One Meter Apart

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One Meter Apart
One Meter Apart

Video: One Meter Apart

Отличия серверных жестких дисков от десктопных
Video: В метре друг от друга — Трейлер 2019 (мелодрама) 2023, January
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One meter apart

Justin Baldoni's film "One Meter Away" was released in Russia. A touching love story of two adolescents with a genetic disease of cystic fibrosis, at the same time, describes the medical side of the issue in sufficient detail. MedNews watched the film from this angle.

"One meter apart"
"One meter apart"

Photo: Google Images / 1331

Justin Baldoni's film "One Meter Away" was released in Russia. A touching love story of two adolescents with a genetic disease of cystic fibrosis, at the same time, describes the medical side of the issue in sufficient detail. MedNews watched the film from this angle.

Stella and Will met at the hospital. The girl talks about her treatment in a video blog, she is obsessed with order - all the medicines are in their places, the mobile application reminds of the time of their intake, the procedures are carried out strictly according to the schedule. The young man who does not believe that experimental treatment will help him is skeptical about all this. Stella teaches Will order, he teaches her - to live as if every day is the last.

Cystic fibrosis (cystic fibrosis) - the most common hereditary human disease - is accompanied by damage to the glands of external secretion and manifests itself in an excessive accumulation of mucus in the lungs and organs of the gastrointestinal tract. Pathological changes occur due to a mutation of a gene that regulates the transport of salts and water in the cells of the mucous membranes. In the absence of treatment, only 12% of patients live up to 15 years - children die because they cannot breathe and normally digest food. According to official data, more than 4,000 people in Russia suffer from cystic fibrosis. But, according to experts, there are much more patients, only they are treated for other diseases.

Cross-infection

The plot of the film is based on this problem: Stella and Will should not touch each other, or even get closer than six feet, due to the deadly risk of cross-infection. Bacterial exchange can be fatal. They know this well, and the nurse Barb, who is in charge of sick teenagers, constantly reminds of this, who witnessed the death of two other lovers.

All patients with cystic fibrosis are potentially dangerous to each other, as they are very susceptible to infections and have different microflora. In addition, Will is infected with separation (Burkholderia cenocepacia ST709) - for patients with cystic fibrosis, this is a deadly infection, even more dangerous than Pseudomonas aeruginosa. The life expectancy of such patients is reduced by 10 years. They don't even have lung transplants anymore. Often, the addition of B. cenocepacia ST709 leads to a rapid progression of the bronchopulmonary process, causing the so-called “septation-syndrome” - necrotizing pneumonia with septicemia, which is often fatal.

Two years ago, more than 20 Russian children with cystic fibrosis contracted a deadly infection for them during treatment in the department of acute respiratory infections of the Kemerovo regional hospital. There were no separate wards in the department, the separation of patients taking into account the flora of the respiratory tract was not carried out here.

Hospitalization

The hospital rooms in the movie “One Meter Away” are more like private rooms. Teenagers decorate them with posters and pictures, store books and clothes here. But the main thing is separate rooms with their own bathroom. (The heroes of the film constantly violate the requirements of isolation, but this is their choice).

Patients with cystic fibrosis should only be admitted to separate rooms. However, this requirement, prescribed in all clinical guidelines, is not reflected in legal regulations - SanPiNs or orders of the Ministry of Health. The boxes themselves that meet all the requirements are, for example, in the capital's Morozov hospital. But in most Russian medical institutions there are no such conditions. As there is no information about patients with non-fermenting gram-negative and antibiotic-resistant flora (results of bacteriological culture of sputum), patients are examined in laboratories that do not have sufficient qualifications for this. There are simply no others - three Moscow laboratories have appropriate certification throughout the country, and one each in Samara and Novosibirsk.

In addition, in countries with developed medicine, patients with cystic fibrosis are hospitalized in the most extreme cases. The emphasis in specialized centers is on outpatient care and day hospital, which insures them against cross infection. In the Moscow region, where there are such conditions, the indicators of the duration and quality of life of patients are much higher than where there are no such specialized centers.

Daily routine

The film shows how much effort sick adolescents need to live a normal life, albeit with their own special rules. The tedious daily medical routine takes up most of the active life of people with cystic fibrosis. This is many hours of clearing the airways, six to eight inhalations a day, two (or even more) sessions of kinesitherapy (special therapeutic exercises, the use of breathing simulators that effectively remove phlegm), taking numerous medications to normalize digestion.

The heroes of the film are oxygen-dependent patients who have to constantly carry handbags with portable oxygen concentrators with them. But thanks to this, they can leave the ward, walk along the street. This is not yet possible in Russia. At best, this is a balloon that you have to carry on a trolley (such a balloon in the film is from a friend of the main characters - Po). But even such "heavy equipment", as the parents of sick children call it, is extremely difficult to obtain.

Lung transplant

The heroine of the film is expecting a lung transplant (her beloved, due to separation, has no longer even this chance). Lung transplant will not help Stella recover, and CF is not going anywhere. Still, other people's lungs increase the life expectancy of people in the final stage of the disease.

In Russia, the first lung transplant for cystic fibrosis was carried out in 2012. And just recently, for the first time in domestic transplantation, such a patient received a liver-lung complex. Science does not stand still, but such an operation cannot be massive because there cannot be a sufficient number of donors. In addition, there are no ideal donor organs - for example, the lungs of a smoker are not suitable for transplantation.

