Brad Tytel: Sustained Voices Will Lead to Sustained Commitment
One of my TB heroes—a man who has dedicated his life to stopping the disease—tells a story about how he first got involved with a killer everyone else seemed to have forgotten.
In 1990, he was a doctor at Muhimbili Hospital in Dar es Salaam, Tanzania. It was the first time he saw how TB and HIV conspired to kill more patients than over-stretched and under-funded health systems had any hope of treating. The hospital had only 3,000 beds for nearly 6,000 patients, so patients with HIV and patients with TB ended up doubled up in the same beds. Looking back, it is easy to see a recipe for disaster: patients with infectious TB in close quarters with highly immune-compromised neighbors. But the TB diagnostic was lousy, and by the time he and other doctors knew a patient had TB, that patient had almost certainly infected dozens of others.
With stories like these, why doesn’t TB have us all marching through the streets? Nearly two million people each year are dying of a disease that developed countries such as the U.S. “defeated” half a century ago. Twenty years after Muhimbili, the most commonly used diagnostic is still lousy and misses up to one-half of all TB cases. The drugs are old, have unpleasant side effects and take a minimum of six months to treat a patient. If patients don’t complete treatment—whatever the reason—they may develop and spread a more deadly form of drug resistant TB. There are doctors and nurses in the field doing their heroic best to stop the TB epidemic. But without more resources and new and better tools TB will continue to spread.
TB needs strong champions to push back against the neglect that led to a resurgent epidemic. If the history of the HIV/AIDS epidemic has taught us anything, it’s that effective advocacy and communications can shape the international response to a disease. At the grassroots level, TB patients, doctors and community activists need to demand better access to, and tools for, treatment and prevention. At the national and international level, advocates have to make the case for increased funding for healthcare and investments in research that will lead to improved tools and methods.
Fortunately, much progress is being made. Passionate, engaging and effective TB patient advocates and grassroots organizations have emerged, either independently or with support from international TB or HIV organizations. Many of these activists are joining forces with colleagues focused on other disease. At the November 2009 Multilateral Initiative Against Malaria Conference in Nairobi, Kenya, I witnessed a sizable and impressive demonstration convened with the help of several TB groups that called on President Obama and other leaders to meet their commitments to the Global Fund to Fight AIDS, Tuberculosis, and Malaria.
At the international level, funding for TB prevention and control has increased significantly, particularly through the Global Fund, UNITAID, and the US government. This is largely due to the efforts of TB advocacy organizations and increased attention to the dangers of TB/HIV and drug resistance. At the same time, many high TB burden countries, particularly those with emerging economies like South Africa, China and India, are now taking increased steps to stop TB—and there is hope that these gains could translate into assistance for countries like Tanzania.
There is still an enormous amount of work to do, and resources available for TB are still a fraction of what is needed. But sustained voices will lead to sustained commitment. By telling stories like that of Muhimbili and using those experiences to push for change, we can draw renewed attention to an ancient killer.
Brad Tytel is a Director at Global Health Strategies, an international consulting company that uses advocacy and communications to help ensure development and worldwide delivery of health technologies and information – including for TB.
Photo captions: Activists in Nairobi, Kenya, call on donor governments to stop TB, AIDS and Malaria – November 2009. Credit: Global Helath Strategies
Heather Ignatius — Community Outreach is an Essential Component of TB Research
Mbeya CAB members march to spread awareness about the TB trials taking place in their community.
TB kills nearly 5,000 people a day—that’s 1 person every 20 seconds. Of the 1.8 million TB deaths each year, over 90% occur in developing countries, further exacerbating poverty among the world’s poorest and most vulnerable populations. Fueled partially by a high burden of HIV, Tanzania is among the nations hardest hit by the TB epidemic.
For those affected with TB, successfully completing treatment is extremely challenging. TB treatment relies on 4 drugs administered over a period of 6 – 9 months, and often includes daily observation. In low-resource settings, the requirements of treatment place a tremendous burden on patients and health systems alike. The hardships of administering and completing TB treatment, including the accompanying side effects, cause many to stop taking their medicine prematurely. This leads to the development of drug-resistant TB, which is much more deadly and much more difficult and costly to treat.
The challenge of completing TB treatment is further complicated by dangerous drug interactions between TB drugs and certain anti-retrovirals commonly used to treat HIV. For the millions infected with both TB and HIV, treatment of one disease is often interrupted to administer treatment of the other.
However, recent developments in TB drug development offer hope for the future. After decades of stagnation in research and development, the first new TB drug candidates in more than 40 years have reached the clinical testing phase. One drug, which has the potential to reduce treatment to 4 months, is currently being tested at two sites in Tanzania: the Kibong’oto National TB Hospital near Moshi, and the Mbeya Medical Research Programme (MMRP) at Mbeya Referral Hospital.
As a component of this clinical trial, the Tanzanian sites have implemented community engagement programs to ensure that the communities in which they work are aware of and educated about the research.
Drawing clients from a catchment area that spans several communities across Mount Kilimanjaro’s foothills, Kibong’oto Hospital offers primarily in-patient TB care, as patients are unable to make the daily trek to receive observed treatment. The hospital staff has set up a permanent outreach department for the patients’ families and communities, as well as a Community Advisory Board (CAB)—a group of 15 local community leaders and health outreach workers who educate others about TB and the trials being conducted at the hospital and related issues.
