The importance of testing

The promotion of human rights and equity are core to both the SDGs (United Nations, 2015) and WHO initiatives to eliminate viral hepatitis. In particular these principles are evident within the guidance on access to testing, with WHO calling for testing services to be “accessible to the populations  most affected” (WHO, 2017). WHO further elaborates that: “Rapid expansion of programmes to improve coverage should not compromise the quality of services, nor contribute to inequities in access to services and health outcomes” and “Actively engaging affected populations in developing strategies and programmes should result in better targeted and acceptable services”

Building on the foundation provided by WHO, civil society and the affected community can help national governments, national health institutions and other stakeholders to make testing more readily available by:

Advocate for:

The development of a partnership response to viral hepatitis, where people living with viral hepatitis are included in ministerial and other global and national advisory structures

 

1. Make sure you are prepared to work with your government. Understand the current priorities of the Ministry of Health, and build your organisational knowledge on both diagnosis and your country’s healthcare system so that you are ready to offer solutions to the barriers to diagnosis.

Tip

  • The “Diagnosing hepatitis” section of this website is a great place to start if you want to improve your knowledge on diagnostics.
  • Check out this brief monitoring tool for community advocates for suggestions on meaningful ways to talk with policy-makers about hepatitis C (many of the questions are relevant to hepatitis B too). Created by hepCoalition it is available in English, French, Spanish and Russian.

 

2. Hold governments accountable to the commitment they made at the World Health Assembly in 2014 when they adopted resolution 67.6 (3) “to promote the involvement of civil society in all aspects of preventing, diagnosing and treating viral hepatitis”. Make sure this involvement is meaningful and ongoing.

Tip

  • Inclusion in national guidelines committees can result in civil society organisations being given a “scientific” attribute and so a higher position in front of governments.
  • Study how civil society organisations from other disease areas are included in advisory structures.

 

3. No decision about us, without us. Build the argument for why involving civil society is important. A presentation on the WHO Country Profiles at the World Hepatitis Summit in 2017 showed that countries who involved civil society in their response were further along.

Tip

Check the Lancet comment piece on the role of civil society in the elimination of viral hepatitis.

Advocate for:

Better data to shape testing strategies so that they are targeted and people-centred

1. Approach the Ministry of Health, universities or other research institutes and advocate for them to make hepatitis prevalence studies a priority.

Tip

Try to integrate hepatitis with prevalence studies of other diseases, such as HIV or NCDs, where appropriate.

 

2. Discuss with the Ministry of Health the importance of putting in place strong monitoring and evaluation systems. In many countries (even those without a national hepatitis programme), certain populations are being screened for hepatitis B and C and capturing this data will help to inform scale-up plans for national testing strategies.

 

3. Generate data and/or contribute to the generation of accurate data. Ensure that the reports from any testing activities you undertake are shared with your government and that your government has a feedback mechanism to ensure continued meaningful engagement which enables you to contribute and respond to official health data.

 

 

4. Use examples of what countries similar to your own have done to show how better data can lead to better strategies.

Advocate for:

Available and effective testing, integrating both simple and appropriate testing technologies, while incentivising testing at the primary care level

1. Understand the regulations that need to be in place within your country in order for task-shifting and decentralisation of testing and treatment to be implemented amongst GPs, nurses, pharmacists and community health workers.

Case study

The Test and Detect partnership project between different civil societies within Russia in order to utilise testing capacity. Find out more here.

 

2. Use journal articles and existing case studies which show the impact of simplification, decentralisation and/or task-shifting to help incentivise testing at the primary care level and to build the evidence base for your advocacy.

Tip

Look at  reports on medical literature such as projects ASCEND and ECHO  or initiatives like VIRCAN and Kirby Institute.

Advocate for:

The provision of testing services through new models of care that allow for a “one-stop shop” experience where chronic infection can be confirmed and appropriate linkage to care implemented

 

1. Speak to local services that are working with key populations and explore how hepatitis testing and treatment could be offered there.

Case study

Community Network for Empowerment (CoNE) look at integrating services in Manipur state, India. Find out more here.

 

 

2. Build your advocacy base by using examples of how different testing models have been implemented to promote faster linkage to care.

Case Study

  • Kombi Clinic shares how the use of a testing van has helped increase testing and faster linkage to care for hard to reach communities. Find out more here.

Tip

  • Look at studies, such as findings from the HepTLC initiative, which show the impact on linkage to care of providing HCV antibody and confirmatory testing on the same day.
  • Look at studies, such as findings from Egyptian Liver Research Institute and Hospital (ELRIAH), which details a same day ‘test and treat’ model for chronic HCV and HBV infection in two communities in Egypt

 

3. Advocate with policy makers to do testing as flexibly as possible for people from vulnerable populations. Countries’ testing policies should not create barriers for more accessible testing (community initiated testing/screening without participation of medical personal).

Case study

Anil Palmer’s details how United Way Mumbai collaborated with government officials to make testing more accessible for vulnerable populations. Find out more here.

 

Advocate for:

Gaps in services to be addressed, specifically at sites where testing is not available or where it is underutilised

 

1. Conduct a shadow survey to hold governments accountable and determine if what they are publishing about service delivery, lab infrastructure and capacity is actually being implemented in practice.

2. Pull together data and patient stories highlighting why it is important to address the gaps and offer suggestions for improvement.

 

 

Advocate for:

Broad availability of quality-assured rapid tests to screen for viral hepatitis

 

1. Pull together a list of stringent regulatory authority (SRA) approved rapid tests to ensure the Ministry of Health is aware of available products.

Tip

You can find links to a list of SRA-approved tests on the “Diagnosing hepatitis” section of this website.

 

2. Use published studies to show the benefits of using rapid tests for screening of viral hepatitis.

 

 

 

3. Undertake a survey of the affected community and programme implementers to show the impact that rapid tests will have on access to testing and service delivery.

Action you can take

As well as advocating for change you can also take action yourself. The below suggestions could help you to accelerate momentum to Find the Missing Millions and eliminate hepatitis.

Actions

(a) Participate in the design of testing policies and strategies at the national level to ensure appropriate considerations that can enhance implementation are accounted for.

(b) Build the capacity of non-governmental organisations and community-based organisations, including patient groups, to test for viral hepatitis.

(c) Stimulate political will at all levels of government for increased access to testing.

Case study

Physicians for Human Rights Israel (PHRI) launched a campaign in 2016 to ensure the government made screening, diagnosis and treatment for hepatitis C available in prisons. Find out more here.

(d) Help to ensure an equitable response by setting targets, especially for vulnerable populations, as they are frequently under-represented in testing efforts.

(e) Recruit peers from the affected communities to conduct testing, act as case managers, provide pre- and post-test counselling, provide reliable information to support those newly diagnosed and address transmission fallacies.

Case Study

The Hepatitis C Trust share the details of their peer-to-peer support work, involving people with lived experience of hepatitis C raising awareness of the virus and supporting people to access testing and treatment. Find out more here.