When retired Nassau County Police officer Allison Beyerlein’s routine blood work confirmed low ranges of platelets – cells that assist management clotting and bleeding – three years in the past, she grew to become involved however by no means suspected docs would discover something out of the unusual.
When her platelet ranges dropped so low that her physician despatched her to the hospital emergency room, she realized in a different way. Beyerlein was recognized with acquired amegakaryocytic thrombocytopenia (AAT), one of many rarest blood problems on the earth. The sickness prevents her physique from producing platelets, leaving her at fixed danger of harmful bleeding.
Medical literature has documented solely about 100 instances of AAT worldwide.
Beyerlein’s case highlights a much bigger drawback. She was a part of a crew of first responders who spent weeks cleansing up particles after the Sept. 11, 2001, terrorist assaults on the World Commerce Middle. Nonetheless, the World Commerce Middle (WTC) Well being Program is neither reviewing nor certifying new diseases that could be tied to Floor Zero exposures after the 9/11 assaults. That leaves sufferers with rising situations that might be associated to such publicity, like Beyerlein, with out program protection or monetary help.
The rubble of the World Commerce Middle smolders following the terrorist assaults on Sept. 11, 2001, in New York. A hijacked airplane crashed into and destroyed the landmark construction. (Picture by Porter Gifford/Corbis through Getty Pictures)
Porter Gifford/Corbis through Getty Pictures
“At first, I simply couldn’t perceive how one thing so uncommon may occur to me,” Beyerlein informed ABC Information. “It wasn’t till docs began asking about my time at Floor Zero that I noticed this may be linked to 9/11.”
Beyerlein mentioned she first arrived at Floor Zero on Sept. 12, 2001, the day after the assaults, and returned there repeatedly over the course of months. She described her publicity to Floor Zero as “frequent and extended.”
The WTC Well being Program, created underneath the James Zadroga 9/11 Well being and Compensation Act of 2010, gives medical monitoring, remedy and monetary compensation for responders and survivors with situations it has formally licensed as linked to 9/11 Floor Zero publicity. Such certification signifies that this system determines that scientific proof connects a illness to that publicity and subsequently makes sufferers eligible for remedy protection and compensation.
Most cancers, bronchial asthma and plenty of psychological well being situations are at present licensed by the WTC Well being Program. However AAT is not licensed, despite the fact that research present that AAT might be brought on by exposures to chemical substances like benzene, a identified toxin and carcinogen that was current within the mud and particles at Floor Zero.
This has raised concern amongst some advocates who say that AAT ought to be reviewed to find out if 9/11 Floor Zero publicity can play a task in an individual growing the illness.
“That is precisely why we’d like a functioning evaluation course of,” mentioned Ben Chevat, govt director of the nonprofit watchdog group 9/11 Well being Watch. “If uncommon illnesses like Allison’s are displaying up in responders, they need to be evaluated directly.”
Whereas there could also be different AAT instances among the many 9/11 first-responder group, based on advocates, Beyerlein’s is the one one substantiated. Medical doctors have decided that her sickness is not genetic, making environmental publicity a possible clarification for it.
Earlier than the present administration, advocates, physicians and sufferers mentioned that they might repeatedly meet with program officers to assist collect knowledge and proof about new diseases that may be added to the WTC Well being Program’s checklist of licensed situations. That knowledge would then be reviewed by consultants on the Nationwide Institute for Occupational Security and Well being (NIOSH), a federal company that researches work-related well being dangers.
Officer Allison Beyerlein stands at Floor Zero on Sept. 12, 2001, the day after the terrorist assaults on the World Commerce Middle in New York Metropolis. (Picture courtesy Allison Beyerlein)
Allison Beyerlein
Though it’s typically not attainable to find out a precise reason behind a person’s sickness, if the information confirmed a robust potential hyperlink to 9/11 Floor Zero publicity, the sickness might be added to the official checklist of lined situations underneath the WTC Well being Program.
