‘Look Ma your daughter is on a TIME 100 list’
Proud to share that I &
@Ptisile
are on this year’s
@TIME
list of 100 emerging leaders globally, who are defining the next generation of leadership–
#TIME100Next
. We share the honour with
@ImHarmanpreet
💪
I was in Oxford when Rashmi had to resign for inappropriate remarks around certain communities.
And the fact is: the President elected after her was a Hindu & the Vice President elected along with her was an Hindu as well
What doesn't kill you only makes you stronger!
At 22 years of age, as the first Indian Female President of the Oxford University Students Union, my historic election victory rapidly transformed into a distressing nightmare of bullying, harassment, & threats. It was declared that
(1/n) I am overwhelmed to inform you that I’ve been awarded Chevening - Weidenfeld Hoffmann Trust Scholarship to pursue Masters of Public Policy from
@UniofOxford
, starting this month. (PC:
@Ninjav281
).
‘Sometimes people with the WORST pasts can create a better future!’🙂:')
We did it! In a landmark verdict, the Indian Patent Office rejected Johnson and Johnson’s patent application that would have extended the monopoly on key anti-TB drug
#Bedaquiline
!
@ptisile
and I – both of us TB survivors -- had filed pre-grant opposition against the application
I cannot believe I *may* actually see a day where a person with TB won't lose his/her hearing one fine day in the hope of getting cured! So many of us walked the path of absolute fire to get to see this.🥲
Some important development here! 👏✨
@StopTB
has invited tenders for generic prod of BDQ to be provided to LMICs.
"J&J has granted licenses to tender, procure & supply generic versions of
#bedaquiline
for the majority of LMICs, including countries where patents are in effect".
(1) In 2013, I had to halt my studies as tuberculosis knocked on my door a second time, wreaking havoc like no other. Many felt my path had come to a dead-end.
I received the final grades for my Masters
@UniofOxford
. I've been awarded *Distinction* – highest grade possible 🥲
Is this one of the biggest advocacy wins in recent decades?
In its latest press release, J&J confirms it won't enforce secondary patents for bedaquiline in any of the 134 low- and middle-income countries!
With great power comes great accountability, esp in a hugely diverse student community, and Rashmi had failed to recognise that. Anyone who contested her claims was viciously trolled incl Ox students.
How are publications of half-baked novels allowed? Don't publishers do any fact-checking or speak to everyone involved? Here is
@AnveeBhutani
, the Hindu woman elecred after Rashmi tweeting about it.
When Rashmi resigned, I ran, was elected, and served a successful term as an Indian Hindu President of Oxford University Students Union.
Racism exists in Oxford, but Rashmi was not bullied because of her race, religion, or nationality. This novel propagates a false narrative.
April 2014: An absolutely frail, diminutive me, sprawled on a hospital bed after my 6th surgery, watched fellow Mumbaikars on TV cast their vote, unsure if I would even see the next LS elections!
April 2019: I cast my vote at Thane. :)
#MumbaikarVoteKar
#Mumbaivotes
#Govote
(7/n) (6/n) On a personal note, my father’s reaction (a man of few words) to my scholarship sums up the mood: "Your life remains a mystery to us! Nobody in our 'entire' family has gone thru what you have, but no one has also managed to achieve the things you have" :)
Some important development here! 👏✨
@StopTB
has invited tenders for generic prod of BDQ to be provided to LMICs.
"J&J has granted licenses to tender, procure & supply generic versions of
#bedaquiline
for the majority of LMICs, including countries where patents are in effect".
#Diabates
is India's ticking health time bomb. A recent
@ICMRDELHI
study showed tht a staggering 10 cr Indians are diabetic & 13.6 cr hve pre-diabetes. Sales of diabetes drugs r soaring even as cost of care remain high. Is there a way out? Full piece:
This video by
@johngreen
@sportswithjohn
and all the memes being shared has gone viral for all the right reasons!
@Ptisile
and I will be the gladdest if the drug reaches all of the 66 LMICs *on time*. We wouldn't want anyone else to go through what we had to!