Innovative treatment

A radical solution to the problem of cystic fibrosis behind gene therapy. So far, there is no drug that would correct the disorder in the gene. This is a very difficult task, scientists from many countries are working on it, but so far there is only symptomatic treatment. Nevertheless, it also bears fruit. And if earlier cystic fibrosis was a problem of pediatricians (in the 1950s, more than 60% of children born with cystic fibrosis died before the age of one year), now more than half of the patients over 18 years old observed in the United States. In Russia, there are about 28% of adult patients. But, thanks to neonatal screening (detection of the disease in the maternity hospital), the life expectancy of patients with cystic fibrosis born this year is 54 years.

Pharmacogenetic therapy has become a breakthrough in the treatment of cystic fibrosis, which is very difficult to work with due to the huge number of mutations in the gene responsible for the development of the disease. In total, more than two thousand such mutations are known, about 180 of them are pathogenetically significant. And for each class of mutation there must be a different drug. The first such drug for etiological therapy was Kalideko, then Orkambi, which is prescribed for the most common F508del mutation (in Russia there are about 30% of such patients). This therapy gives excellent results: the function of organs is increased, and severe complications are prevented.

Unfortunately, these drugs are not yet available to Russian patients. Therefore, in patient groups in social networks, where the new film is actively discussed, they immediately drew attention to the list of drugs that Stella takes. When her phone screen reminded her of the time to take her medications, Kalideco was among them.

Basic treatment

Another headache for parents of sick Russian children is the government's attempts to save money on medicines by purchasing cheaper, untested drugs that can actually worsen the condition of children. For example, a two-year-old child can lose up to 300 grams in weight in a few days as a result of taking the domestic drug "Microzyme" together with the imported "Creon" (the heroes of the film take exactly "Creon"). Other drugs are also being launched on the market, according to patients, with absolutely unproven efficacy. In particular, everyone is afraid of the possible replacement of the effective drug "Pulmozyme" with a poorly studied domestic analogue. Now "Pulmozyme", the only one of all basic therapy drugs, is issued under the "7 nosologies" program.

Another problem concerns medical devices. Thus, Pulmozyme can be delivered to the body only through an inhaler. But the inhaler itself has to be bought at your own expense. In some regions, this issue is being resolved, although not for everyone. So, in Moscow, sick children were given inhalers, but as follows from the order of the health department, you can get an inhaler only with a second degree of respiratory failure (that is, you must first reach this degree).

Teamwork of doctors

This is another moment in the film that draws attention to those who are "in the subject." Our country is sorely lacking specialists, especially those who have experience working with adult patients who have their own specificity of cystic fibrosis. Two years ago, the National Consensus "Cystic Fibrosis: Definition, Diagnostic Criteria, Therapy" was adopted in Russia. As a recommendation, the Consensus prescribes the composition of a medical team that should work (and work abroad) with such patients - this is a functional diagnostics doctor who determines lung function, an attending physician (therapist, pediatrician or pulmonologist), a nutritionist or gastroenterologist, a kinesitherapist, a psychologist, etc. a number of specialist consultants. But this is precisely a recommendation that has no legal force for officials.

In the film, there is a nurse whose duties include supervising sick teenagers. A social worker is responsible for providing patients with medicines and devices. In our country, everything falls on the shoulders of the parents of sick children. And because of the need to constantly "knock out" something for their children, "pulling" doctors into it, even the term "parental extremism" appeared.

Stigma

Cystic fibrosis can and should be treated. According to the first president of the All-Russian Association of Patients with Cystic Fibrosis, Professor of the Moscow State Scientific Center Nikolai Kapranov, "from an absolutely lethal childhood disease, cystic fibrosis becomes a chronic pathology of adults." However, people have to constantly fight the disease, experiencing physical and emotional suffering, many of them die at a young age.

In addition, in our country, the receipt of medicines and medical supplies is directly related to the status of a disabled person, which cannot be obtained simply due to illness. Today, to confirm disability, it is required to prove that the function of a particular organ has suffered by more than 20%. And if the patient is saved and, as a result of regular active treatment, reaches adulthood in a decent form, disability is removed from him, and he can no longer receive all the drugs he needs.

Domestic legislation on health protection is far from perfect, and the situation is exacerbated by "discrimination at the place of residence", when each region independently adopts regulations that curtail or expand the rights of sick people. And rare positive examples are almost never replicated throughout the country.

So, in Novosibirsk, thanks to the activity of the patient organization "Gene of Mercy" and the understanding from the authorities, the service of mobile palliative care began to be engaged in improving the quality of life of patients with cystic fibrosis. Sick children are visited not only by a doctor, but also by a massage therapist, a specialist in exercise therapy; it is now possible to drip intravenous medications at home. As part of palliative care, patients are provided with equipment - coughs, percussionists, concentrators.

But to implement this in other regions, where the palliative status is reserved only for dying patients, has not yet succeeded. Every healthcare provider has a different vision of the world, and this is often very different from what patients need. In November 2019, a patient forum is planned in Yaroslavl, the task of which is to unite the efforts of officials, doctors and patients, and to try to develop a strategy for the whole country regarding cystic fibrosis.

There is no story sadder …

Far from Russian problems, the film "A Meter from Each Other" draws public attention to the disease itself. What is it like to feel how your lungs are shrinking, from day to day to engage in complex procedures and refuse the touch of a loved one, not allowing him to come closer than one and a half meters. The ending of the film is sad, but, unfortunately, it could not have been otherwise. The patient organization told about the love story of two Russian patients with cystic fibrosis, which ended tragically several years ago. A terrible cross infection killed the young girl, her lover is alive and still goes to her grave almost every day. Think of them as you hug your loved ones and thank God for giving you this opportunity.

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