The death of two friends from cancer as well as her mother being diagnosed with melanoma spurred Biljana (Biba) Dodeva to start Borka in 2007.
“Biba, who is a well-known singer in Macedonia, used her celebrity status to draw attention to the cause when she started Borka,” said Lidija Pecova, the Communications Manager and Biba’s Executive Assistant. Lidija joined Borka in December 2015. Prior to joining Borka, Lidija worked in Australia for a not-for-profit organisation.
While the death of Biba’s friends and the diagnosis of her mother with melanoma were part of the reason for her decision to form Borka, the other part was the lack of information on all types of cancer in Macedonia.
“Not only was there no information, there was also a lack of support for patients with cancer,” said Lidija. Borka, which means to fight, provides support for all types of cancer in Macedonia.
In addition to Lidija, three other people work alongside Biba: Mirjana Babamova, Afrodita Davcevska and a part time social worker Atina Sazdova.
“I started working at Borka as a volunteer in 2009 but I am now the program coordinator,” said Mirjana, who got involved because her mother died from breast cancer. Mirjana is a dentist by training and has been of great help to Borka.
“My role is to work on projects that focus on raising awareness about all types of cancer,” said Mirjana.
Afrodita, who is a psychologist, provides her services on a volunteer basis.
“Afrodita works in the office every morning answering telephone calls that come in on our hotline and then in the afternoon, she continues this work from her home,” said Lidija. Twice a week, she visits the oncology ward at the University Clinical Hospital in Skopje, Macedonia’s capital, to talk to patients. In addition, she also runs a support group for survivors of breast cancer.
The primary goal of Borka is to be there for patients and answer any questions they may have. Borka is trying to raise awareness about the importance of early detection. Borka is also trying to put cancer in the forefront of the health system and lobby within the health system for a national Strategic Cancer Control Care Plan as well as a registry system to be put in place.
“When Macedonians hear the word ‘cancer,’ they immediately associate it with death. It’s very difficult to talk about and most people just want to sweep it under the carpet,” said Lidija.
Borka’s aim is to try and persuade Macedonians that getting a check-up may not result in a diagnosis of cancer but that it is a preventive measure.
“I’ve seen a big change in people’s attitudes since we started educating them about the value of having a check-up. We get a lot of calls on our hotline from patients who have detected breast cancer after seeing one of our awareness campaigns,” said Mirjana.
Borka also wants to educate patients about their rights.
“For example, we want them to know that they can get a second opinion and not always take everything the doctor says at face value,” said Lidija.
Support for Patients
Borka supports patients in a number of ways. For example, women with any type of cancer who have lost their hair are provided with wigs.
“We also provide them with some social support through a weekly support group to help those who are trying to re-enter the workforce,” said Lidija.
Cancer is associated with a big stigma in Macedonia and those who have had cancer face discrimination.
“At the support group, attendees can share stories and talk to others,” Lidija said.
Aside from the support group in Skopje, Borka has 13 other support groups in other parts of Macedonia.
“Our volunteers help out at the support groups,” said Lidija. Borka has 15 active volunteers and 90 volunteers who can be called upon when extra help is needed on a national level.
In addition to the support groups, patients can drop in at Borka’s office if they have questions.
“On average, we get about three or four people dropping in every day,” said Lidija.
Those dropping in have usually come from seeing their doctor but have questions their doctor hasn’t answered.
“One of the challenges with our healthcare system is that there are not enough doctors to give patients the attention they need. Doctors are overwhelmed and can’t devote the time needed to help patients,” said Lidija.
Challenges with Healthcare System
The majority (90%) of Macedonians have health insurance which means that when they use the public health system, they only pay 10% of the total cost with the remainder being paid by Macedonia’s health insurance fund. In 2007, Borka started to lobby for a change in the healthcare system that would see patients receiving, for free, chemotherapy, radiotherapy and any type of surgery related to a malignant diagnosis including a biopsy. In 2009, they achieved this with the Minister of Health making a public announcement and putting it in print.
Access to new treatments is also challenging. Since 2007, over 70 different treatments have been approved by the Food and Drug and Administration in the USA; yet, not one of them is available in Macedonia on the positive list. Macedonia has not received any type of new innovative drugs since 2007. Although some of the new treatments can be bought privately at a very high cost, access to these drugs is very limited.
“We are lobbying for a separate fund to be introduced for new, innovative treatments to be available in Macedonia and for them to be on the positive list” said Lidija.
While private healthcare is available, it is very expensive.
“Someone going to a private hospital can get everything they need but they have to pay for it as there is no such thing as private health insurance,” said Lidija.
According to GLOBOCAN,1 there are approximately 35 patients with Hodgkin lymphoma and 80 patients with another subtype of lymphoma in Macedonia. Those with lymphoma will receive treatment at the haematology clinic in Skopje. In addition, there are a further 150 patients with multiple myeloma and other leukaemia malignancies.
“They usually do not have any problems getting the required treatment, other than any new treatments that are available in other countries” said Mirjana.
Access to clinical trials is also a challenge in Macedonia with patients having almost no access to them. Borka is working on informing and educating patients about clinical trials as well as working with stakeholders and healthcare providers to overcome this difficulty.
Raising Awareness Initiatives
One of the campaigns the team is working on is the raising of awareness about thyroid diseases.
“This involves a caravan going around the country doing check-ups using ultrasound,” said Mirjana.
Borka also held its first multiple myeloma education symposium in 2016 and issued the first guideline for patients in the Macedonian language.
“This event was primarily for healthcare providers as they need education on this type of cancer,” said Mirjana.
One of the speakers was a multiple myeloma expert from Slovenia. There was also a local expert as well as a representative from the rare diseases organisation in Macedonia speaking at the event.
Macedonians have a different culture around donating to charities making it difficult to raise funds.
The only fundraising event that Borka undertakes is the annual walk for the cure for breast cancer which has had some positive results.
“We’ve received feedback that because of the event, women went and got themselves checked,” said Mirjana.
To pay for projects such as the thyroid awareness campaign, Borka will receive funds from a pharmaceutical company or from larger associations that provide grants.
“There is so much work we could do but we lack the resources. At the end of the day, though, we want patients to know we’re here for them and they are always welcome,” said Lidija.
Grateful thanks to Biba, Lidija, Mirjana, Afrodita and Atina for all your wonderful efforts to help those with cancer get the care they need.