Push PCTC for DR-TB

Starting a systematic distribution for the Patients Charter for TB to be given to every MDR patient (followed by all patients) is a small step long over due. Since every patient is 'under control' of the health provider, it can be readily disseminated though the MDR program. Because it is just one sheet of paper, its cost is minimal. Since it can make such a beneficial difference to the attitude of the MDR patient, this should not be delayed for any reason. Thats my view for what its worth / adi.amolo@yahoo.com

Here's a video that raps for rights. If the rapper knew that he actually has rights, would the song be different? http://www.youtube.com/user/ChristiaanVanVuuren

I really think we need to get patients to know their rights, but the programmers will not allow this to happen easily. Fundamentally, in the heart of TB Control, is the need to keep patients un-informed and passive. For MDR, it is even worse, with patients rights denied systematically. So, I dont thin they will not allow the Charter to be distributed even if they say it is part of the big strategy. That's my two cents on this.

The point raised by Kazoo about using existing DR treatment facilitiies has been noted by a few posts as to be not workable in India. This may be true, so perhaps we should think about attaching this idea to the Global Fund grant mechanism, so that the grant itself is conditional upon including this kind of sensitisation and implementation of the Patients' Charter for DR-TB proposals. If our govt won't respect the need for patients rights, perhaps the donors could make this part of their funding programs. The govt would have little choice but to agree. A system of leverage for dignity is perhaps needed, which is a sad reflection on the Indian RNTCP.

We thanks you for your good ideas. Accordingly, we are in the process of setting up a discussion group, and will be sending you and others the details soon.

Bad idea to not get injected. Toxic yes, but its all we got now.
Good idea to make a collective statement which we can all spread around.
Make our demand for rights spread through the community.
We can make that contagious. yeh? / Kristi

World TB Day (WTBD) is coming in maybe two weeks. The governement will make big announcements. Maybe we too can make announcement. A message from us people who know what Amikacin feels like. Announce to the world to know we are not only statistics. We are human. Innocent. We not guilty of anything. Maybe the government needs to hear this and that. Many governements. Maybe on WTBD I will try not to get the injection so my head is clear so I can think better and not giddy and vomit. A day of no toxic stuff. This will be a good day for a human being who has human rights. Toxic drugs is abuse of rights. The governmet know that. But that they will not make announcement about it on World TB Day. Maybe we can. What others think on that?

I agree with kazoo. He says "propose that our little collective harnesses its positive energy and moves forward to develop a concrete plan immediately. It could be a pilot project that hooks into the GLC projects, or attached to existing DR programs in 'quasi-patient friendly' countries like Indonesia, the DR Congo and a few others. I think we could press ahead towards local implementation of the PCTC, based on rights and treatment literacy. Model-making is required to begin the wider process across all of TB." But what wedo about China IndiaBurma and other not friendly country? But propose idea for projects is very good.

Well, Partners in health and MSF are not working in India on MDR but there is Eli Lilly Company (Big Pharma) who is running some kind of DR-TB project in India. But it seems all they seek is PR opportunities that keep their name in prominence, not the well being of people with TB. Their history in TB is probably one of the reasons there are so few drugs for MDR, and that they are so expensive. With their logo on many parts of MDR programmes, few other Pharma companies will get involved in producing MDR drugs as any potential marketing communications benefits are lost before it begins. "Lilly leads the MDR scale-up" is the message everywhere so what generic manufacturer would be willing to either increase production or lower prices when it would be Lilly who received the kudos. Lilly spending on communication have given them an important influence on high at WHO, and their non-transparent funding of both Stop TB, health journalists, and some TB advocates has kept the MDR drug shortage from being resolved for years. They have no interest in rights and responsibilities, nor any interest in the Charter. Their motivation is keeping Lilly's PR benefits and profits coming. So, its not of interest to approach them. More of interest to confront.

The comments from my fellow Indians does not encourage the inclusion of India in this proposed project. That would be a serious mistake. The highest burden country may also be the lowest dignity country. We must find a manner to include India. Thank you all for your considerations.

