Berkley Center

Background: This conversation in July 2009 between Paul Zintl, Katherine Marshall, and Thomas Bohnett was part of a Berkley Center review of tuberculosis and particularly roles that faith communities and institutions might play. It was completed and updated by email in August/September 2010. In the interview, Dr. Zintl highlights the inspiration of a Catholic priest in Peru, Dr. Jack Roussin, as the origin of PIH's revolutionary TB work. He stresses the strong links between poverty and tuberculosis, which argue for more purposeful and well defined partnerships with faith institutions.

What possible avenues do you see in our exploration, now at an early stage, of how faith institutions are and might be involved in the issue of tuberculosis?

I would love to see faith communities more deeply involved. There is a need and potential for expanding roles at both the community and the national levels. My impression is that, to date, religious organizations have not been major players in and around the Stop TB partnership. It would be interesting to ask “why not."

There are important voids in work on tuberculosis, and the exploration you are undertaking, looking at faith communities, could be part of the solution. I urge you to talk to Dr. Jaime Bayona; he runs an affiliate organization of PIH in Peru. He led efforts to address multi-drug resistant TB in 1990s. In this work, he had close relationships with community-level church leaders and faith organizations; relationships with national church bodies were less clear and less developed.

Tuberculosis is a disease of poverty, and is heavily stigmatized, so the moral associations between the two are pretty straightforward. Malaria is another endemic infectious disease, but it is not largely confined to the poor; anyone can be bitten by a mosquito. Tuberculosis is far more difficult to contract, unless you are poor, under-nourished and living in over-crowded conditions. And TB is far harder to treat than malaria, particularly among the poor. It is more difficult to treat, partly because those infected can be contagious and when they cough they can spread the disease to their caregivers. Tuberculosis can be exacerbated by malnutrition and crowding. For these reasons, given the very nature of the disease, a faith-based and a community-centered response is needed. Who will care for TB patients if the church does not provide that care?

Public health institutions have not always welcomed the engagement of faith-inspired organizations. What is your sense of what might open better dialogue?

There really should be no obstacles or objections for engagement of faith communities on tuberculosis. There is nothing controversial about TB, or nothing particularly sensitive for faith institutions, such as there is in reproductive health. In fact TB should be a disease of particular importance for faith communities because it is so fundamentally a disease of poverty. The central issue is whether or not people of faith will answer faith’s call to embrace the poor, to respond to their need, to heal the sick of this infectious disease. And, on the other hand, why should public health institutions not welcome faith-based organizations willing to help? What are they protecting? If they were winning the battle against TB, there might be a reason to resist help from others. But they are not winning this battle, particularly not among the poor.

TB, once diagnosed, is a straightforward disease, relatively simple and inexpensive to cure biologically. Anti-TB medications are inexpensive and they work. If patients take their medications, they are cured of their disease.

But while TB is biologically simple, once diagnosed, it is socially and logistically very complex. The patients are poor, infectious, and stigmatized, and successful treatment takes six months. The DOTS strategy for fighting TB calls for a patient-centered approach to overcome this social and logistical complexity. A patient-centered approach should help ensure that patients can access treatment and that they stay on treatment for the full six months required for cure. And it should ensure that we remove the barriers to cure presented by poverty. The DOTS strategy has produced good results, but it falls short when it fails to meet its own standards for being patient-centered, when it allows patients to fall through the system because they are too poor and marginalized to access care or to stay on treatment. These are the patients who fail treatment because they are too hungry to take medicines that can make them nauseous, because they are too poor to pay hidden costs of care, even if treatment is nominally free. And it is these patients who fail their treatment regimens who, as a result, develop drug-resistant strains of TB. Rapid scale-up of treatment using DOTS has been achieved in many areas, but all too often too little attention and too few resources have been devoted to those patients who still fall by the wayside, and who develop and are now spreading MDR-TB and XDR-TB.

Thus an area for follow up is the person-by-person follow up at the community level?

