- 6 hours ago
This episode of Health 360 explores the mounting challenges faced by rare disease patients in India, noting that Rs 271 crore in government funds remains unused even as families battle high treatment costs.
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00:00You're watching Healthy 60 and on the show this week we'll tell you a little about International Children's Cancer Day
00:07which we have recently commemorated.
00:09This week we're also going to be spotlighting the high recovery rate of childhood cancer and all that you must
00:16know about it.
00:17Doctors now say that obesity is not a lifestyle disease because it involves abnormal biological processes as a result of
00:26them causing health damage.
00:28It has clear diagnostic criteria and requires medical therapies.
00:33We have to stop looking at obesity as a lazy person's problem.
00:38Ground reports on our patients with rare diseases are living in spite of assurances from the government.
00:44What about funds utilization for them and treatment which is prohibitively expensive?
00:50We explain why are diet sodas more dangerous than sugar sweetened drinks.
00:55Our focus on it because Gen Z is driving India's zero sugar drink boom.
01:01I'm Sneha Mordani, you're watching Healthy 60.
01:37Uninterrupted life-saving treatment for children and adults with rare diseases.
01:42This is the humble request of blacks of Indians living with rare diseases in the country.
01:48The treatment, remember, for rare diseases is prohibitively expensive.
01:52What's worse, 271 crores for this purpose, for these medicines, is lying unspent as rare patient diseases wait for this
02:03treatment.
02:04Where are we going wrong?
02:06Here is a detailed ground report throwing light on the condition of patients, many of them children, who are quietly
02:13being pushed to death.
02:2317-year-old Nayan suffers from MPS-2, also known as Hunter's Syndrome, a rare disease.
02:31It makes him vulnerable to infections.
02:33The genetic disorder also leaves him looking drastically different from regular folks.
02:39But that doesn't deter his spirit.
02:45When it was 2.5 years ago, there was no issue.
02:49After that, we saw that many issues were happening in the height of his fingers and the height of his
02:59fingers had been increased.
02:59Then we realized that there was an issue.
03:01After that, we saw it in the AIMS, and then we realized, I think, in 2016, that MPS-2 is
03:10a genetic disorder.
03:12It is very low in children, and the growth of the child has been reduced.
03:17As the other children play, they have a lot of issues.
03:20They have a lot of issues, pain in the bones, pain in the bones, and pain in the back.
03:25There are a lot of issues in the regular day-to-day life.
03:30What is the most important thing to do in the AIMS?
03:36He's doing everything from his own. He's doing everything from his own, but he's not doing anything.
03:43So, if he's got a medicine, I don't know.
03:50He's going to be secure with his future, but he's facing a lot of problems in his life.
04:02The union health ministry recognizes and considers Hunter's syndrome as a rare disease.
04:09Recently, the union budget exempted medicines for this disease from customs duty with the intent of making it cheaper for
04:17patients like Nayan.
04:19But accessibility remains a big challenge.
04:22Estimates are that 100 eligible patients have exhausted the one-time funding cap of 50 lakh per patient given in
04:31the year 2021 by the NPRD, which is the National Policy for Rare Diseases.
04:40In 2016, there was no response to the drug.
04:48The Prime Minister has been sectioned for 50 lakh rupees.
04:52But the drug is about 1.25 lakh per patient.
04:57So, until now, we didn't get anything from there.
04:58We tried to make sure that the drug is expensive.
05:02This is the drug.
05:03We didn't get anything from there.
05:05So, they didn't get anything from there today.
05:07They didn't get anything from there.
05:08They didn't get anything from there today.
05:09They didn't get anything from there.
05:09We just showed the doctors to their children.
05:14That's right.
05:16As per India's national policy for rare diseases,
05:19There are between 7,000 to 8,000 such rare diseases in the world with less than 5% having
05:26therapies for treatment and 95% with no approved treatment.
05:31The WHO, the World Health Organization defines rare diseases as a debilitating lifelong disease or disorder with a prevalence in
05:40one or fewer persons per thousand population.
