12/15/2013 12:42 am ET Updated Feb 12, 2014

Russian Leukemia Patients: Waiting for Donors

It's a bit awkward asking people to support our charity. Not that what we do is in any way controversial: we simply help cancer patients with treatment-related expenses and getting second opinions to let them make choices over their treatment direction. It's because our patients are primarily Russian, and by extension all sorts of stereotypes hover over them.

It's a fact that Russia now has more billionaires in the world than any nation other than the U.S. and China. It is also true that Russia has public healthcare. And Putin was recently named a most powerful person in the world by Forbes. So why would residents of a powerful and rich nation enjoying access to free healthcare need help?

Anyone who has read Chekhov, or Gogol or other Russian writers like satirist Saltykov-Shchedrin, is aware of the absurdities comprising living in Russia. Unchanged for hundreds of years, the daily encounters of bizarre and inexplicable may be amusing, stimulating and thought-provoking, particularly if you are a young and healthy adventure seeker. However, for sick or infirm the challenges of dealing with mind-numbing, soul-sucking bureaucracy and corrupt officials are often more than they can handle.

Consider this: Russian healthcare system budgets around 800,000 rubles ($25,000) for a stem cell transplant for a leukemia patient. Not only is this amount incredibly low by Western standards where a transplant from a donor would cost $150,000-200,000, but it is also much lower than the real costs, which our partner, Advita fund in Russia, estimates to be at least $100,000. Who covers the gap? The patients themselves, the charities, or no one -- and in that case a patient would be at a great risk of dying from post-transplant infections, transplant rejection, allergy to cheap generics that the insurance does cover, or a variety of other complications that require costly treatment.

An obvious pre-requisite for a transplant is availability of a matching stem cell donor. As Russia lacks national registry of donors, the majority of unrelated donors are found in foreign registries where the cost of search runs from $20,000 to $50,000. However, the Russian mandatory insurance system does not cover the expense. On what grounds? It is considered a "service" rather than "treatment," as if it was some optional, elective procedure, like plastic surgery or liposuction.

It is a long-standing tradition in Russia to play with semantics to bend and twist the law to advantage of those in power. Not exactly a people-oriented state, it consistently gives healthcare a low priority, which is clearly demonstrated by statistics on healthcare budget: already below average in Europe at 5.1 percent of GDP and $998 per capita (France, Italy, UK and Portugal spend twice as much as percentage of GDP and 3 times as much per capita), further cuts are expected in the coming years to benefit defense budget.

We can only assume that Russian government will continue to avoid paying for bone marrow donor searches in foreign registries in the future. At the same time, there is little action on plans to create a national registry. Several small regional registries fueled primarily by enthusiasm popped up in the last few years, but their combined number of donors is still insignificant and is unlikely to grow to a sufficient level without strong financial backing. Spreading awareness, recruitment of donors and their testing, and setting up a functional registry will require a large investment with substantial ongoing expenses.

Meanwhile, the patients cannot wait. There is typically a very short window of time in which the conditions for transplant are favorable. Once a relapse occurs, the chances of cure dwindle. Our project helps the neediest patients afford donor searches and improve their outcome.
Our hope is that by helping cancer patients we also benefit Russian society in general -- by building an alternative support system and helping people come together to solve problems and become active participants in their community.