Patient organisation interview: ARB-TB
In this interview, Gabriela Spita of the Romanian TB Patients Association (ARB-TB) gives us an overview of their work, the main challenges the organisation faces, and their plans for Healthy Lungs for Life in 2016.
Can you tell us about ARB-TB and your area of work?
The Romanian TB Patients Association (ARB-TB) is a non-profit, non-governmental, non-political and humanitarian organisation, which aims to improve the lives of people with tuberculosis (TB), and support both patients and healthcare professionals.
Members of the association include TB patients, family members, volunteers, and healthcare professionals with an interest in TB.
How did you come to set up ARB-TB?
Working in the medical field and being well-informed about diseases, and especially lung diseases, we noticed that Romania did not have an association which helped TB patients, so we created ARB-TB in 2007.
TB is a very serious problem in Romania, and we want to help a significant proportion of people with the condition.
What are the challenges with regard to TB in your country and worldwide?
Working on TB, researching the condition, and talking with doctors and ex-patients, we discovered that the situation is much more severe than how it is presented to the general public.
In Romania, TB is still a serious problem because of the way that it spreads and the lack of awareness about its main symptoms. Over half of the people in Romania do not know basic facts about TB and believe that it is incurable. The main challenge is creating large information campaigns that explain what TB is and how is it treated.
We have also noticed that we have a problem with diagnosis and here are two main things that we must improve fast:
- Diagnosis is very slow, because we still use old testing methods that can take days, or even weeks, to process. Many cases are diagnosed late, and therefore require longer, more expensive treatments.
- Many people have TB symptoms yet it is difficult to get them to take a TB test. This is particularly a problem for homeless people. Our main challenge is to motivate these people and give them clear reasons as to why they should get tested. We need a law that obliges people to undergo periodic testing to prevent the spread of TB.
Last but not least, there is still stigma associated with TB. People with TB are usually kept for approximately a month in quarantine (though this varies in each person), and many can still experience problems after they are cured and declared non-transmissible. Many people who no longer have TB find that others avoid them, as they do not know about TB and believe that the person is still contagious. This problem can be resolved by increasing knowledge among the population.
What are your main priorities?
Our main priorities are as follows:
- integration and involvement of people with TB;
- fighting for the rights of people with TB: care, dignity, privacy, choice, information, justice, organisation;
- helping TB patients to assume the responsibility to share information, to follow the treatment, to contribute to the health of the community, to show solidarity in the face of this disease
To achieve this, we:
- set up relationships with organisations and individuals from Romania and abroad, creating cooperation and partnership relations with them;
- represent TB patients to national and international institutions;
- organise informative and educational activities (seminars, courses, etc.) for the benefit of TB patients, to promote a better understanding of TB among patients, their families, healthcare professionals and of society as a whole;
- initiate work towards improving legislation concerning social protection and medical care of patients with TB;
- support interdisciplinary collaboration between doctors, psychiatrists, psychologists, sociologists, social workers, etc., with the aim of promoting a wide range of services to support patients and their families, to improve the quality of life;
- other activities for the promotion of ARB-TB’s work in Romania and abroad.
What are your best achievements so far?
Since the association was created we have tried – and we think we have succeeded – to reduce TB infection and to involve more people in the fight against the condition.
Beside the activities we have organised, which include conferences, testing sessions and presentations, we have had some important achievements that have had a real impact on TB patients. Since 2007 the number of new detected cases has increased, as has the number of people that are cured. We have also helped to educate the general public about TB, which helps with prevention.
What activities are you planning for Healthy Lungs for Life in 2016?
We are planning a press conference, roundtables on TB, outdoor TB testing, bicycle contests and running sessions. Given the huge and serious TB problem in Romania, we are planning to raise awareness on 24 March, 2016 and try to declare it National Day of TB Awareness.
Is there anything else you would like to add?
In the near future we hope to better cooperate with the other TB associations in Romania and other organisations working on the same problem. We are also keen to get more support from the World Health Organization, because TB is not only a big problem and a real threat in Romania, but also worldwide.