Stop TB•news
The newsletter of the Global Partnership Movement to Stop TB
 
Issue 3, March 2001, special edition for World TB Day
produced by the IUATLD on behalf of the Stop TB Partnership Secretariat
 
DOTS: TB cure for all
 

Editorial by His Grace Archbishop Desmond Tutu

Why?

Millions
Think for a moment. Millions of children and young adults dying of tuberculosis (TB). Millions more suffering, recovering, sometimes relapsing into TB or multidrug-resistant TB (MDR-TB). And so many HIV-positive people falling sick and dying of TB.
Such is the case today –from Johannesburg to the poor districts of Beijing or Moscow.
Such is the case in the developing world.
But how can people be "developing" when TB maintains them in utter poverty? When laborers, farmers, teachers are struck down by TB, and by AIDS which starts with TB, undermining their fragile economies?
 
DOTS cures TB
Let me remind you:
There is a simple CURE FOR TB. We all know that Directly Observed Treatment, Short-course (DOTS)works, that if we were to apply it on a global scale, efficiently, we could envision the eradication of TB. What does it mean NOT to do it? It means that MDR-TB will spring up everywhere, and that is what we face today.
 
DOTS delays AIDS
In developing countries, AIDS first manifests itself through TB. Curing TB is therefore also the single most efficient intervention that would lengthen the life of HIV affected people, significantly delay the onset of AIDS, and even slow down the spread of the epidemic. It would help us keep our HIV-positive teachers, nurses, infants, parents, our loved ones... a few more years. Perhaps then there might also be a cure–a vaccine–for AIDS?
But we have known for some years now that we could treat and cure TB. We spoke about the necessity of DOTS last year for World TB Day. So why aren’t we doing it? What’s holding us back?
Do we care about TB for only one day a year?
Pricing? DOTS is the cheapest health intervention imaginable.
Poverty? TB is the child of poverty but also its parent and provider.
I had TB as a child. President Mandela had TB as a prisoner.
We recovered. There is life after tuberculosis.

Development is a process of change. But to achieve development people need to be healthy. Poverty breeds tuberculosis, tuberculosis breeds poverty. As Dr Gro Harlem Brundtland, the Director-General of WHO, has said that TB and MDR-TB are global problems demanding not just efficient health services but all the developmental plus which can allow for people to uplift themselves.

So everybody agrees, even the G8: DOTS is cheap, efficient,and it works. DOTS should be implemented along with poverty alleviation. DOTS would allow us to eradicate TB and make this planet a better place to live.

Curing TB would give true meaning to the call for the rights of women. We should not forget that women tend to the sick, the young,the fragile. Women are care givers in health centres and care givers in the community or at home. If we don’t guarantee the rights of women to access efficient means to cure TB, we are adding an insurmountable burden to the backs of poor women.

So why aren't we doing it?
2000 years ago Christ on the Cross asked: "Why has thou forsaken me?" What could we tell that child sick with TB asking us that question "WHY?" "Why has thou abandoned me?"
 
Why?
WE DON ’T RESPECT THE FUNDAMENTAL RIGHTS OF HUMAN BEINGS!
Access to TB treatment and cure for all is a fundamental human right.
Tuberculosis patients have the RIGHT to be rid of their debilitating disease, regardless of their status, gender, or financial resources. People have the right to live without fear of contracting the disease.
 
HOW CAN WE GUARANTEE THE RIGHT TO THE CURE FOR TB?
User fees must never be imposed that would represent a barrier to treatment. This has even been voted this past fall by the US Congress as applicable to all international lending institutions. The human right to treatment and cure must of necessity include provision of sufficient resources for health care structures,drug supplies, distribution mechanisms, community care and education–and must be included in international and national economic policy planning as well as in North–South lending and foreign assistance arrangements.
I call upon all citizens, all patients and health care givers to be the watchdogs for the respect of that fundamental human right at all levels of policy-making.
If we can achieve that human right, then, and only then, will we be able to lift that child, OUR CHILD.

 

Patient stories

Godfrey from South Africa
Godfrey is 56 years old and has had MDR-TB for two and a half years. He contracted pulmonary TB many years ago. Godfrey was a persistent defaulter with his treatment. He became very ill and was admitted to hospital, where he stayed for six months. After being discharged, he came regularly to the clinic to take his medication and continues to do so to this day. Godfrey is still sputum-positive. He does not want to have an HIV test. Godfrey still works. He has a job at the government laundry, which is responsible for the laundry of all the hospitals around Pretoria.
 
