Creating a peer support network and sharing resources has saved lives and created better outcomes for patients in neighbouring Bosnia and Herzegovina (BiH). Mijelom CRO, the Multiple Myeloma Patient Support Association in Croatia has been donating resources and working with patient association in BiH to get necessary drugs for treatment for multiple myeloma and other rare blood cancers for the last four years. However, what we have been advocating for – drug access like we have in Croatia, at the point of service in hospitals, is still to come in BiH. 

Multiple myeloma (MM) is a rare haematological disease, a blood cancer of plasma cells that creates antibodies, immunoglobulins that in a healthy person fights infection. Preventing infections is an everyday reality for MM patients and with coronavirus it has become a nightmare – balancing the need for self-isolation and accessing treatment. 

The Croatian Government has formed the Civil Protection Services (Crisis Headquarters - HQ), which has issued clear guidance regarding coronavirus for the general population. These are updated regularly, emphasizing the risk for the elderly and people with comorbidities. No specific guidance for patients with particular diseases have been issued. There was no cooperation with patients’ organisations either. Therefore, Mijelom CRO has translated the World Health Organization guidelines immediately and Croatian healthcare providers associations have issued guidelines for patients with haematological malignancy and other specific diseases in April. 

The efforts by the crisis HQ to stop the spread of misinformation in regard to COVID-19 was effective. It is done by producing written materials, TV campaigns, online public campaigns on social distancing, isolation of suspected cases and what-to-do protocols, preventive measures with reasons explained. 

Despite limited testing, low reported deaths from COVID-19 indicate that the epidemic has been successfully contained, to just over 2000 cases. Whilst effective in controlling the number of coronavirus infections and deaths, it is uncertain what impact all these measures have had on life expectancy of haematological patients. Emotional and treatment difficulties experienced cannot be quantified, only felt. 

The COVID-19 pandemic has highlighted the lack of resources and capacity in the healthcare system in Croatia. A day after the lockdown started, Zagreb was hit by a strong earthquake which destroyed some hospital wards. One of the main transplant hospitals was repurposed into a COVID-19 respiratory centre. Already stretched hospital facilities and resources became even more pressured. This has meant that some patients experienced uncertainty and hardship whilst locating another haematologist or centre. There was also some confusion within COVID-19 and non-COVID-19 protocols for access to haematology centres. 

At the same time, the situation for patients in neighbouring Bosnia and Herzegovina has become critical. The country is fragmented into administrative units, cantons, which create access barriers even in normal situations. The usual routes to purchasing medication in Croatia have been severed. The cost of generic medication is much higher in BiH then in Croatia. The lockdown rules have meant that no travel outside of towns was allowed and the border crossings into Croatia, the first neighbouring European Union country, were closed. Anyone arriving was subject to a 14 days quarantine. Neither the BiH Government nor hospital administrations in BiH have done anything to help. 

Our two patients’ associations are left to cope, the needs are great and our resources are very limited. At the end of March, our organisations have raised awareness in the media about the plight for haematological patients. We pointed to the fact that 15-year-old drugs, such as thalidomide, bortezomibe and lenalidomide have not been made available to doctors and patients in BiH. All are on the list of essential MM drugs WHO has adopted in 2019. During our joint media campaign a promise has been made by the Minister of Health: the access to these drugs will be resolved. Nothing has happened as yet and only using a network of friends, lorry drives, people with goodwill, medicines for MM patients are getting across boarder to BiH. 

Published on 14 May 2020.