In just 22 hours, 578,000 people have watched this video about Johnson & Johnson's pursuit of secondary patents for bedaquiline and how this will lead to millions being unable to receive curative treatment for tuberculosis.
#PatientsNotPatents
@JNJNews
Happy to share that I've begun the final component of my MPP degree with a Summer Project with
@LSHTM
! I'm researching on *vaccine hesitancy* with Prof
@ProfHeidiLarson
. Thank you for this opportunity! :)
"I cannot hear you today. But I will make sure you hear me, loud & clear!” Link to my complete speech at the
#UNGA
High-level Meeting on Tuberculosis. It starts from 44.20 minutes. Do watch, share and comment.
#UNHLM
@ddgtb2017
#thread
Rhea & me are very thankful and proud to announce that we’ve won the ‘Voices for Diagnosis’ Prize by Geneva’s
@finddx
for our work in supporting/mentoring/guiding fellow TB/drug resistant TB patients under the aegis of ‘Bolo Didi’.
#womenleaders
#womeninGH
Glad to walk the red carpet at the
#TIME100Next
gala in New York tonight (24 October). Conversations with an interesting and inspiring bunch of honorees, with a performance by
@KelseaBallerini
#Budget2023
raises the bet on capex spending but has this come at the cost of welfare spending?
The
#PlainFacts
team has rolled out a bumper budget page that lays out the key budget trends in 9 charts. Check out our labour of love! ✨
@livemint
Dear friends from the Indian media, can we avoid using words 'cases' and 'burden' while writing about
#Covid_19
outbreak, instead use 'patients' and/or 'persons with coronavirus'? These are real humans coping with the disease. I say this as a survivor of a big infectious disease
In some worrying developments, diagnosis of fresh tuberculosis patients to a near-total halt due to the lockdown.This is despite the Union health ministry sending a directive to states to not stop TB elimination programme, I write.
#COVID19outbreak
(1)
(2/n) This was me, couple of yrs back, fighting hard for my life against an infectious disease– Tuberculosis. Its only stories & nos. until it hits you!
The sudden hearing loss (due to an inj) that happened mths later felt like the final nail on the coffin
Guzzling down your favorite packaged orange/mango drink(s) or buttermilk to beat this awful heat? Check the labels once as many of them have worrying levels of salt/sugar, shows our analysis of 27 such popular products.
Pleased to be the Keynote speaker at the 50th Union World Conference on Lung Health at Hyderabad in October. I hope to adequately & ably represent the millions of TB survivors in India & globally.. ✊
@UnionConference
#UnionConf
#lunghealth
@SumitraRoyTOI
How do you deliver a v.special Bharata Natyam performance, in front of 2000+ audience, unable to comprehend the music you are dancing to?
Pic 1: I wrote down the interpretations of 'mudras' in the recital, number counts & MEMORISED them
I danced!
#Throwback
#LateralThinking
🙂
We did it! In a landmark verdict, the Indian Patent Office rejected Johnson and Johnson’s patent application that would have extended the monopoly on key anti-TB drug
#Bedaquiline
!
@ptisile
and I – both of us TB survivors -- had filed pre-grant opposition against the application
(5/n) The unfolding Coronavirus pandemic – over 60k lives lost, 1 cr job losses – should be a BIG wake up call for everyone to strengthen our healthcare systems. Remember, a health crisis is never restricted to health.. It heavily impacts social, economic and mental well-being.
#BreakingNews
@WHO
announces critical changes to TB treatment. Calls for expanding access to latest drug Bedaquiline as part of standard MDR TB treatment and reduce usage of injections that make people DEAF. What a day for all survivors!🙂
Chuffed to receive the ICICI Bank Advantage Women Award. Out of the 19,000 entries, across ages, states and professions, the bank got, thankful to have won the 3rd place.🙂 25 women were awarded in total. Remarkable stories!
#LongJourney
#FundYourOwnWorth
A boy suffering from MDR-TB in Dharavi, son of a vegetable seller, contacted me & informed that he has NEVER received Rs 500 promised by Govt and on top of that, they have stopped critical food rations, for the whole ward!! This is atrocious.
