A Peek at OLHB Kraujas (Lithuania)
The impetus for the founding of OHLB Kraujas (Oncohaematological Patients’ Association of Blood) in 2002 was the need to improve the availability of new therapies in Lithuania.
“Patients and doctors formed this community so there would be a voice to say that we need new medicines, we need modern medicines, we need innovations,” said Karolis Azukatis who helps out on many of the different projects undertaken by OHLB Kraujas.
Initially, when Karolis started working at OHLB Kraujas while still a medical student in 2011, it was only going to be for one project.
“It so happened that Ieva (OHLB Kraujas’s president) joined the organisation at the same time and we worked well together. So, I just stayed and started working on other projects,” said Karolis.
Ieva Drėgvienė got involved with OHLB after helping her husband get the medicines he needed to treat his chronic myelogenous leukaemia (CML).
“As a result of Ieva and her husband’s efforts, the treatments needed at that time for CML – second-generation tyrosine kinase inhibitors – were reimbursed for all patients,” said Karolis.
Once Ieva’s husband started to receive the treatment he needed and was improving, she decided to continue working to help others get access to the medicines they needed.
OHLB Kraujas has a five-member board of directors of which two are physicians (Professor and Dr. Laimonas Griškevičius, the head of the haematology centre in Lithuania, and Dr. Rita Čekauskienė, the head of the bone marrow registry centre in Lithuania), two are patients and Ieva who is responsible for the day-to-day activities of the organisation.
Four people, including Ieva and Karolis, work at OHLB Kraujas. The tasks performed by the other two employees include administration/project management and public relations.
Within the organisation there is an oncopsychology communication centre as well as a bone marrow donation centre. The purpose of the oncopsychology communication centre is to provide oncopsychological support to patients when they are in hospital and by phone once they have been discharged. These services are free of charge. Three oncopsychologists work at the centre.
The purpose of the bone marrow donation centre is to promote the donation of bone marrow.
“While the bone marrow donation centre is a separate entity, the same people work on the project – myself and one member of the board of directors,” said Karolis.
OHLB Kraujas’s Objectives
The main objective of OHLB Kraujas is to increase the availability of new medicines and innovations for patients with blood cancers as this is one of the biggest challenges facing patients in Lithuania. To this end, the organisation participates in a number of legislative initiatives.
“We play a role in the development of laws for bioethics, biobanks (repositories for human biological samples) and transplantation guidelines. This is somewhat unusual as other patient organisations don’t usually participate in legislative activities,” said Karolis.
OHLB Kraujas also participates in Ministry of Health working groups such as one for the reimbursement of therapies.
“From the beginning, we wanted to be an organisation that consisted of both patients and doctors so our voice could be heard at the Ministry of Health and in Lithuania’s parliament so we could tell them what patients actually need,” said Karolis.
While OHLB Kraujas has been somewhat successful in convincing the government to fund therapies in individual cases, the same degree of success has not been experienced when it comes to the development of new laws.
“At the moment, we are having a number of difficulties developing new laws for Lithuania’s transplantation programme,” he said.
Until recently, reimbursement for bone marrow transplantation was through a special programme that guaranteed, but not unlimited, financial support as it was viewed as a field of medicine that required different support compared with typical funding mechanisms in Lithuania.
“Now, the government is trying to change the payment system and pay for transplantation through the same process as the health insurance fund but there are difficulties. When applying, patients feel that they cannot predict how much money will be required for their full treatment,” said Karolis.
For patients who have been diagnosed with a blood cancer that is responding to the treatments approved and reimbursed in Lithuania, the government pays for everything including required diagnostics.
“If a patient needs one of the newer therapies or becomes resistant to the typical first- or second-line therapies, then there is a problem because we either have to try to buy the needed medicine for the patient or the patient has to buy it with his or her own money,” said Karolis.
With the exception of brentuximab vedotin, none of the newer therapies and therapy combinations that have been approved by the European Medicines Agency (EMA) for the treatment of lymphomas are reimbursed in Lithuania. The newer therapies and combinations that the EMA has approved are bendamustine, bendamustine plus rituximab, ibrutinib, idelalisib, idelalisib plus rituximab, ofatumumab and pixantrone. For more on the availability of therapies in Lithuania, see the Global Database Search on the LC homepage (www.lymphomacoalition.org) or go to the OHLB Kraujas website.
