No ribbons, no marches, no Carlos Santana

Tuberculosis in the United States is just as common as chicken pox — about 9000 people develop active TB each year, while 8775 people developed chicken pox in 2017 (thankfully, for chickenpox there is a safe and effective vaccine). Up to 13 million people in the US live with TB infection, which can become active and life-threatening.[i]

Do Americans realize TB is this common — or this serious?

World TB Day takes place March 24 each year, yet seldom do we see awareness raising campaigns with people wearing colorful t-shirts, as we see with other diseases.

No ribbons, very few funding-raising races or walks for TB research. Famous Americans who actually had the disease, like Carlos Santana or Tina Turner, are silent on the subject. And there are surprisingly few health fairs where you could get free blood test to know whether you have the infection.

A study the US Centers for Disease Control in 2008 found that TB awareness in the US, among populations at risk, is low. Fewer than one half of respondents in the study knew that it is transmitted by air.[ii]

“There’s a perception that TB no longer exists and that really that once you get discharged that it’s cured, but it’s not really cured,” the CEO of the Texas Center for Infectious Disease, Jessica Gutierrez-Rodriguez, stated last year.[iii]

In fact, a 2018 study concluded that, at a global level, “a considerable proportion of patients have irreversible and often progressive pulmonary defects.”[iv] But most Americans would be shocked to hear TB could leave you with permanent lung damage, or that it could even be drug-resistant.

David Bryden with Elizabeth Lovinger of Treatment Action Group, a leading non-profit that is collaborating with We Are TB

A new organization is trying to end the ignorance about TB and bring it out of the shadows. It is called We Are TB, led by TB survivors themselves, who volunteer their time to raise awareness and call for action.

These former patients and family members, drawn from a variety of backgrounds and from all over the US, are speaking out in their communities about their experience, to break down myths and provide accurate information. They fill a critical need since patients and their families are often uncertain about what to expect. TB can lead to social isolation, depression and even social stigma.

Kate O’Brien, a leader of the organization, states, “I was quarantined for almost three months, but the disease was emotionally isolating too. It was so hard to find anyone who had the disease, so hard to find information. Finding We Are TB and meeting other people was so inspiring and healing.”

Next week, a small group of members of We Are TB will come to Capitol Hill to lobby Congress about the need for more federal support for TB programs in the US and around the world, including the need for much greater spending to develop a vaccine for TB, more reliable diagnostics and faster-acting treatments. RESULTS and other organizations are co-sponsoring the event.

Members of We Are TB thanking Rep. Gene Green, center, co-founder of the TB Elimination Caucus in the US House of Representatives, for his many years of leadership on TB

Specifically, they will be advocating for funding for the US Centers for Disease Control, which provides critical support to state and local TB programs, USAID, the Global Fund, and TB research, as well as legislation on TB recently introduced by Senator Sherrod Brown.

Funding for TB programs in the US has not been increased since 2005, and prevention campaigns are almost non-existent.

O’Brien was recently named one of the 2019 TB Champions by the CDC. She is determined to make a difference for affected communities in the US and around the world. “I can remember how I felt with TB, my throat and chest aching, so drained and miserable and slowly withering. I can’t stand that people are dying a slow painful death from a curable disease.”

It helps that O’Brien is also funny and engaging — her twitter handle is @tubercuLOLsis

Why are TB survivors seldom public advocates for the disease? This is due in part because of the “top-down orientation of tuberculosis control efforts,” according to a report this week from The Lancet on how the world can end TB, now the biggest infectious disease killer.[v]

Yet, to their credit, TB control experts in the US have led the way in getting We Are TB on its feet. Donna Wegener, Executive Director of the National TB Controllers Association, states, “We look to the growing community of TB survivors to make some noise, on World TB Day and throughout the year. They are already having a significant impact on our advocacy efforts, and awareness-raising activities, and with their peer-to-peer support.”

While still small and with no full-time, paid staff, We Are TB is making a critical contribution, part of a global trend of TB survivors speaking out, including from health care workers who have developed TB .[vi]

But imagine if every year just 5% of TB patients in the US were trained to become advocates for TB awareness and education. That would be 450 new advocates each year, telling their personal stories, educating their communities and helping people feel less alone with the disease, and calling for research funding and programs to end this disease.

We Are TB is seeking sponsors for their next training workshop. They are asking people to get informed, help raise awareness and bring the urgency of TB to policy makers at all levels.

If we are serious about ending this disease, we must lend our voice and help build groups like We Are TB, so there are chapters all over the country and World TB Day becomes a day for everyone to remember.

[i] https://www.cdc.gov/tb/statistics/ltbi.htm

[ii] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5451104/

[iii] https://www.texastribune.org/2018/12/18/texas-tuberculosis-problem-raises-alarm-legislative-attention/

[iv] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6019552/

[v] https://www.thelancet.com/commissions/tuberculosis-free-world

[vi] https://blogs.plos.org/speakingofmedicine/2019/03/21/i-didnt-plan-to-be-an-activist-perspectives-on-tuberculosis-care-from-six-survivors/