Baiba's story
In an area of private houses in Pieriga, Latvian Radio meets with accountant Baiba Puriņa, who is ready to tell the story of her experience about illness and the search for affordable medicine.
"It was so unexpected and sudden," says Baiba, who was diagnosed with cancer three years ago. "[I was] a fairly young person, all the tests had been done because my side hurt, and then everything started sequentially – operations, biopsies. Yes, it was the third stage of ovarian cancer," reveals Baiba.
After an operation, she underwent chemotherapy.
"When the chemotherapy came to an end, the doctor said that innovative drugs for targeted therapy are still needed. And she said that there is only one big problem - in Latvia, these drugs are not reimbursed [by the state] and they cost 14,000 euros per month," says Baiba.
She remembers being shocked when she heard the price of the medicine.
"The doctor also added that the prices are disproportionately high in Latvia, but you can look in Lithuania, Estonia," she continues.
The doctor prescribed a drug called "Olaparib" or "Lynparza Olaparibium" to be taken for two years. This means that it would cost the family 327,000 euros in total.
"You look positively [after chemotherapy], but then you suddenly run into a cold wall of ice with the price of the new medicine. At that moment, I had a very deep fall," Baiba recalls.
She wrote an application to the National Health Service for individual compensation, but was refused.
"I just don't understand how it can be that there is a copy-paste answer that you already had everything, you had chemotherapy, what else do you need? It turns out that I'm not worth a single cent," says Baiba.
She is puzzled as to why some patients with one form of ovarian cancer, are compensated, but others, including her, with another mutation, are not.
She and her husband decided that they should do everything possible to be able to buy the medicine themselves.
"Savings and everything else. Let's earn, but we'll buy medicine, yes! You're already starting to think about selling the apartment, everything you own. Sell the cars. At that time, my child was only ten years old, and of course you want to to live and want the child to have a mother," explains Baiba.
After chemotherapy, she says, she had about three weeks to compare prices and start using the innovative drugs to make them effective. She started looking for information on the Internet about the price of "Olaparib" in other countries.
She called dozens of pharmacies in different countries. "I called Poland, Bulgaria, Romania. I researched Turkey and India on the Internet. She admits that she considered various options, including leaving Latvia.
After a persistent search, Baiba found the lowest price right next door – in Lithuania. At that time, a monthly dose of medicine there cost less than five thousand euros. This means that, when buying medicines in Lithuania for two years, 100,000 euros were needed, instead of 300,000 euros if the medicines were bought in Latvia.
"That's why we went to Lithuania every month." She found the cheapest price in a pharmacy in Kaunas. "It's three hours there, three hours back," says Baiba about driving to get medicine.
After a year, the family's savings began to run out.
"I started asking for advice. Not to ask for money, but for advice on what to do in this situation. I was lucky to call, meet the right people, that I got a private sponsor who sponsored me with that medicine for the one remaining year. And so it happens. I cried with happiness at that moment. It's incredible, yes," says Baiba.
Sondra's story
Sondra Zaļupe, a manager of art projects, was diagnosed with cancer seven years ago.
"Diagnosis melanoma. Third stage. I was prescribed medication, targeted therapy. Before taking the medication, I was already at the fourth stage, because there were metastases throughout the body," Sondra tells Latvian Radio.
At that time, the targeted therapy drugs she needed cost about 280,000 euros a year, and at that time the state did not reimburse them. She asked for the help of fellow human beings through the charity organization "Ziedot.lv".
Sondra needed to start taking the medicine as soon as possible: "I understod that I needed that first box tomorrow, not in two weeks."
She remembers that there were people who did not trust online donations and wanted to take the money to her home.
"I always refused it, but the thing is that a person dear to me - a relative - said that we decided that the money was yours. They brought it to me, and there was just enough so that I could buy the first box, and I could go to the pharmacy the next day, put down the envelope and the prescription, and say: please give me the first box!" says Sondra.
At that time, Sondra bought the medicine in Latvia. She did not have time to look for options where the medicine could be bought at a cheaper price.