Many advocates, docs and survivors of Floor Zero publicity who work throughout the program declare the evaluation course of is now stalled underneath a federally mandated “communications pause,” throughout which no new situations might be thought of for certification since there might be no presentation or dialogue of proof by NIOSH.
Advocates say which means the method so as to add new situations to the WTC Well being Program – together with AAT, in addition to some cardiovascular illnesses, autoimmune problems and cognitive issues – is at a standstill.
When contacted one week in the past by ABC Information, a spokesperson for the Division of Well being and Human Providers (HHS) mentioned there isn’t a communications pause and that the certification course of is transferring ahead.
“There isn’t any communication pause. That was lifted on February 1st and that was communicated all the way down to all divisions,” the HHS spokesperson informed ABC Information. “The World Commerce Middle well being applications and medical facilities are persevering with to offer providers to program members at the moment and this system is accepting, reviewing and processing new purposes and certification requests.”
Former Congressman Peter King, a Republican from Lengthy Island, New York, and one of many earliest champions of the Zadroga Act, informed ABC Information that regardless of the HHS claims, there may be successfully a communications pause in place throughout which no new diseases might be licensed underneath the WTC Well being Program.
UNITED STATES – NOVEMBER 17: Sen. Chuck Schumer, D-N.Y., left, and Rep. Peter King, R-N.Y., speak throughout the press convention calling on passage of the James Zadroga 9/11 Well being and Compensation Reauthorization Act outdoors the Capitol on Tuesday, Nov. 17, 2015. The invoice gives an extension of healthcare advantages for all first responders affected by most cancers and different power illnesses from publicity at Floor Zero. (Picture By Invoice Clark/CQ Roll Name)
Invoice Clark/CQ-Roll Name, Inc through Getty Imag
“HHS can name it what it needs. In observe, there isn’t a communication in any respect with the 9/11 group. It simply appears to me that it’s a stonewall,” King mentioned.
He added that whereas diseases like Allison’s would possibly in the end be discovered to not happen extra typically in 9/11 responders, each petition deserves a immediate evaluation. With out it, for instance, responders and their docs can not know whether or not rising situations could match a bigger sample, mentioned King.
“For sufferers, the uncertainty is sort of as damaging because the sickness itself and the longer this system stays silent, the extra responders doubt its promise,” King mentioned.
An ABC Information request for remark despatched to HHS concerning former Rep. King’s claims didn’t instantly obtain a response.
Ben Chevat of 9/11 Well being Watch informed ABC Information that the WTC Well being Program was designed to develop and adapt as new well being issues surfaced amongst 9/11 responders, but in the present day it’s caught in impartial. With out energetic surveillance and well timed choices, the system dangers failing these it was created to serve, he mentioned.
Chevat and different advocates have pressed for motion. In a current letter Chevat despatched to HHS Secretary Robert F. Kennedy Jr., he claimed that petitions have gone unanswered for months, surveillance of recent situations has stopped, and this system has not defined publicly how it’s monitoring situations probably linked to 9/11 Floor Zero publicity.
“This system should comply with the necessities underneath the statute and make these pending determinations,” Chevat wrote. He informed ABC Information that he has but to obtain a response to his letter.
The south tower of the World Commerce Middle collapses Sept. 11, 2001, in New York Metropolis.
Thomas Nilsson/Getty Pictures
The final communication Beyerlein mentioned she obtained from the WTC Well being Program was in January of this 12 months and didn’t provide protection or compensation for her sickness, however mentioned they might contact her if “a attainable WTC-related situation was recognized.”
With out certification, Beyerlein can not get WTC Well being Program help paying her medical payments or obtain different compensation for the toll her illness has taken on her life, ought to it’s proven to have been brought on by her Floor Zero publicity.
“I sacrificed as one of many first responders, however now I face an ongoing wrestle simply to have my illness acknowledged,” Beyerlein informed ABC Information. “This illness has modified the whole lot about my every day life. I dwell each day understanding I may bleed with out warning and but the federal government can’t resolve if I deserve care. It isn’t truthful.”
“I did my job at Floor Zero. Now they should do theirs,” Beyerlein mentioned
