Roma Communities often have lower immunisation rates than the general population. Health mediators are helping to turn the tide.
Bulgaria’s 2010 measles epidemic affected 24,000 people and killed 24 children. It caused misery and grief, and dealt a body blow to Europe’s efforts to eliminate the disease.
An estimated 90% of measles cases recorded during the outbreak were among the Roma community where vaccination rates were low.
Many in the community had minimal contact with state health services due to a lack of trust, resources and paperwork. In light of the 2010 epidemic, it was clear something had to change.
In response, the National Network of Health Mediators (NNHM) helped health authorities to vaccinate 180,000 children within two months – stopping the epidemic in its tracks.
Where are we now?
Three years ago we interviewed Diliana Dilkova of Bulgaria’s National Network of Health Mediators about her work and the challenges Roma communities face. Now we’re catching up again to see how the situation has changed.
See new extended interview below
The number of health mediators in Bulgaria has grown from 130 to 195 since 2013 and more are in training. Vaccine rates are steady and new communication tools have been deployed.
“The most successful stories come from settlements where the GP and the health mediator work together and deliver one and the same message,” says Diliana.
In collaboration with the European Centre for Disease Prevention and Control (ECDC), a culturally adapted version of the Let’s talk about protectionguide has been provided to health professionals. It offers practical tips on how to communicate about immunisation.
A flipbook explaining vaccination in simple language, and answering common questions, has been developed. And a new family-friendly version of the national vaccination schedule – which comes with coloured stickers – can be stuck on the wall or on a fridge in family homes as a reminder for when vaccinations are due.
However, many challenges remain. Access to services are still a major barrier, particularly for those without health insurance.
Health literacy among the population and funding problems for outreach initiatives threaten the precarious equilibrium than mediators and authorities have helped to achieve since 2010. And, as ever, damaging false rumours circulating unchecked in the community are a constant risk.
“Adequate information and trust are essential in communicating vaccine-related issues to Roma communities,” says Diliana. “That means trust in the doctor and also trust in health mediators in areas where they work.”
Extended Q&A interview with Diliana Dilkova
What are the major health challenges facing Roma communities today?
Unfortunately, one of the greatest challenges Roma continue to face with regard to health is difficulty accessing services. Despite all the recommendations issued by the European Commission to the member countries, access is getting even harder in Bulgaria.
Since the beginning of 2016, patients without health insurance have to make back-payments for five years’ worth of insurance installments if they want to regain access to the healthcare system[1]. Because of this, the poorest citizens have very limited options when it comes to getting medical help.
One of their few options is to go to the emergency department if the situation is really urgent. Another option concerns hospital treatment – there is a State fund that allows payment of hospitalization costs if the patient complies with the requirements regarding their financial status. However, many hospitals in the country refuse to accept such patients – or patients are not aware of this possibility – and the practice shows that health mediators are much needed when the hospital has to be convinced to apply this regulation.
Another significant health challenge concerns pregnant women who are not health insured. Up to 2012 they didn’t have any access to prenatal check-ups without insurance. As of 2012, the State decided to pay for one free check-up and one free laboratory testing during the whole period of the pregnancy. Here again the difficulties are many since the gynaecologists and the laboratories largely refused to accept these women. A lot of work and effort by health mediators has been needed in order to convince at least one gynaecologist in the village to implement such check-ups.
Which infectious diseases are of greatest concern at present?
We continue to be concerned with vaccine-preventable diseases and throughout the years this remains the main focus of the health-information initiatives organized in Roma communities. Since overcoming the measles epidemic in 2010, a lot of efforts were made by the State, the NGO sector and the business sector to establish working partnerships at a local level in order to improve vaccination coverage among the most vulnerable groups. The health mediators together with medical professionals participated in joint trainings providing detailed information about the most important infectious diseases and these initiatives are permanent.
In recent years, the work of the Global Fund to Fight AIDS, Tuberculosis and Malaria in Bulgaria helped identify many localities where the prevalence of tuberculosis and HIV is considerable.
Again, due to the low health literacy and some prejudices in Roma communities these issues should be addressed on many levels. The practice shows that the provision of free testing is not enough – it should be preceded by an information campaign in the communities to explain about the disease and the possible risks for the infected and his/her family.
After the testing – if the result comes back positive – in most cases health mediators must accompany the person to the centre for infectious diseases. Mediators follow up on the treatment because many patients infected with tuberculosis or HIV don’t take their medicines properly.
According to the feedback from health mediators and health professionals there are cases of syphilis in many regions. Until recently this was considered to be a rare infection. The situation worsens in cases when the infected work as prostitutes since the infections spreads.
Here again the case of the poorest and least literate is the worst since the State provides no possibilities for treatment of the uninsured. In addition, the price essential medication is unaffordable for many of them.
In the three years since our last interview, has the situation improved or worsened for the Roma communities you work with?
The situation varies widely from community to community. Throughout the country the communities tend to migrate to countries in Western Europe such as Germany, Belgium and Spain. In cases where they succeed in finding work in a new country, they start to send money to their relatives here in Bulgaria. They repair their houses and generally provide support to their poorer relatives. In terms of health, the positive outcome many GPs have recorded was the improved vaccination status of the children that come back to Bulgaria, especially from Spain.
Apart from these positive effects related to the possibility of working abroad, the chances of finding a job here in Bulgaria, especially if you are Roma, remain few. In light of the continuous complications in accessing health services – such as health insurance, vacant GP practices, closing hospitals – the presence of a stable monthly income is still the only possible resolution to health problems. WHO Reports show that the share of personal expenses for health in Bulgaria surpasses 44% in 2014[2].
For seven consecutive years (2008-2015) Bulgaria operated so-called “mobile units” which were trucks equipped with specialized medical equipment including mammographs, echographs, laboratories, paediatric and gynecological units provided by the EU within the framework of pre-accession programmes (PHARE).
The State was obliged to send them to work in remote areas with vulnerable populations that are without health insurance. In recent years, this was a invaluable option for people belonging to vulnerable groups; it gave them access to preventive check-ups even though the units were underfinanced and worked for quite short periods of time in the year (usually for a month or two). Unfortunately, as of 2016, the Ministry of Health decided not to allocate a budget for the work of these mobile units.
There were 130 Health Mediators in Bulgaria last time we spoke. Are there now more or less?
In 2016 in Bulgaria there are 195 health mediators supported by the State budget and employed by the municipalities. According to the Action Plan of the National Strategy for Roma Integration (2012-2020) their number will be increased by 25 in 2017.
In 2016 the Swiss Fund started to operate in Bulgaria. This provides funding to three municipalities (Montana, Ruse and Burgas) which have also trained 12 new health mediators in the Medical University of Sofia. GlaxoSmithKline also supports, for a 5th consecutive year, the training and employment of new health mediators. More and more municipalities contact us each year willing to participate in the Health Mediation Programme.
The expansion of the programme brings new challenges, mainly in terms of sustainability. The most important of these remains the need for developing a standard for health mediators’ work – including selection, training, monitoring and reporting. The position of the National Network of Health Mediators must be formalized. This is the organization that communicates with the municipalities, participates in the selection of new health mediators, organizes training, implements internal monitoring of the programme and ensures the high quality of health mediator’s work – but still on a voluntarily basis.
Are vaccination rates going up or down in Roma communities?
It is difficult to be precise since in Bulgaria there is no possibility to collect data based on ethnicity. According to the feedback from the health mediators, vaccination trends are stable in recent years.
In the settlements where health mediators have been working for many years already, there are a few problems with completing the obligatory vaccination schedule, mainly due to the parents that are not strict or to the fact that during the winter season the children gets ill very often.
False information spread by media (Bulgarian or Turkish) about supposed dangers of vaccines cause fears in the communities – health mediators usually report such cases and receive support and advices from the network or from their colleagues on how to overcome such situations. Anti-vaccination trends continue to be limited mainly to parents belonging to mainstream society among whom the trust in medical professionals is also lower.
What can be done to overcome vaccine hesitancy among some Roma parents?
If we have to define it with a few words – adequate information and trust are essential in communicating vaccine-related issues to Roma communities. That means trust in the doctor and also trust in health mediators in areas where they work.
The most successful stories come from settlements where the GP and the health mediator work together and deliver one and the same message.
Aiming to pilot actions targeted at overcoming vaccine hesitancy at the end of 2012 we started cooperation with ECDC. The National Network of Health Mediators (for Bulgaria), together with three more organizations from Romania, Hungary and the Czech Republic started the cultural adaptation of a tool named “Let’s talk about protection”[3] – a communication guide on childhood vaccination. The tool consists of a manual for health professionals helping them to communicate better with the different types of parents and communities (including Roma) and also – a Flipbook designed for working with parents.
Both the manual and the flipbook were adapted to the Bulgarian context and, in 2014, the NNHM continued the cooperation with ECDC with a pilot initiative in three settlements. The health mediators organized community gatherings and with the help of the flipbook they explained in simple language the importance of vaccinations and the specifics of each vaccine-preventable disease. They also answered the most common concerns possible side effects and ingredients.
In addition to the tool, we developed other material that proved to be very effective among the most vulnerable families – a colour-sticker presenting the National Vaccination Schedule in a friendly way. Together with the health mediator, the parents had to decide where to stick it in the house (for example, on the refrigerator, on the wall) so they could see it often and not miss a vaccination.
The feedback both from communities and GPs was positive. The health mediators liked the idea of using the same material as doctors and the GPs’ feedback showed that due to their limited time they appreciated that health mediators can do some preliminary work with the parents.
Vaccine hesitancy could be addressed successfully by providing parents with trustworthy information, not only about vaccine safety but also about the harm caused by vaccine preventable diseases, the concept of community immunity and also some statistics about the dramatic decrease in morbidity and mortality from certain diseases since the introduction of vaccines.
[1] The previous regulation required payment of installments for the last 3 years.
[2] http://data.worldbank.org/indicator/SH.XPD.OOPC.TO.ZS?end=2014&locations=BG&start=2014&view=bar
[3] http://ecdc.europa.eu/en/healthtopics/immunisation/comms-aid/Pages/protection.aspx – Guide available for download in English
