Sarcoidosis

How Do Doctors Treat Sarcoidosis?

Sarcoidosis can be difficult to diagnose and treat because it often produces very few early signs that would alert a health care provider to its presence, and the signs that do appear often mimic other disorders. Doctors often diagnose sarcoidosis after ruling out other conditions through diagnostic imaging and laboratory testing. A biopsy of the affected organ to study granuloma cells often follows the initial diagnosis.

There is no known cure for sarcoidosis. Most individuals diagnosed with the disease do not receive ongoing treatment for it since the illness will frequently resolve on its own. Instead, doctors monitor it for progression and treat acute symptoms like painful skin lesions, elevated blood calcium levels, and sore joints.

In some cases, sarcoidosis will cause longer-lasting, chronic symptoms that require more aggressive treatment with corticosteroids (which reduce inflammation) or immunosuppressants (to blunt an overactive immune response). In addition, severe cases of sarcoidosis in the lungs can cause permanent scarring of lung tissue and make breathing difficult, which may require ongoing therapy.

Sarcoidosis in 9/11 Victims

The collapse of the World Trade Center towers on September 11th, 2001, released a toxic cloud of jet fuel chemicals, burning plastic, metal, glass, insulation, and other pulverized building materials over Lower Manhattan. For the responders, cleanup workers, and people who lived, worked, or attended school who breathed that dust on 9/11 and during the year afterwards, there has been a large increase in cases of sarcoidosis.

How Did 9/11 Toxic Exposure Cause Sarcoidosis?

Two factors likely account for the elevated prevalence of sarcoidosis seen in some 9/11 responders and survivors: the highly toxic mix of chemicals, gasses, and hazardous materials contained in the 9/11 dust plume and months-long periods of exposure.

The push by government officials to reopen Wall Street and to convince individuals to return to their homes, jobs, and schools in Lower Manhattan, despite dangerous dust and debris blanketing the area, may have served to expose tens of thousands of people to levels of toxins high enough to elevate their risk of developing sarcoidosis.

Even before 9/11, researchers suspected that firefighters, in particular, might face elevated risks of developing sarcoidosis due to their exposure to toxins while fighting fires. Since September 11, researchers have studied the medical records of more than 14,000 FDNY first responders who were exposed to toxic dust in Lower Manhattan.

They found 68 confirmed, diagnosed cases of 9/11-related sarcoidosis, which represents a higher-than-average incidence. The mean age at which firefighters developed the condition was 43.2 years. Only about a quarter of the study subjects had ever smoked (a sarcoidosis risk factor).

Studies have found 9/11-related sarcoidosis to be more prevalent in firefighters than in EMS workers. The highest concentration of diagnoses occurred among

firefighters who arrived at Ground Zero on the afternoon of September 11th, 2001, after the buildings had already collapsed. The median amount of time responders who developed sarcoidosis had worked on the rescue, recovery, and cleanup operations at a high-exposure site was four months—a month longer than those who did not contract the illness.

Increase of Sarcoidosis Diagnoses in 9/11 Victims

We continue to see more 9/11 first responders and survivors who have been diagnosed with sarcoidosis from dust inhalation and toxic chemical exposure due to their time spent in Lower Manhattan in the months following the terrorist attacks of September 11, 2001.

Hansen & Rosasco, LLP’s 9/11 attorneys have represented many sarcoidosis clients before the Victim Compensation Fund (VCF). We have secured non-cancer VCF payouts appropriate for the effects these related conditions have had on the health and lives of many survivors. 

What to Do if You Think You Have 9/11-Related Sarcoidosis

Sarcoidosis can be a difficult condition to diagnose because its symptoms often mimic other common illnesses and disorders. But if you were exposed to the toxic dust plume as a 9/11 responder or survivor and now have any of those symptoms, you might have the right to receive free medical care and significant financial assistance through two federal problems, the World Trade Center Health Program (WTCHP) and the September 11th Victim Compensation Fund (VCF). Taking the steps below can protect those rights.

Speak With an Experienced 9/11 Benefits Attorney About Your Condition

Neither of the federal 9/11 benefits programs mentioned above requires you to hire an attorney to receive benefits. But determining your eligibility for those programs can feel confusing and overwhelming. The easiest and most direct way to learn about your rights and options is to speak for free with an experienced 9/11 benefits attorney.

If it turns out that you suffer from sarcoidosis linked to your 9/11 dust exposure, an attorney can also handle the process of obtaining federal benefits for you.

Apply for Medical Coverage From the World Trade Center Health Program (WTCHP)

In 2011, President Obama signed into law the James Zadroga 9/11 Health and Compensation Act. The law created the WTCHP, a federal program administered by the Centers for Disease Control and Prevention (CDC) and the National Institute for Occupational Safety and Health (NIOSH) that would provide free medical screening and treatment for 9/11-related health conditions.

