In 1994, Monica Bunaciu was diagnosed with acute t-cell lymphoblastic leukemia. She began treatment in Romania, where resources were limited and accessing effective therapies was difficult. After suffering two relapses in two years, she was told she needed a bone-marrow transplant in 1996. At this time, bone-marrow transplants were not performed in Romania. Luckily, she received a donation which allowed for her to receive this treatment in Germany. In 1994, Monica Bunaciu was diagnosed with acute t-cell lymphoblastic leukemia. She began treatment in Romania, where resources were limited and accessing effective therapies was difficult. After suffering two relapses in two years, she was told she needed a bone-marrow transplant in 1996. At this time, bone-marrow transplants were not performed in Romania. Luckily, she received a donation which allowed for her to receive this treatment in Germany.
Upon arriving in Germany, the doctor refused to perform the procedure suggesting that it was senseless given that Monica had no more than a week to live. Shocked and distraught, she began seeking out doctors who would perform the transplant or accept her in a clinical trial. Finally, she located a willing physician in Italy.
“He said he would try to save me and this is the reason I am alive today. I have now been leukemia-free for 22 years; the doctor says I am a miracle,” she said.
For this reason, many patients who were in similar situations began coming to Monica for guidance and support. In 2006, she founded Asociata Romana Impotriva Leucmiei (ARIL) to extend her aid to a wider patient population.
Monica, now living in France, acts as president of ARIL and supports hundreds of patients a month both in Romania and across many other countries. She travels to Romania monthly. ARIL is a formal organisation with a board of three members. ARIL’s activities are carried out with the support of volunteers (10-20 at any given time), including doctors, former patients, psychologists, and other health coaches.
The mission of the organisation is to improve the chances of recovery for current and future patients with hematological diseases in Romania by acting to improve treatment conditions. They put this into action by trying to find solutions for the problems patients identify and bring forward.
Challenges for Patients
In recent years, many things have changed in Romania, diagnostic and treatment conditions have improved but there is still much to be done.
Much like Monica’s experience, many patients in Romania continue to lack access to vital drugs and treatments. Doctors sometimes cannot prescribe certain treatment protocols because the necessary drugs are unavailable or unapproved. Because of this, patients must leave the country for treatment—if they can afford it. Monica suggests the need for a coherent drug policy that would provide the necessary medicines to carry out chemotherapy. Additionally, an appropriate policy that would increase the number of clinical trials; Romania has the longest clinical trial approval period of any European country (25-55 weeks).
Monica said that cultural beliefs sometimes prevent patients from seeking treatment.
“Patients are looking for news and solutions on the internet, and find articles saying that certain therapies or chemotherapy is killing people and is only produced to make pharma companies rich. In 2017, eight young patients we were in touch with died because they refused certain medical services,” said Monica. There is a lot of education needed in this area.
Holistic Support Model
ARIL volunteers are extremely active in hospitals and clinics in Romania. They meet with patients and provide a range of services, from financial aid to hairstylists.
Once a month, ARIL hosts a free educational webinar for up to 100 participants. Romanian doctors, psychologists, dieticians, and other specialists are invited to speak with patients using this online platform. Patients can attend live or send their questions to ARIL by email, which are asked during the webinar by ARIL staff. These webinars are recorded and posted on the ARIL website for those who cannot attend.
ARIL is also putting together a short film covering various lymphoma/leukemia related topics from diagnosis through to recovery. They will play this film for patients in hospital to better their understanding of their disease.
“People get scared about the word ‘cancer’; they automatically think it means the worst and they will not recover. Through this film, we want to show them…you can get well.”
ARIL has been successful in sending many patients who cannot be treated in Romania to experienced hospitals and clinics abroad, mostly in Europe. Any patient can seek financial assistance or guidance from ARIL.
“We typically do not give the patient financial aid directly. We have set up a plan where people can make donations via PayPal towards a specific patient. Then we buy the drug for them or whatever they may need (therapies, accommodations, receiving treatment abroad). Donations can also be made towards wider projects.”
“We are an organisation of many survivors, so when patients meet with us they believe us and trust in us.”
Through their hospital visits, ARIL connects with patients personally to provide one-on-one counselling and comfort.
Since 2011, ARIL has organized periodic counselling and support meetings for patients within the hematology departments at the Fundeni Clinical Institute, Bucharest University Hospital, and Hospital Colentina.
To share their thoughts and ideas, the organisation made a ‘book of survivors’ wherein former patients share their experiences, and explain what helped them cope with emotional and physical side-effects. Additionally, ARIL partners with art-therapists and psychologists to provide patients with emotional support.
A shifting focus
Up until 2012, ARIL reported a heavy focus on sending both patients and healthcare professionals abroad to receive treatment or specialized training. Though these practices continue, ARIL’s recent efforts have focused on better equipping Romania to provide patients with the care they need.
ARIL has been successful in endowing various hospitals, clinics, and laboratories with crucial equipment for lymphoma/leukemia diagnosis and treatment. A recent project provided the hematology department at the Bucharest University Hospital with a new flow cytometer. This has increased the diagnostic capabilities of this facility, adding speed and precision to the cell analysis process. Another recent project provided 50 labs from the Hematology I, II, III and Transplantation departments of the Fundeni Clinical Institute in Bucharest with one infusomat (infusion pump) and one injectomat (syringe pump) per lab. Other equipment provided to healthcare facilities across Romania includes injectomats, morphine pumps, physical therapy devices, electronic door locks, and intercoms.
Despite an increasingly internal focus on Romania, Monica still believes it is important to learn from one another. “Though services are now more available in Romania, everyone can still improve their skills. It is good to have collaborations with doctors from all over the world to gain new perspectives.”
Goals for 2018
ARIL has recently turned its’ attention towards Human T-cell lymphotropic virus (HTLV), specifically HTLV-1. It is a proven etiologic agent of multiple disorders, and some individuals infected with HTLV-1 eventually develop an often rapidly fatal blood cancer (Adult T-cell leukemia/lymphoma).
ARIL has facilitated and supported the collaboration of HTLV specialists from five hospitals across Romania and France. These collaborations have produced promising new research in HTLV progression, diagnosis and treatment. In 2018, ARIL’s work in HTLV will focus on systematic patient tracking and database creation. “We would like to launch a project to verify how many patients actually have adult t-cell leukemia/lymphoma that began as HTLV-1.
”Many thanks to you, Monica, and the ARIL team for all the dedicated, practical support you provide to patients with lymphomas and leukemias within and outside of Romania.