Lithuania: Šarūnas Narbutas

Health experience related to: chronic myeloid leukaemia

Modernizing pharmaceutical policies to make high-cost medicines and technologies affordable reduces health disparities and leads to improved outcomes for people with chronic or costly-to-treat conditions.

In 2006 I was diagnosed with chronic myeloid leukaemia – a type of blood cancer. At that time I was 18 years old and about to graduate from high school. When I heard my diagnosis, the doctor said there were 2 treatment alternatives: chemotherapy or bone marrow transplantation. My sister had Googled the day before to see if other treatment options existed and found that there was a targeted medicine that was effective in treating my particular disease. But my doctor said, "Well, that's not on the table, because our country is underfinanced and we cannot afford it."

In 2007, 16.5% of patients were receiving the targeted treatment, so only about 1 in 6 who would have benefited from it was getting it. The treating haematologist was facing an ethical dilemma to decide which patient should receive the modern treatment and which should undergo chemotherapy. When no matching donors were found for a bone marrow transplantation, we thought I would be going for chemotherapy. Then my doctor made a special recommendation due to my young age, and the alternative treatment was granted to me free of charge.

I was one of the lucky few who was getting this treatment while many others were not. I was going to the hospital every month to do a blood test and was witnessing the deteriorating health of other patients diagnosed around the same time as me. I thought it's not ethical for doctors to be forced to choose who should get modern treatment and who should receive outdated therapies. So I was getting a targeted treatment and was responding very well to it, but I was feeling bad about receiving this treatment while other patients were not – and were dying. I understood that it was a purely economic problem, because the targeted treatment was expensive.

When I did the math, it showed that one could take these medicines for 5 years, and only then would they equal the cost of the bone marrow transplantation. The Government was already reimbursing any needed transplantation but was selective about reimbursing patients for this targeted treatment.

In 2007 I created a blog to share my story – that I was getting reimbursed for an expensive experimental treatment, but that at the same time many others were not. I invited people to sign a petition asking the Government to reimburse all patients who need this treatment.

I mobilized my friends and some local politicians and journalists to help me spread this message. To my surprise the message went viral. In the first month I collected 15 000 signatures and it caught the attention of the mass media. In 3 months I had collected 80 000 signatures and hosted a press conference in the Lithuanian Parliament, saying that this call to action was supported by society – their constituents. In the next 2 months, it went from 80 000 to 180 000 signatures, which equalled 6% of the total Lithuanian population in 2007.

In the 2008 budget, the Government doubled the funding and reimbursed 50% of patients for this innovative therapy. I got a letter from the health minister pledging that his cabinet would work to get it reimbursed for up to 100% of patients. They reached that goal in 4 years. From 2007 to 2011, coverage was increasing and eventually all patients were covered for first-line, second-line and third-line therapies.

My experience, however unusual, shows that it is possible for 1 person to bring change in the society and in the political process, even regarding economic decisions that influence the ability of providers to practice people-centred health care.