ECPC's member of the month August 2009 is:

VIORICA CURSARU

My Organisation

Myeloma Euronet Romania was legally established in September 2007. It is part of Myeloma Euronet, the European Network of Patient Groups. From the very beginning, Myeloma Euronet Romania has fully engaged in advocating for fair access to treatment of MM patients, for improved quality of their life and last but not least, for their access to medical information which in Romania is almost non-existent.

In our meetings with the Ministry of Health, including former State Secretary, we strongly advocated for streamlining the procedures governing Velcade treatment and for market authorization of Thalidomide which, notwithstanding EMEA and EU endorsement, as well as the recognition of the European Medical community, continues to be an outcast drug from the Romanian market. Needles to mention that the lack of Thalidomide on
the Romanian national market is conducive to the development of a black market for the Romanian patients suffering from Multiple Myeloma.

Due to an extremely precarious financial situation, explained both by complete lack of support from Pharma community and/or civil society, let alone the State which, unlike in some other countries, does not support financially the Romanian NGOs, Myeloma Euronet could not yet achieve one of its important objectives, namely to facilitate the access to information for the Romanian patients suffering from multiple myeloma. As awkward as it may seem, as of yet, let alone a functional website, we have neither brochures nor leaflets in the Romanian language about multiple myeloma, except a multi-page spiraled document, made up in the office by Myeloma Euronet Romania and distributed to the patients in Bucharest.

My story

I am the president of Myeloma Euronet Romania and a widow of a  Multiple Myeloma patient. When Mihai was diagnosed with Multiple Myeloma in December 2005, at the age of 61, I was completely devastated. I loved my husband. We lived together for 42 years, had a son together and a nice family. He was a very handsome and a sport type who, before being diagnosed with MM, used to run for miles around the lake, played tennis and football. When he died 30 months after – I wished that prognosis for life expectancy had not been so accurate – I felt like part of me was also gone.

After my husband’s death I lived through a real dilemma. Should I continue working for Multiple Myeloma, an Organization which I founded when my husband was diagnosed with MM or should I stop. It did not take too long before I realized that, in memory of my husband and for the sake of  his hospital-roommates and not only, I had the duty to carry it on. I also found out  that I was not alone. I found friends and support within MYELOMA EURONET NETWORK, EURORDIS, ECPC, ECCO, ESMO and EMEA. Through them and together with them I found a new scope and a new meaning to my life and, hopefully, one day, my humble contribution will MAKE A DIFFERENCE for the MM patients in Romania.

How to contact me

email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

http://www.myeloma.ro/ Myeloma Euronet Romania

http://www.myeloma-euronet.org/

See also our previous ECPC Members of the Month.