Online discussion to emphasize the role of people with HIV/TB
Submitted by Bobby Ramakant (bobby) about 1 year ago
Action: Online discussion to emphasize the role of people with HIV/TB
Stop-TB eForum Resource Team, HDN
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Dear Stop-TB members,
To mark this year’s World AIDS Day on 1 December and United Nations’ Human Rights Day on 10 December, the Stop-TB eForum is hosting an online focused discussion, from 20 November to 10 December 2008, to recognize the contribution, and emphasize the role of TB and HIV affected communities.
SPEAK-YOUR-WORLD
Take this opportunity to speak-your-world, share your experiences and perspectives on the vital role people from the affected communities can play to improve TB and HIV responses on the ground.
In face of the global pandemic of drug-resistant TB, which threatens to rewind recent gains in confronting both TB and HIV, a global consensus must be reached on the rights and responsibilities of patients, the public and health programs. This will be an essential moral, strategic and practical step forward in mobilizing communities and health systems to ‘scale-up’ on quality drugs and diagnostics, and a leap ahead for assuring dignity of the affected communities.
People with TB, multi-drug resistant TB (MDR-TB), extensively drug-resistant TB (XDR-TB) and/or TB-HIV have clear rights and responsibilities recognized and promoted by WHO and a number of Governments in form of Patients’ Charter for Tuberculosis Care. However, its promotion and implementation in a number of high burden countries has been lacking. To download the Patients’ Charter for Tuberculosis Care, click here.
Using the Patients’ Charter for Tuberculosis Care as a tool to empower affected communities with, in raising their consciousness about their rights and responsibilities, and mobilizing them for advocating for achieving the International Standards for Tuberculosis Care, is crucial. To download the International Standards for Tuberculosis Care, click here.
We look forward to your responses,
Stop-TB eForum Resource Team
Health & Development Networks (HDN)
Website: www.healthdev.org/stop-tb
Email: stop-tb@eforums.healthdev.org
(Note: To join the Stop-TB eForum, send an email to: join-stop-tb@eforums.healthdev.org)
Keywords: consultation dialogue discussion drug resistance extensively drug-resistant MDR-TB multi drug-resistant online TB TB/HIV tuberculosis WAD 2008 World AIDS Day XDR-TB
Stop TB
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9 sugata about 1 year ago
Dear Stop-TB members,
Recently I have the chance to go through the Stop TB strategy in details and made an important observation (to read the Stop TB Strategy, click here or go to: http://stoptb.org/resource_center/assets/documents/The_Stop_TB_Strategy_Final.pdf ).
It is very nice to see that providing TB and HIV-TB collaborative services to the marginalized, hard-to-reach and poor population is one of the main components of Stop TB initiative.
While going through the list of marginalized and high risk groups for whom special attention of TB control program is strongly recommended in the Stop TB Strategy, I could not find sex workers in the list. I don’t find any valid reason not to mention about sex workers in the long list of high risk groups.
From my long experiences of working with sex workers I can confidently say how much important TB services are for the sex workers.
Sex workers are highly stigmatized and criminalized community that often prevents them from having good access to the healthcare services including both HIV and TB and immunization for their children. Moreover, gender inequity to utilize health services equally affects the female sex workers as a usual social phenomenon.
Grossly compromised financial status, chronic malnutrition, alcoholism and injecting drugs and poor living conditions are some of the critical factors to enhance TB transmission among sex workers. I have seen sex workers suffering from infectious TB in many of our HIV prevention programs (Targeted Intervention) and spending money from whatever resources they can mobilize to find the right treatment, when the TB Microscopy Centre is at a stone throw distance.
We also did a pilot program of providing TB services to the female sex workers within the one of the HIV prevention programs of India.
I strongly feel the National Managers of AIDS and TB Control Programs of the countries should sit together to develop joint strategies and plan to provide comprehensive TB services to the marginalized, criminalized and hard-to-reach sub groups who are already being targeted by the AIDS control program.
TB is a strong vertical program at the public health system level while HIV/AIDS is a multi-sectoral initiative with strong community involvement. These contrasting characteristics of the two programs would be very helpful to develop critical collaboration at various levels. Providing TB services to sex workers and other high risk groups through a joint HIV-TB effort might be a good operational starting point for HIV-TB collaboration.
Thanks
Dr Sugata Mukhopadhyay
New Delhi, India
Email: sugataids@yahoo.co.in
Unsuccessful access to good clinical practices for HIV/TB affected people:
1) Late diagnosis of TB
2) Late diagnosis of comorbidities HIV/TB
3) Late access to opportune and universal DST
4) Without access to preventive treatment for other opportunistic infections during TB treatment (Pneumocystosis, acute respiratory infections)
5) Late or without access to appropriated and opportune treatment of adverse events associated to TB or TB and HIV drugs
6) Stigmatizating and humiliating access to Emergency room
7) Delayed and poor quality access to inpatient attention
8) Poor access to education in health and knowledge of Human Rights in Health (HRH).
9) Unacceptable high rate of dead.
10) Unacceptable highest risk of nosocomial transmission of MDRTB in hospitals
11) Without access to respiratory protection plans
12) Without access to secondary prevention post TB treatment (INH post TB treatment)
13) Without access to public health insurance and economical public support.
Nearly all of those items are shared with their TB-Non HIV brothers.
So what we should do:
1) Universal access to culture for diagnosis and DST (including rapid test) at the start of treatment
2) Universal access to HIV free and voluntary test
3) Free coverage of preventive treatment for O.I. in TB and HIV programmes
4) Free coverage of drugs and medical attention for adverse events during treatment
5) Social support, advocacy and education in HRH for both: affected people and health workers
6) Public Investment in better public health establishments
7) Opportune access to both specialists in TB and HIV
8) More investment in TB control in health establishments
9) Free access to respirators (it’s more cheaper than the cost of one TB retreatment, including MDRTB, one by one people)
10) Secondary preventive treatment with Isoniacid (post TB treatment)
11) Progressive public health insurance and economical public support for all TB patients and for their families.