"With melanoma or with any oncological disease, it's like a fire. Basically, you need to quickly, quickly put out those flames, and for me at that time the treating doctor also said: "Sondra, you can search outside of Latvia, but you might not make it," she remembered.
She decided that the rights and needs of melanoma patients should be spoken of more loudly and that targeted therapy drugs should be reimbursed by the state. She founded the association "A Step Ahead of Melanoma" and worked successuly to get the drug on the reimbursable drug list.
However, Sondra's cancer returned.
"During the healing process, one of the metastases in my adrenal gland started to grow. I had an adrenalectomy, and as a result, targeted therapy drugs no longer helped me, and I needed immunotherapy," explains Sondra.
She again found herself in a situation where she had to take medicine that was not covered by the state.
"The paradox was that immunotherapy drugs were cheaper than targeted therapy drugs, but at that time there was a specific point in the national reimbursable drug list, where it was said that patients who have already been treated previously are not entitled to these drugs with compensation," says Sondra.
Therefore, in order to buy medicine, she had no choice but to once again ask for help from fellow human beings.
"Then I looked in parallel, because I was in this oncology bubble for a while. And my colleagues immediately told me: "Hey, look, there is an option - the Tartu clinic, where there is a very responsive doctor. It's simply cheaper there, and you will be able to get more for that money," says Sondra.
The medicine she needs is called "Keytruda". The price of one dose in Estonia at that time was a little over 4,000 euros.
"I traveled by bus. I had a small child then, and there were times when we all traveled together. I went to the doctor, got my dose of medicine, and in the evening we drove home," remembers Sondra.
The saving was 1,000 euros per dose of medicine – effectively like buying five and getting a six dose free when compared to Latvian prices.
While she was undergoing treatment and was traveling to Tartu once a month for a dose of medicine, "Keytruda" was included in the state compensable medicine list for her diagnosis profile as well.
She also fought for the inclusion of immunotherapy in the list of state-reimbursed drugs, that is, so that patients who have been treated before can receive this drug.
She has harsh words about state aid: "Time is the most pressing thing. You are lost, desperate and alone, and it is one of the most terrible and frightening feelings that you are completely alone with your diagnosis."
Sondra also has her own thoughts on the formation of drug prices: "Basically, it's all a very pragmatic business. It's a business agreement between several parties - the medicine seller, or "pharma", the Ministry of Health and the National Health Service. They get together and sign a contract. In these it's not about the person or the patient in the negotiations. It's about numbers, about money, about introducing the product to the market."
The model must change
In Latvia, the model of drug pricing has not changed in the last 20 years. The current system of drug price formation is criticized by the State Audit Office. The Competition Council also found in the study that in Latvia in 40% of cases medicines are cheaper and in 60% more expensive than in other Baltic countries, and the pricing system needs to be changed.
Currently, there are several reasons for price differences with other Baltic countries - starting from the mark-up or profit share of wholesalers and pharmacies, which is currently a percentage and changes along with the price of medicines, and ends with the value added tax, which is higher in Latvia than in the other two Baltic countries.
This summer, the government supported a new drug price reform of the Ministry of Health . It will be implemented from next year.
In the new system, wholesalers will have one fixed markup – 50 cents per package for all compensable and prescription drugs. Pharmacies will also have a fixed markup.
"So that the payment is fixed - it is clear to everyone, the patient at the pharmacy understands what he is paying for," Inese Kaupere, director of the Pharmacy Department of the Ministry of Health, explains.
People will also have to pay a service fee at the pharmacy - 75 cents per prescription.
"So our prescriptions are even smaller than in Lithuania and Estonia, but we have introduced a service fee for serving a prescription. This is to strengthen pharmaceutical care and to make it more independent from wholesalers," explains Inese Kaupere.
The new arrangement will apply to all prescription drugs - both those that are reimbursed by the state and those that are not.
The amount of state compensation is also being increased from 50% to 75%.