Yes. And this would be a wonderful and appropriate role for faith communities to lead. A major problem is that people start feeling better after four months of treatment, they stop taking their drugs (which are unpleasant). The disease returns, often in a drug-resistant form and is then even harder to treat. Patients need support and encouragement from families and their communities to finish their treatment—to keep taking their medications for the full six months.

Looking at the issue of priority countries or regions, how has Partners in Health decided where to focus its attention?

To a significant degree, the locations where PIH works have been the product of circumstance. Paul Farmer had a friend in Boston (Father Jack Roussin) who died from MDR-TB, which he contracted working as a parish priest in Peru. This was at the time when the WHO recommended against treating MDR-TB patients in poor countries with second line drugs, and leading public health experts did not think that MDR-TB was likely to spread. Our treatment of MDR-TB patients in Lima led to our extensive involvement in Peru, and that led us to help fight MDR-TB in Russia as well. Africa was the next big step, some years later, because of the huge HIV burden and high levels of poverty. Rwanda had asked PIH to get involved for some years and we ultimately decided we had to work in Africa, if we were to influence care and treatment of patients with HIV. Lesotho is a country with a staggering disease burden and a deadly confluence of HIV/AIDS, TB, and MDR-TB. In each country, PIH looks to work with partners, and to establish long-term relationships.

What advice do you have for our quest?

I suggest that you start by looking at the Stop TB partnership, and the Global Plans they released for 2000-2005 and 2006-2015. A key question to investigate is why faith organizations are not more involved in the fight against TB in their communities. Another important question to consider is why some relatively poor countries invest robustly and effectively in the fight against TB, while others do not? It would be good to ask the WHO to share with you the plans that countries submit in their efforts to fight TB to see if there is evidence of FBO involvement. It might be useful to focus on the 22 high burden countries and then also on the regional neighbors of these countries with markedly lower burdens of TB, even in their poorest communities. I don’t know if you will find any evidence of involvement of churches in the delivery of community care, but you may. Thus, key things to consider are where has there been FBO involvement and has it made a difference. Where has it been lacking? Why is there is a lack of faith-based organizational presence in countries with high burdens of TB? Why are people not pushing for more?

Do you see potential avenues to explore on either delivery or messages about pharmaceutical products that are relevant for this area?

Not really, as the links between drug issues and faith communities tend to be rather tangential. Plus, for ordinary, drug-sensitive TB the medications are quite inexpensive.

You might want to focus on the question of inpatient versus outpatient TB care. South Africa and other countries rely extensively on hospitalization for TB patients. We think that outpatient care is preferable and that inpatient care increases the risk of hospital-based disease transmission. In PIH projects, 90 percent of TB treatment is done in homes, while only some 10 percent or so patients require hospitalization. Faith-based organizations might help improve care available to patients in their communities and thereby increase confidence that hospitalization is not generally necessary or desirable for TB patients.

Can you highlight any other faith health experiences that might offer insight on issues or experience?

My advice is to start with and to focus on the poorest of the poor.

I am not aware of cases in Rwanda and Lesotho where faith-based organizations are involved in TB programs explicitly.

In a number of African countries, there are Christian Health Associations that offer primary care. However, they often charge user fees and thus many of their clinics are often empty. People in their communities need care, but cannot afford to pay the fees. Ironically, although the fees are a barrier to care, they are often very low relative to the cost of running a clinic; so the health associations do not serve the people of their communities, nor do they generate any meaningful revenue to offset the cost of the building and the under-employed staff. In some instances, we have been able to invest in the health association facilities in exchange for their agreements to eliminate the fees and the results are striking: the clinics fill up with patients almost immediately. The poor need health care; they just cannot afford to pay for it. And with an infectious disease like TB, if they don’t receive care, the disease continues to spread.

PIH believes that poor people should not have to pay for their own treatment. It is wrong, and it is particularly self-defeating with infectious diseases. Tuberculosis is a disease of poverty and if you expect to eliminate it, or even reduce it to tolerable levels, you have to combat it among the poor. That means providing care for free, and ensuring that marginal hidden costs—financial, social, or logistical—do not undermine treatment success.