"The first list of patients has been formed": the head of the "Circle of Kindness" on the work of the fund, the treatment of SMA and the actions of officials in the regions

The Circle of Kindness Fund to Support Children with Severe Life-Threatening and Chronic Diseases was established on January 6, 2021.

He will use the funds received from the increase in personal income tax on incomes over 5 million rubles a year.

The Russian government has already allocated the first 10 billion rubles for the purchase of medicines and technical means of rehabilitation, but in total for the current year, the fund should receive about 60 billion rubles.

Archpriest Alexander Tkachenko, Chairman of the Board of the Krug Krug, founder of the first children's hospice, told RT about how and to whom the fund would help with these funds.

"Lists are expanding"

- Is there a list of patients for whom Krug will buy medicines?

- The first list of patients for whom drugs will be purchased has been formed.

It included over 450 children with serious illnesses from 48 regions.

These are children of different ages with spinal muscular atrophy.

It is important to clarify that this list is not final, it is constantly expanding.

For example, quite recently an emergency expert council was held, which considered the issue of including four more children in the list of beneficiaries.

- How is the patient list compiled?

- It all starts with creating a list of diseases with which the foundation works.

The main specialists of the Ministry of Health prepare materials for each disease for consideration by an expert council: statistics, medical data, the availability of treatment, and so on.

Further, the expert council discusses the inclusion of a particular disease in the sphere of responsibility of the "Circle of Kindness", and after the approval of the decision, it is transferred to the board of trustees.

After the board of trustees confirms the decision of the experts, the foundation can already form lists of children with this disease for treatment.

Now we are working on applications for children, which were previously collected by the Ministry of Health.

This work has been going on since last year and has allowed us to quickly prepare patient lists for review by the expert council.

- Who exactly will carry out the purchase?

- Now, until the fund's operating procedure has been adopted and the procurement procedure has not been approved, all supplies will go through the state institution of the Ministry of Health, which organizes supplies.

This is necessary in order not to keep waiting for children who do not have time to wait for the medicine.

Then, when the relevant government regulations are adopted, we will work according to the approved rules.

- How can parents find out that their children have become wards of the foundation?

- It would be more correct to address this question to the regions.

The Krug of Kindness Foundation's own information system is now being created, and given the volume of medical data and personal information we work with, this requires a very thoughtful approach and careful development.

It is assumed that the information system of the fund will be connected with all systems of the Ministry of Health, and the function of informing parents will be automatic.

"A difficult ethical question"

- Your list includes children of different ages.

Why, if we talk about priority purchases for patients with SMA, is it planned to purchase Spinraza, including for very little ones, if Zolgensma is suitable for them by age, which is enough to take once?

- I am not ready to comment on the recommendations of doctors about what is best for this or that child, since I believe that only experts in the field of medicine can give an assessment here.

Zolgensma, like Spinraza, was included in the list of medicines that the foundation has the right to supply to children.

The best specialists in severe, chronic and rare diseases make decisions in the Krug Krug Foundation, and I trust their opinion.

- Are there, in addition to SMA, other diseases for which it was decided to purchase drugs in the first place?

- The first disease that the expert council considered was spinal muscular atrophy.

Then Pompe disease was confirmed.

Several more rare diseases are now being prepared for consideration.

The expert council meets weekly, and diseases are considered as the rationale and materials for discussion are ready.

I hope that a complete list of all diseases that the foundation can work with will be formed within the next month or two.

We ourselves are very much interested in the quick adoption of the list of diseases.

This will allow us to clearly plan the fund's work, assess the volume of purchases and distribute funding.

- Will the list of diseases for which the foundation provides assistance be expanded?

And what criteria are used in compiling this list?

- The list of diseases is constantly expanding.

I'm not ready to discuss the upper limit of how many diseases will be in this list as a result - this is a question rather for the expert advice.

The only criterion for selecting a disease is the preparedness of the issue for discussion at the expert council.

The process of including a specific disease on the list is a very serious discussion that requires not only preparing a report, but also collecting evidence, getting to know the research, answering questions and sometimes defending one's point of view.

