For the first time in over twenty years New York City’s has seen a rise in the number of new tuberculosis cases. Public health advocates warn that continued complacency about the potentially deadly, but curable disease could set the stage for more lost ground after a generation of progress.
Because TB is a disease that has a foothold around the world, health officials say it’s critical that immigrants feel comfortable being screened for TB and to be treated when its required. Local officials are concerned that the Trump administration crackdown on immigrants could drive them deeper into the shadows off the public health radar.
Earlier this year Erica Lessem, with the non-profit advocacy group Treatment Action Group, laid out for New York City Council Health Committee why it was so critical the city get ahead of the uptick in new TB cases.
In 2016 there were 565. Last year there were 613. “TB is airborne and infectious meaning anyone who breathes is at risk,” said Lessem. “But, as you mentioned chair, TB disproportionately effects the most vulnerable, those with weakened immune systems. People living in crowded settings and our immigrant communities.”
Lessem continued, “Despite being preventable and curable TB is on the rise in New York for the first time in 25 years. Also increasing at a rapid pace are cases of drug resistant TB which are more difficult and costlier to treat. A single average case of drug resistant TB cost almost $300K to treat. This resurgence of TB is the direct result of underinvestment in the public health response.”
In an exchange with Health Committee Chair Councilman Mark Levine former City Health Commissioner Dr. Mary Bassett described how the backsliding in TB funding coincided with an upward spike in the disease.
“First, over the last yen years funding for tuberculosis control efforts has declined by nearly 50 percent, including a 20 percent state reduction last year and a proposed reduction for FY 19,” Bassett said. “This particularly concerning because for the first time in several decades we are seeing an increase in TB cases in New York City.”
“It has been cut because of the state’s budget in the prior fiscal year, correct?” asked Levine.
“It has been cut and cut over the last decade,” replied Bassett. “Reductions in federal funds, reductions in state funds, reductions by the city as well,,,We have cut the number of our staff in half. We now only run two clinics full time. Two clinics are opened on a part-time basis, so we have four clinics city-wide and as I have said there’s been an uptick.”
Bassett continued, “For those of us who have been around awhile this has an eerie echo of prior experiences where the TB program was cut, and we saw the rates if TB go up. We don’t want to see that again.”
New York City is home to roughly a half-million undocumented immigrants, who rely on the city’s municipal hospitals for their health care. Dr. Mitchell Katz, CEO and President of New York City’s Health + Hospitals says his system is already seeing evidence that President Trump’s crack down on immigrants has resulted in immigrant families avoiding the health care system for fear of being deported.
“Are you concerned about a perfect storm, where we have seen cutbacks on free testing and this other aspect you describe, when people will be hiding in the shadows? Does that concern you?” WBGO asked Dr. Katz.
“It does concern me. In general immigrants are healthy people,” said Dr. Katz. “You have to be a rugged individual to be able to survive as an undocumented person in this country. But It only takes one person who becomes exposed to tuberculosis, is sick and exposes other people and all of the sudden you have a whole group of cases. It can also be about the flu, right?”
Dr. Katz continued, “It can be about whether or not people are coming forward to have flu diagnosed, whether they are getting their flu shots or are avoiding getting shots because they don’t want to risk a public charge. They have fears about who is in the hospital. There are a whole range of things. What the country needs to say is that when it comes to healthcare there are no barriers around immigration because there are no barriers between people on the bus, no barriers between people on the subway or on the street. And therefore, we want everybody to be as healthy as possible.”
A serious communicable disease, TB doesn’t know borders or boundaries. Its impact extends well beyond the individuals it afflicts. Friends, family and work colleagues, all have to be screened. That’s something Kate O’Brien, a broadcast engineer for CBS Sports and mother of two, knows all about. She returned to the lobby of Mount Sinai Hospital on New York City’s Westside to share her story about how a missed TB diagnosis forever altered her life.
“I lived here for over two months, I would say about 75 days from Jan. 19 until April 4, 2015,” O’Brien recalled. “My symptoms for tuberculosis, I have to say this over and over again, were very, very standard tuberculosis symptoms. I had night sweats. I had decreased appetite and I was coughing constantly. And I was like what is the deal. I need to get in with a doctor.”
She continued, “So I switched to a new primary care physician who didn’t know me, and he didn’t want to do a chest X-ray even though I was saying I was coughing up blood and stuff because I was pregnant. That’s not uncommon. Had I been X-rayed I would probably had been diagnosed a lot sooner, but over and over you will see my pregnancy really impacted my care negatively.
O’Brien says that even as she got sicker, she had a hard time getting doctors to hear her like she needed to be heard.
“There is an expectation when you are pregnant that you should expect discomfort,” she said. “There is an expectation that women in pregnancy are in discomfort, expect discomfort—should expect pain and it is very difficult to try and convince people that this is more difficult than should be. This is rougher. It is difficult to get a sense of urgency I feel, or it was difficult for me in my experience. But when I talk to other women it seems that’s something, they feel too…. And, I just don’t fit the typical demographic of someone who has tuberculosis.”
O’Brien said there’s a need for basic public education about TB.
“For an airborne disease people would realize that anybody can catch it and that it is easy to catch it, despite what I told you about not spreading it to my family, tuberculosis is airborne and you know people of similar social whatever tend to hang out but this is New York City and I have traveled a lot.”
She continued, “I had been to Europe a lot and I want to go somewhere else, so like my husband was like it was all my idea. We went to Hong Kong, Malaysia and Singapore and people point to that. And it could have been that. It could also have been trips I took to London’ London has a TB problem. It could have been trips I took to Toronto. We went to Portugal. It could have been anywhere.
These days it’s O’Brien’s upbeat energy that’s contagious. Now, she recalls here initial intake with state public health officials as a humorous anecdote.
“The guy on the phone with me was from the New York Department of Health,” recalls O’Brien. “He’s talking to me like ‘ok, so tell me about where you work and I was like ‘ok, I work in a small soundproof edit room’ and he’s like ‘oh, just you?’ and I am like ‘no, there are producers walking in and walking out, graphic designers walk in and walk out. Lots of people come in and walk out and they close the door.’ And he’s like ‘that sounds like we should really investigate it.’ I am like that ‘sounds pretty bad.’
“But my managers were great, and they were very supportive,” she said. “I do have to say that. I really did feel like when I talked to them that they were really concerned about me dying and my baby. They had like a big meeting in the auditorium and they couldn’t say my name you know. But they were like somebody you know with blah, de blah. Of course, everybody knew it was me. Like who do you think it was? The girl that was like asking around like a skeleton coughing all over the place? But everybody was so great it didn’t matter and now I can laugh about it.”
O’Brien’s battle with TB cost her one lung and has made her a strong proponent for universal health care coverage so as to remove any impediment between health care and people no matter their origins or immigration status.
“When the government is not being kind to you how can you expect people to trust public health or when you think the government in trying to find out a reason not to keep you here?” asked O’Brien. “I just don’t understand how we could expect people to trust that public health is going to have their best interests in mind when other governmental entities are actually working against you.”
According to the CDC a quarter of the world’s population is infected with TB. In 2016 10.4 million people came down with the disease that caused 1.7 million deaths the same year. The disease is the leading cause of death for the HIV infected. Here, in the US, in 2016 there were over 9,000 reported cases.