Individuals suffering from sarcoidosis derive significant benefits from the free medical monitoring and treatment services the WTCHP provides. The condition often needs to be monitored over years to track the effects granulomas may have on the organ where they’ve collected, and on a patient’s overall health. For no charge, WTCHP will track the course of an individual’s sarcoidosis and supply medication and therapies to treat symptoms.

WTCHP offers its services at medical facilities called Clinical Centers for Excellence throughout the New York City region. It also makes those services available to individuals outside the New York metro area through a Nationwide Provider Network of medical centers. All such services and treatments are free to individuals enrolled in the WTCHP.

If you suffer from sarcoidosis (or believe you do), you can apply to the WTCHP program by submitting an application and documentation reflecting your exposure to toxic dust and materials in Lower Manhattan or another 9/11 site. After reviewing your application, the WTCHP will notify you whether you have been admitted to the program. If you have, you can begin obtaining free medical services immediately. If not, you may have the opportunity to supply additional

information to demonstrate your eligibility, or to formally appeal the denial of your application.

If admitted to the program for a sarcoidosis diagnosis, you can also obtain certification of your condition from the WTCHP, which establishes your potential eligibility to receive financial compensation from the VCF.

Register With the VCF

The Zadroga Act also reauthorized the September 11th Victim Compensation Fund (VCF), a program that initially ran from 2001 to 2004 and paid financial compensation to families of deceased 9/11 victims and individuals who had suffered acute physical injuries in the attacks and cleanup efforts. The reauthorization of the VCF expanded the pool of eligible 9/11 victims to include the tens of thousands of individuals who had begun to suffer from illnesses linked to toxic dust and debris exposure.

The initial VCF reauthorization was for five years, and a subsequent law extended it for five more. Then, in 2019, on the heels of an official report that the VCF lacked adequate funding to pay existing and expected claims, President Trump signed into law the Never Forget the Heroes: James Zadroga, Ray Pfeifer, and Luis Alvarez Permanent Authorization of the September 11th Victim Compensation Fund, which guaranteed funding of the Fund for all claims submitted until October 1st, 2090. Today, you can rest assured that if you have a legitimate claim for VCF benefits, you will receive full payment.

Facing such a long time horizon, however, the VCF needs a way to project its expected financial needs well into the future. It accomplishes this by requiring

you to register with the VCF. Registering is not the same as filing a VCF claim. It is simply a way of notifying the VCF that you might file a claim in the future, and securing your right to file that claim at some time between now and October 1st, 2090. 

You can register with the VCF at any time, and you must register within two years of receiving certification from the WTCHP of your sarcoidosis or of being diagnosed with sarcoidosis by a medical provider participating in the VCF’s private physician process. (Families of individuals who died from 9/11-related illnesses must register within two years of their loved one’s death if the deceased was in the WTCHP and the cause of death condition was”certified”.)  If you or the deceased family member was not in the WTCHP, then the deadline to register and file a VCF claim is extended to the year 2090. If you do not register with the VCF before the deadline, you could lose your right to apply for VCF financial benefits at a later date.

But remember, you do not have to wait for certification or diagnosis of your sarcoidosis or any other health condition to register with the VCF. You can register even without having yet gotten sick. So long as you were potentially exposed to 9/11 toxic dust, the VCF encourages you to register today regardless of your current health condition.

So do we. Registration does not obligate you to file a VCF claim and does not waive any of your legal rights. You have nothing to lose by registering and potentially lots to gain. So, save your place in line with the VCF by registering today.

File a VCF Claim

Once you have registered with the VCF, you can file a claim for financial benefits at any time until October 2090 (in other words, the rest of your life). A claim is a formal request to the VCF for financial compensation, accompanied by documentation of your eligibility.

The VCF offers two types of compensation for successful claims. It pays for lost wages and expenses related to your 9/11-related health condition. And it pays for the pain and suffering you endured because of your 9/11 illness. For non-cancer conditions like sarcoidosis, the VCF will pay up to $90,000 for pain and suffering. For a cancerous condition, pain and suffering damages can reach $250,000. In addition, the VCF will make an award for economic losses such as lost wages, out-of-pocket medical expenses, and other financial losses caused by the 9/11 illness. 

Claims and supporting documentation can be submitted online or through mail or fax. If you suffer from multiple 9/11-related conditions, the VCF may pay compensation for each. If you already received payment for one condition, and have since been diagnosed with a second, you can amend your original claim to seek additional payment.

If you have registered with the VCF and have received certification of your sarcoidosis, we strongly urge you to consult with an experienced 9/11 benefits attorney before filing your VCF claim.

An attorney can:

• Assist you in collecting the evidence you will need to establish your eligibility.
• Prepare and submit a fully documented and persuasive claim on your behalf.
• Speak with the VCF about your claim and resolve any questions or requests for additional information.