05:4463 diseases in India are identified as rare diseases.
05:48The number of persons suffering from rare diseases is small.
05:52They are called orphan diseases since they lack a significant market for drug manufacturers.
05:59The high cost of orphan drugs is attributed to research and development expenses.
06:04Few pharmaceutical companies globally produce these drugs.
06:08And India has no domestic manufacturers except for food for special medical purposes.
06:15For small molecule, inborn errors of metabolism.
06:20Now, due to the high cost, the government can't provide free treatment to the patients.
06:25For a 10 kilogram child, annual treatment costs range from 10 lakh to over 1 crore rupees, increasing with age
06:33and with weight of the patient.
06:35Access to medicines is crucial for reducing morbidity and mortality in rare diseases.
06:42However, most rare diseases lack effective treatments.
06:46Of the 7,000 to 8,000 known rare diseases, less than 5% have available therapies.
06:5295% have no approved treatments.
06:55Fewer than 1 in 10 patients receive disease-specific care.
07:01The quality of life of those living with rare diseases is very low when compared with normal, healthy persons,
07:08and even if you compare with those who are affected by common serious diseases.
07:13For many, this disease means death.
07:18In the year 2014, my son was diagnosed and I got the quotation from EMS New Delhi.
07:24It was 1 crore 75 lakhs rupees per annum.
07:29In the year of 2015, I got the quotation.
07:32So, you can imagine, it increases once the number of vials increases, according to the weight of the child.
07:40So, the cost increases.
07:42Four months back, I lost my son due to this disease.
07:45And, you know, it's very painful.
07:48Of course, 50 lakhs capping is huge.
07:51Huge but not enough for the treatment of the MPS2 children.
07:56So, we have only one option for this disease, that is an enzyme replacement therapy, and it works actually.
08:03But funding problem is there.
08:06The national policy still lacks for the treatment of rare disease patients like Hunter and all group 3 diseases.
08:1480% of genetic disorders happen in children.
08:17And for these, they are absolutely life-saving.
08:21It's critical, because you have to give the drug to decrease, say, the ammonia, which is a bad substance in
08:31the body, and it can impact the brain function.
08:34Then we also have to give diets.
08:37We have to provide energy, because otherwise the baby will break down its own body tissues to provide the energy.
08:44So, these sort of things are absolutely critical.
08:50Those working to help patients suffering from rare diseases lament the fact that even funds allocated for rare diseases remain
08:58unspent.
08:59About 271 crore, they say, is the amount that can help in improving the lives of so many patients like
09:07Niamh.
09:09Medicines for rare diseases are being imported, they are patented, there's a lack of local production.
09:16And what the government can actually do is to incentivize local production and ensure that generic medicines are being made
09:24at an affordable price.
09:25These rare disease medicines can be made at a fraction of the cost of what they are priced today.
09:32So, they can be lower by 99%.
09:34India can play the role of the pharmacy of the developing world by providing rare disease generic medicines at affordable
09:41prices to low and middle income.
09:45The need of the hour, experts say, is to ensure urgent and uninterrupted life-saving treatment for children suffering from
09:53a range of rare diseases.
09:59For thousands of families across India, the word cancer-free marks relief and new beginnings.
10:06But what happens after treatment ends has until now remained largely undocumented in the country.
10:13What happens when they make it with recovery rate at 94%.
10:18Parents speak of the challenges they face.
10:21Doctors also advise on signs to look out for as far as cancer in children is concerned.
10:30Yes, mom.
10:34So, it was May, May end and she had very high fever.
10:41We went to many doctors, to Delhi, to NOIDA and to Delhi NCIS and reports were okay.
10:47And then I was going to office and I got a call.
10:51It was from the doctor.
10:53You take the child and take the child.
10:55There are some initial reports in the blood test and they are not looking very good.
11:01We were hopeful that things will be okay.
11:04Although we were a little bit disappointed that she was just three and a half years old when she got
11:09diagnosed.
11:16Amara was 3.5 years old when she was diagnosed with cancer.
