TB Week: Survivors and allies recount illness, treatment, and loss

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In the week leading up to International Tuberculosis Day, which commemorates the discovery by Robert Koch of the cause of the disease in 1882, Science Speaks will look at issues, events and efforts to confront this lasting and global health threat.

When South African nurse Pat Bond got sick in 2010, doctors treated her for pneumonia, but in the months that followed,   she only got worse.

Bond made her own decision to get a chest X-ray in early 2011, which led to her diagnosis of multi-drug resistant tuberculosis. Her ordeal was just beginning.

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Pat Bond

On Monday in Washington, DC, Bond recounted the effects of the treatment that followed at a USAID-sponsored discussion featuring survivors of tuberculosis, one of the oldest and deadliest infectious diseases in the world.

Her hearing deteriorated, a common side effect of one of the drugs, and she began to suffer painful osteoarthritis.  Depression was another side effect.  Like many drug-resistant TB patients, she was unable to work and lost her job.

“I’ve lost my hearing, I’ve lost my job, my reason for living,” said Bond, who now wears two hearing aids.  “I’ve suffered so many losses, and I’m trying to keep my head above water.” Her employers refused to take responsibility for her illness, she added, claiming she could have gotten infected anywhere.

Although Bond was declared free of TB in 2012, the drugs left her more susceptible to other infections.

“Whatever goes around, I’m getting, because I don’t have a reactive immune system anymore,” she said.

Bond is now  an advocate with TB Proof, a non-profit in South Africa that focuses on educating health care workers and others about occupational exposure to TB.

Her colleague Dr. Bart Willems, also a former TB patient , and also at the Monday discussion explained that South Africa’s Compensation for Occupational Injuries and Diseases Act requires employers to pay for an employee’s expenses incurred from disease exposure, but in turn, employees are unable to take an employer to court for their illness.  As a result, Bond’s expenses were partially covered, but she also had to bear some of the costs of her illness on her own.

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Mildred Fernando

Mildred Fernando, tuberculosis survivor from the Philipines, diagnosed at 19, also spoke of loss.

In the  course of a decade spent battling extensively drug-resistant tuberculosis, she  lost part of her hearing, to treatment, part of her lungs, to the disease. During her own illness, she also lost her father to multi-drug resistant tuberculosis.

She even lost her natural skin tone when one of the drugs in her regimen turned her skin, tears, and sweat orange.  Her skin remains permanently discolored, she said.

Fernando was finishing up her last semester in college when she was diagnosed with TB in November 2001.  Like many Filipinos, she sought care and treatment from private facilities in her home district.  Her doctors put her on first-line TB drugs based on x-ray results, and continued to put her on different treatments every few months when they saw that she wasn’t responding to drugs that were supposed to work.  It wasn’t until four years after her initial diagnosis that she was found to be infected with drug-resistant TB. By that time, her father – who was being treated by the same private physicians – had died from severe hemoptysis, due to his multidrug-resistant tuberculosis.

In 2006 she was referred to the Tropical Disease Foundation in Manila, and an 18-month-long treatment for extensively drug resistant – XDR TB —  began in 2007.  On several occasions, coughing blood, she was hospitalized.  In 2008 she was declared free of TB, but then was discovered to have relapsed.  A second, two year-long treatment regimen began, and this time Fernando was confined to the hospital for six months, living with an intravenous tube in her arm for drugs during that time.  Surgeons removed part of her right lung. Her treatment ended in May 2011, her illness having eaten up a third of her life.  She has been working Management Sciences for Health, an international nonprofit organization, since 2011.

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Dalene von Delft

South African pediatrician Dr. Dalene von Delft also recounted her experiences as a multidrug resistant tuberculosis patient. At times her treatment made her so ill, she said, she preferred the disease over the treatment.  Read more about her experience here.

Her husband, Dr. Arne von Delft also spoke, saying that out of pocket TB expenses can range from $50,000 to $250,000. The vast majority of TB patients are unable to pay, he said, especially when they’re too sick to work and when they have no job protection.  The costs become even higher when dealing with drug-resistant forms of TB. In South Africa, he said, less than five percent of tuberculosis  is multidrug-resistant, but multidrug-resistant tuberculosis eats up 55 percent of the TB budget.

While the prevalence rate of drug-resistant TB has stabilized in South Africa in recent years, Arne von Delft  said,  incidence is on the rise.  Isolation facilities are overrun, and in some provinces, waiting lists for XDR-TB treatment  prompted  Bill Gates to say on  visiting a facility in KwaZulu Natal, “This is hell, and hell has a waiting list.”

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