- 17 hours ago
فسيلة - transplant
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هي مكتبة رقمية تحتوي علي آلاف الفيديوهات العربية في جميع المجالات
It is a digital library containing thousands of Arabic videos in all fields.
قوائم تشغيل فسيلة
https://www.dailymotion.com/fasela/playlists
Category
📚
LearningTranscript
00:30As Professor Fouad, I am here for you.
00:3140 to 50 years old
00:35My advice to you
00:36I'm like your brother, that means
00:38These are the two days you have left.
00:40Among your loved ones
00:41Habel, you're in it
00:42Don't deprive yourself of anything
00:44Second, one doctor
00:45I need these things because I will live, God willing.
00:47For 75 or 80 years
00:49This is the normal lifespan of a human being
00:51Lifespans are in God's hands.
00:52Age is not a heroic feat
00:54How did you spend your life?
00:56May goodness fill your life
00:57Get closer to God
00:59We play with our children
01:00Yes, why are you talking like that?
01:02This is a fatal disease.
01:04Separate it, we'll make it again
01:06Perhaps God is crying out at this time of night.
01:08Isn't it changing your lifestyle?
01:10Isn't it better to follow a better person?
01:11better
01:13What night?
01:14This is more than I even want to experience.
01:15How old was your father when he died?
01:18What do you mean?
01:1975 years old only
01:21Yes
01:21This is probably a serious matter.
01:23I'm very sorry
01:23What is something that is considered "rustic"?
01:25My father died a very ordinary death.
01:26The man knew he was going to die a month beforehand.
01:28He wrote his will and was careless, knowing that the Angel of Death was coming.
01:31Why are you talking like it's a tragedy?
01:33I completely understand the state of shock you're in.
01:35And I understand that you'll be counting a little
01:38In case of denial
01:39I'm not shocked at all
01:40I don't know why you're upset in the first place.
01:44I don't know why you're getting angry.
01:46You need to stay calm and avoid getting angry.
01:47At least 40 years old
01:49How can I stay away from anger for 40 years?
01:51You're making me even angrier.
01:55Look what's left for me, I lived for a year, a thousand years.
01:57I always tell people this news
02:00I can't talk to you
02:02Okay, doctor, I'm a professor.
02:03You've wasted more than enough of my time.
02:05And you know, I only have 40 years left.
02:08Goodbye
02:09Professor Fouad
02:11Stay away from smoking
02:13Don't shorten your time any further.
02:24music
02:28music
02:28music
02:29Dear viewers, safety
02:29Peace and blessings be upon you. Dreams of you in a new religious episode.
02:31From the Al-Daheeh program
02:32In November 2010
02:33Mila Makovic was born
02:34In the American state of Colorado
02:36Who, my dear, was such a very active child?
02:38To the point, my dear, that the first time you try
02:40The calf was two years old
02:42Around the middle of the three years, it was clear that she liked to walk alone.
02:44Even if the distances are long without gathering
02:47And her father won't carry her.
02:48After her third birthday, she'll start climbing mountains.
02:50My dear, Akram Tawfik's project is not childish.
02:52Her mother is Yisholi, ya Fertaylo
02:53I'm sure all of this isn't just talk you're saying to boast.
02:57Like any other day, my smart son, my son who doesn't make mistakes, my son who doesn't swear
03:00She wasn't referring to her child's accomplishment in the article.
03:02But the girl agreed with her mother's kind words.
03:04She was truly energetic and ahead of her age.
03:06But gradually, Talah started doing strange things to me.
03:08At the age of four, Mila's personality began to change.
03:11And Mila began walking towards her.
03:13You will then be diagnosed with a minor problem in the shinbone.
03:15Dr. Hetemt Julia N.D. solves a common problem
03:19Especially for children your daughter's age
03:20But Julia, the mother, felt that something was wrong.
03:22Gradually, Mila began to fall every now and then.
03:24After speaking incoherently, she began to speak slowly.
03:27She began to speak intermittently.
03:28Her behavior also began to show changes.
03:30At the age of five, doctors began using the word "delay" when talking about her.
03:34They are using it for the first time in their speech when referring to the girl and her development.
03:37And again, Julia felt that something was wrong.
