In December, the PFCHR helped support this interdisciplinary project which aims to promote a rights-based approach to preventing and treating tuberculosis. Health and Human Rights Committee members Evan Lyon and Brian Citro both participated in the conference, which was held at the University of Chicago center in Delhi. Read more about the Health and Human Rights Faculty Initiative here.
“I think we have failed in the issue of TB for two reasons,” Anand Grover, director of Lawyers Collective HIV/AIDS Unit and the former UN Special Rapporteur on the Right to Health, said during his keynote speech. “The government is not the provider of TB treatment in India, it is the private sector, and secondly the rights-based approach is not used at all in TB and unless we go there we will not solve the problem.”
Bringing together various stakeholders on TB issues like Mr. Grover, the conference “Developing a Rights-Based Approach to Tuberculosis (TB)” attempted to ascertain what was happening in relation to TB and human rights in India. The conference articulated the development of a rights-based approach that considered the epidemic through a socio-economic stance as opposed to a biomedical one. Occurring in Delhi on December 5th and 6th, the conference unfolded in two parts: a series of various abstract presentations on the first day, followed by panel discussions on the causes and solutions to the Indian TB epidemic.
“We originally planned to look at the situation in India...also undertaking a more activist approach by using strategic litigation to try to address [the TB] problems,” Mihir Mankad, a health policy adviser at Save the Children UK, said.
The idea for the project was originally conceived on a broader scale by Mankad and his research partner, University of Chicago Law School Lecturer Brian Citro, during a research trip in India in 2012., When Citro began his job at the University of Chicago shortly after, the pair noticed that there was a call for proposals at the University’s recently opened center in Delhi and submitted their proposal of a rights-based approach to TB
“We decided to...put in a proposal for a research/fact-finding trip in India to investigate what the situation in India was about regarding TB prevention and control,” Mankad continued, “and also with regards to TB and human rights in India.”
While the guidelines set by the University of Chicago limited the geographical scope of their work to India, the resulting proposal came to include both a research trip to India along with a conference on TB developed from the findings of that trip.
Following the acceptance of their proposal to the University’s center in Delhi, the pair spoke with University of Chicago doctors Kiran Pandey and Evan Lyon, who had previously expressed interest in the project.
“Although our TB program was successful, it was nowhere near as successful as it had needed to be,” Pandey said, in regards to his work in a small hospital in Nepal about five years ago. According to Pandey, he felt that his hospital’s protocol was strictly program-oriented and failed to consider for a patient-centered approach. As a result, Pandey was instantly attracted to the TB project when he learned that its approach was rights-based.
“After [Citro and I] got started in a conversation about TB we realized we were exactly thinking in the same lines,” Pandey said. “So it was only natural that things would set off in the same direction.”
Lyon had previously worked with the human rights program affiliated with the University of Chicago. Having worked on health and human rights issues, including TB issues, Lyon was introduced to Citro through his interests and teachings at the university’s human rights program.
“Within minutes, we were off and running on this project,” Lyon said. “I couldn’t even remember how we got started because it seems like we got to work as soon as we talked.”
Shortly following the addition of the doctors into the project, two University of Chicago law students, Reilly Paul and Tyler Cerami, joined the project via their participation in the Law School’s International Human Rights Clinic.
Both Paul and Cerami worked with the Human Rights Clinic over the past summer. As a result, the general scope of the project was first brought to their attention during their interview process while attempting to join the clinic.
“There was a general awareness that some sort of project in India regarding health could be done,” Paul said, “but we did not hear about the specifics of the project until we were already involved in the clinic.”
“As I did more research into the situation in India,” Paul said, “I felt very passionate about it.”
While Paul had prior knowledge about the situation of human rights in India, specifically those with women, her research on the issue of TB convinced her to join the project and contribute to the cause.
Cerami was drawn to the project due to his background in international relations, which largely focused on Asia. When he first heard of the project he quickly realized that it lined up perfectly with his undergraduate studies.
Once the team was assembled, the project prepared for the TB conference. While Mankad and the two doctors shared similar roles, Citro and the law students took on the bulk of the logistical planning, which included emailing participants and communicating with them regularly.
“I think the three of us supplemented that [work] so far as we could,” Mankad said in regards to the rest of the organizers’ roles in coordinating the conference.
In addition, Mankad and the doctors helped put together the agenda, determined which working papers would be presented, complied questions for the panelists, and choose who would be on which panel.
“We put up the research and the strategy for the whole conference,” Pandey said.
While the process was generally smooth-sailing, the group did hit a few bumps in the road. Before their research trip in September of 2014, the organizers were speculative as to how their Indian partners would react to their proposal and if they would even buy into the conference. As a result, the process of reaching out and pitching their ideas to various partner organizations became increasingly difficult.
