Letters to the editor. Must a cancer patient fight their own way to chemotherapy?

Letters to the Editor. Should an oncology patient have to pave their own way to chemotherapy?

"Gazeta" has received several appeals from oncology patients in Tashkent who spoke about the increased complexity of the procedure for obtaining a subsidized referral (order) for treatment. According to them, the new system is not fully established, causing delays in issuing the order.

In early October, reports appeared on social networks claiming that free service at the Republican Center of Oncology and Radiology had been discontinued. In response, the center stated that free service had not stopped: "Only the patient referral procedure has changed. Previously, capital residents applied to the city branch of the center with a paper referral. Now, as in other regions of Uzbekistan, patients are referred to the institution based on an electronic referral through the DMED system (state digital medical ecosystem — ed.)."

The center explained what the patient's route now looks like:

The center explained the reason for the system change as follows. "Previously, most patients were referred to the center through the DMED system with only Form 027, without undergoing the necessary examinations in family and multidisciplinary central polyclinics. As a result, the Oncology Center's polyclinic operated under excessive load, and examinations that should have been conducted locally had to be performed at the center itself at the expense of the State Medical Insurance Fund. This led to funds intended for high-tech medical care being spent on primary examinations. In addition, it was difficult to determine whether patients applying from Tashkent required treatment at the regional or republican level. The transition to electronic referrals will eliminate these problems."

I was issued a referral in the usual manner. After several hours of waiting in line, the district oncologist came out and said: "No referrals, no chemotherapies, no other issues — consultations only. I have warned you."

After that, I went to a general practitioner. For the next 3 hours, we tried together to issue a subsidized referral to the Oncology Center for approval. But nothing worked.

Finally, at around 5:00 PM, an employee of the district health department was found who, presumably having completed advanced training, was well-versed in the matter. She helped arrange everything necessary in literally 10 minutes.

A total of 3 hours and 10 minutes of nervous tension, waiting, and uncertainty.

I want to note separately: a huge thank you to the employee who helped me figure it out! Her professionalism deserves respect.

But it is precisely this incident that forces an uncomfortable question: if one person knows how to process such referrals, why have the rest of the staff not received sufficient practical training?

After all, this is not about a certificate for the sake of a checkmark.

This is about patients who need timely treatment.

All this time, I — an oncology patient with Stage III triple-negative breast cancer — sat in tension, worried, and thought: "What to do next? Where to go? Will they manage to process the referral in time? Will my chemotherapy fall through?"

In such a state, it is even difficult to eat. And my strength is already running out.

The body is going through treatment, the immune system is weakened, every day requires immense effort. And instead of focusing on treatment, the patient is forced to figure out a system that is supposed to help them.

And then it was said: "You didn't have to sit and wait." Of course, I could have. I could have left, waved my hand, and waited for everything to somehow resolve itself. But what to do with the cancer then? It doesn't wait.

Cancer doesn't know that the patient failed to process a referral.

Cancer isn't interested in whether the doctor is trained to work in the electronic system. And cancer will not wait until interaction between institutions is established.

To date, my referral has finally been processed and is awaiting approval from the center (for the fourth day already). I hope that everything will end well and the treatment will continue on time.

But I am thinking not only about myself.

How many more people are going through the same thing right now? How many patients are sitting in lines, calling, traveling from one institution to another, trying to figure out incomprehensible requirements? Among them are people who work and cannot take time off indefinitely. For some, work is the only source of livelihood. There are patients for whom it is hard to sit, walk, and wait for a long time.

Is a person fighting cancer really expected to ensure the functioning of the healthcare system on their own feet as well?

Aren't medical institutions, electronic systems, and responsible specialists (and not just a single specialist) there precisely so that the patient's route is clear, consistent, and timely?

I am not opposed to changes. On the contrary, I am for modern systems, digitalization, and improving the quality of medical care.

But any new system must first be fine-tuned, and staff trained in practice.

And if difficulties arise, there should be a clear mechanism for promptly resolving the problem, without hours of waiting and running around for the patient.

I appeal to the leadership of the responsible medical institutions and healthcare authorities: please pay attention to this problem. Conduct practical training for staff, ensure a clear algorithm for processing subsidized referrals, and establish interaction between polyclinics and the oncology center. A patient should not become a mediator between institutions.

And now I will say the most personal thing. With Allah's help, I have already walked 90% of my path with you. I held on, fought, believed. But today, I am starting to give up. Strength is low. Immune system is weakened. I am tired not only physically.

Previously, patients diagnosed with cancer were issued an order to undergo another course of treatment at the Oncology Center through a referral from one district or another.

Each patient has an individual treatment protocol

(the frequency of receiving chemotherapy is 14, 21, or 28 days).

Now, an electronic system for issuing orders has been introduced; for this, one must first contact the family polyclinic, which must conduct tests (the polyclinic does not have the capacity to perform the laboratory tests required to decide whether chemotherapy is possible, including the determination of blood parameters such as urea content, creatinine in the blood, ALT, AST, and others), so accordingly the patient has to go get tests either at a private clinic or with a 24-hour delay.

Next, the polyclinic digitally sends a package of documents for review to the district health department (the package is knowingly incomplete), the district health department confirms or rejects the application, and if it confirms, the matter transfers to the Oncology Center's side, which again sends it for review to its internal commission, which cannot cope with the huge number of applications.

As a result, the patient spends 2 or 3 days in a line at the clinic, retakes tests at the Oncology Center, or goes to a private laboratory.

Tired of running around in queues, patients are ready to accept paid hospitalization at the center.

My treatment under a subsidized referral was approved several days ago after passing all the necessary procedures. The Oncology Center said that only the state insurance has to pay.

Today I called the call center of the state insurance (fund — ed.), and they told me that the center must admit me for treatment and send a report after the treatment, after which they will pay for the treatment.

They said: "We don't know in advance how much it will cost, after all." At the Oncology Center, they say that I cannot be hospitalized without insurance payment. What should I do then?