MEMBER BEST PRACTICES

Hrvatska Udruga Leukemija I Limfomi (HULL) (Croatian Leukaemia and Lymphoma Society), Croatia

When Dražen Vincek was diagnosed with chronic myelogenous leukaemia (CML) in 2010, he thought he was going to die.

“I was very unhappy, crying and afraid. But then I heard from doctors and others about HULL (Hrvatska Udruga Leukemija I Limfomi) and that there are many different kinds of help and medicines available,” said Dražen, who is the president of HULL, an association for patients with a blood cancer and other haematological diseases, their families and caregivers in Croatia. Dražen, a retired police officer, became president of HULL in 2017. Prior to that, he was the president of the branch office in Varaždin and president of the CML Club at HULL.

“As a result of finding out about HULL I’m still living,” he said. Following his diagnosis, Dražen got involved with HULL because he wanted to help others in similar situations.

For example, Dražen was recently contacted by the worried father of a young child with a haematological cancer.

“In a few words, I was able to tell him about our booklets and that seemed to help him,” he said. HULL has a number of information brochures and booklets available on its website that cover a variety of topics including myelodysplastic syndrome, lymphoma, leukaemia and nutrition.

The Founding of HULL

HULL was started in 1994 with the express purpose of helping patients obtain the expensive treatments needed for leukaemia, lymphoma and other haematological diseases. The other objectives of HULL are to:

  • Inform patients about new treatments;
  • Encourage the improvement of medical standards in haematological departments;
  • Encourage the education and professional training of physicians and nurses.

“We had the leading haematologists in Croatia help us form the organisation. Today, we have a steering committee that comprises 10 patients and 10 doctors,” he said. While Dražen is the president he is a volunteer. HULL has only one paid employee.

Challenges with Volunteers

While the society’s main office is in Zagreb, the capital of Croatia, there are six branch offices located in other parts of the country. To help with its work, HULL relies on volunteers but this can be challenging.

“When people are first diagnosed, they are very keen to help but once they are feeling better or have the information they need, they forget about what it was like when they were first diagnosed,” he said. Dražen estimates that about 10 people help out in the branch offices and about 50 volunteers in the Zagreb office.

HULL also works with other organisations in Croatia to organise events. For example, working with a society that helps people with rare cancers, a stair climb challenge has been run every year for the last five years with the fire department in a small town outside of Zagreb.

“There are so many volunteers from the fire department who help out with this event every year,” he said.

The idea to organise the annual stair climb challenge came from New Zealand where Leukaemia & Blood Cancer New Zealand has been doing a similar event since 2004. 

Treatment Access Challenges in Croatia

The biggest challenge facing patients in Croatia is getting the best treatment for patients. 

“In Croatia, many think the reimbursement of treatments is good but that is only on paper. Our government usually tries to make cost the reason for not making a treatment available. The government would rather we only used the older treatments because they are cheaper,” said Dražen.

One of the challenges has been with the availability of imatinib (Glivec).

“The licence for imatinib expired two years ago. There were six or seven generics available but the government didn’t know which one was best.” he said.

To try and resolve the issue of making treatments available, HULL in collaboration with the myeloma patient organisation, organised a roundtable discussion in 2017.

“We invited all parties involved in the decision-making process such as the Ministry of Health and the Croatian Health Insurance Fund to explain our issues and what we needed,” he said. While all treatments may not yet be reimbursed as a result of this meeting, it was a start. 

World Lymphoma Awareness Day 2017

For World Lymphoma Awareness Day, HULL organised educational sessions for patients in the Slavonia region of Croatia. In previous years, HULL has livestreamed the educational sessions but this year, HULL put the sessions on YouTube.

“This is a functional way to get information to patients as they can then review it in their own time,” said Dražen.

Thank you, Dražen, and your team at HULL for all the help you give those with a haematological disease as well as their families.

 

Published on 1 November 2017

 

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