Regards
Oswaldo Jave
Consultant in MDRTB
Head of Epidemiology Office, HEP, Peru
We are glad to share our experience on HIV TB Coinfection at field level.
We are covering 22 Mandals and we linked with PHC center. From each center One out reach worker was apponited.Our out reach worker was identified the clients and Refers to District Micro Biology Center to test for sputom . When the results are noted as positive then immediate action will be taken and refer to DOTS. After that they link the clients with (ANM, AW AND HIV/TB ORW).
After intiation of the Drug follow up activity has given by DOT providers up to the completion of course.In between the follow up they motivated to follow up test for every 3rd month and 5th month. After completion of the coure (by the suggestion of the Medical Officer ) when the results are Negative then only they want stopped the Drugs.
With Regards,
Sudha.Kalangi,
SHIP
Email: kalangi_budigi@yahoo.co.in
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This comment was updated on 23 Nov 2008, 7:53
Engaging corporate sectors into expanding and extending National TB Programs of the countries
Corporate sectors are involved in public health intervention and social development in many countries through their CSR (Corporate Social Responsibility) commitments and CSR operational units.
In India the corporate sectors are involved in HIV/AIDS intervention activities through strategic partnership with the NGOs and National HIV/AIDS Program, which is popular as public-private partnership (PPP).
Recently, while providing technical assistance to a CSR unit which is involved in HIV programs among truckers and mobile population in a number of places in India, I was able to convince them to provide TB services as well as a part of National TB Program (RNTCP).
Stop TB Strategy has strongly recommended to pay special attention to the mobile population (along with other high risk and difficult-to-reach groups) which is at considerable risk of both TB and HIV due to their grossly compromised life style imposed by frequent movements for their livelihood.
Most of time, the mobile population do not have sufficient access to the public health services including TB and HIV. The local NGOs are often utilized by CSR units to reach them with appropriate and adequate information and services.
The CSR-NGO partnership would be critical to function as the extended National TB Program under a strategic and larger public-private partnership.
The CSR-NGO partnership has the opportunity to provide TB services as an ‘add on’ to the ongoing HIV program. There is no need to invest extra funds for TB services during initial period. This aspect might be attractive to the corporate sectors, especially during current economic recession and sagging business trend.
Why ‘no immediate investment’ for added TB services?
1) There is no need to recruit additional human resources for TB. The existing HIV workforce can be effectively utilized for TB
2) The training of the NGO and CSR staffs including outreach workers and peer educators can be easily conducted by the District TB Unit of the National TB Program through an effective partnership at the operational level (or by a MoU at national or provincial level)
3) The necessary IEC materials can be also provided by the District TB Unit. There is no need to make investment for developing separate IEC materials for TB in the program.
How the corporate-NGO unit will initiate TB services?
A. At outreach level – as part of responsibilities of outreach workers and peer educators
1) TB awareness generation jointly with HIV through effective IPC (Inter Personal Communication), display & distribution of the IEC materials
2) Basic screening for TB with referral of the suspected cases to the respective TB Microscopy Centres and follow up
3) Later on, when the program will become mature, selected outreach and peer educators can also function as community DOTS provider
B. At clinic level - If the CSR also runs a clinic for STI & VCT services as a part of the HIV programs
1) TB Awareness generation through Health Education and counseling
2) Screening for TB among the clinic attendees through standardized questionnaires with referral of the suspected cases to respective TB Microscopy Centres and follow up through outreach workers
3) Developing simple recording mechanism for TB related activities to provide regular reports to District TB Office in the line of National guideline
4) Later on, while the primary activities will be intensified and district level partnership with CSR will be consolidated, the clinic can be further utilized as an extended DOTS and microscopy centre of the National program
5) Subsequently, the clinic will have the opportunity to do screening of selective HIV-TB cases through the VCT and microscopy services under the same roof
6) As part of futuristic programs CSR can also initiate mobile medical services to provide primary STI, VCT and TB services in the same package
Why the National TB Program should go for increasing number of partnerships with the corporate sectors as one of strategies to extend and expand DOTS
1) Regularized funding pattern of the CSR unit which is important for sustainability of the partnership and program
2) If the CSR already has good outreach activities in the mobile, marginalized and hard-to-reach groups for HIV intervention, that can further provide the National TB Program an useful platform to reach those high risk population for expansion of DOTS program.
3) Good outreach activities of the NGO partners would be equally helpful to develop effective community participation, engagement and mobilization in the TB control initiatives as well.
As I am presently involved in providing necessary technical support to the CSR for effective implementation of TB control initiatives within the ongoing HIV program among mobile population, I think this would be a very good opportunity to inform the Stop TB forum about my experiences.
If the readers find it interesting, the progress of this initiative can be posted here time to time.
Regards,
Sugata
Dr Sugata Mukhopadhyay
New Delhi, India
I think we have under-utilized the community-based human resource in the fight against TB/HIV.
Just like HIV virology training that I became conversant with in 5 days, TB bacteriology, if rolled out to communities can help remove the perspective that TB is and can only be managed at health-care facilities.
I demand TB Treatment literacy to communities, and meaningfully utilizing community-based human resources to improve TB/HIV responses.
Kennedy Mupeli
Botswana
Email: kennedymupeli@yahoo.com
Dear Stop-TB members,
In my experience with TB/HIV patients in Mozambique I think we should focus on 3 points:
1. IEC for patients and communities about the close relationship between TB and HIV
2. Training ALL health workers (including those at community level) on TB/HIV and TB diagnosis with special focus on smear negative pulmonary cases and extra-pulmonary TB (using WHO guidelines) and Isoniazid preventive therapy (IPT) and Infection Control (the 3 Is)
3. Development of new rapid tests (like existing ones for HIV and malaria) for TB is a high global priority because as we all know most TB/HIV patients in Africa are not diagnosed and are dying from a disease that can be prevented and cured. We can change this.
