How a Rare Disease Became a 9/11 Related Illness

Robert A. Grochow
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July 1, 2016 marked the fifth anniversary of the World Trade Center Health Program, which is part of the larger federal Victim Compensation Fund. In recognition of this milestone, the architect of the program, Dr. John Howard, reflected on the Program’s past performance and its vision for the future. As it embarks on its sixth year, the Program serves close to 75,000 patients. Participants are those who were exposed to the toxic World Trade Center dust and debris. First Responders and Survivors (i.e. residents, office workers in the area, etc.) with an illness recognized by the Victim Compensation Fund are eligible for treatment at one of its clinics. Those with certified and covered injuries can also apply and receive compensation under the same Federal Fund.

The Program’s policies and guidelines rest on its scientific foundation. A portion of the Program’s funding supports scientific research to study the physical and mental effects of 9/11 exposure. In furtherance of its goal to provide adequate care to its patients, Dr. Howard receives petitions from interested parties to add conditions to the List of Covered Conditions. Petitions undergo rigorous review and consideration, after which point Dr. Howard releases a final determination.

A Case Study of Wegener's Disease and a 9/11 Responder

In 2009, one of our World Trade Center clients was diagnosed with a life-threatening disease known as Granulomatosis with Polyangiitis (“GPA”), or Wegener's Disease. This rare disease is characterized by inflammation of the blood vessels; it often involves the upper respiratory tract, lungs, and kidneys.

After the World Trade Center attacks, the National Guard sent our client to participate in the rescue and recovery efforts. He worked in and around Ground Zero for several months to secure the heavily contaminated area. Although enrolled in the World Trade Center Health Program, our client was unable to receive free medical treatment for his condition because it was not currently recognized as a Covered Condition under the Program.

The disease is expensive; it severely compromised the client’s immune system and requires a team of specialist doctors. Given his extensive exposure to the World Trade Center dust and debris, we felt his case warranted further investigation.

Our Petition for the Inclusion as a 9/11 Related Illness

We reached out to a broader community of lawyers representing 9/11 Victims to find out if they had clients with the disease. Our search returned at least 11 cases. We related the information to one of our contacts, a physician and chairman of the World Trade Center Medical Subcommittee. Given the disease’s estimated annual incidence in men of 8.4 cases per million, our finding of 11 cases in this particular subpopulation, and review of additional evidence and collateral material, a petition was submitted to Dr. Howard.

The Fund ultimately accepted the disease as a Covered Condition; it exists within the currently covered group of illnesses known as interstitial lung diseases. In his response to the petition, Dr. John Howard indicated that the Program would undertake a clinical review of the Wegener's Disease cases.

As a result of these efforts, our client and the other 11 patients that have this disease can now receive life-saving medical treatment under the World Trade Center Health Program; they can also receive much-needed compensation under the Fund for their illness.

Behind the Name

Interestingly, Wegener’s disease was initially named after German pathologist, Dr. Wegener, who described the disease in the 1930’s. Recently it was discovered that Dr. Wegener had possible connections to some of the Nazi-era medical experiments on concentration camp prisoners. As a result of the discovery, the disease was renamed Granulomatosis with Polyangiitis, although the name “Wegener’s Disease" continues to be used.


On the eve of the WTCHP’s fifth anniversary, and the recent extension of the Program until 2090, we reflect on the continued support required by those injured by the WTC dust and debris. We thank the scientific community embarking on this rigorous research, and we offer our continued support in furtherance of our advocacy for the WTC community.

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Over 300,000 people may still qualify for a payout from the 9/11 Victim Compensation Fund and free health benefits from the World Trade Center Health Program. Speak with our 9/11 attorneys today to see if you qualify.
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