Insights into Editorial: Anchored in human rights
Decades of global neglect have resulted in tuberculosis (TB) becoming the leading cause of adult deaths in most of the global south.
It kills nearly two million people a year. This is shocking given that TB is curable and preventable.
The United Nations Declaration of September 2018 titled “United to End Tuberculosis: An Urgent Global Response to a Global Epidemic”, where heads of state and government have “reaffirmed their commitment to end the global TB epidemic by 2030”.
Status in India:
Despite the efforts of health systems, about 40% of Tuberculosis (TB) patients in India go undiagnosed or if diagnosed, are not reported.
Moreover, even among those reported and/or diagnosed with TB, many do not turn up follow up treatment, both in cases of drug sensitive and drug resistant TB.
Social factors such as stigma and discrimination push many to opt for treatment at private hospitals.
However, the downside of this is:
- Inadequate financial support.
- Availability and access to services at a convenient time,
- social factors like work, migration, gender, etc. and
- other economic barriers such as cost of transport, ancillary medicines and
- investigations in private sector are other major deterrents.
There are two areas of concern:
- The diagnostic delay can contribute significantly to deterioration of the patient’s condition and
- Lengthen the time during which the patient remains contagious.
The findings suggest that there are systematic deficits in the management of TB in the private sector.
Best Way Forward Possible to eliminate TB:
We cannot beat TB through a response rooted in control and coercion. Therefore, we suggest three interventions to which the funding for surveillance technology should be redirected.
The first is new treatment:
In contrast to the dozens of whirring and chirping surveillance gizmos are bedaquiline and delamanid, the only new TB drugs to have come to the market in 50 years.
These drugs are far more effective against drug-resistant TB than prevailing treatments made up of toxic drugs and painful injections that only work about half the time and often cause disability and psychosis.
New guidelines by the World Health Organization (WHO) recommend:
- The use of bedaquiline and delamanid against drug-resistant TB. But to date, only about 30,000 people have received the new drugs; compare this to the over 500,000 people who get sick with drug-resistant TB every year.
In other words, we mount an arsenal of cutting-edge technology to corral people into taking torturous, ineffective drugs even while we fail to use available drugs that work far better.
If adherence is the goal, providing drugs that work would be a good place to start.
International institutions, donors and countries need to focus and collaborate on the urgent production and distribution of affordable generics of bedaquiline and delamanid.
The second is the human touch:
- Employ and deploy community health-care workers.
- Many domestic TB policies envision community health-care workers as the backbone of the response, yet, in practice, these front-line workers remain shockingly underused.
- In sufficient numbers equipped with proper training and dignified conditions of employment they would lead the response by bringing care to those furthest from the reach of traditional health-care systems.
- WHO should focus on recommendations around this cadre of workers and donors should focus funding to programmes that make the most of them.
The last is accountability:
- The TB response can only be as good as the health-care systems through which it is implemented, and health-care systems are only as good as the structures that hold them to account.
- Community-based structures such as “clinic committees” ensure accountability while also fostering partnership and trust between communities and their health-care systems.
- Grassroots civil society and community-based organisations also ensure accountability. Such organisations are indispensable and would thrive on comparatively small amounts of funding.
- Accountability is a necessary condition for success. We must recognise that it is owed to communities, not donors or international institutions, and fund their efforts to ensure it.
To mitigate these factors through community engagement, the State Health and Family Welfare Department has planned to set up State and District TB fora. A Government Order in this regard was issued.
Recently, the Union Ministry had also directed all States to expand TB diagnostics services at all Primary Health Centres (PHCs).
This follows a directive from the Union Health Ministry that aims to meet its ambitious target of eradicating TB by 2025, five years ahead of the target fixed by the World Health Organisation (WHO).
People with TB do not need to be watched, they need to be heard. People with TB are saying they want what anyone wants including health and dignity.
The shiny allure of surveillance technology threatens to distract us from the real work of the TB response and work that involves partnering with communities to employ human-rights based strategies to beat TB.