Ursula from Poland
Ursula is 26 years old,Polish,and qualified as a doctor. She moved to the UK permanently in September 1999 to be with her husband. A month or two before returning to the UK, Ursula started feeling ill. She prescribed herself antibiotics and began to get better. Shortly after completing the antibiotics, the infection returned in a worse form. She went to the doctor and had a chest X-ray –it looked like pneumonia. Ursula was prescribed antibiotics and steroids, but just kept on feeling worse until she was so ill that she felt "disabled". She went to Guy's hospital in London for an examination and told the doctors that she suspected tuberculosis. Her sputum test was positive and she began treatment for TB.
Ursula started to feel better after two days and after a couple of weeks feels almost back to normal. She will take her medication for six to nine months. Ursula never thought she would get TB. She cried at the news.
Ursula suspected she had TB because three years ago she had been in contact with an infected person.She came to the UK in 1997 for the summer to be with her then boyfriend (now husband). During this time Ursula worked illegally (she was not allowed to work in the UK without a work permit, which she could not get) for several months as a waitress at a London hotel. She believes that most people who work there do so illegally for very poor wages.
It was at this time that she was working with a Phillipino woman who became ill and was diagnosed as having TB. This woman continued to work at the hotel because she needed the money to support her family. The owner also knew that the Phillipino woman had TB, but wanted her to continue to work. Ursula believes that she contracted her TB from this Phillipino woman.
 
Chandra from India
Chandra had been diagnosed with TB that had spread to her throat, and she was in great discomfort.
Chandra lives on a remote island in the Sunderbans in the delta of the Ganges in West Bengal. Medical aid is brought to Amtali Island via a weekly visit from the boat dispensary. The patient and her family had come to see the doctor and his team.
To arrive at the makeshift clinic, patients have to walk 6-7 km because there is no transport. Chandra was helped by members of her family and friends. At that time of the year the temperature in West Bengal is around 37-40 °C with high humidity.After her consultation, Chandra collected her medication, and then still had to walk the 6-7 km home in the searing heat.
 
Steven from the UK
Steven came down to London from Ayrshire looking for employment. He started work as a labourer on the building sites. He lived in various squats or with friends. Steven has been in isolation for nine weeks, suffering from a reactivation of his old TB. When he was infected for the first time, he was isolated for 10 weeks at the beginning of his treatment period, after which he became non-infectious. Steven was then discharged and continued taking his treatment under supervision outside the hospital. After five more weeks, he felt "cured " and stopped taking his medication. Because Steven had not taken the full course of medication, the doctors told him there was a great risk of his TB returning and the possibility of his spreading TB to others. The hospital therefore notified the places where Steven had slept and eaten,for example the local hamburger restaurant, to stop him entering. Steven was obliged to sleep rough on the streets and search for food in unfamiliar places.
Steven began to feel ill again and knew his TB was back. However, he didn’t do anything because he didn’t want to go back to the isolation room in the hospital. Five weeks later, when he was so ill that he could no longer walk, he called for an ambulance to take him to hospital.
Steven now has the use of only one lung. The other lung has collapsed due to it being full of TB and he has a large chest drain attached to it. The doctors have decided to remove this lung.
 
Philip from London
Philip is 31 years old. He was diagnosed HIV-positive when he was 20 years old. He has AIDS and MDR-TB. Philip has no idea where he might have caught his TB from. Philip is in a negative pressure isolation room away from all other patients. Anyone visiting must wear a mask. Because Philip has AIDS, he is no stranger to the hospital or the isolation room.He was admitted two weeks ago after becoming so ill one weekend that he couldn ’t walk. His partner had to call for an ambulance. He was later diagnosed as having MDR-TB and started therapy immediately. When he was admitted he was very thin and not eating well. Philip is fed at night via a gastrostomy tube. Although he eats the hospital food and what his friends bring him, he has little appetite at the moment.
Philip is a hairdresser but was sacked about a month ago for missing work because of a hospital visit.

 

TB & HIV: intimate allies

"Tuberculosis is… the first manifestation of AIDS and, in turn, AIDS is accelerated by tuberculosis."
A South African physician reported at the Durban International Conference on HIV/AIDS, July 2000

TB and HIV commonly appear together in developing countries. No matter how much we try to separate them, these diseases are closely linked as a dangerously inseparable couple. Worse still, they have a third partner and progeny: MDR-TB. HIV fuels the TB epidemic and increases the spread of tuberculosis into the general population, thereby greatly increasing the risk of further transmission to other persons—both with and without HIV infection.
The elimination of TB throughout the developing world is the single most efficient policy to drastically improve the health status of all people; to lengthen the life expectancy and quality of life of people living with AIDS (PWA); and to reduce stigmatization and fear of HIV.
 