Appeals from patient organizations, of course, are taken into account, but should not serve as the only justification for including a disease in the list.

After all, this is a very difficult ethical issue.

Which is more correct: first of all, to support families whose child's illness is so rare that most doctors have not even heard its name, or to support the request of the patient community, covering thousands of children in the country?

We try as much as possible to exclude subjectivity when making a decision, therefore, we focus not on quantitative indicators, but on the collegial opinion of experts.

- You decided not to post publicly available questionnaires with photos of children on the foundation's website.

Why?

After all, many parents, organizing a collection for treatment, have already done so in social networks.

- Because there is legislation on personal data.

Because a family with a seriously ill child is already in a difficult situation, and we see no sense in additionally laying out its story for the public to see.

Many arguments can be given, but in fact everything is very simple: imagine that tomorrow a photograph of not someone else's suffering child, but of your own, will be scattered all over the Internet.

With the details of his diagnosis, treatment, with a description of your and his suffering ... Will you be pleased?

The parents of our patients are no different from you or me.

“I don’t know how else to get through to officials”

- Some parents have already raised a certain amount for treatment in private.

Is it possible to develop a co-financing system to speed up the procurement of drugs?

- Our first task is to create a clear and honest mechanism for the formation of lists of children, procurement, drug delivery and evaluation of its effectiveness.

Therefore, at the first stage, the foundation is unlikely to develop a scheme for combining budget funds and charitable donations.

We would now work out a scheme of actions for each application of the child, financing of supplies and reporting for the huge budget resources that are allocated for this ...

And if a public organization has already collected money for a child included in the lists of the "Circle of Kindness", then it can be directed to other needs of this child.

Or to help another family.

Those who have collected are probably aware of everyone's needs.

- Last year it was mentioned that donations from individuals or organizations can also be sent to the fund, not targeted fees, but on their initiative.

What about this opportunity now that the "Circle of Good" has started working?

- We, of course, do not exclude such a possibility, but we will return to the topic of donations from individuals or corporate benefactors not earlier than after six months of work, or even after a year.

Dealing with donations requires training, documentation, rules development and reporting.

We may approach these tasks, but only after all the issues on the main tasks of the fund have been resolved, namely: the launch of regular deliveries, the development of a system for receiving and supporting applications for medical care, informing parents, organizing information exchange with health care institutions , public organizations.

- How do you plan to work with the regions, which actually shifted all concerns to the fund, depriving children of the necessary support?

- Situations when children in the regions are denied the purchase of medicines and send their parents to the Circle of Kindness fund, they only say that local officials inattentively read the presidential decree.

The document very clearly states that the fund is being created as an additional mechanism for ensuring the rights of children to provide medical care.

The “Circle of Kindness” only supplements all the other possibilities of receiving assistance and does not replace health care institutions, does not cancel programs of state guarantees or any other type of assistance.

So, until a decision is made otherwise, the child has the right to receive medicines in his region.

Recently, at the Public Chamber of Russia, we held a consultative meeting with public organizations that are involved in helping seriously ill children.

Literally in every speech there was a problem that regional health officials were stopping the purchase of medicines, referring to the Circle of Good Foundation.

The Ministry of Health has already sent clarifications to the regions that the mandate of the Circle of Kindness Foundation does not include those purchases that are carried out by the regions.

The responsibility of regional officials for maintaining the previous funding for drug provision of children was discussed at a meeting of the Minister of Health with the vice-governors of the regions.

I don't know how else you can reach out to regional officials to tell them literally the following: “Colleagues, please, in your decisions, proceed from the child's priorities.

If you see the risks of interrupting treatment, there is no need to "kick" a family with a seriously ill child to the federal Ministry of Health or the Circle of Good Foundation.

It is your responsibility not only to help the child, to ensure the continuity of treatment, but also to inform the parents and explain when, where and on which list you include their child. ”

What did the recent situation in Chuvashia show, where the child died?

The question is not only about the availability of medicines for the child, but also about how we all work with the parents of seriously ill children.

Explaining to parents of their actions and decisions should be an integral part of medical work.