11:21The diagnosis coming as a rude shock to her young parents.
11:25They found out about their daughter's cancer when they were least expecting that diagnosis.
11:31The child was being treated for symptoms of dengue when further investigations revealed that it was cancer that Amara was
11:40battling.
11:41When she was hospitalized for the last 10 days, she had cannula in her hands.
11:48Now, she had cannula in her breast.
11:51She was crying badly when we were in Kailash.
11:53She had blood transfusion.
11:55Her blood was very low.
11:58She had platelet transfusion.
12:01The doctor said that she had blood transfusion and then she would send it to her because the hemoglobin was
12:06very low.
12:07So, when she had cannula in her breast, she was crying so badly.
12:14We were asked to go out from that ward that no parents allowed her.
12:20And she was crying and we were crying outside.
12:24And we were like,
12:25you know,
12:26you know,
12:26she could,
12:26you know,
12:29she could say,
12:30And then she could die.
12:34She could die.
12:35I can't think of her.
12:44She could die.
12:49We have to stand strong with our child
12:52We could not show our child that we are weak
12:57Or that something is wrong
13:00Because she was also very small to understand all these things
13:05But then a real journey started
13:09We knew
13:12We knew
13:14We knew
13:16We knew
13:19We knew
13:20We knew
13:21We had us mentally prepared
13:24That we could start a lot in life
13:29And now
13:30The fight is our start
13:33So
13:35Then
13:37After 4-5 days
13:39She was also in shock
13:40The real battle who was fighting and who has been fighting is our daughter.
13:45After one and a half month, we have seen the strongest Amaira,
13:50who has come to us with this whole journey until we come here.
13:55Me and my husband are a very emotional person.
13:59If Amaira didn't come here, I couldn't talk to Amaira here for a long time.
14:04I couldn't talk about this whole time so easily.
14:07She has supported us from that day that I have to overcome this disease.
14:15This is something that happens. I don't want to ask my mom and dad.
14:18If they are not telling me, I don't want to go into the deep,
14:22that what is happening, there is something wrong with me,
14:24they are giving me the treatment, one day I will become strong.
14:28That was her attitude.
14:30We are learning how strong you can pass that bad path, rough patch.
14:47It's a total five year of journey when she will be, after five years,
14:51she will be free from this disease.
14:55But still, we are fighting hard and keeping our finger crossed
15:00that she will be back to her normal life very soon.
15:07Amaira is one among the many patients of childhood cancer
15:10that India sees year after year.
15:13The good news, though, is that it is highly curable in children.
15:20India's first large National Childhood Cancer Survivorship Program
15:25tracked children, 5,400 of them,
15:29who completed treatment in 20 centres across Mumbai, Delhi,
15:33Chennai, Kolkata and Bengaluru.
15:35The data from the period 2016 to 2024
15:39with a survival rate of 94.5%
15:43is clearly encouraging.
15:49Undoubtedly, when you talk about cancer in children,
15:52the outcomes are getting better.
15:54In every year, you see a rise in the number of patients
15:57which are surviving.
15:59The outcomes are close to 90%,
16:00which means we can cure more than 90% patients well.
16:03This doesn't mean that we will cure 90% of our disease.
16:07This means that if, let's say,
16:08we have got 100 patients of ALL,
16:10acute lymphoplastic leukemia,
16:1190 would be doing very well.
16:13And similar thing is applicable to other cancers as well.
16:17Provided you go to a correct place,
16:19you get treated at a correct time.
16:20The event-free survival at 89.9%.
16:23The survival rate two years after the treatment
16:26is at 98.2%.
16:31Doctors, however, say that survivors face a volley of challenges.
16:37The most common is blood cancer.
16:39The second most common is brain tumor.
16:40So anybody who gets chemotherapy or radiation
16:43can have growth issues,
16:45can have got endocrinal issues,
16:47can have got sterlity issues.
16:49So when we say sterlity issues,
16:51the patients, some patients, I would say,
16:53not everybody may not be able to produce children.
16:56Some patients may remain short-statured.