What do we know as facts?
The majority of people infected with HIV in developing countries develop TB as the first manifestation of AIDS.
The presence of HIV in the human body already infected with TB germs serves to transform latent TB infection into active tuberculosis.
Tuberculosis is clearly the major accelerator of HIV disease, the prime "criminal" responsible for the fact that even before the advent of anti-retroviral treatment, people with HIV/AIDS survived twice as long in rich countries compared with poor countries.
Tuberculosis is by far the most important infectious disease that is exacerbated by the HIV epidemic and that is then transmitted to people without HIV.
Efficient and speedy treatment and cure of TB would slow down the spread and intensity of the HIV epidemic, and should be a key component of efficient HIV counselling and prevention programmes.
The cure of all TB patients with DOTS will delay the onset of AIDS in people infected with HIV. DOTS therefore offers a significant contribution to slowing down the HIV epidemic.
It is overwhelmingly in the interests of the HIV community and of health care personnel everywhere to provide speedy diagnosis and cure of all TB cases with DOTS; it is also the only way to prevent the development of and to thwart the spread of MDR-TB.
 
Human rights
To begin with, PWA and activist groups feared public discussion of TB in association with HIV because of concern that human rights might be curtailed through quarantine and
other restrictive measures. Those days are fortunately gone. WHO's document on TB and human rights* indicates quite clearly that the gains in human rights obtained by HIV advocates are now claimed for all TB patients.
As His Grace Archbishop Desmond Tutu has said: "Quality care and cure for all TB patients is a basic human right." TB advocacy ought to help us break down the barriers between HIV and TB.
(*) Guidelines for Social Mobilization: A human rights approach to tuberculosis. Geneva, World Health Organization, 2001
 
Synergy
There is a deadly synergy between the virus that causes HIV/AIDS and the bacteria that causes tuberculosis:
1. The presence of HIV in a person infected with TB germs tends to transform latent TB infection into active disease.
2. Active TB in a person with HIV increases virus production, viremia, and worsens immuno-deficiency, thus increasing the transmission of HIV through blood or sexual contact, and accelerating progress AIDS.

 

Success stories

TB control in Kosovo
Excerpts from Doctors of the World (DOW) reports, Marta Schaaf, Programme Associate, Programmes in Eastern Europe and the New independent States.

TB represents one of the biggest public health problems in Kosovo today.
The dissolution of the former Yugoslavia negatively impacted on health care services, particularly in Kosovo, leaving the province with a TB rate three times that of the rest of Yugoslavia and the highest in Europe. Without treatment, half of all TB patients were expected to die within five years. Moreover, patients frequently did not complete their course of medication and subsequently developed drug-resistant tuberculosis. Most of the TB care infrastructures had collapsed and were destroyed during the war.
Following the creation of the UN Mission in Kosovo, all TB control activities were integrated into a WHO coordinated health care system to be administered by a new Kosovo Ministry of Health. The Tuberculosis Control Project was started in July 1999 and is scheduled to last until August 2004. The NGO Doctors of the World (DOW) has identified all Kosovars as being part of the target group, estimating that the entire population could be at risk.

The TB Control Project

WHO intended to use the postcare system to be more decentralized and primary care based.The TB care system had to be reorganized as well. WHO put in place a process whereby anti-TB dispensaries would gradually be closed down and their functions absorbed into the primary care system.-war phase as a prime opportunity to restructure the health
WHO established a TB Control Commission consisting of representatives from the senior Kosovar TB clinical community, the Institute for Public Health, WHO, and DOW.

TB stories from Nepal - The story of Mr BN
By Bernhard Hoehne

Radio and TV commercials can promote TB awareness and cure!
Mr BN is a 24-year old married waiter in a hotel restaurant. He worked there the entire time of his treatment for TB. There are no cases of TB among his family or friends. Mr BN paid almost 2500 rupees (approximately US$ 54) for diagnosis and treatment at a private clinic. At the National TB Centre he only had to pay 22 rupees (approximately US$ 50 cents) for the diagnosis.
The signs of TB began two months ago, but Mr BN did not know about TB or its symptoms. First he started coughing; then he began to suffer from chest pain and fever. Mr BN thought that his symptoms were the signs of a common cold or flu. So he first consulted a private medical store where he was prescribed cough syrup and some antibiotics. After one and a half month, however, he realized that the medicines were not working. At this time, Mr BN’s awareness of TB was raised through health education announcements via radio and TV commercials–so he began to assume that he might have TB. He went directly to the NTC for X-ray and a sputum test. As Mr BN suspected, the diagnosis for TB was positive. The NTC referred him to the nearest DOTS centre in his neighborhood, the Nepal Anti-TB Association/Genetup TB hospital. Mr BN ’s knowledge about TB was based solely on the health education commercials, but Mr BN always kept the main point about TB in mind: "TB is curable and you just need the right treatment ". With this basic knowledge, he was neither worried nor afraid about TB. Today, 20 days after treatment began, Mr BN is already feeling better. He feels very comfortable because he has only a 15 minute walk to the DOTS centre and needs not wait to get his medicine. Furthermore, he points out that the DOTS staff are doing a great job!
TB was raised by health education via radio &TV commercials
Message to other TB patients in the world: "Do not worry. You will be cured if you take your medication regularly!"