@ddgtb2017
#falsepromises
#bolodidi
Watch this super video by
@sportswithjohn
on
#Bedaquline
as the primary patent expires today.
(A friend, who is a self-confessed fan of 'The Fault in Our Stars' novel, excitedly sends this video pointing out that I and
@Ptisile
feature in it!) 😄
Johnson & Johnson (
@JNJGlobalHealth
) is unjustly extending a patent on a life-saving tuberculosis drug. Today's the day for them to realize denying MDR-TB patients treatment is not worth the harm they're causing to core brands like Tylenol and Neutrogena.
(4/n) On one my OPD visits, I clearly remember telling a doctor, ‘Who needs wars, guns, bombs, when an unseen bacteria is enuf to ravage lives’. Little did I know that my words will turn out to be prophetic, this year!
(3/n) ‘Normal life’ was a distant dream, as for yrs, I could see nothing else but pain, isolation, fights & failure, with my professional & personal dreams falling apart.
Parallely, a terrifying financial crisis developed in the fam, due to high out-of-pocket medical expenses.
Nandita (along with
@Ptisile
) helped lead the charge to fight the bedaquiline patent extension in India.
She lost eight years of her life and her hearing to MDR-TB. So many others have lost their lives. Watch her speech at the UN five years ago:
THANK YOU
In this week's 'Pen Drive' column for
@livemint
,
@priyamliz
and I give a ringside view of why we challenged and won against J&J's patent extension application for TB drug
#Bedaquiline
and the implications of Patent Office's ruling.
@StopTB
Next up is to ensure generic manufacturers with strict adherence to GMPs and who pass the quality test are allowed to scale up production. In the hope all this happens in a transparent manner.
@StopTB
Friend to me, in-person, two days back (in full seriousness): "Never get married! Good that you are single, BEST decision!!"
Same friend on Instagram, a short while back: "Happy
#Valentinesday
Hubby!! Love you so much ♥️♥️
#ValentineForlife
..."
🤔🙄🤷
Many Indians use artificial sweeteners as a substitute for sugar to indulge their sweet tooth, as they have little-to-no calories and are also seen as aiding weight loss. However
@WHO
handed out some not-so-sweet news abt them. What's the buzz about?
#TBThursday
#TBT
To every TB/DR-TB survivor fighting out the back-breaking battle and felt like giving up at any given point of time, this is the single line that kept me going thru it all not-so-long ago. Sharing is caring.
#WorldTBMonth
We are in the middle of a heated debate on efficacy of masks for protection from
#Covid19
, and then I see THIS 👇 "I just saw that people were making masks on Facebook, and I was like, what about the deaf and hard of hearing population?"
#accessibility
It was an absolute honour to be nominated among Keble College's most 'inspirational alumni' and to see this portrait go up in the Main Hall! Thank you
@KebleOxford
for this throwback from last year 🙂
#PortraitFriday
@BlavatnikSchool
Nandita cherished the opportunity to interact and learn from people from different backgrounds than hers and is grateful to Keble for making efforts to be inclusive for persons with disabilities.
@nandita_venky
(MSc 2020) 📷
@FranMonks
#PortraitFriday
Quite an honour! Thank you
@StopTB
for featuring my UN-HLM speech in your Executive Director's Report..🙂 Onwards and Upwards! Pic credit:
@paimadhu
sir
India is facing a worrying shortage of TB drugs & Persons with TB are posting their challenges on SM on finding meds.
TB/drug-resistant TB is one disease that requires uninterrupted treatment else you risk developing more resistance. Pls do smthing
@ddgtb2017
@OfficeOf_MM
This month, people working there were only able to give medicine of 15 days due to the shortage of the medicines, on enquiring them now about the stock, they have asked me to purchase it from the market.
1) Humbled & honoured to address the United Nations General Assembly High-level Meeting on TB, on Sept 26, at the UN headquarters in New York. Close to 50 Head of States have confirmed their attendance till date. You can read the final agenda here:
#Thread
Late last night, WHO announced further critical changes to drug-resistant TB treatment. It has called for phasing out injectable regime *altogether*, including for shorter 9-month regimen. Replace injections with oral Bedaquiline is the clear msg... (1/n)
'Nothing about us, without us'. Why must patients be consulted and need a place on the decision making table URGENTLY. Case in point: J&J hip implant committee & the recently-formed TB panel.
