Ani Hernasiri is a Tuberculosis (TB) activist and survivor from Surabaya, Indonesia. In November 2011, Ani was diagnosed with Multi-drug resistant TB (MDR-TB), and only fully recovered after two years in 2013. Against this backdrop, and as an MDR-TB survivor, Ani found her passion to contribute to the TB response in Indonesia to ensure that many others like her will survive TB. In 2015, Ani was able to attend several workshops for TB survivors which helped to build her capacity to advocate on behalf of TB communities. She then joined Perkumpulan Rekat Surabaya, an association of MDR-TB peer educators which primarily aims to assist people living with MDR-TB to successfully complete treatment in Surabaya.
Ani began her work with the organisation through contributing to the news bulletin of the organisation – “Gazebo Kita” by writing the stories of TB survivors like herself, to give hope and determination to those who are living with TB. Since then, Ani has come a long way and now serves as the Vice-Chair of the board of the organisation.
Indonesia has an estimated population of 270.6 million (World Bank, 2019), is the world’s fourth most-populous country, as well as the most-populous Muslim-majority country with TB being the number one cause of death among communicable, maternal, neonatal & nutritional diseases. According to the World Health Organisation Global Tuberculosis Report 2019, Indonesia ranks third worldwide in terms of estimated TB incident cases per year, where the estimates of TB burden are staggering – total TB incidence of 845,000, HIV-positive TB incidence of 21,000, and MDR/RR-TB incidence of 24,000. Against a backdrop of 10,174 patients with known HIV-status who are HIV-positive, only 4,082 of these are on antiretroviral therapy.
COVID-19 has impacted the communities that Ani works with through Rekat Surabaya negatively. Supported by Perhimpunan Organisasi Passion TB Indonesia (PoP TB Indonesia) and the Stop TB Partnership in Indonesia, Rekat Surabaya is a small team of eight MDR TB peer educations and raises awareness on TB and TB treatment amongst people living with and affected by TB, support people living with TB to access TB treatment with follow-up, and deliver TB treatments to clients who are unable to visit clinics due to physical challenges.
As of 29th September, Indonesia recorded total number of COVID-19 infections nationwide to 282,724, with 4,002 new confirmed COVID-19 daily new cases and 128 deaths, bringing the total number of deaths from COVID-19 to 10,601. A doctors’ association also recorded that at least 123 doctors have lost their lives to the novel coronavirus in Indonesia since the pandemic started in March. With the rapidly increasing cases, and a weak health system in Indonesia, Indonesia has been overwhelmed by the crisis leading to huge concerns that the Indonesian health system would collapse quickly if new infections are not contained.
Ani noted that, “Visiting TB clinics to get TB treatment has been a major challenge for many people living with TB in Surabaya, as public transport was suspended due to COVID-19.” However, as the lockdown was not strictly imposed In her city, people living with TB were still able to arrange private vehicles to take them to the clinics and peer educators of Rekat Surabaya were able to continue delivering TB drugs to their clients.
“Even though the imposing of the lockdown was a blessing in disguise for us and for those living with TB in Surabaya to continue accessing the clinic for treatments, it also meant that there is a high probability of COVID-19 community-spread in Surabaya, which would further risk the lives of those who are living with TB and face vulnerable conditions,” said Ani. She further emphasised the urgent role of authorities to ensure proper implementation of measures to control community spread of COVID-19 and highlighted the need on the role of the Government of Indonesia to ensure that essential services such as TB diagnosis and treatment is properly maintained with adequate safety measures adopted to mitigate the impact of COVID-19 on the country’s TB response which could take a bad hit with increased new TB incidence, lack of timely diagnosis of TB and increased drug resistance and lead to increasing mortality rates from TB.
“COVID-19 is directly affecting the mission of our association which is to provide support to those who are on TB treatment to adhere and complete their treatment courses, as we are unable to continue our regular treatment support visits,” reflects Ani. She further clarifies that even though smart phones and modern technology helps to provide support remotely to people who are on TB treatment via video calls and to ensure that they are regularly and taking their TB treatment properly, the lack of smart phones and access to internet amongst her clients on TB treatment has limited its effective use”.
The World Health Oganisation released an Information note on Tuberculosis and COVID-19 that emphasised the urgency in maintaining continuity of essential services of people affected with TB during the COVID-19 pandemic as it is important that the progress made in TB prevention and care is not reversed by the COVID-19 pandemic, and that while experience on COVID-19 infection in TB patients remains limited, it is anticipated that people ill with both TB and COVID-19 may have poorer treatment outcomes, especially if TB treatment is interrupted.
