How I got involved in the Cytostatics Network

The Challenge: 

The Question: 

Can you deliver care as part of a loose network?

The Problem: 

In 2012 Romania was missing over 20 essential cancer treatment drugs.

The Solution: 

People started to fly in medicine from abroad in informal ways.

Channels: 

I am Sabina Ulubeanu, a 36 years old mother who also like to describe herself as „ just a composer”.

In the autumn of 2009, at 30, I suddenly began to feel sick: very weak, short of breath and I became yellow. My daughter was 7, and my son was 2. I was still breastfeeding and thought I was just tired and stressed out.

What came next was an avalanche of investigations and meetings with doctors form many hospitals. After ruling out all sorts of terrible diseases and trying different treatments with no success, I went to Vienna where my condition was confirmed: Autoimmune Hemolytic Anemia. The newest drug for AIHA (Rituximab)  was still not approved in Romania for this rare disease, so I basically moved to Vienna where thet gave it to me, with no positive outcome, and finally I had my spleen removed and got well.

It happened in  March 2012.

In November 2012 I was again in Vienna for artistic reasons (and the usual check-up). This is when I read for the first time about the Network of Cytostatics. Everything was familiar to me: the oldest pharmacy in Vienna, the office above Mariahilferstr, but mostly, the struggle to regain one's health....

It was too soon for me to get involved, tha trauma was too recent.

 But in February 2013, a good friend, Simona Tache, shared on Facebook a status about needing someone going to Bucharest from Vienna.

 It clicked something inside me and I responded. 

What came next was overwhelming.

 Yes, I travelled home with medicine, calmly taking them through security and bringing them to Valeriu, the taxi driver that distributed them to the ones in need. More important was the fact that doing a simple thing, an easy gesture, meant helping someone's health and fighting a system that seemed not to care about the people. Everyone I talked to about the network felt the same: it is the least we can do!

 I truly believe people have the need to do good, to offer, to help each other.

The Network was a way of getting people together for a good purpose. I think it is the main reason it worked so well.

It responded the needs of others, but also our own need to give (time/ help/ encouragement).

My own personal gain, though, was tremendous. Not only you feel good helping others, but I became very good friends with Vlad Voiculescu, the initiator if the Network, supporting each other in many other so called impossible projects or just knowing we are there at a click or phone call away.

I got involved because I knew what it means to be helpless against a disease and I will remain involved for as long as I will live, because this Network might not be needed now for cancer drugs, but it created a gathering of great souls that will be for sure needed for many other aspects of our society that need deep and profound healing.

Comments

Great story

Alberto's picture

Wow, @Sabina U , what a story. Thanks for sharing. 

So, it starts with you seeing an update on Facebook. Did your friend mention that they needed someone to take medicines into Bucharest? Or just "somone who travels from Vienna"?

Then what? How did you in the Network coordinate? It looks like Valeriu was the one in charge of the final distribution; but how could a person in need of help access the Network? Was there a kind of coordinator (maybe Vlad)?

Sorry to ask so many questions, but this is just too interesting.

Hi Alberto, thank you for the comment

Sabina U's picture

Hi Alberto, thank you for your comment!
The post on FB didn't mention anything, just the travel question. But I saw it was a share from Vlad Voiculescu, so I understood in a second, even if the article that I read in november 2012 did not state his real name. But it was really not hard to connect the dots.
So in that evening we spoke for almost one hour on the phone :) , then we met and I took the medcines, that was the first encounter so to speak.
 Basically, Vlad coordonated the whole thing, he bought the medicines at first, then he found a lot people willing to help with buying, from different cities in Europe and not only.
Sometimes Valeriu would pick up people from the airport, sometimes just meet them in Bucharest and took the medicines to the ones in need.
I don't know how it was for other cities, but there the distances are smaller and I guess people sorted it out in a similar way.
Vlad also made a website: medicamente-lipsa.ro. People could acces it and find the missing drugs and the means to transport them.
 Not least, a movie was made after the investigation in Hotnews (the website where I read the story in 2012)
http://www.hbo.ro/movie/reteaua_-79271
You can see it here until september for free http://www.hbogo.ro/content/the-network-1053692950
 :)
I hope this helps!
 

In EU you can only transport your own medicine across borders

Noemi's picture

As far as I know the reason why you wouldn't see explicit calls for drug transports is because legally you're not allowed to transport but your own. So this is a grey area -people needed to say it's their own if asked at the airport or borders, although technically they couldn't have been arrested on such grounds.. after all they weren't commercializing anything. Even if the s*** hit the fan, no one could publicly dispute this way of getting hold of medicine which was supposed to be provided by the system and covered by the medical insurance! For several years before, Romanians would be procuring citostatics from nearby countries anyway on their own expenses. This is merely a more efficient and structured way of doing the same. 

Still, the network was semi-legal, meaning it operated under no clear incidence of laws. It's why I remember reading about Vlad in various pseudonyms when the story broke in the media. Similarly, in the movie his face never shows. 

From looking at the website, it seems the network worked based on collecting forms filled in by patients/family with requests for medicine - it's not clear though how much of the matchmaking was aided by the technology and how much was done manually, through Vlad and his network. Anyhow, most people who were part of it didn't know each other IRL - like Vlad and Valeriu, who were key nodes in the network!

@Sabina U, lovely to meet you virtually, and hopefully in person soon!

So much for evasive entrepreneurship!

Alberto's picture

Wow. Very, very interesting. Evasive, right @Lakomaa ? :-)

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