03:39The doctors felt she was exaggerating.
03:41And after more than 100 visits to doctors, my dear
03:43Most of them were surprised that the girl had actually been older than her age before.
03:46And all the diagnoses will start to converge on a single interpretation.
03:48Mila has a rare disease
03:50This term, dear, describes diseases that don't affect people very often.
03:52Rare disease according to the World Health Organization definition
03:55It is a disease that affects fewer than 65 out of every 100,000 people.
03:59That means approximately one in every 1500
04:00The important thing is that Julia will start recording every new show that appears on her daughter.
04:04Hopefully this will facilitate reaching a suitable diagnosis.
04:06The symptoms were difficult to remember.
04:08In the nerves
04:09epileptic seizures
04:10In December 2016, Mila lost her eye due to epilepsy.
04:12But as quick and as severe as these symptoms are
04:15However, the doctors were finally able to reach a diagnosis.
04:17Mila had a disease called Patten
04:19Patten Beezez
04:20This, my dear, is an extremely rare genetic disease.
04:22It affects 2 to 4 children out of every 100,000 children in America.
04:25Its harmful effects gradually increase.
04:27Julia, despite the severity of the illness, will say
04:28I finally felt relieved because we reached the diagnosis after more than 3 years.
04:323 years of dealing with doctors
04:34Am I exaggerating or am I crazy?
04:36Batten causes a problem in a part of the cell called
04:38lysosomes
04:39My dear, in street slang, it's garbage Arabic.
04:42Which gets rid of the cell of cellular waste.
04:44If it's disabled, then it means the accumulation of waste.
04:46And cell death, like brain cells
04:48Up to the point of death
04:49My dear, we are talking about a fatal disease that has no cure.
04:52But Julia helped Mila because she needed it.
04:54Very expensive tests to identify discrepancies
04:57The one who caused the disease
04:57It's not an advantage for treatment, but another important person
05:00Mila Azlan's brother, who is probably
05:01He has the same disease, right?
05:03She was six years old at the time and showed no symptoms.
05:06But Mila also has years passed since then.
05:07Without showing any symptoms
05:09Well, he should get him tested if the matter is this serious.
05:11These tests you're talking about with such confidence
05:13In our case, a full genome scan was needed.
05:15It means all of Mila's genes
05:17At that time, very few laboratories in the entire world were capable of doing this.
05:20However, these tests are very, very expensive.
05:22And her wounds were not small, and the girl's condition was deteriorating every day.
05:26Julia knew that her most important weapon was her daughter's story.
05:29A rare disease like this will garner much more sympathy.
05:32If it becomes associated with the image of a specific person, especially if that person is Mila's age
05:35In every sense of the word, she lived it
05:37At that time, my dear nation, there was a charitable organization called
05:40The Millaz Merkel Foundation aims to raise four million dollars to raise awareness about the Betan Marathon.
05:45And also for scientific research and treatment
05:47And in January 2017, Julia's phone rang.
05:50The caller was Dr. Timothy Yu
05:51He happened to be involved in a genome study for people with autism at the time.
05:56Harry saw Mila's situation on Facebook and decided that he would help her.
05:59Dr. Timothy was humanely interested in the girl's story.
06:01He also had a scientific interest.
06:03He wanted to test the technology he'd been working on for years and try to achieve the breakthrough they were looking for.
06:07Your mission, my dear, was to search for a woman in a pile of ash without reporting her identity.
06:11A few days later, Dr. Timothy Yeo contacted Julia and gave her two pieces of news.
06:14The first piece of news is that, thank God, they discovered the mutation they were looking for in her daughter.
06:18The second piece of news is that her brother didn't pass on this mutation.
06:20He said, "No, Muhammad, the news is terrible."
06:22My dear, you are the one who noticed her brain
06:23Not always two pieces of news are good news and bad news.
06:25Timothy also discovered something extraordinary in her mileage.
06:28So, my dear, it seems that the problem lies within the catalog.
06:30It's not that someone cut out the page or burned it.
06:32Dr. Timothy decided he wouldn't be here.
06:34He will continue his research; perhaps he will find a cure.