Paula Perdigao
TB consultant, Mozambique
Email: paulazen@tropical.co.mz
Dear Stop-TB members,
During the course of my assignment as a photojournalist on health related issues in Nigeria, it came as a surprise to me that a city like Lagos with about population of 25 million people can only boast of very few TB centres with little or no medical facilities to carry out required medical tests.
Imagine excuses like our generators are bad and therefore no power supply for four days so healthcare workers can't conduct chest x-ray with hundreds of TB patients needing urgent diagnosis and appropriate treatment at these TB centres.
How can Nigeria meet up with the stop TB vision? The experience of people with TB in Nigeria tells a different story than the government version of TB care in Nigeria.
The role of people living with TB is enormous and central to effective TB responses - their knowledge, perspective needs to be documented and taken cognizance of so that appropriate improvements can be meted out.
Ajumobi Adedayo
Photo-journalist, Nigeria
Email: christianhalloffame@yahoo.com
Dear Stop-TB members,
I have recently read the interesting article by Zoe Alsop on the management of drug resistant TB in Africa and the practice in some areas of compulsory isolation.
Before I left South Africa in 1999 we already had multi-drug resistant TB (MDR-TB) so much so that King George Hospital in Durban said that they could no longer receive our MDR cases.
Our patients shared the same wards as general patients many with HIV infection and conditions such as diabetes making them vulnerable.
International policy around that time was not to hospitalise patients.
This made it very difficult to educate them about their disease and the importance of regular treatment for the full length of treatment.
They were often so shaken by the diagnosis (which they thought meant HIV and a terminal illness) that they could take in very little information, and they then travelled home on crowded public transport.
Some hospitals kept their patients in designated wards for at least 2 weeks, during which time they could learn about their illness which was curable, first 'sending the germs to sleep,- but stopping treatment early made the 'germs' wake up stronger than ever and could be incurable.
We could also learn of the difficulties a patient may have to get his medicines, and whether he would have to move to another home.
I feel that it is very important to have patients in hospital for some period after diagnosis.
Theresa Watts ex Africa!
Email: teew@keme.co.uk
The need for people valued communities. In addressing the issues of TB/HIV the new patient’s charter and new standards set a positive tone with both rights and responsibilities. However, many people with that have active TB/HIV or at risk of to either or both theses diseases will not really benefit from these policy directions. This is because even in this forum we have splintered the focus into vertical thinking, in attempt to simplify the problem.
We must realize that we are in what Ronald Barnett has described as a new time of super complexity. http://www.timeshighereducation.co.uk/story.asp?storyCode=401782§ioncode=26
Or as Frans M. van Eijnatten describes as the new world we live in as a chaordic system
http://videolectures.net/antwerpen04_eijnatten_iccom/
As Einstein so aptly stated; “We cannot solve our problems with the same thinking we used when we created them” This reality is reconfirmed to me almost on a daily basis in my work in education, health and business, as I apply lessoned learned from past experience with some success but not the full potential I had hoped for. It has been only recently that I have shifted my focus on addressing the issues of complexity systems (in a holistic manner) and combining it with valuing the experience of the individual.
To illustrate this point I give the following example –
In my community (a complex system) I have several roles – teaching in a university (management, HR, ethics), a small business owner (health and beauty/catering) and health consultant health systems/ TB/ maternal and child health – each of these roles have some experiential crossover but are in essence complete independent networks within the complex system). Often in the past I would try to advocate to the different networks their roles in addressing TB or HIV issues in terms of human rights, socio-economic costs and ethics. Though everyone would respond in some affirming manner, most would not really engage in actions to address the problems associated with underlying issues such as access to drugs, addressing stigma issues, access to food, heat and shelter – or jobs, etc… This, like many out there working on the issue; I found to be very frustrating. However recently, while working with my business on new methods of improving customer relations by managing customer experiences that I realized I was not focusing truly on the customer of my information. I was using techniques of the past to; sell, persuade and market the social issues, rather than to use clues about how these people valued the issue, on an emotional level. This became important in my business as we have a policy to hire and train women at risk (economically) or who have been socially marginalized as means of community/individual prevention (the rational that women who have skills and access to a livable wage more often use the resources to improve their own and their family’s health – education, clinical services, nutrition) – I did this without really consulting both my community and my staff emotional; however utilized some superficial tools such as focus groups and community forums. I say superficial because often these methods of getting to understand what people value or want/need or desire are often one-off events using a sample “representative” population, and do not often look at the change of events that could occur or do occur after the focused population gets the change or service is desires/wants or needs.
Though my business grew and was able to generate profits to expand our corporate social responsibilities, we began to encounter challenges and problems from people in the community, who often (in my mind) reacted very strangely. This was because though I topically addressed issue and concerns in the meetings and listened intently; I completely missed many of the deep emotional/value clues.
It was only after having to deal with these key stakeholder (in reality customers, because my business thrives on local community) in addressing some of their deep fears, concerns and jealousies (by being aware of the their clues and managing their experiences towards getting them to purchase the ideas and our actions), that we have made any inroads in terms of acceptability of our social-enterprise policy and in terms of getting them to truly think about and take action in the greater interest of the community and all members of the community.
So taking in the complexity – linking in the individual hidden values and managing them in a way that still provides a positive experience for each client towards becoming more inclusive of everyone rather than forcing integration of people whose lifestyles emotionally threaten them are we able to make some changes in truly addressing the conditions of a community in trouble. Only by looking at TB and HIV more as symptoms of underlying social problems rather than problems in their own right, it is only then will we all be able to address theses unfortunate human conditions and bring people back into the center of the communities where they rightly belong.
Rowan Wagner
The Indian journalist Gaurav Saigal has well documented the experience of people who are not able to complete treatment (online at: http://www.healthdev.org/viewmsg.aspx?msgid=aeb62f3a-2914-4bd1-b07d-c6ce4913fac2 ).
This problem must be put in the spotlight of every TB programme's monitoring and evaluation at every level!!! I hope these key challenges will reach all the different people contributing to the TB programme from Dr RK Kureel, in the Vishwarganj PHC; to Dr LS Chauhan (who heads the National TB programme in India) and up to the head of the WHO's Stop TB department.