“It’s more of us being able to connect up with the right people working in India on the issue to make the conference a success,” Mankad added.
Nonetheless, the TB project was able to partner with the University of Chicago Center in Delhi and the All India Institute of Medical Sciences (AIIMS). Both of these organizations were responsible for providing funding and ultimately co-sponsoring the TB Conference. While the partnership with AIIMS served as a crucial role in the planning of the conference, Mankad feels they are not currently able to assist in the near-sighted goals of the project. However, the group still hopes to keep contact with AIIMS in order to create a substantial buy-in from doctors and health care workers later on.
“They are not the appropriate institution to do what we want to do right now,” Mankad said, “which is to try to have the approach understood more broadly by policymakers in India.”
The TB project was also able to form a relationship with the Revised National TB Control Program (RNTCP), which assists in managing the Indian government’s TB policy. The partnership was ultimately able to secure a panel discussion onHealth Systems and TB in India with RNTCP Director Dr. KS Sachdeva. Most importantly, the partnership allowed for the organizers to share their views on TB with some of the key policy-makers in India.
The conference consisted of a variety of keynote speakers and panel discussions from representatives of various local Indian organizations regarding the state of TB in India and how to approach the issue. These discussions included panels such as Stigma and Discrimination in TB and Health Systems and TB in India,while the keynote speakers brought together esteemed Indian health policy-makers such as the former special rapporteur on the right to health, Anand Grover.
The conference delved into deeper issues regarding the fundamental reasons about why a rights-based approach to TB is so important. Keynote speakers such as Grover went into detail about some of the most important issues that patients with TB in India currently face.
“It is an issue of discrimination and stigma,” Grover said, “which is compounded if you are of a particular group.”
Grover believes that the issue of TB in India is widely perceived to be a biomedical problem as opposed to a socio-economic one. He pointed to the fact that hardly anyone with TB in India knows that the disease is curable, citing it as an example of the lack of communication between hospitals and the general Indian population. As a result, Grover feels that the lack of aggressive campaigns claiming that TB is curable leads to the millions of people who have contracted the disease to become completely oblivious that they could even be treated.
“If you do not treat people with respect and dignity then you will not solve the problem,” Grover concluded.
Others, such as Dr. Sharma from AIIMS, agreed with Grover’s stance, but pointed out the issues of such an approach, “What is the fault of the TB patient, but what is the fault of those around the patient?” Specifically, Sharma is referring to the contagious nature of TB and the rights of people to be free from contracting TB on their ride home from work.
Panel discussions such as the panel on Health Systems in India dove further into the idea of private care. Sachdeva pointed out that, while the program is open to engaging with the private sector, they are worried about increasing transaction costs.
Dr. Achuthan Nair Sreenivas of the WHO in India agreed with Sachdeva’s point, adding that TB programs can only be so reliant on the private sector or else they would become, “destructive.”
Another member of the same panel, Dr. Sandeep Ahuja from Operation ASHA, pointed to his project as an alternate solution to tackle the TB epidemic. Ahuja cited the 74% TB detection rate in the areas that ASHA has covered as opposed to the average Indian detection rate of 51%.
While the opinions of the panelists might have varied, the overarching theme was consistently to ensure that all citizens had access to adequate treatment of TB. And that started by reshaping the way that the Indian government tackled the epidemic.
“If you don’t change yourself then you will never change the world,” Grover said during his keynote speech, “this is a war we have to wage.”
With the conference now behind them, the organizers are shifting their focus to educating and sensitizing different stakeholders to the relationship between human rights and TB.
“Initially it’s just a matter of making sure that people in the judiciary...have an appropriate understanding of what a rights-based approach to TB is,” Mankad said.
With that in mind, the project members hope to hold a judicial training this coming Fall in order to educate lawyers and judges on the relationship between human rights and TB. Following the training, Lyon and Pandey may travel to AIIMS in order to do a health and human rights lecture series. The group hopes to culminate their endeavors in January of 2016, when they are scheduled to guest-edit an issue of the Health and Human Rights Journal out of the Harvard School of Public Health that will be dedicated to TB and the right to health.
All in all, Mankad hopes that the project’s efforts will provide the group with a better understanding of a rights-based approach to TB and ultimately help translate their work into substantive policies and actions.
“The end goal is for programs to change from their current biomedical centered approach to a more rights-based approach,” Pandey said. “The reason that needs to happen...is because TB is a socioeconomic disease as much as it is a biomedical disease, and a rights-based approach to TB would account for all these. That’s the change that we need to make happen in these TB programs.”
By Nik Dhingra