Medical Rationale: Value - Health

- Among the values in health care, it is worth mentioning professionalism and evidence-based medicine, allowing to separate what is important from what is less important. Empathy is also key, to see the needs of specific individuals. After all, we deal with the problems of the population, but also small groups of patients," said Deputy Health Minister Maciej Miłkowski. According to him, working at the ministry is a service, because someone's health and life may depend on the decisions of officials. He added that the topic of health is not tied to a particular political option, because patients are everyone. - There is no disagreement in the basic goals, and this is how the health committee in the parliament and the senate works, he pointed out.

Values through the eyes of patients

Bogdan Gajewski, president of the Polish Association of Hemophilia Patients, stressed that the most important thing for these patients is the safety of treatment and access to medication. - If hemophilia treatment is not implemented in a short time, it means death for the patient. In Poland, the organizational solution ensures an adequate amount of drugs with the high variability of the disease. Thanks to the system of central tenders and distribution by blood donation stations, we can save patients' lives. We appeal to the Minister of Health to continue the solution that is in place next year, so that officials can already start tendering. Access to home treatment is also important, as many patients have difficulty moving. The home delivery system for a limited group is already in place, but we would like it to cover a larger group," he pointed out.

Hubert Godziątkowski, president of the Polish Society of Atopic Diseases, reminded that patients have access to modern treatment under the drug program. However, it is difficult to get this information to patients and medical staff. - Perhaps drug programs should turn into pharmacy reimbursement, he pointed out. In his opinion, the next step should be access to modern treatment for patients with the moderate form of the disease. Hubert Godziątkowski also pointed to the unmet needs of patients with chronic sinusitis with nasal polyps, who do not have access to effective biological treatment. - Little is said about this disease, and it is among the four disease entities that generate the most sick leave. And this is mainly because polyps are surgically removed, but, unfortunately, they grow back. There are patients who have had up to 17 surgeries. Modern treatment would make it possible to avoid these surgeries," he said.

Robert Jagodzinski, president of the Foundation for Active Rehabilitation "FAR", pointed out that rehabilitation in Poland is a story of unconnected events and it is difficult to talk about the process. Therefore, it would be good to appoint people who would coordinate these activities. He called for reimbursement of hydrophilic catheters also for patients over the age of 18. - If a child does not have good catheters, he or she will choose individual study instead of school, and an adult may give up work and not be socially active. Meanwhile, the most important decisions in life are made after the age of 18," he said.

Dorota Korycinska, president of the All-Poland Oncology Federation, stressed that the organization of treatment and waiting time for admission is important for patients. What also matters is the comfort of treatment and the courtesy of the staff. - The system is structured in such a way that we need guides. It should be friendlier so that the disease does not require rearranging the lives of the whole family," she pointed out.

Katarzyna Lisowska of the Per Humanus Foundation lamented that there is a drug program for Wilson's disease in Poland, and patients are not receiving treatment. - That's why we have set our sights on educating patients, doctors, and regulators of the system, she informed.

Stanislaw Maćkowiak, president of the Federation of Polish Patients, pointed out that more and more drugs for rare diseases are being reimbursed in Poland. - If this trend is maintained, in two years we will be at the level of the EU average, he informed. He added that newborn screening in Poland covers 32 disease entities. Italy is the leader with 48 - This is the cheapest form of diagnostics. We have the capacity and resources to expand newborn panels and Pompe disease should be included in this catalog," he pointed out.

Anna Sliwinska, president of the Polish Diabetes Association, recalled that until recently patients with type two diabetes heard that no new therapies would be made available to them because there are too many of them. That has changed, although some therapies and technologies still have reimbursement restrictions. She called for expanding access to continuous sugar measurement systems and insulin pumps.

Krystyna Wechmann, president of PKPO and the All-Poland Federation of Amazons, pointed out the need for better education on free HPV vaccination.

