Translated material
Inopalities
Due to the coronavirus epidemic, thousands of people with chronic and rare diseases were actually without help
For many of them, a pause in treatment can be fatal. At risk - people with orphan, rheumatological diseases, oncology, diabetes. Regular supporting treatment, on which not only their condition depends, but also life, in the current conditions for many it becomes inaccessible.
Denis Belyakov
Executive Director of the Union of Patients and Patient Organizations for rare diseases
- The situation is actually critical. Now more and more clinics will be reproduced for infectious hospitals, but they do not think about orphan patients. Our leading children's center for orphan pathology, the Scientific Center for Children's Health, has already closed under the infectious hospital. Accordingly, all planned hospitalizations, planned operations, and patients who urgently need help in the form of doses, in the form of surgical operations, stopped.
- And what are these diseases?
- Well, these are cystinoses, and Aciduria, a group of rare diseases that traditionally have observed the scientific center for children's health. Now we do not know where to direct these patients, because they went there only there.
The other day, for example, we tried to hospitalize two children with Aciduria, brother and sister, in St. Petersburg. They could not take them to the Almazov Center, where they were traditionally observed. And we spent three days to solve the problem. That is, on Sunday they felt ill, on Tuesday they were hospitalized by evening, while they still sat in the reception department for three hours.
- And what are the symptoms of this disease?
-These are certain acid-base disorders in the child’s body, metabolic acidosis can suddenly occur, which can lead to death.
Parents called an ambulance three times, ”and the children could not hospitalize. They did not take the infectious one: "We do not know what Aciduria is and what to do with such a child." In other clinics, they said: "We cannot take them, because they have a dive for measles." As a result, in three days we raised everyone. Moreover, we found medicines in Moscow and took the clinic in the morning. On Wednesday, in the evening, dad called me, says: "Now everything is fine."
We clearly understand that the opening of infectious hospitals is an extremely important story now. But again, you need to somehow think about where to direct such children and where-emergency cases.
Two weeks ago, we informed Putin and Murashko in writing that the scientific center for children's health was closed to an infectious hospital. There is still no answer.
Given that the quarantine will not be delayed for two weeks that remained until the end of April, but, most likely, for a certain number of months, these solutions need to be developed.
- Do you only deal with children or adults too?
- And adults, of course. Our organization is engaged in rare diseases,
We have thousands of patients, but now the situation has sharply touched children.
- And now, it turns out, you decide every case manually?
- Well, yes. For example, now we are and I am engaged in the continuation of infusion for a child with Gaucher's disease. This child had not yet managed to enter into a state program, but he collected money for medicines by philanthropists. And it is urgent to organize these infusions to him in a state medical institution. And it will close on infectious quarantine in a week or two. And how to continue this treatment, we do not know.
- Take this specific child with Gaucher's syndrome. If now you do not start dripping the necessary medicines, what will happen?
- This child has no therapy for two months, because we have been looking for humanitarian help. While they were looking for, he got worse: his stomach, spleen increased, she can burst at any moment. You see, if these patients regularly receive medicines according to the protocol, they are quite compensated and live in ordinary life. Long breaks in treatment can lead to their death.
- In emergency situations with rare diseases, specialized centers are always needed, or, say, could these patients accept ordinary hospitals?
- Each such disease is quite unique. There are few specialists, there are no clinical recommendations, and even foreign recommendations are changing rapidly. Therefore, patients with such rare diseases are usually conducted in federal centers, certain algorithms have developed there. And now this professor has been sent on vacation, because these are mostly age -related people. They advise us from home by phone.
Some doctors of those who are younger and have this competence now works in an infectious hospital. I think you can connect private clinics,
But the question arises: who will pay for these patients?
Most of them cannot pay for themselves. There used to be donations. And now they are sharply reduced. We are really in a critical situation.
- What medical institutions with whom you previously interacted have stopped taking rare patients?
- This is the scientific center for children's health, it is reproduced under the infectious disease. As the employees tell me: "We are partially re -profiled." But all planned hospitalizations are completed there.
This is a scientific center for hematology, it was not redesigned, but a large number of specialized patients from all over the city are already flowing there, and its possibilities with hospitalization are also limited.
National Center for Children's Hematology, Oncology and Immunology. Dima Rogachev is still taking a reception, but hospitalization there is extremely careful, because they are afraid to hospitalize - God forbid they will bring the child with coronavirus.
We assumed that quarantine would last first a week, then three more, but now I understand that this will not be limited to the end of April, it will be necessary, most likely, another month, or even two. Therefore, now the routing system is extremely necessary to build promptly, we must not forget about children and adults with rare diseases. Their lives are no less valuable.
Yuri Zhulev
co -chairman of the Council for the Protection of Patient Rights under the Ministry of Health of the Russian Federation
- What is happening now, according to your information, with patients suffering from serious chronic diseases?
- The first, according to our information, in the risk zone were people with rheumatological diseases, Orphanniki, there are reports of problems with timely chemotherapy in cancer patients. We are going to send a second letter to the Ministry of Health with more detailed information and with a request to pay attention to this. We want to receive intelligible clarifications of the Ministry of Health on how now patients with chronic diseases should continue planned therapy because
For them, this is not an ordinary planned, but planned rescuing therapy. It cannot be moved to better times.
-On your site you write that on the hotline you organized support for patients from the regions and trying to somehow orient them in manual mode. It turns out?
- Sometimes yes, sometimes not. For example, a patient calls who was refused the federal center in continuation of chemotherapy due to reprofiling. We explain his further steps to the patient, knowing that the drug is in his region, we say that we must purposefully go to the doctor to continue therapy. And there are situations when there is nowhere to send the patient, because they re -profiled the only institution that provided such assistance.
-Tell me, for what diseases can delay for two to three weeks be threatening life?
-Firstly, according to those that are already mentioned in regulatory documents. This is oncology, cardiovascular, diabetes and, of course, hemodialysis. Complaints come from rheumatological patients, complaints go on orphan diseases, because some of the patients were purchased by compulsory medical insurance and were administered in daytime or round -the -clock hospitals. And when the hospital says: “The order has changed, we won’t take you anymore” - this is equal to the cessation of a viable medicinal therapy.