Earlier this year Dr. Jonathan Stillo published an article in the International Journal of Tuberculosis and Lung Disease with Mike Frick from Treatment Action Group (TAG) and Yali Cong from Peking University where they discussed some of the issues around TB research including making sure that communities are represented and that clinical trials produce data about people who will ultimately benefit from the drugs- for example, many trials exclude people with comorbidities, most exclude pregnant women even though they are more prone to TB.
For a long time, human rights have not played a major role in the fight against TB, even less so in TB research. However, this is changing. There have been calls for respect of human rights and ethical principles in every area of TB care, including research in The WHO‘s End TB Strategy and Ethics Guidance and more recently in the Declaration of the Rights of People Affected by Tuberculosis. Achieving the desired reduction of the number of people who get sick and die of TB will be impossible without the development of new tools and strategies to combat TB. There is little suggestion that TB research will address concerns related to the availability, accessibility, and acceptability of TB diagnostics, drugs, and prevention in the near future. The article considers this as not only an ethical issue, but also a barrier to achieving the right to enjoy the benefits of scientific progress and the right to health. The article also reflects on community involvement in research and offers recommendations. Most importantly, they argue that the state is responsible under international law for the continued realisation of the right to health and that the realisation of the right to health requires the realisation of the right to science.
Current gaps in Tuberculosis research
People with TB experience a number of challenges which include; late diagnosis, limited therapeutic options, challenging side-effect management, and often a total lack of palliative care. WHO in its report in 2017, estimated that only 25% of the 558,000 people who fell ill with rifampicin-resistant or multidrug-resistant TB were started on treatment. This is attributed to a lack of research as well as a failure to connect people to the advances in TB care that previous research has yielded. The new frontiers in TB care and control of the Ethics Guidance opens with the observation that there is an urgent need to develop an enhanced evidence base for TB prevention and treatment and to improve the standard of TB care. This urgency assumes that to reduce TB incidences and mortality, WHO’s End TB Strategy requires the use of optimal current tools and the introduction of new tools including a vaccine, new drugs, and point-of-care tests for all forms of TB by 2025.
Tuberculosis research and the right to health
Human rights are rights for everyone by virtue of being human. The Ethics Guidance is built upon these rights, describing them as “concrete legal expressions of ethical values which include human dignity, equality, non-discrimination, participation, solidarity and accountability. According to Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR), governments must ensure that quality health goods and services are available without discrimination, furthermore it should be both physically and economically accessible by everyone. It also means that information about TB and its prevention, diagnosis, and treatment should also be made available and accessible to those who need it. This would therefore mean that, for example, one’s membership in a minority group or inability to afford the direct or indirect costs of care, should not prevent them from accessing quality TB prevention, diagnosis, treatment, and support. However, there is a large gap in the availability and accessibility of the goods and services required to manage TB, as well as many local inequalities which will limit access among the most vulnerable groups.
The global TB community is not succeeding in ensuring the equitable distribution of TB-related existing goods and services; however, the distribution of existing goods and services is only part of the problem. As there is advancement in science, our understanding of what constitutes the highest attainable standard of health must also advance.
Tuberculosis research and the right to science
As seen in the guideline, it calls for scholars and activists to focus their attention on the neglected corner of human rights law which includes, the right to enjoy the benefits of scientific progress and its applications. It is important to explain science concepts in the Ethics Guidance. Efforts to define and apply this right count among the most promising developments for promoting needs-driven Research and Development. Market-based approaches to innovation neither adequately address established epidemics such as TB that primarily affect the poor nor anticipate emerging global health threats. Recommending government support for health research as an obligation of government under international human rights law could strengthen advocacy, action, and accountability.
Conclusion: even with advancement in medical science, many people around the world continue to live with little reasonable expectation of benefitting from research that redraws the frontiers of knowledge and medicine. Many people at risk of TB struggle to access even decades-old diagnostic, therapeutic, and preventive technologies.
If everyone has a right to share in scientific advancement and its benefits where are our pragmatic efforts to improve the spread of these advancements? A solution to the inadequacy of research and inequitable distribution of its fruits must be developed.
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