Hemophilia patients do not want the National Program to be transferred to the National Health Fund

For several months, work has been underway on the next edition of the National Program for the Treatment of Patients with Hemophilia. Why is continuing this program so important for people with hemophilia?

Bogdan Gajewski, Polish Association of Patients with Hemophilia: The program is our foundation: it provides access to bleeding management for adults and children with hemophilia, as well as emergency care. Thanks to the Program, patients can feel safe because medicines (blood clotting factors) are available to them in case of emergency in every hospital. Thanks to this, there is no problem with any specialized procedure for a hemophilia patient, even in a hospital that is not the executor of the program. If necessary, blood clotting factors and blood from the Regional Center for Blood Donation and Treatment can be used in a medical facility. Last year Minister Maciej Milkowski told me about a very difficult operation on a patient with hemophilia at the National Institute of Cardiology in Anin; this became possible due to the fact that the Institute of Cardiology had at its disposal a sufficient number of blood coagulation factors for a patient with hemophilia. The patient is alive and well. This operation probably would not have been possible if it were not for the decisions taken in the National Program.

Just as you cannot predict how many units of blood will be needed for an operation, you cannot predict how many clotting factors will be needed for a hemophilia patient to recover and recover. Through the National Program, the hospital can order as many units of blood clotting factor as needed to save the life and health of a patient suffering from hemorrhagic diathesis.

Are hemophilia patients satisfied with the pace of work on the next edition of the program?

We appreciate them well, there is progress; At present, an important issue has arisen about expanding the supply of drugs to patients with severe hemophilia at home. I am very pleased, because if this decision is made, in the coming years, home delivery of medicines will cover 1200 patients with severe hemophilia and other bleeding disorders, that is, all patients who will need it.

Home delivery is very important for patients; many of them have disorders of the musculoskeletal system. It is very difficult for them to bring home so many drugs - and the drugs take up space in a small pantry for three months. Patients often tried to save money by using fewer drugs so that those brought from the center would last longer. And yet, not using the right amount of medication causes bleeding and its consequences in the form of joint damage or even life-threatening. The new program will include an extension of home delivery, for which we are very grateful to the Ministry of Health. Home delivery is already a standard in many European countries, I am very pleased that we are implementing such solutions in Poland.

For many years, the association has protested against the transfer of the National Program from the Ministry of Health to the National Health Fund. Where do these concerns come from and is this issue still under consideration?

We have received information, including from people with HIV infection, whose therapeutic program is also funded by the Ministry of Health, that the Ministry plans to transfer funding for both programs to the National Health Fund.

He did not consult with us or with the expert community. We do not know the details of this decision; however, we know that our safety depends on the continuity of treatment. Currently, the National Hemophilia Treatment Program is funded by the Ministry of Health, a separate budget is allocated for it, we are confident in certain funding. We are concerned that this may change once funding is transferred to the National Health Fund. We are entering a period of financial difficulties due to the political situation and the ongoing war in Ukraine. There will be no more money, we are very concerned that the transfer of the Program to the National Health Fund, in case of problems with funding, may simply mean a threat to the health and life of our small group of patients, due to the termination of treatment. For a person with hemophilia, lack of access to clotting factors poses a risk of massive bleeding that can lead to death or disability. We hope that these rumors about the funding of the program by the National Health Fund will not be confirmed.

For several years, work has been underway to create a register of patients with hemophilia and related bleeding disorders. Are the effects already visible?

The registry is necessary to organize treatment and provide the best care for patients; that specialists have information about the progress of treatment, and that the Ministry of Health effectively manages the system, having knowledge of the use of medicines, planning a national procurement system that takes into account all the needs of patients.

From the point of view of the management of the National Programme, the register is of great importance. Work on its creation was carried out for almost 4 years, there were many meetings with employees of the Center for e-health. Recently, at a meeting at the National Blood Center, we learned that work was underway, and when I asked when it would be completed and when we would have a tool for the Ministry, specialists and patients, the date was given: 2024. For us, this is very sad; once again, the date of the creation of the registry is being postponed, since a few weeks earlier, the director of the eHealth Center wrote in an official letter that the registry would be ready in 2023. We feel that we are being ignored, and the issue is very important. The treatment of hemophilia is costly and requires sound management, so a functional registry is needed. This is important from the payer’s point of view, but also from the patients’ point of view. In our opinion, it is necessary in the shortest possible time to create a module that will be widely used by physicians treating patients with hemophilia, containing medical records with data on the treatment and management of patients.

We don’t know why the work took so long. It is not clear that despite such a small patient population, no module has yet been put into service. Any rationalization of the treatment system and any control over drug use is in the interests of the state.

In recent years, the treatment of patients with hemophilia has improved significantly, especially children under 18 years of age are treated very well and are treated prophylactically with modern blood coagulation factors. And what does he look like after 18 years? Is it still possible to provide preventive treatment, personalized and adapted to each patient, that will protect him from the complications of hemophilia, such as joint damage?

Unfortunately, we have heard reports that young people with hemophilia are having difficulty entering a center for treatment after the age of 18. In some centers they are scheduled for dates up to two years! In severe hemophilia, the patient should not wait to continue treatment, as this can be dangerous to life and health. We would like young people with hemophilia to be well cared for, as they were before the age of 18: home delivery so that they can continue to study and work. You must create the right conditions for them and provide them with treatment tailored to their needs. Thanks to this, a person with hemophilia will be able to continue their education, work; in the future, he will not depend on state social assistance, will not retire and will not be condemned to disability.

As for treatment, it has indeed improved significantly in recent years. However, patients often struggle with numerous difficulties. Many treatment centers for adults with hemophilia do not work well or exist only on paper. For patients, this sometimes means visiting a health facility more than 150 km away. One young man with hemophilia recently described in a letter to the association how he regularly had to ask for a day off to go to the center and then another one to go get his medication. These actions are repeated cyclically every few to several weeks. This is a difficult situation, because what employer will tolerate this for a long time? I’d like to avoid creating unnecessary complications. We would like the centers to work effectively, and wherever possible, telemedicine solutions were used to support patients, as is done in many Western countries. We would very much like the treatment of hemophilia patients in Poland to be organized in the same way as in other countries of the European Union.