Many people think that tuberculosis is a disease of antiquity, eliminated decades ago by improvements in living conditions and the discovery of effective antibiotic treatment. But one-third of the world's population has been infected with TB and in 2008, there were more than nine million new cases, about three million more than two decades ago.
Why isn't it going away?
One explanation is the continuing underinvestment in TB and health care generally. Another is the HIV pandemic, which causes increased vulnerability to TB infection and disease. In many parts of the world, these factors collide. Human rights abuses are also an important factor compounding the TB crisis.
TB is an airborne disease, spread by coughing. Many people are exposed and many become infected, however, most infections remain latent. Among people living with HIV, or with depressed immune systems (from other illness or malnutrition, for example), the risk of advancing to active disease can be 100-fold higher. Normally, TB can be treated easily and cheaply -- but training, adequate medicine and a commitment to give treatment to those who suffer from the disease without discrimination is required in order to protect the whole population.
In 2009 Human Rights Watch conducted research into access to health care for migrants in South Africa. Our investigation found that discrimination within hospitals and health clinics against migrants were a major barrier to receiving care. The problem is not unique to South Africa. A survey of TB diagnosis and treatment for migrants in 28 developed countries found that, in some countries, full access to treatment was only guaranteed for migrants in prison or was dependent upon legal status.
In developing countries -- particularly countries with high rates of HIV -- tuberculosis is among the leading causes of death. TB is also an important cause of illness and death for children, whose immune system is not fully developed, and with whom diagnosis is especially difficult. The very fact that small children are held close can mean that they are more likely to be infected by someone who is sick: An estimated 20-50% of children who live in households where an adult has active TB become infected. TB, and TB meningitis, can have devastating long term effects, leaving children deaf, blind and/or totally paralyzed.
For those in prisons, TB can turn even short sentences into a death penalty. Lack of access to medical care and poor prison conditions -- severe overcrowding, poor ventilation, and inadequate sanitation and nutrition -- exacerbate vulnerability to and transmission of TB. Without appropriate planning and linkages to treatment for those who are released, inmates who have been incompletely treated within prison risk developing resistance to TB drugs, and they may infect the communities to which they return with this resistant form of disease.
Drug resistant TB is on the rise, and is present around the world. The WHO estimated that there were half a million (440,000) DR-TB cases worldwide in 2008 -- India, China, and the Russian Federation had the highest numbers. Treatment for drug-resistant TB (DR-TB) is expensive, painful and not always successful.
As with other emerging infectious diseases, DR-TB has also resulted in panic, with governments adopting often strategies that infringe on human rights and are ineffective at addressing the spread of the disease. In South Africa, patients with drug resistant TB have stormed the gates of TB isolation hospitals which they describe as prison-like, protesting conditions and seeking to spend holidays with their families. Meanwhile, many other individuals with DR-TB avoid diagnosis and continue to live in overcrowded communities. While human rights can be curtailed in specific, limited ways in the face of emergencies -- including health emergencies - curtailing rights requires careful and case-specific attention.
The Siracusa principles, developed by the UN, require that restrictions on human rights must, at a minimum, be: provided for and carried out in accordance with the law; directed toward a legitimate objective of general interest; strictly necessary in a democratic society to achieve the objective; the least intrusive and restrictive available to reach the objective; based on scientific evidence and neither arbitrary nor discriminatory in application; and of limited duration, respectful of human dignity, and subject to review.
Finally, greater investment should be made to ensure that individuals with all forms of TB do not suffer pain needlessly, in violation of their right to the highest attainable standard of health. The pain of TB patients is frequently disregarded, and has significant implications for treatment default and subsequent development of drug resistance.
One man suffering from extrapulmonary TB in India told Human Rights Watch how he suffered with inadequate treatment for his severe pain: "I had pain in my back and both legs. My legs twisted into an abnormal position. My legs would turn inside and my toes up. It was a pricking pain that was excruciating." He went to a TB clinic, where he was given treatment for TB. But when he described his excruciating pain, his doctor prescribed him only 400 milligrams of ibuprofen, a weak painkiller, which provided no relief.
Combating TB requires a commitment to improved TB and health care services generally, and to addressing the HIV co-epidemic. But addressing TB -- from transmission to treatment -- also involves considering a wide range of human rights issues that should not be ignored.
The absence of an adequate standard of living, including for people in prison, fuels the spread of TB; structural gaps in health systems lead to the development and then transmission of drug-resistant strains; legal and social barriers to accessing care prevent equal treatment for vulnerable groups including the poor, migrants, indigenous peoples, people who inject drugs, women, children, and prisoners; compulsory treatment measures including isolation endanger the liberty and privacy of patients.
Only by addressing these rights abuses will we see TB finally eliminated as a health scourge, and will the right to health for millions worldwide finally be realized.
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