Addressing the needs of TB patients

By Enrique Delgado

The impact of tuberculosis (TB) on people and communities worldwide is obvious in frightening statistics, revealing that close to two million people die each year from a disease that is preventable and treatable. Those numbers don’t tell the full story, however.

World TB Day, observed annually on March 24th, is an appropriate time to look at the big picture, to reflect on the disease and on how patients are impacted — as well as the imperative to eradicate the disease by 2030, the goal set by the World Health Organization (WHO). According to 2014 data, 273 people died of TB in my home country, Panama; that is 1.7 percent of total deaths in the country. The age-adjusted death rate is 7.76 per 100,000 people.

The cruel effects of TB

About one-third of the world's population has latent TB. This means they have been infected by the Mycobacterium tuberculosis and could develop the disease at some time in the future, in a process called “TB reactivation.” According to WHO, approximately 5–10 percent of those with latent TB will develop the disease, with a higher risk for those with certain “predisposing factors.” These include HIV infection, kidney disease, illicit drug use, or being homeless or imprisoned.

Those who develop the disease are likely to suffer life-changing effects, which may include loss of income; severe psychological and social stress; and even physical disability, such as hearing loss. The stigma attached to the disease, meanwhile, creates additional pressure for patients and their families.

After 40 years without a significant new drug for TB treatment, there is a dearth of options available to those whose infection develops into active TB. Existing treatments are challenging because of the length of time they take to complete and the severity of side effects, which can include vomiting, nausea, fatigue, hives, weight loss, and hearing loss.

Patients also suffer financially from the cost of the drugs or trying to find an alternative treatment, as well as the loss of earning power, since the treatment regimen often means long hours away from work for those who complete the treatment. Many end up losing their jobs and the ability to take care of themselves and families.

Those who take the drugs only part way, inadvertently contribute to the development of drug-resistant TB, another major challenge facing healthcare workers and patients alike. Drug-resistant TB occurs when the bacteria that the person is infected with does not respond to at least one of the main TB drugs. The five main drugs are Isoniazid, Rifampicin (called rifampin in the United States), Pyrazinamide, Ethambutol, and Streptomycin.

Joining the cause

Five years ago, I was fortunate to meet someone who has dedicated many years of his life to fighting TB in several countries. He encouraged me to join the cause, and since then, I have taken on the role of advocate, working with three international organizations with the common goal of eradicating TB.

My immediate goals include promoting greater participation by civil society in the research and development of new medicines and participation with policymakers in decisions about health planning and their impact on communities. Weak healthcare systems in many countries, and ignorance of the presence and nature of the disease, contribute to the continued presence of TB well into the 21st century.

One important but often missing component of care for those with the disease is a reliable system of emotional support. This might include psychotherapy for the patient and public education to encourage accommodation among the community while they are suffering treatment side effects.

Simply having someone to encourage them to continue their treatment can make the difference between them sticking with it or abandoning it. Healthcare workers can be especially influential here, both in keeping the patient on target and in spotting some of the more extreme treatment side effects, such as suicidal thoughts among those taking cycloserine, one of the antibiotics used to treat drug-resistant TB.

Tuberculosis is a disease of mind and body. The stress of being diagnosed with the disease and the effects of the treatment will adversely affect one’s disposition as well. This, then, is the proverbial “catch-22,” because healing the body will be easier if the mind is free of worry. As has been established, however, diagnosis and treatment come with severe physical and psychological stressors for the patient. It should be obvious, then, that treatment should have not just a physical component but a social and emotional one as well.

Investment in research and development, greater understanding of the disease, and more effective treatment are needed to move closer toward the WHO’s ambitious and necessary goals.

Enrique Delgado is a telecommunications professional and TB treatment advocate. He recently participated in a TB advocacy training program in Paris, France, sponsored by ACTION, a partnership organization advocating for life-saving care for people threatened by preventable diseases.