Pls read our Edit piece in today's TOI
@AnantBhan
Such an honour to meet
@paimadhu
Sir! Thank you for your generosity with time, your kind words for my time at Oxford and all the wisdom and exchanges around health and improving TB care. 🙏
Press coverage of our pre-grant opposition, with front page coverage in TOI, The Hindu and HBL. A win for persons with TB and one that should lead to faster access to shorter/less-toxic drug regimens.
#WorldTBDay2023
We did it! In a landmark verdict, the Indian Patent Office rejected Johnson and Johnson’s patent application that would have extended the monopoly on key anti-TB drug
#Bedaquiline
!
@ptisile
and I – both of us TB survivors -- had filed pre-grant opposition against the application
In late 2015, a journalist started sending sexually suggestive msgs for a month, in the pretext of writing a "story" on me & helping me find a job. Finally backed off. Unemployed for 4 yrs, financial crisis, & a low self-esteem -- my hands were tied to take any action.
#metoo
"I've to admit that for the longest time I only felt cheated. But I realized that I couldn’t sit and feel sorry for myself... Complete strangers have told me how my work inspired them to rewire their goals." - Thank you
@dwnews
for this warm interview :)
At the end of a near hour-long 'Guidance Session' over WhatsApp, with a
#tuberculosis
survivor, the person sent me this msg as s/he welled up... You know, as they say, truely 'some relations do not need a name tag!' God Bless you 😇
#MadeMyDay
Video of my full
#keynote
speech @ MSF Scientific Day is up! Do watch. Its important to start a conversation & move towards tangible action. Also watch out for some EXCELLENT analysis towards the end by Dr Lalit Anande of
#Sewri
TB Hosp
#MSFsciSA
@jencyjac
@IndiaToday
Same thoughts! There is nothing 'explosive' or 'scandalous' about these conversations. Who leaked these pvt conversations? Horrible to see how the channel (with all the images and gfxs) is trying to feed into a pre-disposed and set narrative.
STOP these disgusting comparisons of
#TelanganaPolice
to Singham and Dabangg.
Indian women's lives are not a 3-hour Bollywood film to be relished with popcorn, to satisfy your collective macho bloodthirst!
#HyderabadHorror
The only person who deserved the standing ovation she got is
@nandita_venky
: TB survivor, journalist at
@EconomicTimes
.
She turned deaf from TB drugs.
That hasn't stopped her from learning the piano and getting back to dance. Love it! All my standing applause and respect!
If you know someone dealing with mental health issues, do NOT mock, be judgemental. Be an empathetic and a patient listener. Connect him/her with peer support groups.
~ Sincerely, from someone who overcame acute Depression in the recent past.
#SushantSinghRajput
@netshrink
I must thank my
@BlavatnikSchool
professors
@Mar_tinW
@jblabonne
for introducing me to the wonders of understanding evidence in policymaking that sparked my curiosity about data journalism!
This comes even as South Africa's competition watchdog has launched an investigation over bedaquiline drug prices. SA has been facing public pressure ever since the verdict in India that quashed J&J secondary patent application.
An aspect of TB that needs more discussion and examination. Is life really 'back to normal' post TB? What efforts go into attaining that? What about lost employment, compromised organs and stamina in MDRTB? Add to that, disability!
#lifeaftertb
The most optimistic news on TB in a long time!✨ All the advocacy by survivors, advocates researchers could bear fruit. "TB vaccine within reach after $500m pledge to run final trials"
@newtbvaccines
@TAGTeam_Tweets
@StopTB
If only it were this simple. Depression is not a choice or decision that someone makes- it is a medical condition that is treatable by medical professionals. Please don't compound the issue by blaming the person suffering from depression.
Won the 'Alumni of the Year' award at IIMCAA 2019, and trust, the feeling of getting awarded by your alma mater is unparalleled! :) Pls apply
@RiteshIIMC
@souravmishra1
@dtripathy
Tune in to the Opening Ceremony NOW of the 50th Union Conference on Lung Health. I'll be soon delivering the address on behalf of all fellow TB survivors and will also give a Bharata Natyam performance exemplifying the strength shown by us.
