“I was very depressed,” said Tanwa. “I was in denial for a very long time.”
“How could I have gotten this? I almost committed suicide at one point.” — Tanwa, a nurse who was treated for multi drug-resistant tuberculosis (MDR-TB) in New Hampshire.
“I had a lot of thoughts about death and I could not see my son, so I composed in my head what my last words to him would be.” — Nicole, who developed drug sensitive tuberculosis, the most common form of the airborne disease, in North Carolina.
“I tried not to show fear, but deep inside I was scared I may never leave this isolation room,” — Sneha Dhedia, MD, who developed MDR-TB as a physician working in New York City.
Today, October 10, the world marks World Mental Health Day. Isn’t it time we recognize the impact of tuberculosis on mental health?
The world is facing an epidemic of TB-associated depression. A 2018 study of patients being treated for drug-sensitive TB in Ethiopia found that 53.9 percent had depression and that it was a strong risk factor for treatment interruption and death. A large number of patients said they had considered suicide.
An analysis published in 2017 of data from 48 low- and middle-income countries found that people with TB have three times greater risk for depression.
Ten million people fall ill with TB every year, about 500,000 of whom have MDR-TB. Yet, while the mental health impact of the disease has been known for years, the response is still appallingly weak.
Only 2 percent of TB programs around the world provide access to routine mental health screening, according to a 2019 survey.
This violates the rights of patients, and it represents a public health failure. TB patients who are depressed are less likely to seek care. They are less likely to take medications regularly and, as a result, could be contagious in the community for a longer period of time.
Dr Annika Sweetland, co-chair of The Union’s TB and Mental Health Working Group and Assistant Professor of Clinical Sociomedical Sciences in Psychiatry at Columbia University, states,
“We think that it is entirely possible that depression may be an unrecognized driver of the TB and multidrug-resistant TB (MDR-TB) epidemics.”
Why are TB patients suffering depression? While curable, TB is a stigmatized condition, and this contributes to social isolation. People may feel a sense of guilt, suspecting that they have inadvertently exposed others to TB. Pregnant women with TB face concerns about what will happen to their unborn child. And, Dr. Sweetland states, the body’s immune response to TB may itself precipitate depression.
During lengthy MDR-TB treatment, patients live with prolonged uncertainty about survival, along with severe nausea, pain and fatigue due to the medications. One of the MDR-TB medications, cycloserine, is known to cause depression and other psychological effects. (New regimens that leave out this drug are being developed and one recently received FDA approval.)
Can developing countries afford to provide mental health care? In fact, providing mental health care to TB patients does not have to bust the budget. Dr. Sweetland says countries can make a big difference in the lives of patients “with screening and low-cost, brief psychological treatments recommended by the WHO that can be delivered by community health workers who receive some specialized training.”
Programs should implement this at a minimum, along with peer support groups (such as We are TB, whose members are quoted above) and community based services. Patients and their families deserve respect, and any stigma or discrimination directed at TB patients, including from health personnel, must be addressed.
But, to have the biggest impact, programs should implement a comprehensive package including mental health care, economic support, and other services. Economic support is crucial because patients often spend precious savings trying to get diagnosed and then the lengthy period of treatment devastates their incomes. Patients become anxious knowing they cannot provide for themselves or their family, and they may drop out of care in order to try to return to work.
USAID and partners recently showed that it was feasible to implement a comprehensive support package for MDR-TB patients in four pilot countries, China, Pakistan, South Africa and Ukraine.
The results from the pilot programs were very impressive, including lower proportion of deaths and lower proportion of patients dropping out of care, as well as benefits to the health care system. USAID and partners have produced a practical toolkit that shows how to implement this comprehensive approach while also addressing program costs.
Why not adapt this approach for all forms of TB?
Countries made a clear commitment to expand access to integrated care at the UN High Level Meeting on Tuberculosis in 2018. They committed to:
“addressing tuberculosis by focusing on prevention, diagnosis, treatment and care, including socioeconomic and psychosocial support, based on individual needs, that reduce stigma, and integrated care for related health conditions, such as HIV and AIDS, undernutrition, [and] mental health…” [from paragraph 33]
External funding should be available to help countries meet this commitment. United for Global Mental Health has issued an urgent appeal to the Global Fund, now celebrating a successful replenishment, to issue clear guidance to countries applying for TB and HIV resources to include mental health in their proposals. This call to action has been joined by a number of other groups, including TB Proof, International Union Against TB & Lung Disease, RESULTS UK, TB People, and Socios En Salud (Partners In Health — Peru).
We do not need a randomized clinical trial to prove this kind of support to patients works.
In fact, it has been twenty years since the efficacy of mental health interventions for TB patients was shown by Partners in Health in Peru.
Now is the time for countries to take clear evidence into account and provide mental health services, in a coordinated package. The days of “here just take your TB pills” are over.