06:35Although it was the first time his team had tried to cancel the medication
06:38This drug will be the first of its kind.
06:40It targets a single small mutation in a single patient.
06:42The problem, my dear, was that time was not on his side.
06:44While Timothy was trying to get the drug and obtain exceptional approvals from the FDA
06:48It proves to be a safe treatment and they can produce it quickly enough.
06:51The situation of leaning towards another side has become more and more developed
06:53Mila lost the ability to speak
06:55She lost the ability to eat solid food.
06:57But in January 2018, the news arrived.
07:01The FDA has approved the new drug.
07:03Dr. Timothy found a company that could produce the drug.
07:06She agreed that they would produce it, but in limited quantities.
07:08From 20 to 30 grams
07:09Hassan can reduce the cost as much as possible.
07:11Finally, we've been given the medication for the first time.
07:13God bless you, Abu Ahmaad! This looks like a delightful episode; you've got me excited!
07:16Tell me if the medicine works or not
07:17The truth, my dear, is that on the first day after the right, nothing remarkable happened.
07:21But this alone is a great injustice, that he was one of the doctors.
07:23This medication, at least, has no immediate side effects.
07:26Hamid, I'm in a hurry. We prefer to assess the situation day by day.
07:29The age of gray hair is causing distortions now and in the past. The video is cold.
07:31I'm dying to know what Hassan Mashwat is in Egypt
07:33Okay, my dear, let's skip 6 months
07:34My dear, her condition is not stable.
07:36No, Damon Zen's condition is stabilizing and improving.
07:38The number of epileptic seizures she experiences was very high.
07:40The severity of the attacks themselves also decreased.
07:41Mala was able to reach it herself and go back to eat again.
07:44And gradually I returned to my second walking.
07:45But unfortunately, my dear, although the treatment improved her condition
07:48After she was on her love, she died
07:49However, she lived for only about three more years after that.
07:52At that time, my dear, the illness caused more harm than necessary.
07:54It was difficult for us to catch up with her after all that.
07:56Because in February 2021 Julia is advertising on Facebook
07:59News of her daughter's death
08:00Rare diseases, my dear, are not actually rare diseases.
08:04The removal of minorities in societies
08:06We are all minorities, and the majority of people are more like minorities.
08:09But as long as these minorities are alone, they remain a minority.
08:11What do you say, Ahmed?
08:12Tabash just told me from the barbecue that this disease is rare
08:14It only affects one in 1500
08:16Weren't you just talking about diseases that affect 65 people?
08:18Of every 100,000, there are some rare ones, of course.
08:20First, respect yourself. My name is Professor Ahmed.
08:22Fish Ahmed Di? Years we let the slide
08:24According to the Dalance field report
08:26About the state of rare diseases in the world
08:27I'm dealing with the year 2024, so there are approximately
08:30300 million people worldwide are forced
08:32He is living with a rare disease
08:33But the number of rare diseases currently
08:35It comprises approximately 7000 species
08:37If you named the number of diseases after the number of diseases
08:39You'll find that each disease affects only a small number of people.
08:42Ze Joshua's disease
08:43Tel is supposed to be one of the most famous rare diseases
08:46It affects the spleen bone
08:47Gaucher patients are in relatively better condition
08:49From other diseases because there is now a cure
08:51It's common knowledge that they have this disease, and this isn't widespread.
08:53Unfortunately, rare diseases are effective even now, my dear.
08:55If the total number of people with rare diseases
08:57Large number of people suffering from each disease individually.
08:59A small number if the cost of the medicine is distributed
09:01The result will be based on their number.
09:03The price of the medicine is exorbitant because
09:05The high cost of research
09:08Studies and experiments
09:09Clinical and all the procedures it entails
09:11The pharmaceutical company is the one that raises the cost of the medicine.
09:14For example, you have an illness due to astrological factors.
09:15Nader Tani, for example
09:18This is a disease that affects the nerves.
09:19Mobility and muscles, thank God
09:21There is a treatment available, but the dosage is not specified.
09:23How much is one of them? We'll tell you, my dear.
09:26The dose arrived in 2020
09:27A dragon with a million-dollar dose
09:29Abu Hamid? That's all, my dear.