#UnionConf
Due to
#Covid19
crisis, National Association for the Blind, Delhi, doesn't have enuf funds to continue its activities to support 250 blind orphans, 80 deaf-blind children. They've put out this EMERGENCY FUNDS appeal.
PwDs are among the worst affected currently. Pls RT & donate🙏🏼
It's
#WorldHealthDay
tomorrow.
@shuja_asrar
and I give a status check on Indian healthcare and a lowdown on the key challenges that lie ahead - we still have v low organ donation rates and threat of superbugs is real!
@shahid_siddiqui
thank you sir for speaking up. Many Politicians have mocked persons with disabilities since a long time now, but when a comment comes from someone holding the highest office, it's disheartening to say the least, as a PwD myself!
#noshame
#nostigma
My daughter Tania is a special person and I am proud of her,she is doing her best to coop with learning disabilities& I won’t allow anyone to look down upon her,however exalted that person may be. I fought for the rights of differently abled as a MP & continue to do so
(1/3)
#Art
can be THERAPEUTIC for patients with a prolonged illness, including MDR-TB.
Pic1: A positive painting by a brave MDR-TB patient I’m guiding. Some have taken to poetry!
Pic 2: MDR-TB patients use music to cheer patients at Sewri TB hospital -- Good piece
@lata_MIRROR
The Declaration aims at empowering people affected by TB to claim their human rights. A document that EVERY tb survivor/person affected by TB must read to know his/her rights while accessing care. Pls share it widely. I am sharing it among the survivors I'm guiding!
Many survivors (some I personally know) from High burden countries, had their visa rejected to attend the Conf. Hopefully that won't happen, with India set to host it next year.. Time to elavate our voice!
#unionconference
A misleading post!
Yes, the post by
@UniofOxford
academic was not in good taste. But as a present student of the Univ, I can say that her faith was NEVER a matter of discussion during the elections! Many students wanted her to step down as they were nt satisfied with her apology
INSANE! Rashmi Samant the 1st Indian President of Oxford SU stepped down bcz she ws bullied,abused for being a Hindu and also for old random posts. What's worse a faculty in Oxford attacked her parents for a lord Sri Ram DP while accusing her of being funded by PM
@narendramodi
Pleased to be invited as a
#KeynoteSpeaker
at MSF Scientific Day (South Asia) on July 16, where I will shed light on the travails of surviving TB in India, deriving key lessons from mine and others' experiences.
#Survivor
#MSFsciSA
~Thank you
Stunning numbers. 5L ppl develop drug resistant TB, but only 80,000 manage to get cured. Young ppl lost in between to an inept system, late diagnosis, horrible drugs/side effects, lack of info, support. And then, we blame the patient for "not completing the treatment"!
Unacceptable numbers! Currently, 1 in 4 individuals with drug-resistant
#tuberculosis
worldwide receives treatment, and only an estimated 1 in 7 are successfully treated.
What next? A saccharine 'biopic' on
@BeingSalmanKhan
where his car crash will be blamed on his breakup with
#AishwaryaRai
, and his violent behaviour towards his GFs and unprofessionalism papered with "oh, he has a heart of Gold and Being Human!" WTF.
@annavetticad
My period in the ICU during my 90-day long hospital stay when I'd contracted TB was one of the most traumatic phases. Cut off from loved ones, my mother was allowed to see me for just 15 mins. Seeing her tho made the world of diff. I hope things change.
#HospitalsTalkToLovedOnes
Loved ones usually represent the social support system of the patient.
They should get included into hospital stays, for the benefit of the patient and the loved ones.
Please
#HospitalsTalkToLovedOnes
& include them🙏
Thank you for sharing
@SonaliVaid
🙏
#retweet
if you agree💪
India’s big organ hunt: Why is
#organdonation
still so rare in India? Bureaucratic procedures, cumbersome low awareness keep donors away. Wrote about this in
@ETPrime_com
.