Thirty-four-year-old Karim works long days as an investment adviser, and when he doesnāt burn the midnight oil, he plays basketball or goes to the gym, hangs out with friends, or heads to coffee shops. You wouldnāt know he has an especially tough-to-treat illness.
āI have multiple-drug-resistant tuberculosis,ā he explains.
Itās called that, because at least two of the most potent drugs conventionally used to squelch the tuberculosis bacteriumĢżĢżon the strain of the illness that Karim has. So he needs to take a combination of drugs, with harsher side effects, for 18 months. Thatās two to three times longer than the traditional treatment for tuberculosis.
(Photo by Microbe World/flickr)
āIt has been a very stressful treatment process and a lot to deal with, but, thank God, itās all going really, really well,ā says Karim, who requested that NPR not use his full name out of concern he could be stigmatized for being a carrier of a disease that many people donāt understand.
While Americans debate whether we should quarantine people who might have Ebola but clearly arenāt contagious,Ģżothers wander among us who are infected with tuberculosis ā another disease thatās highly communicable in some forms. Close to 10,000 people in the United States have TB.
Karim doesnāt know how he became infected with TB bacteria, though thereās a good chance it was from someone in Pakistan, where he lived until age 4. Millions of people worldwide harbor aĢżĢżfor decades ā it only shifts to an active form in some of them when, for one reason or another their immune system can no longer keep the bacteria in check.
After Karim was diagnosed with infectious TB in Aug. 2013, New York Cityās health department took over his treatment ā giving him powerful medications and mandating two weeks of home isolation.
Once tests confirmed that the drugs had beaten back the bacteria in his lungs to a noncontagious level, he got the āall clearā to move around the city freely again.
Today, he continues to take three very powerful antibiotics every morning, while an official from the health department watches him take the pills, via a smartphone. Itās the cityās standard practice for all TB patients.
āIn the beginning, I was kind of frustrated with having to report or show that Iām taking my treatment all the time,ā Karim says, ābut at the end of the day this is something that could get out of hand. You just donāt want to risk it. It is a highly contagious disease, and if youāre not taking your meds, youāre just putting other people at risk.ā
The state of New York allows the city to impose a strict quarantine on TB patients; some can even be detained in a lockup at Bellevue Hospital. But those drastic steps are only taken with highly infectious people who repeatedly donāt take their medications ā a small handful of people each year, according toĢż, head of the New York City Health Departmentās bureau of tuberculosis control.
āMost of our patients that get to that point have had significant substance abuse issues or mental health problems that are not being addressed,ā Burzynski says. āThose are the reasons theyāre being nonadherent.ā
But most of the cityās 650 or so residents each year who have active TB manage their treatment like Karim. Only a small number of people very close to him know he carries the disease. He thinks even if he explained to friends and colleagues that he isnāt contagious anymore, theyād still treat him differently. He worries it could affect his business relationships.
āI donāt blame people,ā Karim says. āI donāt get angry. I understand. There are parts of my family ā when they found out, there was kind of a stigma there. I donāt think thereās enough information about it.ā
All the news about the Ebola virus has made both Burzynski and Karim think about how people understand infectious diseases. Burzynski says it makes sense that people are afraid of Ebola ā itās frequently lethal. But looking more closely at the TB experience could ease some of those fears.
āWe know that patients with tuberculosis are not infectious, except when they have a high degree of disease thatās not being treated and theyāre coughing,ā Burzynski says. āWe know that persons with Ebola disease are only infectious once they develop symptoms and transmit the disease through the spread of bodily fluids. So thereās really no reason to quarantine somebody whoās not a high risk to the public.ā
Meanwhile, Karim is looking forward to a day, he hopes early next spring, when his 18-month drug regimen will be finished, and heāll be free of TB. He says at that point heāll tell more people about his ordeal ā and do more for an organization heās started working with thatās trying to find better, shorter treatments for the disease.
This story is part of a reporting partnership with , andĢżKaiser Health News.