09:31This is even if it is in one way or another with problems
09:33All that money might not even buy the medicine itself in the end.
09:35As happened in another rare disease case
09:37Familian Lipo Protein Lipis Deficiency
09:39The cost of treatment for the LPDL has reached
09:42For more than one million euros
09:43But during the period of the years
09:44Only one patient was treated with it.
09:46As a result, the company itself did not renew its summary.
09:49Of course, for reasons like these, pharmaceutical companies
09:51She doesn't care about these diseases. And most
10:03For five years
10:04And 30% of children with a rare disease
10:06They die before the age of five.
10:08Unfortunately, my dear, Mila's story was an exception, not the rule.
10:11And without enthusiasm, someone like Dr. Timothy
10:13The one who personally falls short in her situation
10:14There wouldn't have been any attempt to deal with her illness at all.
10:17Unfortunately, my dear, 95% of rare diseases
10:19There is no approved treatment for it.
10:20Despite its negative impact on patients
10:22However, these are diseases that no one is trying to find a cure for.
10:25This is why they are called orphan diseases.
10:27Orphen Dizesis
10:28And its medicines also deserve the title
10:30Orphan Drugs
10:31Orphan medicines for orphan diseases
10:32Maybe you're saying that to yourself, my dear.
10:36The medical sector is an evil sector.
10:37He was greedy and lived off money.
10:39But let me explain to you, my dear, that the medical sector
10:41Sometimes he has a logical point of view.
10:43Why? We invest time, effort, and research.
10:46In the treatment of extremely rare diseases
10:47Regarding these priority diseases
10:49While I need to invest all the resources I have
10:52In the treatment of common and fatal diseases
10:55Diseases such as cancer, epidemics, and Alzheimer's
10:58And others and others and others
10:59Why did you send me to a rare disease clinic?
11:01It will only help identify far fewer infected people.
11:03For example, a fan for cancer patients
11:05So, my dear, the dilemma of Qatar was
11:06A while back when I told you about it
11:07Listen to the episode on the Qatar dilemma
11:08The truth is, my dear, that this point of view is correct.
11:10And he made a mistake at the same time
11:11Because it might make sense for the pharmaceutical company
11:13Those who consider it a money-making and business venture
11:15But medically, research into rare diseases
11:17It has benefits that can extend to all other fields of medicine.
11:20O God, my dear, medical profession, please be aware of this.
11:22Not closed rooms separated from each other
11:24Study of rare diseases
11:25It could improve our scientific understanding
11:26For the general health of patients
11:28Not just scarcity
11:28We know the reasons for their occurrence at the level of the genes and molecules themselves.
11:31This, my dear, is not a prediction, nor mere rhetoric, nor something I use to sell.
11:33This actually happened, and there are witnesses to it.
11:35Scientific research on rare disease drugs
11:37We have already made important scientific discoveries
11:40For example, the causes of diabetes, obesity, and migraines.
11:43My dear, this happens to millions.
11:45It's not something rare.
11:46Let me give you a more precise example, my friend.
11:47I will study the rare disease
11:49Neiman Beck Dezez
11:50Which leads to a disruption in fat metabolism
11:52Therefore, dear, fat accumulates in the body
11:54We will encounter one of the important proteins in this process.
11:57MPC1 protein
11:58What will be discovered by chance is that
12:00This is the same protein
12:01Which leads to increased susceptibility to Ebola infection
12:05This is an infection that appears from time to time in Africa.
12:07And the percentage of deaths due to it is high and low.
12:09When the Ebola outbreak occurred in Africa in 2014-2016
12:12Specifically, in the context of Africa
12:14It has recorded 28,000 cases
12:15From them, my dear
12:1612,000 deaths
12:18Hey, my dear, you have a question
12:19How many people does this MPC affect?
12:21After this, my dear, you're saying that he's right
12:23From one to three people
12:25out of every million
12:26any?
12:26How is this a disease, Muhammad?
12:27I feel like people who are dying are even more shocked than that.
12:29Therefore
12:30Attempts to find a cure for it
12:31It brought us closer to a greater understanding.
12:32Ebola virus
12:33No, by God, I will establish proof against you with his words like that.
