Saving the lives of cancer patients in Poland is a fiction. Ewa Lotocka-Murawa, mother of Agnieszka Murawa-Klaczyńska, suffering from breast cancer, accompanied her daughter in the fight against the disease. And the protracted struggle for access to emergency therapy, because the National Health Fund did not refund the drug she needed. Unfortunately, the daughter died. Patients in Poland usually have only theoretical access to drugs of last resort. In practice, doctors are afraid to initiate procedures, and bureaucracy extends the entire process. On February 11, we celebrate the World Day of the Sick. For those with cancer, few get the best drugs, many get them too late and die.
- It took a month for the doctor to agree to fill out a drug application to the ministry. The patient did not have time to benefit, and died two weeks later
- Alivia Oncology Foundation, supporting cancer patients, warns: the act on Emergency Access to Drug Technologies is a fiction, patients die prematurely
Agnieszka Murawa-Klaczyńska from Grudziądz has been treating breast cancer for over nine years. She underwent devastating chemotherapy, radiotherapy, breast amputation, then for several years there was peace and relapse with metastases to the brain and lungs. She underwent several therapies and operations in many centers in the country – each was searched for a different problem, with metastases to the brain, e.g. doctors coped with the modern Gamma-Knife technology. The last problem to be solved was the relentless lung cancer. Only modern targeted drugs could stop him. Unfortunately, not reimbursed and very expensive. The first doses were obtained thanks to the help of the Alivia Foundation, the next doses were missing – well, what? Because not only money.
Access to non-reimbursed and expensive treatments was to be provided by the Act on Emergency Access to Drug Technologies, which has been in force since July 2017. According to it, a center where a patient is treated may apply to the Ministry of Health for reimbursement of treatment that meets individual needs. Condition: it is necessary to save the patient’s life or health, and all publicly funded medical technologies that can be used in this indication have been exhausted. By May 8 this year, the Ministry agreed to cover the cost of the drug under this procedure for 126 patients, out of the 430 who applied. However, the NHF has so far reimbursed the therapy for 38 patients.
The data was collected by the Alivia Foundation, which supports cancer patients. And he alarms: – The drug is admitted to almost every third patient, then every third patient who has been given a positive consent receives it.
As a result, 8,5 percent of the drug gets drugs. from those who applied for them to the Ministry of Health. According to the Foundation, the RDTL procedure is sham today. Why?
First of all, it is about the method of reimbursement and the course of the procedure. The application to the Ministry of Health is not submitted by the patient, but on his behalf by the hospital where the patient is being treated. The Ministry of Health gives its consent, but reimburses the National Health Fund. Finally, the reimbursement does not come from any additional budget – the cost of treating the patient under this procedure is covered by the National Health Fund from the money transferred to hospitals for the provision of hospital care services.
– It is not profitable for hospitals to apply for such treatment, because they lose money – says Wojciech Wiśniewski, spokesman for Alivia.
Let us remind you that these are really expensive drugs: in this year’s pool from about PLN 470 to over PLN 1,5 million net for a three-month treatment. The treatment by Agnieszka Murawa-Klaczyńska was to cost PLN 25. PLN per month.
The procedure does not yet work for another reason – the reluctance of oncologists and insufficient information to patients. Let’s get back to Agnieszka’s case. Because her application was neither accepted nor rejected by the Ministry in the RDTL procedure. Why?
From the very beginning, the history of her illness was full of dramatic events of neglect. She detected the lump in her breast by herself and immediately ran to the doctor. However, this calmed her down – he said it was a matter of lactation. She went to another doctor privately – the diagnosis was the same. However, the lump did not shrink, she visited a few more doctors, but it was only after many months that she forced a diagnosis. This one showed advanced breast cancer, with the lymph nodes involved.
– The daughter did not neglect anything, on the contrary, she insisted on diagnostics hysterically – says Agnieszka’s mother, Ewa Lotock-Murawa. He has an abundant briefcase with his daughter’s medical records, a file of addresses to the practices of oncologists where they paid for consultations. Ewa: – So many doctors, and we searched the internet on our own to find the right therapy.
The first was herceptin – today it is reimbursed in Poland, but Agnieszka paved the way. She wouldn’t have gotten the drug if it hadn’t been for the fundraising effort by the Alivia Foundation. the treatment gave her a few more months of life. Eventually, however, that also stopped working. Agnieszka searched online forums for a drug called Kadcyla, which is used in disseminated stage of breast cancer. Not reimbursed in Poland, but available in accordance with the Act on Emergency Access to Drug Technologies. Theoretically, because in practice it was just like Ewa says.
Agnieszka asked her oncologist to submit an application for reimbursement of the drug to the Ministry of Health for over a month. She found the print template on the Internet and provided it to the doctor. One visit – blank print, second and third – the same. Each time a week passed and it was necessary to cover more than 80 km to the hospital in Bydgoszcz. She asks the doctor why? He did not have time. So she goes on a private visit to his office. Not for a test or consultation, but so that the doctor has time to fill in the form. There is still no time and he comes up with the idea that this request should be decided by the oncology committee at the hospital.
Even then, Agnieszka took the first doses of the drug, again thanks to the collection from Alivia’s support.
A month passed, Agnieszka stood before the commission. However, the chairman did not know anything about her case – the doctor did not provide neither the application nor the documentation.
Ewa: – My daughter cried that this was the end, that she was dying. I burst into the doctor’s office and announced that I would not leave until the matter was finally settled.
She had achieved so much that the doctor promised to complete the application. But then silence again.
– When, after a few days, I asked what about the treatment, the doctor replied that the application had come back from the Ministry and had to correct it, now he will re-submit it. “Don’t worry,” he said.
Ewa does not know how the procedure continued. Because two days after the last contact with the oncologist, Agnieszka passed away.
Ewa Lotocka-Murawa: – This is some kind of insensitivity, this drug could have saved my daughter’s life. The patient himself has to find drugs and invent therapies, and that is not enough! You still have to beg the doctor to write a banal conclusion.
We also asked the oncology center where Agnieszka was treated for a comment. We are waiting for answer.
Also, according to the Alivia Foundation, Agnieszka’s case is not unique.
– It is a scandal, this act on emergency access to drug technologies turned out to be a fiction – says Wiśniewski. – Patients do not know about the possibility of reimbursement, rarely are oncologists from the first line of contact with patients. The others do not inform their patients because of the fear of being entitled to claims or because of possible financial losses for the hospital. Wiśniewski cites the Patient Rights Act. “A patient has the right to healthcare services that meet the requirements of current medical knowledge” (Act on Patients’ Rights Art. 6 (1)). Alivia has verified that more than half of modern oncology drugs recommended by the International Scientific Society are unavailable in Poland.
– The RDTL program was to be a prosthesis adopted for a transitional period, before Poland adjusts and keeps up with the scientific achievements that are available just beyond our borders. Meanwhile, our patients die prematurely because they are not treated with the most modern drugs – says Wiśniewski.
The Alivia Foundation sent a petition to the Ministry of Health under the slogan: Let’s save Poles! Activists
“We call on the government to immediately change the regulations and to respect the right of patients to be treated in accordance with current medical knowledge,” Alivia experts wrote in it.
«In Poland, the effectiveness of colorectal cancer treatment is lower than in Turkey. Mortality from neoplastic diseases is higher than in Our Country. Polish oncology is losing its distance not only from rich countries, but also those at a similar level of development. The real price is paid by the thousands of patients who would have had the chance to live longer living in another country. In Poland, deprived of appropriate treatment – they die prematurely ».
About 100 die in Poland of cancer. people a year.