16:59Some patients may have endocrinal problems
17:02like diabetes, thyroid issues, and so on and so forth.
17:06So the long-term issues can happen in very few,
17:10but majority of them do well.
17:14What about the surge in cancer cases
17:16in children seen in India?
17:18With 60,000 cases seen year after year
17:22with leukemia, lymphoma,
17:24and central nervous system tumors
17:26being the most common cancers in children.
17:31Diagnosed cancer is picked up
17:32in a very early or a nascent stage.
17:35Then the ability to cure
17:36and eliminate the cancer from the body increases.
17:41And hence, timely diagnosis is very, very critical.
17:44So being A, more attentive,
17:46B, vigilant,
17:47C, improving the lifestyle of the child.
17:49I think these are very important factors
17:51that needs to be considered.
17:53Experts also stress on timely diagnosis
17:55and the need not to miss the early symptoms.
17:59Environmental pollution
18:00and parental lifestyle habits
18:02also play a role.
18:04Warning signs include repeated fever without reason,
18:07loss of appetite, weight loss, joint pain,
18:10headaches, abdominal pain, swollen lymphoma,
18:13and other such symptoms.
18:14Obesity is a chronic disease,
18:17not a lifestyle condition,
18:20is what top doctors are now arguing.
18:22A white paper shows a spiral in the cases of obesity
18:26by 2050 in India.
18:29Experts say there is a need now
18:30to change the narrative from it being
18:32a mere lifestyle condition
18:34because it increases sickness burden
18:37and needs a mass preventive strategy urgently.
18:41There's more.
18:43Obesity is not a lazy person's problem.
18:47Throw that argument out
18:49because once we change the way we look at obesity,
18:52we find solutions to the problem.
18:55Well, I'm not saying it.
18:56Doctors are.
18:57We have to refrain from using this term
19:00to call anybody who is obese
19:01as a lazy man disease.
19:03It is not.
19:04There are multiple medical reasons,
19:07genetic reasons,
19:08neurohumeral reasons.
19:10Most of the gene mutations are in the brain.
19:12So it is not lazy man disease.
19:14It is so many reasons for obesity are there.
19:18I will not use word lazy man syndrome
19:22to define somebody who has got obesity.
19:25Obesity should be considered a chronic disease,
19:28they say.
19:29It involves abnormal biological processes
19:32as a result of which it causes health problems.
19:35Obesity has clear diagnostic criteria
19:38and requires medical therapies
19:40and long-term management.
19:42Any person who has a BMI,
19:45that is body mass index,
19:46of more than 25 or less than 30
19:49is called as overweight.
19:51Anybody who is more than BMI of 30
19:55is considered to be obese.
19:57And as per the BMI,
19:58if the BMI goes more than 40,
20:02it is considered to be morbid obesity.
20:04A white paper now says
20:06that India's obesity rates
20:08are predicted to rise substantially.
20:11By 2050, the paper says
20:1317.4% of women
20:15and 12.1% of men
20:17will be living with obesity.
20:20Obesity in women
20:21is projected to be 10% higher
20:23than in men.
20:25Childhood obesity
20:26is the most worrisome
20:28as the prevalence
20:29in children and adolescents
20:30between ages of 5 and 19 years
20:32has gone up from 0.1%
20:35to 3.1% in girls
20:37and from 0.2%
20:39to 3.7% in boys
20:41between 1990 and 2022
20:44to a total of 12.5 million children
20:48and adolescents
20:49living with obesity.
20:52I am a firm member
20:54in this fact
20:56and this fact has been
20:58said by the Prime Minister
20:59also recently
21:00that obesity
21:01is becoming an epidemic in India.
21:04We have to act today.
21:06We can't wait till tomorrow
21:08to make any changes
21:09in our health policy
21:11to counter this
21:12menace of obesity
21:13in our population.
21:15If we go by the data
21:16approximately 23 to 25%
21:19of population
21:19is considered to obese in India
21:21and by 2050
21:23this population
21:24with obesity
21:26is going to jump.