12:35Didn't you say that science isn't a closed room?
12:37We are connected to each other
12:38It is the discovery of a disease that can be heard and that can help us with other diseases.
12:41Why don't we work on common diseases with diligence and conscience?
12:43And we learn from it why the rest
12:44It won't make a difference
12:45As long as we try to search
12:46We treat common diseases that exist
12:48We will treat more people
12:49At the same time
12:50We'll be presented with some discoveries
12:51We use it to treat rare diseases
12:53See, I understand you, Umm Ahad.
12:54You're both so hot today, my dear
12:56Huh?
12:56The side was gradually
12:57Shawakh Dak Ali
12:58First, the name is Professor Ahmed
12:59We will save you, teacher.
13:00divide
13:00Rare diseases have an important advantage
13:02Not present in other diseases
13:03These diseases are not only mostly genetic in origin
13:06That's in many cases
13:07It affects one specific gene.
13:09Therefore, it is a very good model.
13:11To study the effect of a defect in one gene
13:13And the protein produced by this gene
13:15And the manifestations of the disease resulting from each of these
13:17Therefore, it is a very useful foundation.
13:18What is called precision medicine
13:20Precision Medicine
13:22Oh, my Swedish day!
13:22There's a medical aspect to it, Abu Ahmed, that isn't accurate.
13:24It means the doctors who didn't bring multiple candidates on the subject
13:25My dear, perfection belongs to God alone.
13:27Is there really a 100% accurate truth?
13:28Medicine is not an exact science.
13:30For example, you could try a medicine device.
13:31Before one of them gets a result
13:33The medication might be effective
13:34But it has side effects when we follow it
13:36Maybe there are some medications available, my dear.
13:37We use them, for example, like antidepressant medications.
13:39We don't know how to light it
13:40Then her ears are in another place.
13:41You didn't take that into account.
13:42Precision Medicine
13:44It is an attempt to transform medicine into a precise dream.
13:46This is the kind of support that can help with
13:47Rare Disease Research
13:49Because here we have cause and effect
13:51There is a clear problem
13:51Benjin himself
13:52It causes the problem
13:53It pertains to a specific protein.
13:54This problem translates into clear manifestations
13:57This causal relationship is blame
13:58Oh Abu Ahmad, blame
13:59Precision Medicine
14:00Because, my dear, science
14:01Room, hall, and corridor
14:03So the discoveries you will make
14:04In the field of rare diseases
14:05It will be very focused on development.
14:07This type of medicine in the future
14:08Also, my dear, since the most important punishment
14:10This is one of the rare diseases; the cost
14:11Ignorance of these diseases
14:13It will be much more expensive than we expect.
14:15For example, a misdiagnosis
14:17Or late due to a rare disease
14:18It may result in certain diseases
14:20A lifetime of expenses
14:22Money going towards healthcare
14:23This is in addition to the fact that it is a lifelong commitment to a person.
14:25It will be a burden on all family members
14:27Sometimes regret has more than one follower.
14:30The same disease
14:30What's the topic, Genie?
14:31And I'm not talking here
14:32Resolving psychological burden and sadness
14:33and the feeling of empathy for others
14:35Not even on the physical strain
14:36The one who feels the disciple
14:37This is a life in which the whole society will bear
14:39As a result of family members being absent from work and school
14:42The legs of those afflicted with the disease or Peruvian disciples
14:44My dear, we have both a medical and an economic interest.
14:46It might not be as severe as other diseases.
14:48But Steele is influential
14:50Steel is large
14:51We won't be able to achieve this goal unless we treat rare diseases.
14:54That's why
14:55With all this, a stronger motive was needed.
14:57Pharmaceutical companies are encouraged to invest more in rare diseases.
15:00And that's what happened in 1983
15:01When the Orphan Drug Act was passed in America
15:04With incentives such as research and development funding
15:06Tax breaks and other benefits
15:08For example, disrespecting the medication for a longer period
15:11This drug remains under contract with the company.
15:12Let's go
15:13Indeed, since 1989
15:14Up to 2009, for example
15:15347 medicines
15:17For a rare disease, obtain FDA approval.
15:19How much does it cost to buy 34 medications?