We should not put our "conventional DOTS" into the second class programme instead of all fancy things.
Now, in this case, the role of "community involvement in TB care" and "engagement of the TB patient and community" must be one of the important parts of the TB programme. It is also emphasized in our Global Strategy to Stop TB.
Family and community TB care must be one of the TOP PRIORITY in a country like India and Indonesia and other high-burden TB countries.
In this case, I will recommend, back to the basic DOTS and improving family and community TB care. They need our hand to be more close to the real work in the community.
Dr Carmelia Basri
TB patient and Community Care (PAMALI TB), Indonesia
In Zambia we had an issue, where the government wanted to be governing NGOs in the country with the overseers being permanent secretaries. I wonder what NGO would have meant if they had succeeded.
Bravo to the excellent work of activists (both infected and affected), civil society for their heroic activism and advocacy which lead to influencing legislation to have the NGO bill thrashed.
Now apparently, I hear the Ministry of Health is to sign a document with the donor world without having the direct beneficiaries (you and I, who make civil society) involved. This regards the International Health Partnerships which I must recommend is a brilliant idea but should not be governments baby. We know that meeting set targets like MDGs awards government with lamentable failure.
Civil society don't be misled this is not elections but your life at stake. Letting government signing a country pact without involving or rather without our input is stabbing ourselves in the back. 1st &10th December could be used to advocate against such malicious government damage to society. We have the right to Health Information and this IHP+ which I know most of us know nothing about because government wishes you and I not know desperately needs our input for our benefit. By the way do you know that ministry of Finance has money for NGO capacity Building? Do you see why the media is advocating for their media rights? Well why can't we...
Honestly a victim of the disease tells a different story to that of the government. TB/HIV activists and advocates make some noise. Our experiences documented are key to the improvement of Health, saving life and a guarantee to meeting set targets -MDG, Vision 2030 etc (thanks to ajumobi Adedayo for the inspiration)
Kondwelani Jose
Information officer, Zambia
I am very delighted to tell our experience to the Stop TB community, the vital role people from the affected communities play to improve our TB/HIV responses on the ground. Partners IN Health/Zanmi Lasante, I worked for, has put at the very beginning of the implementation of the program a special and strong emphasis on the role that people leaving with both diseased can play. Their contribution is critical to the success the program. Our experience leads us to promote the active contribution of the community to address both diseases.
Let me recall the group that our program relies heavily on the productive participation of community health workers who hand the drugs to patients and supervise the intake while providing the appropriate psychosocial support. These tasks are particularly performed by the so-called accompagnateurs. This group represents infected and affected people living in the affected communities.
Community health workers have served to bridge gaps in access to care that arise from lack of communication for patient follow-up and long distances patients to travel for health problems. Community health workers are lay people who are selected by the community to be trained and employed as health agents. Such cadres had been involved in directly observed administration of tuberculosis medicines since the mid 1980s in Haiti. In 1999, modeled after the successful outpatient treatment of tuberculosis, access to HAART was expanded through a community based program called the HIV Equity Initiative. A cadre of CHWs was trained to administer HAART to patients in their homes as directly observed therapy (DOT). The CHWs were also trained to provide prevention education to communities, to minimize stigma and to refer to the clinic possible HIV and TB contacts or those at risk for infection. The CHWs thus became a critical interface between patient, community and the CBS.
By tapping this important cadre to strengthen the wider health system at primary care level, the program aimed to create a virtuous cycle between strengthening the wider PHC services that support poor households and antiretroviral treatment outreach, widening the health impact on communities. Initial evidence indicated improved service uptake.
If you want to know more about roles and perceptions of CHW about their roles in PIH programs in Haiti, Read: AIDS Care, 2007; 19(Supplement 1): S73_S82
Community health workers as a cornerstone for integrating HIV.
Lambert Wesler, MD, MPH
Zanmi Lasante/MOH
Haiti
Email: wlambert@pih.org
Dear Colleagues
Most TB patients and former TB patients are still hiding and timid to speak out. Health workers and social workers should provide psychosocial support and drug adherence counseling to TB patients this will help them build the confidence to speak out and if their capacity is developed could become TB literacy champions.
Another role is to involve former TB/HIV patients in the implementation of TB/HIV collaborative activities.
Chibuike Amaechi
The Good Neighbour
Lagos, Nigeria
We need to engage the people directly affected by HIV and TB at every level of the response. Labour League Foundation facilitates AAGAH (Anti-AIDS Global Awareness for Health) initiative in Delhi and national capital region in India, reaching out to large number of migrant workers and those working in un-organized sector.
Arif Clinton, India
Dear all,
Thank Dr Marcos , for the posting you have given , there is a detailed information, around the players and stakeholders over this huge challenge of HIV-TB co-infection,
Your last paragraph speaks volumes of what planners think and put in place and the reality on the ground is.
In my country Kenya there was excellent celebrations at the Worlds Aids Day yesterday -2008 and commitments made over the reduction of HIV prevalence rates and acces to medicine for treatment, but no mention of TB, leave alone wearing the Red stop sign ribbon for stopping TB!
BUT WHO SHOULD HAVE DONE OR TAKEN THE LEAD ,? is it civil society or the government or myself as an individual?who has the courage?
Some or all of us must answer this questions.
Thank you and regards.
Dr Tobias Kichari
Coming from African communities where TB, HIV infections and AIDS are very
evident, my heart bleeds at seeing the inertia and the very luke-warm
approaches by those in authority, be it in the big city offices in Washington and
London or in the villages of Lobatse or Livingstone, in Botswana and Zambia
respectively in Africa.
When you live every single day with patients infected with or affected by
TB, HIV infection or AIDS, you look at infections or disease very differently
from those who see the situation(s) occasionally and in some cases they never
see any person living with TB, HIV infection or AIDS. With this fact I
believe that some of the best teachers, facilitators or volunteers in HIV/AIDS
matters come from these communities.We worked together for the good of the
communities, there was cooperation in Africa. In Europe it seems that it is a
different ball game with a lot of competition.