The other objectives of OHLB Kraujas include:
- Providing patients with oncopsychological support;
- Educating patients;
- Ensuring patients have what they need while in hospital such as towels;
- Providing patients undergoing treatment with accommodation.
Patients Helping Patients
The creation of disease ambassadors came about as a result of patients feeling more confident about information that came from other patients who’ve had similar experiences.
“If a doctor tells patients something, they do not trust it as much as when hearing it from a person who has actually gone through it,” says Karolis.
OHLB has 16 disease ambassadors with each ambassador providing consultations to approximately 10 patients in a given year. Consultations are done via the phone or email.
In addition to the disease ambassadors, OHLB Kraujas is in the process of recruiting 70 volunteers to help out in hospitals as well as at OHLB Kraujas.
“The volunteers will provide patients with social support like helping them with their shopping,” he said. These volunteers will be based only in Vilnius.
Day of Blood
Usually held on May 16 every year, the purpose of the Day of Blood is to raise awareness about blood diseases. It is held in Vilnius with attendance increasing each year: in 2014 180 people attended compared with 110 in 2013.
“During the day we have interviews on major TV shows and the press attends the event. At the event, we not only raise awareness about blood diseases but we also provide lectures on the different diseases, diet and psychological issues,” said Karolis.
Two parallel sessions are held during the one-day event: one for patients and their families and one for family physicians.
“The session for family physicians focuses on how to recognise the disease early and the care needed for these patients,” he said
Accommodation Assistance for Patients
While there are three treatment centres (Kaunas, Klaipeda and Vilnius) in Lithuania where patients with a blood cancer can receive treatment, only those obtaining treatment in Vilnius can receive help with accommodation.
“We don’t have the funding to provide accommodation in the other cities. Vilnius was also chosen because it’s the only centre where patients can undergo stem cell transplantation,” said Karolis.
Accommodation is provided at a hotel near the hospital where four rooms are always reserved for patients and their families. If there are more patients requiring accommodation, the hotel can provide additional rooms.
“Not all patients coming to Vilnius will have somewhere to stay so accommodation at the hotel is helpful,” he said.
While OHLB Kraujas pays for the accommodation, the patient is responsible for purchasing their own food and meals.
Importance of Patient Education
Educating patients about their disease and treatment options is key. To achieve this goal, approximately three training sessions are held each month with more than 30 sessions taking place in a given year. The topic of the session will likely determine how many people attend. Each session usually lasts 90 minutes.
“Usually between 10 and 20 people attend. If it’s a very rare disease, there may be fewer attendees. If the session is on myeloma, there may be 50 attendees as those patients are very active,” Karolis said.
The sessions are led by a specialist in the topic under review with OHLB Kraujas providing psychological training or training on diet as OHLB Kraujas has a dietitian who has specialised in the dietary requirements for haematological malignancies.
Recognising the importance of diet, OHLB Kraujas published a 300-page book about diet and cancer in 2014.
“It was written by doctors, chefs and oncopsychologists and has recipes as well as recommendations for the management of side effects,” said Karolis. The book is entitled What to Eat When You’re Sick with Cancer.
Psychological Support for Patients
The oncopyschological communication centre within OHLB Kraujas helps patients deal with the psychological aspects of their illness. The centre, started in 2010, has three oncopsychologists who provide one-on-one counselling as well as group sessions.
“Almost every evening we hold group therapy sessions which can include such things as art or dance therapy,” said Karolis.
Spreading the Word about OHLB Kraujas
While it used to be challenging making people aware of the services OHLB Kraujas provides, undertaking some public relations initiatives has helped.
“Giving interviews with newspapers has led to articles being published about our patients and their experiences,” said Karolis.
Another awareness-building tactic has been the use of advertisements in all cities with patients saying they are free of cancer because they received one of the newer therapies. And, in hospitals, there are big stands with information about OHLB Kraujas.
Doctors also see the value of the work that OHLB Kraujas undertakes.
“They (doctors) are quite active in telling patients that if they need help in getting a certain treatment, they should get in touch with OHLB Kraujas,” said Karolis.
Congratulations OHLB Kraujas on this fantastic work and patient support. Thank you for all your efforts to help those patients and their families with a blood cancer receive the care they need.
March 30, 2015