15:21Between 1967 and 1983
15:23These incentives encouraged companies
15:25And again, my dear
15:26All rare diseases are not rare for everyone.
15:28And indeed, scientists subsequently succeeded in treating diseases
15:31Chronic myeloid leukemia
15:32The bad thing is through the discovery of drugs
15:34Tyrosine inhibitors
15:36Because of this, the chances of success are weakened.
15:37From the bad, I have three times more
15:39Between 2005 and 2015
15:40For example, cystic fibrosis
15:42or the casey
15:43Which is the cause of a genetic mutation
15:44This leads to a buildup of thick mucus.
15:47In the bank, Riaz, the two papers, and the digestive system
15:49The average age of patients is 30 to 50 years.
15:52In the last 10 years
15:53Mahlo Abu Hamidna, oh Saeeda
15:54Let us know, you'll see past cases and upcoming cases.
15:56no
15:56He sat there, unable to stand you, until morning.
15:58Here he tells you, my dear, that all of this is great, but it's not enough.
16:00Despite the support from pharmaceutical companies and attempts at incentives and encouragement
16:03We're still talking about around 7000 rare diseases.
16:06We're barely
16:07We treated the four hundred
16:0895% of rare diseases still have no cure.
16:11Here, my dear, after hearing Hazeem, the percentage will be shocked
16:13And you feel that we've definitely reached a dead end.
16:15By God's will, the state is working on it.
16:18By simplifying procedures, financing, and incentives
16:20And pharmaceutical companies are trying
16:22But ultimately, you can't sell at a loss.
16:24It will go bankrupt and close down, and there won't be any medicine left at all.
16:26Neither rare nor not rare
16:27But my dear, has it ever crossed your mind
16:29What brought us to this dam wall?
16:31The previous point, my dear, is that we're just going around in circles about a question.
16:33Maybe we don't know how to ask them.
16:35Because we know that the answer is difficult.
16:36The question appears simple on the surface, but its underlying meaning is extremely complex.
16:40The question is, how much do we lose financially with the death of one person?
16:43Or simply, what is the cost of human life?
16:46At the same time, my dear, it would be easier for you to say that human life has no character, Muhammad.
16:52Saving a billion people is like saving one person, Muhammad.
16:55However, the answer to the question might be different if you asked it to any government.
16:58The government was forced to distribute resources among millions of individuals.
17:02Therefore, my dear, she is obligated to see their numbers.
17:04Because, my dear, that's the way of the world; resources are limited.
17:06This is the science of economics, which is why it's the first thing that happens when resources become limitless?
17:10Basically, the economy will return to the home.
17:11Governments are forced to choose all the time
17:13Are more resources being directed towards improving road lighting, for example?
17:16Why not put the same amount of money into purifying the Sharm water?
17:19Should we build more hospitals?
17:20And we won't build more schools?
17:22Let's assume that we will award compensation for the death of a person.
17:24So, how exactly do you judge?
17:26What is sufficient compensation?
17:27For example, up until the 1980s in America there was something called the cost of death
17:30And what was meant by it at that time
17:32Loss due to premature death
17:35This includes medical costs and also the profits that could have been made if the person had been ISIS and reached the average lifespan in the country.
17:41In 1882, that figure was $300,000.
17:44That's equivalent to about $800,000 now.
17:48As for the dear one who went back, he's dead.
17:50So let me tell him that the Costof Death D remained in use until 1982 specifically.
17:55This year, the Occupational Safety and Health Administration (OSHA) proposed that companies label their products containing chemical substances.
18:01risk
18:02Asbestos, hydrochloric acid, and other things, oh Nehru, this is what Muhammad meant, like after 1882 in America.
18:07There was no law requiring companies to disclose that these products contained hazardous materials.
18:13Unfortunately, my dear, there was no law obligating companies to start
18:15The important point is that a law like this was supposed to have saved a very large number of people.
18:18All that was required was a label.
18:20Calculate it for me, my dear. They said the cost of death at that time was estimated at $300,000.
18:24The Lee strike, which resulted in 4,750 deaths, could have been reduced to about 1.4 billion dollars.
18:30This is the money we lost because of the death of these people.