One only has to live in Africa or the developing countries to see the impact
- the human suffering, the deaths, the freshly dug graves, the massive
constantly expanding mounds of grave-yards, the poverty, the orphans, the
destitutes, the widows, widowers, the burn-out, the frustrations, ....the list is
endless. That is what drove some of us. That is why we have a key role in
addressing HIV infections and AIDS.
GREATER INVOLVEMENT OF PEOPLE LIVING WITH HIV INFECTION OR AIDS (GIPA)
I have always believed in the power of the local communities and in the
power of people living with HIV infection. They have been my consultants, they
have influenced my thinking and I have listenned to their words of wisdom. The
human resources, in millions, in Africa are the most under-utilised
resources.
Worse still people living with HIV infection, AIDS and TB are grossly
marginalised when it comes to running these programmes. They must be in the
fore-front, they know better than us.
I worked with friends living with HIV infection, AIDS and TB who helped me
develop programmes that the international community are benefitting from.
These "best practice" programmes were developed out of necessity and are:
1. Livingstone Anti-AIDS Project in Zambia, 1989
2. Athlone Hospital AIDS Awareness Programme, Botswana, 1990
3. Athlone Health Resource Centre, Botswana, 1999
4. Community Health Action Trust (CHAT), London, England "A-Z OF
TUBERCULOSIS" Poster, 2005
5. Community Resource Centre "best practice" VCT centre, London, England 2007
6. Pictures in AIDucation teaching strategy, that was developed in 1992.
Seeing is very different from being told!
BRIEFS OF SUCCESS STORIES PIONEERED BY PEOPLE WITH HIV /AIDS AND TB .WITH A
LITTLE BIT OF HELP FROM ME
NONE OF THESE "BEST PRACTICE" PROGRAMMES INVOLVED A CONSULTANT. The
programmes I worked on were all developed by villagers like me working with the
community. The success of the AIDS Control programmes was due to the role of the
people living with HIV infection and AIDS. I granted their wishes and ran the
programmes according to their instructions. It paid off.
1. In 1989 in Livingstone we set up the Livingstone Hospital Anti-AIDS
Project (LAAP) and a 'silent' voluntary HIV counselling and testing clinic. We
went one step further and called the project, "The Chest Clinic" because of the
stigma at that time associated with HIV infections or AIDS. It was actually a
voluntary counselling and testing clinic (VCT). Testing for HIV infection
and TB.
2. In 1990, I re-located to Botswana where we set up the Athlone Hospital
Anti-AIDS Project (AAAP). Does it sound familiar? In Botswana we used the
modified version of the Chikankata Salvation Army Hospital AIDS programme with the
departments or units of Information, Education and Communication (IEC);
Counselling, Clinical Care (Medical and Nursing), Home based care, Pastoral Care,
Administration and Research, and finally Integrated Training Unit. We had a
VCT running.
3. In 1999, we set up the Athlone Health Resource Centre after a national
tour, in Botswana, of the country's 12 district hospitals and three referral
hospitals. The Botswana government wanted Athlone Hospital to set up similar
programmes like ours. During the tour we (Athlone Hospital) discovered that
there were no comprehensive integrated HIV/AIDS and TB programmes. We returned
to base and set up the Athlone Health Resource Centre whose aim was to teach
the other hospitals.
4. In 2005, while now in London, I worked with some African and Caribbean
youngsters on the TB Project and developed the "A-Z OF TUBERCULOSIS" poster. A
comprehensive poster with 26 public health messages was made that won us two
awards, including an "Award for Innovation" and a request for the poster from
Centres for Disease Control (CDC) Atlanta, America, for their
_www.findtbresources.org_ (http://www.findtbresources.org) website.
This was after ridicule by some colleagues in the health arena, who thought
that "...this is not a poster...it is crowded...too many messages!"
5. Community Resource Centre "best practice" voluntary counselling and
testing centre was set up in Willesden, London in March 2007. The first of its
kind in UK. It was a 'pilot project' shrouded with controversy as the doubters
said "...it cannot work in London...This is not Africa!"
My Director trusted me and we went ahead with our "...it cannot work in
London..." VCT project.The British HIV/AIDS Association (BHIVA) was encouraging
community based VCTs, so I saw no problem. To cut a long story short, in
August 2007, we attended a meeting in central London on VCTs. All the VCTs were
testing for HIV infection only apart from ours, from CHAT, where we were also
screening for hypertension, diabetes and chalamydia. We were 'hammered' and
ridiculed over our VCT that also screens for hypertension, diabetes and
chlamydia.
We tried to explain the holistic approach with the ultimate aim of reducing
stigma to the participants but in vain. We were ridiculed! I was not worried
much knowing that it was just a matter of time before the country followed our
approach, as history had shown in Zambia and Botswana.
I did not have to wait for too long. Two weeks later in the same August
2007, our VCT was documented a "best practice" or rather "Model 2" of two models
given. There was Model 1 VCT in Primary Care and Model 2 VCT in
community-based centres. Under Model 2 there are some guidelines including "...Provide
other testing services, not just HIV (e.g. other STIs, diabetes, TB). Oh, oh!
Does that sound familiar?
THE MORAL OF THE STORY
Having been in the west for five years I now begin to understand how our
African leaders do not believe in us as they follow and believe in the western
"medicalised" models of HIV infection, AIDS and TB management.
I think that my briefs above tell their own stories of the role of people
with HIV/TB or the role of health workers affected by HIV/TB in Africa. Work
with them. I would not like to say that, "he who laughs last, laughs best!" TB
and HIV co-infection is no laughing matter. The South can learn from the
North as I have said before.
There is an African saying that says, "One who enters the forest does not
listen to the breaking of the twigs in the bush". Our roles of teaching on
HIV/TB, sharing experiences and looking after our people are high priority.