- We expect the criteria for including patients in causal drug therapy to be lowered," said Pawel Voitovich, president of the Foundation for Aid to Families and Patients with Cystic Fibrosis

Violetta Zajk, president of the "3 Let's Stay Together" Association, argued that the drug program has its drawbacks and patients expect pharmacy access to biologic drugs in subcutaneous form.

Attorney Piotr Mierzejewski of the Office of the Ombudsman drew attention to the safety of women during pregnancy. He reported that the Ombudsman has called for a change in the law so that it becomes possible to terminate a pregnancy if it is known that the fetus will die. - Women should not be required to be heroic, he appealed.
Jakub Gołąb of the Office of the MPC said that the Patient Ombudsman has issued a "Patient Navigator" that shows how to improve accessibility and navigate the health care system. He added that he has high hopes for the quality law being processed in the Parliament.

Clinicians' values

Prof. Radoslaw Mądry spoke about the hopes of the national oncology network, which should provide treatment at an appropriate level for all residents of Poland. In his opinion, there is not enough advertising for free HPV vaccination.

Prof. Krzysztof Giannopoulos, Vice-Rector for Doctoral School and Clinical Research at the Medical University of Lublin, stressed that today the preferred treatment for all patients with chronic lymphocytic leukemia is regimens based on targeted therapies rather than immunochemotherapy. - We are moving away from qualifying patients based on age and comorbidities. We identify patients at high genetic risk and forget about immunochemotherapy in these patients," he pointed out. Another direction is to extend such treatment to younger patients with good prognosis. Venetoclax therapy with obinutuzumab has been shown to almost double the incidence of second primary cancers. Prof. Krzysztof Giannopoulos also spoke about the advantages for patients of the National Comprehensive Cancer Network's (NCCN) recommended treatment regimen of venetoclax with a monoclonal antibody.

Prof. Tomasz Urasinski, consultant of the West Pomeranian region in pediatrics, talked about the well-functioning system of home delivery of medicine for children with hemophilia. - Individualized prophylaxis reduces the number of bleedings. After two years of the program, we can say that the joint condition of the treated children has not deteriorated. All the young patients are being treated at home, and this is working very well. It is worthwhile to incorporate this into adult care, especially for those with limited mobility," he recommended.

Prof. Adam Maciejczyk, chairman of the AOTMiT Transparency Board, spoke about the importance of good quality diagnostic tests.

Prof. Mariusz Bidzinski, national consultant in gynecologic oncology, emphasized the role of HPV vaccination. - The educational campaign is just getting started. These are programs for many years," he pointed out.

Prof. Zbigniew Zuber, chairman of the MRS Rare Disease Expert Council, noted that the unused therapeutic program for the treatment of Wilson's disease arouses surprise. - This means that something is not right here. This should be addressed by consensus by gastrointestinal, hepatologists and neurologists, he pointed out. He also reminded that newborn screening is one of the best diagnostic procedures. - In Pompe disease, it is the best solution. An example is healthy patients withphenylketonuria who previously died," he said. Prof. Zuber also spoke about the progress that has been made in the availability of new technical materials, such as freeze-dried catheters for children with urinary disorders. He stressed that it would now be worthwhile to think about expanding their availability to people over 18, a point supported by Prof. Margaret Lukowicz, national consultant in this field of medical rehabilitation. She also spoke about the role of medical rehabilitation. In turn, Prof. Piotr Galecki, national consultant in psychiatry, presented the most urgent challenges in this field.

Prof. Krzysztof Tomasiewicz, head of the Department of Infectious Diseases at UML, speaking about epidemiological threats, mentioned HCV infections, which poorer countries have already dealt with. Meanwhile, the wave of refugees from Ukraine has increased this threat in our country. - We are seeing a decline in vaccination rates in many diseases. In hepatitis B, it has fallen below 90%, and in Ukraine it is below 40%. There are recurring threats: measles and tuberculosis," he listed. He added that there is too little talk about implementing HPV vaccination. - We convince the convinced," he lamented.