Sudanese prisoners begin to get TB treatment
Pr. Asma El Sony, National Tuberculosis Programme Manager, Sudan

How even in a very poor country, something can be done for prisoners with TB. We noticed that a number of our hospitalized TB patients in Garadif State, East Sudan,were from prisons, and this motivated us into action.
The vast majority of prisoners are marginalized people, very deprived, and they have limited access to health services for all types of diseases including TB.
Moreover the prisons are ripe for TB transmission; disease can spread quickly and easily through the crowded living situations and poor hygiene.
Since the country is poor, obviously the type of very limited health care available for prisoners reflects a more general state of things–a continuous shortage of drugs, for example.
Each prison has a health centre in Sudan.We trained the staff at the health centre, obtained a microscope, reagents and drugs, and trained two nurses as DOTS supervisors. Now we receive quarterly reports from three out of the 14 prisons, and work is expanding to other prisons. In my opinion, the key elements for DOTS in prison health centres are to ensure that:
1) Policy-makers are convinced that the programme will work.
2) The programme will protect the health of prisoners as well as others.
3) The DOTS strategy can be easily integrated into prison health services.
4) The programme will not be a burden on the existing health services, financial or otherwise.
5) Access to health and DOTS is a HUMAN RIGHTS ISSUE.

Now we receive quarterly reports from three out of the 14 prisons, and work is expanding to other prisons.

The Zambian experience
Mr Winstone Zulu, Zambia. Excerpts from a speech given at the ATS/ALA meeting, Toronto, 2000.

Health sector reform: how has this affected access to TB treatment?
Zambia’s health sector reforms were driven by the Primary Health Care strategy. Its principles were described as follows: "Individual,family and community self-reliance, fairness to all. Care for the poor. Cooperation between government ministries and with NGOs. Decentralization and community empowerment." That meant "provision of better quality health care for the individual, the family and the community with an emphasis on Primary Health Care so as to …reduce common illnesses among the population: especially malaria, diarrhoea, TB, STIs and AIDS."
 
Sounds wonderful? What are the results of health sector reforms?
As detailed above, our health reforms are impressive. In fact, they are considered a model in the southern African region. That is the theory of things. The practical aspect to this marvellous story, however, is completely different. Since the beginning of the reforms, health services have never been more problematic. In many instances one could safely say there are no health services in Zambia. Shortages range from medicines including TB drugs and painkillers to gloves and X-ray films.
While the districts will tell you that TB drugs are available,your health centre will not have them. Or if they do have them, they probably have only one drug out of the combination that you need. There have been cases in which TB drugs were replaced by panadol!
Simon Mulenga, the man that I am speaking on behalf of, lived his life fighting for access to TB drugs. He died of TB in July 1999. He fought many a battle with the Ministry of Health, who at the time told him TB was not special. He carried banners that demanded access to treatment,but the health reforms failed him.
I had planned to present a balanced paper in which I could show the successes as well as the failures of our health reforms. I searched in vain for anything positive to write about the effect that health reforms have had on access to TB drugs. As you can see from the above, the concept is excellent. But when you go down with TB you cannot find the drugs easily. I barely survived when I suffered from TB myself, and everyone I have talked to has had bad experiences trying to access the drugs.
When the world is being threatened by drug-resistant bugs bred by one country’s negligence, then it is time for outsiders to intervene.

TB cure for all

Tuberculosis patients, their families and communities join with NGOs to demand tuberculosis treatment that is:

To Governments, to the United Nations and to development agencies the world over, we say here with a concerted voice: "You have the power to stop the tuberculosis epidemic… You must act now!"

World TB Day, 24 March 2001
Tuberculosis patients are being denied a basic human right: to be treated for their illness.
You can sign this declaration online: www.iuatld.org