Why do we need a special law for TB patients?

raa&asptmr

Two years ago, in the spring of 2014, along with colleagues from the Association for the Support of Multidrug Resistant Tuberculosis Patients, we began to think and work on the first ever bill for patients with tuberculosis.

 Why?

Because we, at the Romanian Angel Appeal Foundation, have been striving, for the past 10 years, to help reduce the impact of tuberculosis in Romania, together with non-governmental organizations and public institutions.

Because the fight against tuberculosis begins with prevention and education in the community and continues with rapid diagnosis, complete and correct treatment and social, psychological and material support. And curing is a process that depends on correct and complete treatment and on the patient’s willingness to follow it fully.

Because, after talking with pulmonologists, NTP specialists, with patients and their families, it has become increasingly clear that, in a thicket of laws more or less good, more or less clear, the tuberculosis patient needs a law of their own.

Because in recent years, the best chances at curing tuberculosis resistant to treatment were given to patients who received drugs bought in projects with external funding – the Global Fund to Fight AIDS, Tuberculosis and Malaria and the Norwegian Financial Mechanism. Although, according to the Patient Law, “the patient is entitled to continuous healthcare until their health has improved or they have been cured.” The Bill proposes that TB treatment to be given “free of charge for all people diagnosed, appropriate to the type of disease,” “continuously until cured.” Also, “during treatment, the patients diagnosed with tuberculosis will receive medication free of charge for the side effects.” The Romanian state will thus be bound to provide treatment for all the patients and all types of tuberculosis, either sensitive or resistant to one or more drugs.

Because the diagnosis of tuberculosis is never easy, it comes as a shock that shakes both the patient and their family. Beyond the financial impact – tuberculosis can reduce by 40% the income of a family – is the social and professional impact. It is the question “why me?”, is the fear of not being accepted in the community, group of friends, family or at work. The Bill proposes “assistance and psychosocial counseling, during treatment, until cure“. Thus, besides specialized medical care, the patient will receive psychological counseling to cope with the disease and social counseling to benefit from all the social benefits provided by the current laws.

Because, due to the lack of reliable and complete information and the inertia to discriminate everything that is not well understood, many patients with tuberculosis lose their jobs. But also because of lengthy and repeated hospitalizations (especially for resistant TB) and because they no longer have the ability to perform physically demanding work. The luckiest of them, those who had an employment contract, may have a chance to get sick leave. For those who have been working illegally this option no longer exists just as there are not too many opportunities to earn a living anymore. The Bill proposes “sick leave and compensation for temporary work impairment without restrictions related to contribution period, throughout treatment until cure”. For all the patients.

Because, although tuberculosis is not a poverty disease anymore, the most vulnerable people are still those with low socioeconomic status. The disease incurs additional costs in the life of the patient and their family: additional intake of food both during hospitalization (let’s admit it, the funds the hospitals have for patients’ food are never enough) and in ambulatory, transportation to the clinic for the medication, drugs for side effects. The Bill proposes “monthly food allowance, throughout the treatment in ambulatory“. For all the patients with tuberculosis who follow doctor’s recommendations and take the treatment correctly and completely. “The monthly food allowance is given to the outpatient, if they are compliant with the prescribed treatment, without interruptions, for the month in question.” In other words, only the patients adherent to treatment will receive the food allowance.

Because if we want the TB to no longer represent the most serious threat to public health and Romania to no longer export tuberculosis in the European Union and the world, we must know our enemy. The population needs to be informed and educated about what TB is, how it is transmitted, how to prevent the disease, the symptoms that should raise concerns, how it can be treated. The Bill proposes “continuous information and education for the general population” and “education and counseling of TB patients on hygiene measures in order to prevent the spread of the infection.”

 

Who?

The Ministry of Health, the Ministry of Labor, Family, and Social Protection, the Ministry of Finance, the Ministry of Education, the Ministry of Justice, the Ministry of Defense and the Ministry of Interior are those who will be involved in developing the methodological norms and in law enforcement.

 

For whom?

When this law is approved, the winners will be the general population (by lowering the disease risk), the patients and their families (by increasing the chances to cure and community reintegration and employment), the professionals in the field (through increased access to tools for diagnosis and treatment) and the overall health system (by decreasing the total cost of treatment by approximately 12.33% in the second year after the entry into force of the law and by 18,47% in each of the next three years).

 

Two years ago, in the spring of 2014, along with colleagues from the Association for the Support of Multidrug Resistant Tuberculosis Patients, we began to think and work on the first ever bill for patients with tuberculosis. In the last days of March 2016, the Bill was registered in the Parliament, having been signed by more than 100 deputies and senators. It is public for debate until the 30th of May. You can find the Bill (B164 / 2016) and the section where you can send your views here: https://www.senat.ro/LegiProiect.aspx.