21:27So in India
21:28the problem of obesity
21:30is going to cause
21:30a lot of many problems
21:31in future
21:32for our healthcare
21:33so we have to address
21:34this situation
21:35as soon as possible.
21:37Obesity is also now
21:39being linked
21:39to different kinds of cancers.
21:41pancreatic cancer
21:42urinary
21:43also colorectal
21:45this is now increasing.
21:47Elevated estrogen levels
21:49from body fat
21:50is leading to breast
21:51and uterine cancer.
21:53The WHO
21:54the World Health Organization
21:55has in the past
21:56many years ago
21:57included obesity
21:59in the list of diseases
22:00for example
22:02this happened
22:02in the year 1948.
22:04But what about
22:05acceptance of it
22:07as such?
22:07None.
22:08We still consider it
22:10a lazy man's problem
22:12or a woman's problem.
22:13What about the cost
22:14of this disease?
22:16The health costs
22:17of obesity
22:18are steep
22:19be it for knee replacement
22:20heart disease
22:22and cancer therapies
22:23that follow
22:23eventually.
22:25Tackling obesity
22:26is crucial
22:26as the economic burden
22:28is projected
22:29to increase
22:3017 fold
22:31by 2016.
22:32What about
22:33weight loss
22:34medicines
22:35or therapies?
22:36No doubt
22:36drugs like
22:37GLP-1 receptor
22:38agonist
22:39have proven
22:40effective
22:41but their high cost
22:42and sustainability
22:43continue
22:44to be a concern.
22:46The popularity
22:47of zero
22:48low sugar drinks
22:49in India
22:50has surged
22:51to a record high.
22:52In fact
22:53sales for the market
22:54leader
22:55doubled last year.
22:56What really
22:57is driving
22:58this massive boom
22:59of zero
23:00low sugar
23:01coke
23:01in India?
23:03Well
23:03they're being marketed
23:05as we know
23:05as something
23:06which is healthier
23:07a healthier version
23:09of these soft drinks.
23:10People think
23:11that these products
23:12are safe to consume
23:13but are they really?
23:16What are the things
23:17that you must know
23:18if you are in love
23:20with your can
23:20of diet soda?
23:22Take a look
23:22at this report.
23:29The boom
23:30in zero
23:30diet sodas
23:32of soft drinks
23:32in India
23:33is impossible
23:34to ignore
23:35right now.
23:35Sales of zero
23:36sugar variants
23:37especially from
23:38market leaders
23:39like Coca-Cola
23:39have reportedly
23:41doubled
23:41in the past
23:43one year.
23:44Everywhere you go
23:45you'll see
23:45zero
23:46no sugar
23:47or diet bottles
23:48flying off shelves.
23:49So what's really
23:50driving this surge?
23:52Well
23:52the popularity
23:53of zero
23:53and low sugar
23:54drinks in India
23:55has surged
23:55to a five year
23:56high in 2025
23:58and this trend
23:59marks the emergence
24:01of a major
24:02market segment
24:03from what was
24:04once actually
24:04considered
24:05an urban fad.
24:07well there is
24:08one brief
24:09that if it has
24:10zero sugar
24:11and zero calories
24:12it obviously
24:13would be healthier.
24:14Isn't it?
24:15Isn't that what
24:15you think?
24:16But here's the
24:17real question.
24:18Are diet drinks
24:19actually healthy
24:20or are we just
24:21swapping one
24:22problem for the
24:23other?
24:24What's actually
24:25inside a diet
24:26soda?
24:27Let's tell you
24:27a little more
24:28about that.
24:29Zero calories
24:30doesn't mean
24:31zero impact
24:32of artificial
24:32sweeteners
24:33like aspartum
24:34which is
24:35200 times
24:37sweeter
24:37than sugar.
24:39They intensely
24:40activate your
24:41brain's sweet
24:41receptors
24:42often more
24:43strongly than
24:44regular sugar
24:45does.
24:45Your body
24:46expects calories
24:47to follow that
24:47sweetness.
