Free care for heart, autoimmune problems after 9/11 exposure to toxic substances? A decision is coming

Thousands of people with certain autoimmune and cardiovascular conditions due to exposure to toxic substances after the 9/11 attacks could qualify for free health care if federal officials approve requests to expand coverage under the World Trade Center Health Program.

Medical experts petitioning for the changes also said such approvals could help, in particular, with struggles to afford steep prescription medication costs.

The decision from the National Institute for Occupational Safety and Health is expected in the next several months, according to an agency spokeswoman.

Ten months ago, physicians for several regional health programs that treat people who survived the terror attacks of Sept. 11, 2001, or responded in the aftermath sent two petitions to the agency, part of the Centers for Disease Control and Prevention, lobbying for the changes.

Authorized until 2090, the program provides free health monitoring and treatment for those who have conditions that NIOSH has certified as linked to such exposure. That includes dozens of cancers, along with respiratory and digestive conditions, acute traumatic injuries and mental health conditions. 

Dr. Jacqueline Moline, who works at Northwell Health in Queens and directs its WTC health program, said it’s been frustrating to wait for a decision while more people are getting sick and having trouble obtaining care.

"I think it would certainly give them easier access and remove the financial burden," Moline said of the proposed changes. "It's challenging enough to deal with these illnesses without having to worry about how you're going to pay for the very specialized medicines that they need to take."

The physician, who signed both petitions, added: "People are having difficulty with treatment. That's why we push for these things."

The WTC Health Program, established by the James Zadroga 9/11 Health and Compensation Act of 2010, has identified about 4,402 people with cardiovascular diseases and 550 people with autoimmune diseases that would be helped by the proposed changes, according to the petitions.

While they wait for a decision, some people, especially those without health insurance, "may not be able to afford the medications that are needed for these conditions," said Dr. David Prezant, chief medical officer for FDNY.

Prezant, who signed the petitions, also said that while a person's current health insurance may cover surgery and tests, it might not cover medication. 

The cardiovascular and autoimmune conditions under consideration for inclusion in the program are covered now only if associated with a medical problem that already is approved for coverage, according to the petitions.

Examples of conditions that could be added to program coverage under the petitions include cardiovascular conditions such as myocardial infarction, ischemic congestive heart failure, arrhythmia, stroke and peripheral vascular disease; and autoimmune diseases that include lupus, rheumatoid arthritis and myositis.

For the time being, those affected by the conditions "are on their own for their treatment," said Michael Schreiber, health and safety officer for the Uniformed Firefighters Association, a union that represents FDNY members.

"It's hard to sit back and wait. . . . This is not a program where there's a presumption on any condition and there's a high bar for adding conditions to the program. That's simply a cost issue," said Micki Siegel de Hernández, a national deputy director for the Communications Workers of America, a union that represents thousands affected by the 9/11 attacks.

Both petitions cite peer-reviewed, published studies showing a connection between the conditions and exposure to toxic dust resulting from the 9/11 attacks, records show.

Prezant said numerous such studies of WTC Health Program enrollees showed "an increased incidence of these diseases compared to the general U.S. population." 

Before NIOSH makes a decision, scientists at the agency conduct an evaluation using studies to determine whether the health conditions are substantially likely to be linked with 9/11 exposures, records show.

Several years ago, NIOSH turned down a petition to add autoimmune diseases to the list of covered conditions, likely because the FDNY was the only group to study a link, according to one of the petitions.

But advocates for the changes said they are confident that evidence is strong for a decision in favor of the petitions — one they hope comes soon.

Prescription medications that treat autoimmune conditions can come at a steep price for the uninsured, according to Prezant. He pointed to prices on a prescription drug discount provider's website to demonstrate that two medications for treating rheumatoid arthritis can cost thousands of dollars a month in such cases.

NIOSH's spokeswoman said the agency is working through a backlog of petitions after putting a two-year pause on the evaluation process — a pause lifted last summer — to focus on revising the policy of adding noncancerous health conditions to the WTC Health Program.