The Kibong’oto community engagement program finds that holding public educational events on the Hospital’s grounds helps bridge the gap between the medical staff and the community. One notable event last year included an art competition open to local students. The winners’ artwork was featured in educational materials on TB disease that were disseminated in the CAB’s outreach in an effort to raise awareness and combat stigma. This year on March 24, World TB Day, the hospital will host an Open House and quiz show to educate the community about TB.
A theatre troop performs for World TB Day to educate the community about TB.
In the more urban Mbeya, community outreach by the MMRP has used call-in radio shows and theatre performances to educate the surrounding community about the issues associated with TB.
The local CAB, originally developed around participation in a previous HIV trial, consists of about a dozen community leaders such as lawyers, educators and religious leaders. This group took it upon themselves to learn about TB diagnosis, treatment, and research and expand the scope of their educational efforts. On World TB Day, the Mbeya CAB will hold its second annual march to raise awareness about the TB trials taking place in their community.
Heather Ignatius is Policy Manager at the Global Alliance for TB Drug Development, which is a not-for-profit, product development partnership accelerating the discovery and development of new tuberculosis drugs that will shorten treatment, be effective against susceptible and resistant strains, be compatible with antiretroviral therapies for those HIV-TB patients currently on such therapies, and improve treatment of latent infection.
Photo credits: Mbeya Medical Research Programme
Emily Bell: An Ancient Disease Has Made a Deadly Resurgence
An X-ray of a patient diagnosed with advanced bilateral pulmonary tuberculosis. Credit: US Centers for Disease Control (CDC)
The Who Cares? Campaign blog is exploring tuberculosis (TB) for the month of March.
Tuberculosis (TB) is an airborne, bacterial disease that has been around for centuries. In fact, scientists now estimate the disease may have existed 3 million years ago! We now have the tools to diagnose and treat this deadly disease, but almost 2 million people continue to die each year. This is unacceptable.
Those who are infected with and die of TB predominantly live in the poorest communities of the world. A disease of poverty, TB generally affects the most marginalized communities who are also affected by malnutrition, HIV/AIDS, and malaria. They lack adequate access to clean water and basic healthcare.
Sub-Saharan Africa, therefore, faces a particularly high burden of TB with the largest number of TB-related deaths. Tanzania is hard hit, with TB responsible for taking more than 32,000 lives per year. In fact, TB has made a deadly resurgence in Tanzania and elsewhere in sub-Saharan Africa over the past two decades in large part to the spread of HIV/AIDS. The HIV/AIDS pandemic presents a multitude of challenges in tackling TB:
- People who are HIV-positive are more susceptible to TB infection due to their weakened immune systems. This fuels the spread of TB.
- TB is more difficult to diagnose among people who are co-infected with HIV. People who are co-infected often suffer longer before accessing treatment and may also spread TB to their loved ones unknowingly.
- TB is harder to treat among people with HIV. The antibiotic drug regimen to combat TB must be carefully coordinated with other medications, such as antiretrovirals.
Dr. Fred Lwilla, senior program officer for Tanzania’s National TB and Leprosy Program, noted that the number of reported tuberculosis cases is increasing in Tanzania in part because of high HIV prevalence, weak health infrastructure and poverty, according to a recent Tanzanian publication. He cited lack of public awareness and insufficient integration between TB and HIV/AIDS programs as additional obstacles.
The extreme shortage of doctors, nurses, laboratory technicians and other critical healthcare workers in Tanzania makes diagnosis and treatment of TB even more challenging. Treatment, for example, requires a minimum six-month course of antibiotics. Community health workers have proven instrumental in providing daily observed treatment (DOT), but patients often require periodic follow-up with a doctor, especially if they face complications due to HIV/AIDS.
Emily Bell is Head of Advocacy and Communications at the Touch Foundation. She was formerly a Program Officer at the Open Society Institute, where she oversaw a TB monitoring project that focused on several countries, including Tanzania.
Emily Bell — TB and malaria remain major killers in Tanzania
For the month of August, the Who Cares? Campaign will focus on how malaria and tuberculosis impact the healthcare system in Tanzania.
Often the stepchildren to HIV/AIDS, malaria and tuberculosis collectively kill nearly three million people each year. In Tanzania alone, malaria and TB account for nearly 22% of the disability-adjusted life years (DALY) loss. Significant investment has been channeled into vertical initiatives – addressing the specific diseases rather than the entire health system – to target these diseases, achieving mixed results. The Touch Foundation’s recent diagnostic study, Catalyzing Change- Molecular strengthening of the health system in the Tanzanian Lake Zone, reveals that such investment is compromised, in part, due to the lack of integration to the existing health system.
With malaria, for instance, the lack of diagnostic equipment and limited health worker training severely inhibit effective treatment. Due to its fast and short life cycle, malaria needs to be diagnosed quickly- getting treatment in the first 48 hours of the disease often means the difference between life and death. Without diagnostic tools and with only poor access to health facilities, this window of opportunity can easily be missed. During the onset for malaria, for example, frequent misdiagnosis occurs due to lack of laboratory access. The study also reveals that only 26% of dispensaries have blood smear testing to properly diagnose for malaria and during the treatment phase; nearly 40% of the health facilities lack second line drugs needed to properly treat malaria.
Though vertical investment in both malaria and TB has made impact in Tanzania, it is clear that significant opportunities exist for focusing on Tanzania’s health systems, particularly on human resource capacity in which to optimize such vertical investments. The World Health Organization estimates the current deficit of health workers in Tanzania to be around 90,000. Join the Who Cares? Campaign today to help us address this deficit and to put a stop to malaria and TB.
Emily Bell is Head of Advocacy and Communications at the Touch Foundation.