Dr Edwin Mavunika Mapara
Summary: Online discussion to emphasize the role of people with HIV/TB
Stop-TB eForum Resource Team, HDN
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Background
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To mark this year's World AIDS Day on 1 December and United Nations' Human Rights Day on 10 December, the Stop-TB eForum, HDN, hosted an online focused discussion, from 20 November to 10 December 2008, to recognize the contribution, and emphasize the role of TB and HIV affected communities.
Stop-TB members from many countries, including high-burden TB (and MDR-TB) countries participated in the online dialogue. Participants took this opportunity to speak-their-world, share their experiences and perspectives on the vital role people from the affected communities can play to improve TB and HIV responses on the ground.
In face of the global pandemic of drug-resistant TB, which threatens to rewind recent gains in confronting both TB and HIV, a global consensus must be reached on the rights and responsibilities of patients, the public and health programs. This will be an essential moral, strategic and practical step forward in mobilizing communities and health systems to 'scale-up' on quality drugs and diagnostics, and a leap ahead for assuring dignity of the affected communities.
Background documents/ resources
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People with TB, multi-drug resistant TB (MDR-TB), extensively drug-resistant TB (XDR-TB) and/or TB-HIV have clear rights and responsibilities recognized and promoted by WHO and a number of Governments in form of Patients' Charter for Tuberculosis Care. However, its promotion and implementation in a number of high burden countries has been lacking. To download the Patients' Charter for Tuberculosis Care, go to:
http://www.who.int/tb/publications/2006/istc/en/index.html
Using the Patients' Charter for Tuberculosis Care as a tool to empower affected communities with, in raising their consciousness about their rights and responsibilities, and mobilizing them for advocating for achieving the International Standards for Tuberculosis Care, is crucial. To download the International Standards for Tuberculosis Care, go to:
http://www.who.int/tb/publications/2006/istc/en/index.html
Discussion
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Dr Sugata Mukhopadhyay from India (read the comment online at: http://www.healthdev.net/site/post.php?s=4115#c-1632 ), appreciated the Stop TB Strategy (online at: http://stoptb.org/resource_center/assets/documents/The_Stop_TB_Strategy_Final.pdf ) that providing TB and HIV-TB collaborative services to the marginalized, hard-to-reach and poor population is one of the main components of the strategy.
However Sugata pointed out that while going through the list of marginalized and high-risk groups in the Stop TB Strategy, sex workers were not mentioned.
Sugata shared his experience of working with sex workers highlighting the need of TB-related care services for sex workers.
HIV- and sex-work- related stigma and laws that criminalize sex work, prevent sex workers from having good access to the HIV and TB related healthcare services. Gender inequalities further exacerbate the situation further impeding access of sex workers to existing HIV and TB care.
Grossly compromised financial status, chronic malnutrition, alcoholism and injecting drugs and poor living conditions are some of the critical factors to enhance TB transmission among sex workers. Sugata shared his experience of seeing sex workers suffering from infectious TB in many of the HIV prevention programmes (targeted interventions) he was involved with. These sex workers had to spend money to find the right treatment, when the TB microscopy centre was in close vicinity.
Sugata's team also did a pilot program of providing TB services to the female sex workers within the one of the HIV prevention programs of India.
Sugata recommended that the National Managers of AIDS and TB Control Programs of the countries should sit together to develop joint strategies and plan to provide comprehensive TB services to the marginalized, criminalized and hard-to-reach sub groups who are already being targeted by the AIDS control program.
Sugata also commented that TB is relatively a vertical programme while HIV/AIDS programme is more multi-sectoral with relatively better community involvement at every level.
Oswaldo Jave, a Multi-drug resistant TB (MDR-TB) consultant and Head of Epidemiology in Peru (read the comment online at: http://www.healthdev.net/site/post.php?s=4115#c-1634 ) listed out many factors that block access to existing good HIV and TB care services.
There is a vital role of communities to play in finding solutions to the below listed challenges in TB/HIV programmes:
- Late diagnosis of TB
- Late diagnosis of HIV/TB co-infection
- Late access to drug-susceptibility (or sensitivity) testing (DST)
- No or very limited and delayed access to preventive or curative treatment of other opportunistic infections during anti-TB treatment (pneumocystosis, acute respiratory infections)
- No or very limited and delayed access to appropriate and opportune treatment of adverse events associated to TB or TB and HIV drugs
- Stigmatising attitude of healthcare providers in emergency or trauma centres
- Delayed or poor quality medical care to indoor patients
- Poor access to quality and reliable health education from human rights perspective
- High mortality rates of TB/HIV co-infected people
- Poor infection control practices in healthcare settings which leads to high risk of nosocomial transmission of MDR-TB
- No access to public health insurance and economical public support
Oswaldo felt that invaluable resources exist in affected communities and they can play a key role in:
- achieving universal access to TB diagnostics which should include culture, DST and rapid tests
- achieving universal access to HIV testing and counseling
- increasing access to preventive and curative treatment for opportunistic infections during anti-TB treatment or ART
- increasing access to medical care and treatment for side-effects and other associated illnesses during anti-TB treatment or ART
- providing social support, health education and treatment literacy from a human rights perspective to affected communities and healthcare workers
- advocating for increasing public investment in health systems strengthening
- increasing availability of respirators which are cheaper than the cost of on TB re-treatment or treating MDR-TB
- advocating for availability of secondary preventive treatment for TB with isoniazid (after successful completion of anti-TB treatment)
- advocating for provision of public health insurance and economical support for TB/HIV affected communities (including their families)
Sudha Kalangi from India (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1638 ) shared her experience of how affected communities are playing significant role in increasing TB/HIV testing and access to appropriate treatment and care in a rural setting. She also emphasized on the high quality follow-up by health volunteers of people taking anti-TB drugs to ensure adherence and lower the defaulter rate.
Dr S Mukhopadhyay from India (read the comment here http://www.healthdev.net/site/post.php?s=4115#c-1639 ) stressed on engaging corporate sectors in TB programmes.
He shared his experience of convincing private sector which was supporting HIV programmes among truckers and mobile populations in India through its corporate social responsibility (CSR) scheme, to also provide TB services as part of the government of India's revised national TB control programme (RNTCP).
