Magyar Onkohematológiai Betegekért Alapítvány
Since 2003, Ibolya Kéri, the president of MOHA (Magyar Onkohematológiai Betegekért Alapítvány, Hungary), has had an interest in helping patients with oncohaematological diseases, i.e., all cancers of the blood and lymph system.
“One of my friends was diagnosed with chronic myelogenous leukaemia (CML) in 2003. Unfortunately my friend died but I remained dedicated to helping patients with similar conditions,” said Ibolya. She has both a bachelor’s and master’s degree in social work, as well as a special certification in the care of the elderly.
Ibolya has been working in the oncology field as a social worker since 2003. It was while she was working for the Hungarian Cancer League that she started the first support group for patients with lymphoma.
“When I left the Hungarian Cancer League for a new job running a home for the elderly, I started a new support group for patients with lymphoma and myeloma, which I ran in my free time,” she said.
This new support group grew in popularity and Ibolya decided to start an official foundation that focused on support for patients with oncohaematological diseases.
“I believed that caring for Hungarian patients would be more effective within the framework of an official foundation,” she said.
Founded in 2014, MOHA is a registered, non-profit, independent, non-governmental organisation (NGO). As a result of this status, MOHA can receive financial support.
The goals of MOHA are to provide information, education and emotional support to patients and relatives, as well as raise awareness about oncohaematological diseases. Helping Ibolya achieve these goals are Dr. Anna Vámosi and Ágnes Magyar, both of whom have had an oncohaematological disease.
“Dr. Vámosi has been practising law for more than 30 years and her legal knowledge about contracts is absolutely invaluable to MOHA. Ágnes is an economist who, as a result of her own experience, realised that there was a lack of good information for patients in Hungary so she started to educate patients as a volunteer,” Ibolya said.
MOHA also has 10 to 15 volunteers who help with organising events and registering attendees.
MOHA’s Support Groups
Among the many activities that MOHA undertakes in a given year are regular meetings of support groups. MOHA has support groups for patients with lymphoma and myeloma, CML, myelodysplastic syndromes (MDS) and hairy cell leukaemia. These meetings, held in Budapest, are open to anyone, are free and last between two to three hours.
“Some support groups will have a speaker. For example, at the last lymphoma and myeloma support group meeting, an expert gave a talk on chronic lymphocytic leukaemia and then attendees had an opportunity to ask questions,” Ibolya said. Between 10 and 20 people attend each session.
In 2016, the intention is to hold eight support group meetings for the lymphoma and myeloma group which has been meeting since 2012. For the CML support group, started in 2015, eight meetings will also be held in 2016. The MDS and the hairy cell leukaemia support groups will have their first meetings in 2016.
“Six meetings are planned for the MDS group and three to four for hairy cell leukaemia,” she said.
While all support group meetings are held in Budapest, Ibolya is hoping to start a new one in Pécs which is located in southwestern Hungary close to the border with Croatia. This support group will focus primarily on leukaemia and lymphoma.
The support groups are open to anyone but those not living in Budapest may not be able to get to them.
“Most patients have little money for travel as it is expensive. However, when we organise a big event like World Lymphoma Awareness Day, we arrange for paid transportation, by bus, to the event in Budapest,” she said.
Among the many duties that Ibolya performs at MOHA is patient counselling.
“The counselling service aims to improve and promote the social and emotional well-being of patients. This may include patient and family counselling, case work support and group work,” Ibolya said. There are no fees for the counselling services.
On average, Ibolya spends about 10 hours a month counselling patients, usually in person or via the telephone. She noted that younger patients with CML prefer to get help via Facebook.
Challenges Facing Patients
Patients with an oncohaematological disease have limited access to needed treatment, particularly innovative therapies.
“Funding for the more innovative therapies is decided on a case-by-case basis. This places a heavy burden on doctors as they have to present arguments for why the national insurance company should provide funding. Part of this process entails completing large amounts of paperwork,” Ibolya said.
Once the funding has been approved, it is only for three months and then the doctor has to make another application for another three months of funding.
“Not all doctors will do case-by-case applications and even when applications are made, the processing time is long resulting in patients not receiving adequate or timely care. It’s horrible,” she said.
Of the 73 therapies that have received regulatory approval for lymphoma in Hungary, only 25 have received funding approval.1
Another challenge confronting patients is lack of access to understandable as well as reliable information about oncohaematological diseases.
“We are hoping to publish a number of different brochures and leaflets but it depends on how much funding we get,” she said. Ibolya is also hoping to update MOHA’s website and add more information on lymphoma.
Ibolya puts together a quarterly newsletter that is sent to 500 people.
“The newsletter includes information on oncohaematological topics as well as news about MOHA’s activities,” she said.
Value of the Lymphoma Coalition
MOHA recently joined the Lymphoma Coalition (LC).
“As a Hungarian NGO, it is a big honour for us to be a member of this community of patient advocates. We are ready to learn and share best practices in order to raise awareness about lymphoma,” Ibolya said.
In addition, Ibolya said that by being a member of LC, MOHA can get relevant information on the latest therapies, research and conferences.
Grateful thanks to Ibolya and the people at MOHA for all your efforts to make a difference in the lives of those with lymphoma.
1. Global therapies. Lymphoma Coalition Global Database. http://www.lymphomacoalition.org/lcinfo/globalTherapy.php. Accessed February 3, 2016.
February 29, 2016