18:33We were going to take work from them with this money.
18:35Let me tell you, my dear, the cost of printing these Le Bulls
18:38Two and six and ten billion
18:40It means slightly less than double
18:42Ah, go ahead.
18:43Didn't you transform the human being and leave me with a number worth a thousand dollars?
18:46That's a really good number.
18:47The cost of printing this paper is more expensive than a human being.
18:49My dear friend, economics has another side, and it has fangs.
18:52That's why, my dear, don't be Ashraf Ibrahim
18:54This is better
18:54My dear, the initial calculations are not in the interest of these 4750 people.
18:58OSHA or OSHA
19:00Osha, my dear, saw it as an illogical number.
19:02She submitted a petition for reconsideration to the then Vice President of the United States, George Bush.
19:06Bush's opinion was, folks, a technical matter.
19:09Let's get a technical expert to explain it.
19:10The limit, my dear, was William Viscose.
19:12This, my dear, is a world of risk economics.
19:15Just because he saw these bites, he said
19:16The error is naturally in the $300,000.
19:19My dear uncle William said that this figure is based on healthcare costs.
19:23He suggested that instead of talking about the cost of death and healthcare expenses
19:27So let's talk about the value of life itself.
19:28Oh Abu Hamad, take us to the one who earned it, the one who doesn't criticize my mother anymore.
19:31Let's ask people, my friend.
19:32In the opinion of William Viscose, we are
19:34She always appreciates the value of her life, even if it's indirectly.
19:37For example, construction workers don't receive the highest salaries.
19:39But they earn more than someone sitting at a box office in a movie theater.
19:42Comparing workers in hazardous jobs to others
19:45William says that companies need to pay an additional $300 to $400 each year.
19:49It takes one person to convince him to take a dangerous job like this.
19:52If he builds
19:53The chance of a person dying at work is 1982
19:56One in ten thousand
19:58At the time, each person was valued at approximately $38 million.
20:01That means, my dear, ten times the previous figure.
20:08Oh Abu Hamad, I swear I'm telling them this so you can twist things.
20:11It's not even this number, my dear.
20:13Despite the visitor's accuracy
20:14He is certainly not the only one who undervalues life.
20:17The regulations also differ from one country to another.
20:19For example, England in 2007
20:20I was spending 62 times more on Genie B than on Captagon.
20:23This means each person's share of the gross national product.
20:26So that the person is only one
20:28Compared to approximately 119 times that in America
20:31This leads us to the perspective of society itself in determining the value of individuals.
20:34Or what is called
20:35The value of statistical life
20:37VSL
20:38I call him a failure
20:39This is a failure, my dear. The entire society is willing to pay that amount.
20:42To reduce the risk of death of one of its members
20:44But of course, there is no clear method or agreement for calculating this value.
20:47For example, in 2003 a major scandal occurred.
20:49When the newspaper discovered that the Environmental Protection Agency
20:52EPA in America
20:53She appreciated that she valued the lives of the elderly.
20:55Over 65 years old
20:56By 37% less than others
20:58A statement, my dear, in the caravan
21:00Simply put, my dear, they wished the elderly were cheaper.
21:02I'm telling you, my dear funny teacher
21:03Ward Bft, my dear
21:04After the age of 55, 99% of his circus functioned
21:08After 65, after retirement age, he worked 85% of his life
21:12Here, my dear, is one of the richest people in the world.
21:14The majority of the correct work is from his sarwiya
21:16He is above retirement age
21:17This is an example that responds to the fact that it is natural
21:20The value for young people is always higher than the value for older people.
21:23At least materially
21:24This, my dear, was a huge scandal.
21:26This means that fewer older people than younger people are affected.
21:28This scandal is evidenced by the books published by Senior Discount.
21:30This data led to the discontinuation of using different values.
21:33Value based on age from
21:35So fold up this journey, my dear
21:37Which showcases the statistical efforts of humans
21:39To calculate the value of human life
21:41Let's go back to the issue of the dolma that caused all these problems.