The Stop TB Strategy (http://stoptb.org/resource_center/assets/documents/The_Stop_TB_Strategy_Final.pdf ) has strongly recommended attending to mobile populations for TB prevention, treatment and care needs (along with attending to TB prevention, treatment and care needs of other high risk and difficult-to-reach groups). Mobile populations are often at risk of HIV and TB both due to their compromised living conditions and other factors associated with migration. The CSR programmes of private sector can help support this initiative to include TB care for mobile populations in HIV targeted interventions.
Kennedy Mupeli from Botswana (read the comment here http://www.healthdev.net/site/post.php?s=4115#c-1640 ) pointed out that the community-based human resource has been vastly under-utilized in the fight against TB and HIV. Kennedy commented that just like the affected communities have become conversant with the science of HIV, same needs to happen in TB to de-bunk the perception that TB can only be managed by healthcare professionals and not by communities.
Kennedy advocated for scaling up high-quality health and treatment literacy initiatives in the communities and meaningfully utilizing the community-based human resources to improve TB/HIV responses.
Paula Perdigao, a TB consultant in Mozambique (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1644 ) pointed out the pressing need of reliable information and education campaigns for affected communities on TB-HIV co-infection.
Paula also stressed on the training needs for all healthcare workers including those at community level on TB-HIV co-infection with special focus on smear negative pulmonary TB and extra-pulmonary TB, using the World Health Organization (WHO) guidelines. Emphasizing on the three Is (infection control, intensified case finding and isoniazid preventive therapy) and encouraging affected communities to be proactive in implementing the three Is is vital.
Developing new rapid TB tests like the existing ones for HIV and malaria is a high global priority and affected communities have a crucial role to play in upping the advocacy to accelerate research, development and eventual access to these new diagnostic tools.
Ajumobi Adedayo, a photo-journalist in Nigeria (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1645) said that the community experiences of accessing TB care in Nigeria are very different than what Nigerian government shows on paper - the challenges faced by the affected communities in accessing existing TB care in Nigeria needs to be documented and informed to policy makers so that the TB programmes can be improved. The role of people living with TB is enormous and central to effective TB responses - their knowledge and perspectives need to be documented and taken cognizance of so that appropriate improvements can be meted out, said Ajumobi.
Dr Theresa Watts, who has worked in many countries in Africa for a long time, (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1646 ) said that it is very difficult to educate TB patients about the disease, TB care, treatment and other related-issues since their time spent with healthcare providers in hospitals is very limited. In 1990s in South Africa, the international policy was not to keep TB patients indoors which made it very difficult to educate them about their disease and the importance of regular treatment for the full duration. TB patients were often so shaken by the diagnosis (which they often equated with HIV or a terminal illness) that they could take in very little information. Also they then travelled home on crowded public transport.
However some hospitals kept their patients in designated wards for at least 2 weeks, during which time they could learn about their TB illness which was curable, first "sending the germs to sleep,- but stopping treatment early made the 'germs' wake up stronger than ever and could be incurable."
This also gave healthcare providers in hospitals an opportunity to learn from the patients themselves of the social realities they live in, and difficulties they face in accessing healthcare services. This knowledge is vital to improve access to existing services.
Rowan Wagner from Uzbekistan (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1659 ) highlighted the Patients' Charter for Tuberculosis Care and the role it should play in addressing the TB/HIV related challenges and how the charter sets a positive tone with both rights and responsibilities of affected communities.
Rowan quoted Einstein to explain the need to think in a different manner to improve responses to HIV and TB: "We cannot solve our problems with the same thinking we used when we created them."
Rowan believes that getting the real sense of what is working and what is not on the frontlines of AIDS and TB care is a daunting complex challenge, and there is a need to document these perspectives so as to respond effectively to as close to addressing the real needs as possible.
Only by looking at TB and HIV more as symptoms of underlying social problems rather than problems in their own right, will be possible to address these human conditions and bring people back into the centre of the communities where they rightly belong.
Dr Carmelia Basri from Indonesia (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1662 ) commented on a news published in a leading Indian newspaper (read the news here http://www.healthdev.org/viewmsg.aspx?msgid=aeb62f3a-2914-4bd1-b07d-c6ce4913fac2 ). This news documented frontline perspectives of one of the most underserved communities and the challenge they were facing in accessing TB care.
Dr Carmelia stressed on the need to document TB programmes at every level. Dr Carmelia believes that the role of community involvement in TB care and engagement of the TB patient and community must be few of the most important parts of the TB response. This is also emphasized in the Stop TB Strategy (online here http://stoptb.org/resource_center/assets/documents/The_Stop_TB_Strategy_Final.pdf ).
Kondwelani Jose from Zambia (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1663 ) underlined the role of civil society in health responses at every level. In Zambia, the civil society had demonstrated its strength by effective advocacy against policies that threatened to make civil society's participation in health policies tokenistic. The role of affected communities is vital to improve health responses and increase accountability.
Lambert Wesler from Haiti (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1667 ) shared the experiences of Partners-in-Health (PiH) in Haiti of engaging communities in effectively improving TB responses. PiH had put strong emphasis on the role the people living with TB and HIV from their beginning. The contribution of people living with TB and HIV is critical to the success of the programme.
The members of the affected communities drive the programmes in Haiti. They have played a significant role in providing treatment to people who need it most, counselling them adequately, following up with them to encourage them to adhere to the treatment regimen, attend to any healthcare need they might need during the treatment and get it adequate medical attention, and providing psychosocial support.
Community health workers have served to bridge gaps in access to care that arise from lack of communication for patient follow-up and long distances patients are expected to travel for health problems.
Community health workers are lay people who were selected by the community to be trained and employed as health agents. Such cadres had been involved in directly observed administration of tuberculosis medicines since the mid 1980s in Haiti. In 1999, modelled after the successful outpatient treatment of tuberculosis, access to highly active anti-retroviral therapy (HAART) was expanded through a community based programme called the HIV Equity Initiative.