The fear of contracting COVID-19 is real amongst those living with TB revealed Ani as the co-infection could exacerbate conditions that they are already facing, including stigma and discrimination from TB. “Many of our clients are now scared to visit clinics to access treatment in fear of possible exposure to COVID-19 and this is alarming, as this could lead to missing doses, especially for those whom are on injectable treatments, and could lead to the development of drug resistance,” said Ani. A survey led by Ani in partnership with POP TB Indonesia covering the Java Island of Indonesia to gather information on the impact of COVID-19 on TB communities has revealed that more than 85% of the respondents do not wish to visit the clinics fearing potential COVID-19 infections. The survey also showed that disruption to regular treatment counselling led by peer educators is leading to missing doses by people who are on TB treatment.
Despite the challenges faced with COVID-19, Ani has led the organisation’s small TB peer educators team to provide treatment support to more than 80 clients to ensure treatment adherence during the lockdown period(s). The organisation has also supported the majority of its TB clients with food and nutritional support during the lockdown. In addition, Rekat Surabaya regularly engaged with the Surabaya City Health Office to monitor and evaluate the COVID-19 situation in the province, and to provide updates to the Surabaya City Health Office on the situation of people living with TB. Through the organisation’s social media platforms, Ani and Rekat Surabaya continues to share information on COVID-19 prevention and safety measures, including specific messages on COVID-19 to those who are living with TB.
The Global Fund to fight AIDS, Tuberculosis and Malaria (Global Fund) has significantly contributed to the efforts of the Government of Indonesia and communities to address not only the challenges faced by HIV, TB and malaria response. Indonesia has accessed US$12,875,059 through grant flexibilities of the Global Fund where countries can use up to 5% of existing Global Fund grants to fight COVID-19 and mitigate the impact the pandemic has on HIV, TB and malaria programmes. In Indonesia, the Global Fund has supported acquiring cartridges for GeneXpert machines which are typically used for rapid diagnostics of TB to also test for COVID-19.
Ani is adamant that one of the effective solutions in addressing the lack of access to TB treatment and guaranteeing adherence, especially in an emergency situation such as COVID-19 is to ensure the availability of the most advance TB drugs. She insisted that pharmaceutical companies along with international organisations such as the Global Fund, Stop TB Partnership and the United Nations, along with national governments should work closely together to ensure that these drugs and diagnostics are made available and affordable to those who are in need. She further contemplated on the need for national health insurance schemes to comprehensively provide coverage to all communities without discrimination to ensure that no one is left behind in accessing quality and affordable health care as part of achieving Universal Health Coverage in Indonesia.
Underlining the crucial role that communities have in terms of community mobilisation and providing peer counselling and treatment support as part of the TB response in Indonesia, Ani stressed the importance of ensuring the safety of community front line workers are regularly in close contact with those who are living with TB. “This also means making TB prophylaxis treatment available for all peer educators and providing the required resources for this service through external funding and domestic resources, especially through the national health insurance scheme,” emphasised Ani. Noting that it is vital that national governments alongside technical partners and communities take proactive steps towards exploring the adoption of new guidelines on Isoniazid Preventive Therapy and making the treatment available for those who are in need. “After all, we cannot deny the key role communities have in health systems and it is everybody’s responsibility to ensure we are safe.”
Vice-Chair, Perkeumpulan Rekat Surabaya
Ani Hernasari is a TB activist from Surabaya, Indonesia. She currently serves as the Vice-Chair of Perkumpulan Rekat Surabaya, an assciation of MDR TB peer educators and is linked with Perhimpunan Organisasi Pasien TB Indonesia (POP TB Indonesia) or Indonesian TB Patient Organisation Association. The journey of Ani as a TB activist started in 2013 following her complete recovery from Multi-drug-resistant tuberculosis (MDR-TB).
Ani graduated from the University of Airlangga in 2005 and has a Master’s degree in Media and Communication. She is currently reading for her PhD in Digital media at the University of Airlangga and teaches “Film and Television” at the 45 University Surabaya.
Relevant Links & Documents
- The Office of Inspector General (OIG) Audit Report – Global Fund Grants in the Republic of Indonesia
- Global Fund funding on TB in Indonesia IDN-T-MOH: Towards an Indonesia free of Tuberculosis
- Global Fund funding on TB in Indonesia IDN-T-AISYIYA: Towards an Indonesia free of Tuberculosis
- Stop TB Partnership page on TB and COVID-19
- Stop TB Partnership fact sheet on Indonesia
- World Health Organisation Information Note – Tuberculosis and COVID-19
- The impact of COVID-19 on the TB epidemic: A community perspective