A Peek at ONCOHEM (Russia)

As the largest country in the world and the ninth most populous nation at almost 143 million people,1 Russia has a set of health care challenges that are all its own. For lymphoma specifically, the major haematological research centres do not have the capacity to undertake research in lymphoma.

As well, in many regions, lymphoma is not treated by a haematologist, but rather an oncologist, and the use of the latest or newer treatments is not high resulting in lower treatment success rates for patients with lymphoma.

Adding to these challenges is the lack of a national bone registry. Patients seeking a bone marrow match must apply to the European Group for Blood and Marrow Transplantation (EBMT), and pay for the cost of the donor search and transplantation, if the match and procedure happen outside of Russia.

ONCOHEM’s Best Practices

Working within this challenging situation is ONCOHEM, an organisation that provides help to haematology/oncology patients. The main objectives of ONCOHEM are to:

  • Protect the rights and interests of haematology/oncology patients;
  • Assist these patients in their medical journey as they work through the social, legal and financial issues they face.

With these objectives in mind, ONCOHEM has created a number of activities and initiatives including:

  • A “patient diary” booklet in which patients can track their medical information such as medications, necessary tests and tests taken, and any other information that allows for dynamic patient observation by medical professionals.
  • Successful donation efforts in spite of difficult economic times. These successes have been covered by Russia’s mainstream media.
  • Hosted patient education sessions at regional hospitals. The one held at the Kaluga Region Hospital focused on the prevention of complications, psychological rehabilitation and patient rights. Speaking at the session was Russia’s leading haematologist, psychologist and lawyer.
  • With a bit of fun in mind, a New Year’s Concert was held for patients, their relatives and doctors within the intensive care sector.
  • Helping to ensure that lenalidomide, a treatment for patients with multiple myeloma who have received at least one line of therapy, was included in Russia’s Vital and Essential Drug List for 2012.
  • With the help of Anita Waldmann and Candy Heberlein, communicated with the bone marrow registries in Switzerland and Germany to help a 23-year-old patient needing a match for bone marrow transplantation.

ONCOHEM’s plans for 2013 are well under way and include:

  • Promoting safe fitness for patients during chemotherapy and rehabilitation. To this end, ONCOHEM has created leaflets and an instructional video to teach the exercises.
  • Actively communicating with the government on behalf of patients with lymphoma to shed light on the unique issues they face.
  • Continuing patient education sessions throughout the country with leading haematologists, lawyers and psychologists that focus on patients’ rights, access to medicines, what to expect with chemotherapy and radiation therapy, and how to obtain psychological support for both patients and their families.
  • Creation of information booklets on Hodgkin’s lymphoma, oral care during chemotherapy and radiation therapy, thrombosis and non-Hodgkin’s lymphoma. • Protecting the rights of patients who have applied for legal aid by helping them through the complicated process.
  • Continuing a blood donor campaign for the Haematology Research Centre.

On behalf of the Lymphoma Coalition, we’d like to thank ONCOHEM for all their hard work and continued passion in providing best practices for lymphoma and haematology/oncology patients and their families in Russia.

Website: oncohem.org Reference:

1. Demographic Chart. Lymphoma Coalition. http://www.lymphomacoalition.org/global-information/demographics Assessed February 20, 2013

 

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