A cadre of community health workers were trained to administer HAART to patients in their homes as directly observed treatment shortcourse (DOTS).
These community healthcare workers were also trained to provide prevention education to communities, to minimize stigma and to refer to the clinic as appropriately needed. These community healthcare workers thus became a critical interface between the affected communities and the medical clinics.
By tapping this important cadre of community healthcare workers to strengthen the wider health system at primary care level, the programme aimed to create a virtuous cycle between strengthening the wider primary healthcare services that support poor households and antiretroviral treatment outreach, thereby widening the health impact on communities. Initial evidence indicated improved service uptake in this region.
Chibuike Amaechi from Nigeria (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1670 ) said that there is a compelling need to provide quality psychosocial support and drug adherence counseling to encourage people who are undergoing TB treatment to create an enabling environment so that they feel comfortable to share their perspectives, confide the challenges they had faced at different levels while accessing care and contribute to improving the TB programme later. Also those people who successfully completed TB treatment are often reluctant to go back to the TB clinic - their experiences are too precious to be lost as they contain the successes and failures both of existing TB services. These people can potentially become treatment literacy champions, believes Chibuike.
Another key role for people living with TB-HIV co-infection is in the implementation of TB/HIV collaborative activities.
Arif Clinton from India (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1672 ) said that there is a need to engage the people directly affected by HIV and TB at every level of the response. Arif shared his experiences to engage migrant workers and other workers from the unorganized sector in TB/HIV responses.
Dr Tobias Kichari from Kenya (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1673 ) shared his experiences on World AIDS Day (1 December 2008) in Kenya where tuberculosis wasn't on the agenda. Dr Kichari felt how significant it is for different stakeholders including the civil society to take onus of advocating about TB and HIV both on every opportunity, including the World AIDS Day.
Dr Edwin Mavunika Mapara who has extensive experience in working on TB and HIV in Zambia and Botswana in Africa and London in UK (read the comment online here http://www.healthdev.net/site/post.php?s=4115#c-1676 ) provided a valuable insight comparing the TB/HIV responses in London with those in Africa. He commented on the apathy in healthcare providers who may have become numb with TB/HIV compared to those who face the lethal impact of these epidemics personally. Therefore Dr Mapara believes that 'some of the best teachers' on HIV-related issues come from the communities.
He said that Africa has made massive advances in engaging affected communities in HIV responses but the same hasn’t happened to that extent in UK.
"I have always believed in the power of the local communities and in the power of people living with HIV. They have been my consultants, they have influenced my thinking and I have listened to their words of wisdom. The human resources, in millions, in Africa are the most under-utilised resources" said Dr Mapara.
People co-infected with TB and HIV have nil or token participation in driving these programmes aimed to address TB and HIV co-infection. These people co-infected with TB and HIV "know better than us" said Dr Mapara.
Dr Mapara shared some best practice programmes that include:
- Livingstone Anti-AIDS Project in Zambia, 1989
- Athlone Hospital AIDS Awareness Programme, Botswana, 1990
- Athlone Health Resource Centre, Botswana, 1999
- Community Health Action Trust (CHAT), London, England "A-Z OF TUBERCULOSIS" Poster, 2005
- Community Resource Centre "best practice" VCT centre, London, England 2007
- Pictures in AIDucation teaching strategy, that was developed in 1992
None of the above best practices were developed by professional consultants, but rather the wisdom of affected communities founded, developed and managed this programmes - this underlines the vast under-utilized human and intellectual resources that rests with the affected communities.
Major recommendations
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- Populations at risk of TB/ HIV should be actively involved in TB/ HIV programmes at every level. This should include sex workers, migrant workers and other workers in unorganized sector
- TB/HIV affected communities have a crucial role to play in the responses to these epidemics. TB is not just a medical problem. The affected communities can help achieve universal access to TB diagnostics which should include culture, DST and rapid tests, encourage people to go for HIV test, provide quality counselling, increase access to preventive and curative treatment for opportunistic infections during anti-TB treatment or ART, provide social support, health education and treatment literacy from a human rights perspective to not only people living with HIV/TB but also to healthcare workers, help in advocating for increasing public investment in health systems strengthening and other needs perceived by the communities themselves.
- TB/HIV affected communities can optimally achieve intensified new TB case finding, advocate for airborne infection control measures in healthcare settings, and raise awareness and lobby for provision of isoniazid preventive therapy (IPT)
- TB/HIV affected communities have a proven role in increasing follow-up of those people on anti-TB treatment who default and thereby increasing treatment literacy and adherence
- Human and intellectual resources that rest with the affected communities are vastly under-utilized. Unless communities are in the centre of the TB/HIV responses, the intended outcome of universal access to prevention, treatment, care and support will not be achieved.
- Just like increasing involvement of affected communities has increased understanding of the science of HIV, the same needs to happen in TB to de-bunk the notion that 'TB is a medical problem'. Affected communities should help lead the treatment literacy campaign.
- Increasing involvement of affected communities in TB/HIV responses increases accountability
- The invaluable knowledge that rests with the community should be well documented, particularly to get a real sense of what is working and what is not, programmatically.
- There should be more quality interfaces between healthcare providers and TB/HIV affected communities so that healthcare providers can learn from the perspectives of the communities and communities can get an opportunity for treatment literacy and quality counseling.
- The Patients' Charter for Tuberculosis Care has a vital role to play in bringing people in the centre of the TB/HIV responses, bringing forth both the rights and responsibilities of affected communities. This is a great tool and resource that exists as part of the Stop TB Strategy and should be promoted so that affected communities can use it to achieve the International Standards for Tuberculosis Care.
- Community health workers have served to bridge gaps in access to care that arise from lack of communication for patient follow-up and long distances patients are expected to travel for health problems.
- By genuine engagement of affected communities in TB/HIV responses, evidence suggests that it strengthened the wider health system at primary care level
- Communities have strengths - and capacities to respond - and therefore need to be central to HIV and TB responses at every level
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