24:48When they don't
24:49it can
24:50increase cravings,
24:51disrupt appetite,
24:54confuse hunger
24:55regulation.
24:56Some research
24:57is linking
24:58frequent artificial
24:59sweetener intake
25:00with weight gain
25:01and higher risk
25:02of type 2
25:03diabetes.
25:04Not because
25:04it contains
25:05sugar but
25:05because of how
25:06they affect
25:07metabolism and
25:08insulin response
25:09over time.
25:10The insulin and
25:11metabolism confusion.
25:13Let's tell you
25:14about that.
25:15Well even without
25:16sugar, real sugar,
25:17sweet taste can
25:18trigger insulin
25:19release in some
25:20people.
25:21Insulin is your
25:22fat storage hormone.
25:24Repeated spikes may
25:25encourage fat
25:26storage, especially
25:27belly fat, slow
25:29metabolic efficiency,
25:30increase hunger
25:31shortly after
25:32drinking.
25:33So while you're
25:34saving calories on
25:35paper, your body
25:37may be reacting
25:38very differently.
25:39Many diet sodas
25:41are high in
25:42caffeine.
25:43Excess caffeine can
25:44raise blood
25:44pressure, increase
25:45stress hormones,
25:46disrupt sleep, cause
25:48dehydration, leave
25:49you feeling wired
25:50than exhausted and
25:52that cycle can
25:53increase cravings
25:53of more caffeine or
25:55sugar later in the
25:57day.
25:57Acidity and tooth
25:58animal damage.
26:00Diet sodas are
26:01acidic.
26:02Remember that over
26:03time, acidity can
26:04erode tooth animal
26:05leading to sensitivity,
26:07cavities, weakened
26:09teeth even without
26:10sugar.
26:11Acidity alone can
26:12harm dental health.
26:14Phosphoric acid is
26:15commonly used in
26:16sodas.
26:17High phosphorus intake,
26:19especially without
26:19adequate calcium, may
26:21affect bone mineral
26:22balance, contribute to
26:24bone weakening over
26:24time, add stress to
26:26kidney function in high
26:27quantities, also the
26:28same compound used
26:30industrially for
26:31removing rust and
26:32mineral deposits, which
26:34should make you think
26:35twice.
26:37Gut microbiome
26:38disruption.
26:39Research suggests that
26:41artificial sweeteners
26:42may alter gut bacteria,
26:44since gut bacteria
26:45influence blood sugar
26:47regulation, inflammation,
26:48metabolism disruptions.
26:50Here, this could
26:51contribute to metabolic
26:52issues in the long run.
26:54So, are diet drinks
26:57better than sugary
26:58ones?
26:59Well, they do eliminate
27:00sugar and reduce
27:01calorie load, which can
27:03help in certain
27:04contexts.
27:05But, it's not a free
27:06pass.
27:07Replacing sugary soda
27:09with diet soda may
27:10reduce immediate sugar
27:12intake, but it doesn't
27:13really automatically
27:14improve metabolic
27:15health.
27:16It may increase
27:17cravings, it can
27:18reinforce sweet
27:19dependence, it doesn't
27:20nourish your body.
27:21It's a trade-off, not
27:23a health upgrade.
27:25Real health usually
27:26comes from reducing
27:27overall dependence on
27:29ultra-sweet beverages,
27:31not just replacing
27:32sugar with artificial
27:34sweeteners.
27:35Well, the report
27:36brings us to the end
27:37of this edition of
27:37Health 360.
27:38We hope you enjoyed
27:39watching the show as
27:40much as we did, putting
27:41it together for you.
27:42All of these reports
27:44are found on India
27:44Today's website, that's
27:45indiatoday.in.
27:47Also, our social media
27:48platforms carry these
27:49in-depth reports on
27:50health and wellness.
27:52Our hashtag is
27:53Healthy60, Healthy60+.
27:55Do not forget to
27:56like, subscribe and
27:58share.
27:58Until next time, take
27:59very good care of
28:00yourself.
28:00Thank you so much for
28:01watching.
28:02Bye for now.
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