"The biggest benefit will be for users of prescription drugs that are not included in the list of compensable drugs. For compensable drugs, the reduction could be 5-10%. Maybe even less. And for the cheapest drugs up to three euros, some drugs could even become more expensive," admits Inese Kaupere.
In general, the Ministry of Health estimates that people usually use several medications and the total price reduction for the medication basket will decrease by a fifth.
So for Baiba Puriņa, the non-reimbursable drug "Olaparib" will cost not 14,000 euros per month but 11,500 euros.
On the other hand, the drug "Keytruda", which was used by Sondra Zaļupe during the treatment phase, will become about three hundred euros cheaper than it is now.
This means that expensive drugs will be cheaper – but will remain very expensive or ordinary people.
In addition, in the case of Baiba, the medicine in one way or another in Latvia will still cost almost twice as much as in Lithuania, where it is included in the state reimbursed medicine system.
In Estonia, all medicines are subject to 9% VAT, in Lithuania prescription medicines are charged at 5%, and over-the-counter medicines are subject to 21% VAT. On the other hand, Latvia currently has 12% VAT on medicines, which is the highest in the Baltics.
Director of the Pharmaceutical Department of the Ministry of Health, Inese Kaupere, says that in January, in the informative report to the government, the Ministry of Health pointed out the possible reduction of VAT in order to lower the prices of medicines. The Ministry wanted to reduce the VAT level to 5% but the Ministry of Finance said that in the next four years it does not plan to reduce the VAT on medicines, because the state treasury cannot afford it.
Market forces
Currently, 80 drug wholesalers are licensed in Latvia. The ten largest wholesale companies account for almost 95% of the total turnover of medicines on the Latvian market, while the five largest account for 87%.
On the other hand, 284 companies operate in the pharmaceutical retail sector, and the five largest pharmacy chains account for 70% of the total pharmacy turnover. In total, there are more than 800 pharmacies in Latvia.
There are 30 licensed drug manufacturing or importing companies operating in Latvia. Domestic producers account for only 5% of the market.
The data published by the State Medicines Agency on the price dynamics of drug manufacturers in the last six months, compared to the corresponding time last year, allowed Latvian Radio to conclude that both this year and last year, the trend is unchanged - every month, drug manufacturers declare price increases for dozens of drugs, but reduce the price of a much smaller number of drugs.
For example, in August of this year, manufacturers declared a price increase for 68 medicines, but reduced only 20.
Another plan of the Ministry of Health is to achieve equal producer prices in the Baltic countries in the new model.
Director of the Pharmaceutical Department of the Ministry of Health, Inese Kaupere, states that "in practice, we see that what is on Estonian or Lithuanian websites, the prices that are available to us, often differ from what the manufacturer offers in Latvia".
Patients have to become pharma experts
Baiba Puriņa, the oncology patient, has her own explanation as to why lower drug prices can be achieved in Lithuania and Estonia, but not in Latvia.
"There was no political will, no ability. This situation is very beneficial for drug manufacturers. Such political cowardice," Baiba believes.
Baiba says that as a patient in Latvia she feels pushed aside.
"All healthcare should revolve and work in such a way that the patient is at the center. But sometimes it seems that the patient stands somewhere in the corner and just watches how the legislators, the medical institutions, the pharmaceutical business share something with each other. At that moment, you feel unnecessary in society - especially when you are in a hopeless situation, when you find out about your diagnosis, you are already sick of it, and you have absolutely no help from the outside," says Baiba Puriņa.
Sondra Zaļupe also says that patients in Latvia must have extraordinary willpower and patience.
"The system is complicated enough to drive the patient into complete stress and misunderstanding. The moment you become an oncology patient, you become an oncology and system researcher, and you have to understand where to look for what," says Sondra Zaļupe.
"To be honest, I was sad that I have to take the money earned by people here in Latvia and donated to me here in Latvia to another country. I thought it was sad and stupid. Yes, that patriotism is also one of the reasons why there are things that need to be talked about."
