tanks, some were in wheelchairs, and all lived with daily reminders of their sacrifices. The spoke to politicians who opposed the renewal, including those who had supported the bill originally in 2010 but since forgotten their commitment to supporting the first responders. These heroes never should have had to fight to be remembered, but their hard work paid off and the bill was reauthorized with an extension of 75 years. With each passing year, more cancers and respiratory diseases are added to the list of covered illnesses. Unfortunately, each year there are also more diagnoses, as many of the cancers and chronic illnesses covered can take years to develop or be discovered. Part of the bill covers “interstitial lung diseases,” which should cover sarcoidosis and sarcoid-like conditions, however many first responders have to fight to prove that their illness is a result of working at Ground Zero. Getting the Zadroga Act renewed was just one victory on the long journey of ensuring that those who served our country are taken care of in thanks for their sacrifice.

FSR wants to recognize the hard work and selflessness of these individuals who served our country in one of its hardest times. Many sarcoidosis patients were firefighters and first responders, whether they served in New York or across the country. It’s important they are recognized and not forgotten after their service has ended.

To those who risked their lives to save others, we thank you for your service.

For more information on current advocacy efforts and how you can help make sure our heroes get the care they need and deserve: