Bulgarian Lymphoma Association
The Bulgarian Lymphoma Association was established in 2006 at which time it started its work in patient advocacy. For some years, the association struggled with authorities to ensure patients with lymphoma received the best treatment possible
as the government wanted to avoid using expensive therapies whenever possible. To combat this, the association attempted to raise the voice of the patient through co-establishing one of the biggest patient organisations in the country — the National Patient Organisation. Through this initiative, the Bulgarian Lymphoma Association has been able to expand their activities and combine their efforts with many other patient organisations.
In addition, a member of Bulgarian Lymphoma Association has participated in the work of the Commission for Patients’ Rights at the Ministry of Health and a representative of the association has been admitted to the sessions of the Health Commission held in parliament. Throughout all these initiatives, efforts have continued to try and increase awareness about lymphoma, its symptoms, how it is diagnosed and its treatment.
Promotion of stem cell donation
One of the initiatives that the Bulgarian Lymphoma Association has been championing is the importance of stem cell donation. When work started on this two years ago, only 400 people, mostly doctors and relatives of patient with lymphoma and leukemia, enrolled with the Bulgarian registry as potential donors. As a result, an awareness campaign was undertaken in the media (television, radio, print). The goal of the campaign was to explain the importance of finding a match for a patient needing a transplant and how it was simple for any person to donate.
The campaign made use of folklore and historical symbols that would be recognisable to any Bulgarian. The image used was a boy and a girl made of white threads. This image was distributed throughout Bulgaria: it could be seen on the subway, in leaflets at concerts, on posters on buses and many other places reminding people that the red colour was missing because of the lack of blood samples in the Bulgarian registry. The campaign explained that stem cells can be taken from the peripheral blood, not only from the marrow.
Two radio spots were also created for use in morning, noon and evening broadcasts. These spots were aired by 11 radio stations. Posters promoting stem cell donation were placed in the universities. The Bulgarian Lymphoma Association also started working in co-operation with the medical student organization. As a result of these efforts, a chain of medical laboratories with branches in all major cities in Bulgaria agreed to take blood samples from volunteers and send them by courier (DHL) to the registry based in Sofia. DHL did this for free.
Along with medical specialists, the Bulgarian Lymphoma Association visits companies to explain the use of stem cells for transplantation to employees and take blood samples from those who want to register as potential donors.
The brochure promoting stem cell donation is distributed in medical laboratories and haematology clinics throughout Bulgaria. The Bulgarian Association is also trying to promote the use of buccal swabs for the extraction of DNA. Using buccal swabs will make becoming part of the registry of potential stem cell donors much easier.
This year, the Bulgarian Lymphoma Association started promoting the idea of donating umbilical cord blood. Many young Bulgarian parents are tempted to preserve their baby’s umbilical cord blood for use by their child, if needed, when he or she becomes an adult. But what parents do not know is that it will likely not be enough for an adult and that there exists a national bank for umbilical cord blood to which they can donate the umbilical cord blood of their baby. This material can then be used years later together with the material donated by others for saving the lives of patients with a blood cancer, maybe even their own child. The Bulgarian Lymphoma Association believes that many young and socially engaged people, upon becoming parents, will donate their baby’s umbilical cord blood.