Please tell where more informations is of MDR in Mozambique. I think it probem sério but no body speak of.
Thanks you / obrigad se você pode ajudar. Sasa Molnar, Maputo

Greetings from Mumbai. Even though this is an excellent idea, I am afraid that those in TB Control will not be helpful. The suggestion that civil society can initiate and develop a model which uses a Rights based Charter to improve outcomes will be seen as too radical by those who are in control. I use my India as an example. Here, The Patients Charter is not disseminated nor is its promotion part of the national program planning. That said, it would be most useful to pilot a local implementation project for MDR patients and to well document the development and results. Perhaps the evidence gathered will eventually open their closed minds, but first we must find a way to advance without allowing the 'Controllers' to stop this idea in its tracks.

The proposal to approach NGOs like MSF and Partners in Health is good but will not help here in India. Although India is the highest burden TB country in the world, the effort to deal with TB is totally controlled by the government, or NGOs just serving as DOT contractors for the same. None of these NGOs would agree to a pilot project on DR TB / rights without the permission of the RNTCP (national program) who would not allow us to organize anything. MSF and Partners are not presently working here in India on DR TB, so this route is block from the start. I think the same will hold true in other big TB problem countries, such as China and Russia, so where do we go in piloting projects where Rights are not respected and health activists are not welcome? However, we must find a way forward. The RNTCP has not been helpful on the PCTC implementation here, although it is so evident that it would be of great assistance in dealing with the disease which kills about 400 thousand people a year in India. I doubt they know how many died from MDR. Frankly, I doubt they care.

Eva's suggestion to approaching Partners in health is excellent. May also I also suggest MSF? They too have independent MDR programmes in diverse countries, but I ignore what ones. / Jean Claude Bimmu

Seeknu raises valid and important questions, which call for us to think them thru and research a way forward. One of the questions is how to get MDR Centres to partner with this, allowing a pilot project to develop. Not easy, as Seeknu pointed out, most are not going to be interested in really empowering their patients. they have had a few years to get the PCTC into the act, but they have not. But I saw that one of the authors of the orginal article, Dr. Salmaan Keshavjee, is from Partners in Health. I believe they run MDR programmes in various countries, somewhat independent of the national TB programmes. Perhaps Partners in Health could be approached to see if they would welcome this initiative. If so, we may be able to avoid this good idea becoming a non-starter. (by the way, I think its brilliant how we are all chipping-in over a weekend and formulating a plan together. It's rare that I'm uplifted on a sunday night!)

First, I wish to say that this is a worthy idea and it has my interest and support. But, let's look ahead and try to see through this possible process. Kazoo suggests we design a pilot program of promoting the Charter at existing MDR treatment centres, and see how the PCTC can be implemented on these local levels. Building rights and treatment literacy through the Charter is reasonably imaginable if we facilitate patient support groups, and I would think the beneficial results would be evident quite quickly. But, and there are many buts — how would we get the Providers on-board as hosts and partners? We all seem to agree that the providers and programmes are not supportive of Patients rights or responsibilities, so why would they welcome our intervention? Most local providers would pass the buck upward to programme managers, who are not likely to support our efforts. Dead end, once again. Also, each of the sites we try to work with will need a person or two as focal points or coordinators — are these People with TB or are they health professionals? Who will pay them and with what resources? Lastly, how can this be monitored, evaluated and reported accurately? Developing indicators on the 'buy-in' of the Charter will be a big challenge. How do we measure rights stakeholding?
But, this is still an idea worth developing.

This is not a 'moan'. Asking why the Charter has not been promoted by WHO nor by almost all governments is important, and is a question that needs to be answered.
Myself, I think it is essentially the result of the 'top' seeing the 'bottom' as expendable. Every year more people die from DR-TB while the WHO and their experts have more meetings around the world in five star hotels. While people with DR-TB are treated like criminals, those responsible at the top profit from increased funding. Until I hear a better answer, my thinking is along these lines. Not moaning, but maybe I'm groaning.
But us going past the "Why?" as Kazoo's blog suggests, is the right step. People with MDR have rights, but they are not informed of them. People with MDR should have a say in their treatment, and in the effort to confront the pandemic. Patients should no longer be kept in silence and ignorance. So, we must act.
Push PCTC for DR-TB is fine by me.