21:44rare diseases
21:45Sergio Arari in Wara'a Al-Mai, published in 2016
21:47Healer, my dear, if we supplicate in itself
21:49Not a sufficient justification for treating rare diseases
21:51And the resulting economic feasibility calculations
21:53Because the economic cost is based on many needs
21:56Like the tax or cost of elderly care
21:58or newborn
21:59All of this helps us choose the patients we will treat.
22:01Based on their benefit to society
22:03or their productivity
22:04Those who are largely linked to their social and economic status
22:07This, my dear, eliminates the discriminatory treatment between the rich and the poor.
22:12Sergio felt that the priority should be given to the severity of the illness itself.
22:16The problem, in his opinion, is not that society carries rare diseases.
22:19It even carries severe diseases
22:21If we have two diseases, one common and the other rare
22:24According to him, we shouldn't calculate who infects more patients.
22:27In fact, it's a disease that causes even greater suffering.
22:29The assessment will not be based on who has the highest number of people infected with the disease.
22:32This disease causes such severe suffering
22:35The problem is that they want the numbers to be stuck in a dilemma and they've bombarded us with questions.
22:38Tell me, does that mean "Severity"?
22:39How am I supposed to get the numbers from?
22:42The problem is that in this realm of numbers, our only way of measuring things is to use quantities that can't be measured in terms of quantity at all.
22:47The problem with all these figures is not just their inaccuracy, inconsistencies, or even the lack of consensus on them.
22:51Its biggest problem is the reductionist nature of its own numbers.
22:54You can calculate the number of patients, deaths, and degree of disability.
22:58But how do you calculate the suffering? How do you calculate the families? How do you calculate the suffering that a person goes through just because their child has a rare disease?
23:03And you can't even know what benefit each person could have brought to their community.
23:08If this person had been treated and lived
23:09That's not all, my dear, the politician is also involved in the world of economics here.
23:12He is supposed to try to assign a monetary value to something.
23:15Even if you were to ask him about the value of his personal life or the value of the lives of those dearest to his heart, he would never be able to tell you.
23:20number
23:20In the case of Mila, with whom we began the episode, the relationship was the reason she lived the rest of her life better.
23:26She lived, even if only a little longer, after what was expected to happen within days.
23:30Try, my dear, to look at this story from the mother's perspective; try to assign a value to those three years in dollars.
23:34Ask any mother or father whose child, or any loved one, just ask them.
23:38How much would you pay and take three extra years with this person? That's why, my dear, I expect that if you asked my mother, she'd...
23:43itself
23:43Is the medicine that Dr. Timothy developed a successful medicine? Or, of course, the answer is yes, it is successful.
23:47Because it's not just life or suffering that we can't put a monetary value on.
23:51But also, what happened to the happy person, even if it was small and even if it was filled with all the pain in Mila's story, except
23:56It's my dear Priceless
23:57Ultimately, my dear, it's difficult for us to provide a quick and accurate solution to something as priceless as the value of life.
24:02We can try, we can strive, but we must always have doubt and the ability to review.
24:07But perhaps the thing a patient with a rare disease wishes for most is simply to be seen. That's what I'm hoping for, even in this episode.
24:12Some surveys indicate that 8% of patients with rare diseases know that the nearest available treatment is at least 10 days away.
24:18years
24:18Despite this, they were interested in social recognition, in saying, "We are here."
24:22They were concerned that their suffering be acknowledged and appreciated because a patient with a rare disease struggles with their life on two fronts.
24:27He brought it upon himself, with the illness, and then with a society unable to understand his suffering.
24:31Hey Azizi, the topic of our episode is a bit short, but let's end it with a glimmer of hope.
24:35Let me tell you, my friend, that Gene Adding Fraby is the field in which modern medicine is advancing day by day.
24:39It's not far-fetched to think that we'll soon see widespread treatments that target defective genes, replace them with healthy ones, and correct imbalances in hormones, enzymes, and proteins.
24:48In it
24:49It can eliminate diseases that have no easy treatments.
24:51Then all the suffering endured by people with rare diseases will have a greater and broader meaning in saving all of humanity.
24:57Until that happens, my dear, you know very well what you'll be doing.
25:09There's a purchase option clause. Honestly, this is a psychological assessment. You'll evaluate yourself using something else, but this is a psychological assessment, and I want it to be bigger.
25:43music