Phumeza Tisile 🏳️🌈
@Ptisile
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TWO WOMEN VS ‘BIG PHARMA’ TO FIGHT TB.
In 2010 – I wasn’t given a choice. It was either I die or go deaf
@nandita_venky
@AmyZinGreen
@johngreen
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Proud to be included in the 2023
#TIME100NEXT
list
@TIME
please correct the spelling of my name 🙃
Nandita Venkatesan and Phuzema Tisle on 2023 TIME100 Next!
@TIME
Thanks for your amazing TB advocacy
@nandita_venky
&
@Ptisile
🙏🏾🙏🏾
cc
@johngreen
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The J&J patent application being challenged is for the salt form of bedaquiline—the first-ever challenge against a TB drug patent in India.
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“TB Proof members Peter and Phumeza joined other TB Activists at the End TB rally at
#TimesSquare
NYC this eve of the
#2023TBHLM
. Together sending a powerful message of “nothing about us, without us”
#policieswithpower
#endtb
#UNGA2023
#UNHLM
” -
@TBProof
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#PatientsBeforePatents
Bedaquiline for all!!
@nandita_venky
An even better question: Why is Johnson & Johnson enforcing secondary patents on bedaquiline, thereby ensuring many people who need the drug can't get it?
TB is infecting more people partly because you're denying access to treatment by trying to make your patent last forever.
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The Indian Patent Office rejected Johnson and Johnson’s patent application that would have extended the monopoly on key anti-TB drug
#Bedaquiline
!
@nandita_venky
and I filled the pre- grant opposition against… 🇮🇳
#UniteToEndTB
🇿🇦
#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
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A dream deferred 😊 cause TB... now covid19 made sure to make this one memorable by not being able to 👩🎓
#UCTGrad2020
🎓
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🚨 Please join the panel discussion today where TB Activists Phumeza (I) and Nandita will have a talk with John Green on why TB tests and medicines shouldn't be a luxury. …Join at 16:00 CET/10:00 ET/14:00UCT
#PeopleOverProfits
Tomorrow morning at 10 AM eastern, I'll be speaking live with some of my heroes about Johnson & Johnson,
@DanaherCorp
, and the future of tuberculosis testing and treatment. Join us:
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as someone who survived XDR-TB and went deaf while on the treatment, I fully support: "Tuberculosis needs political prioritization"
#EndTB
@govchatsa
@ygpillay
#SONADebate
Tuberculosis is a preventable and curable disease yet: "South Africa is one of the countries with the highest burden of TB, with the World Health Organisation (WHO) statistics giving an estimated incidence of 454,000 cases of active TB in 2015"
@WHO
#SONADebate
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#HearingLoss
not from Tuberculosis but from the drugs used to cure TB. In 2010 I lost my hearing too, 2018 Khumbulani is subjected to the same thing whereas there’s alternative treatment
@TBProof
16-year-old Khumbulani Shandu cannot hear a sound and cannot see well enough to read, as a result of the treatment he has been taking for MDR-TB.
#StepUpforTB
Watch Video:
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“Ten years ago when drug-resistant TB patients were being blamed for their condition it was unheard of for a patient to raise their voice...”
Today MDR-TB survivors (like
@Ptisile
) don’t feel ashamed to say they want a less toxic, shorter treatment, & to demand that their basic rights are respected. via
@TC_Africa
@MSF_access
@endTB
@JoanneLiu_MSF
@msf_tb
@TBProof
cc
@ygpillay
@ZameerBrey
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#JNJCanYouHearUs
?
@JNJCares
didn’t develop TB drug bedaquiline alone and should not alone be deciding who can and can’t get access.
It’s time to drop the price.
@JNJGlobalHealth
#NoMoreTears
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"Heads of State, I may not hear you today (as TB has made me deaf) but I will make sure you hear me" says
@nandita_venky
at
#UNHLMTB
Absolutely brilliant!!!!
#HearingLoss
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@NjugunaMakau_
@TBProof
@WACI_Tweets
Totally agree, it’s the shame and how TB is still perceived as a “poor man’s” disease. Any one can get TB, anyone who breathes can get TB.
#tbproof
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T1: Quality TB Care for me would be putting a patient at the center of care. Patient as this stage should be treated as a human being rather than a ‘case’ and/or statistic. High quality of care that is accessible, affordable and available for all
#tbproof
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'I didn't plan to be an activist' : perspectives on tuberculosis care from six survivors | Speaking of Medicine
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Patient support care? We should perhaps involve patients in decision making? We do not like to be called "cases" and "suspects"
#UnionConf
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Proud to be included in the 2023
#TIME100NEXT
list with
@nandita_venky
Phumeza
@ptisile
Advocacy Officer at TB Proof & Nandita are on TIME’s “Next 100” influential people - so richly deserved!
#TIME100NEXT
#UseMyVoice
to
#EndTB
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I'm glad that
@TBAlliance
has a regimen that consist of no injection! Hearing loss destroys lives. Ask me I know
@TBProof
@ingridsuidA
Fighting to death to defeat death: Story of courage & steely resolve of
@Ptisile
who survived
#XDR
#TB
:
#UnionConf
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@TBProof
T1 As a TB survivor I have seen how personal stories can influence change, we need more lived experiences- more voices in order influence those who are in power
#tbproof
#InvestToEndTB
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T1: Community-led monitoring is a technique that is initiated by community-based organisations, no matter how big or small. This then helps to involve the commnuities and to have the community at the centre of change.
#SATB22
#TBHIVCARE
T1: How would you explain community-led monitoring of health services to someone who has not heard of it?
#TBHIVCare
#SATB22
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T2: tricky question, but I would say the lack of patient centred approach. We talk about it, but in reality it is barely in use. We want timely and adequate diagnoses but it is not always the case.Patients still have to wait for high quality of care, 💊 and ✅ diagnosis
#TBProof
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This World TB Day (24th March), I asked 15 TB survivors in 9 countries about their reactions to this huge setback to global TB elimination. I asked them how we can get back on track, and what changes they would like to see in the fight against TB.
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@TBProof
@StopTB
@Auruminstitute
CT:
#InvestToEndTB
what TB needs is money and it needs lots of it
#tbproof
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"Yes, I am thankful that the disease did not kill me, but it did leave me DEAF!" -
@nandita_venky
I relate...a brilliant film!!!
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Met with other excellent Civil Society Organisations who re advancing healthcare in Africa and beyond. 🇳🇬 🇰🇪 🇿🇦
#IQVIAAfricaSummit
🌍🌎🌏
Phumeza is proudly representing TB Proof at a high-level summit in Kigali. Dr. Michel Sidibe, the African Union Special Envoy for the African Medicines Agency (AMA), is also in attendance. 🌍🔬
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Help stop the world's deadliest infectious disease! Tell world health leaders to
#StepUpforTB
@MSF_access
@StopTB
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T2: Community-led monitoring shows patients experience as it is. At
@TBProof
we have found out that Stigmatising Metaphors are a problem and this type of data is never included in health systems type of data.
#SATB22
#TBHIVCare
T2: Why do we need community-led monitoring? Why is health data from the health system, not enough?
#TBHIVCare
#SATB22
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@reniercoetzee
@TBProof
CT: stigmatizing language, when a TB survivor tries to correct you, listen and learn. It’s not TB cases but rather people living with TB. Do not fight it by saying it’s a term used, and that you are used to it. LISTEN, LEARN, RESPECT and APPLY it is that easy
#tbproof
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Nothing about us, without us: When critical medical decisions are made, patients must have a seat at the table. Brilliant
@nandita_venky
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“Why is anti-Blackness so widespread? Historically, and even today, every aspect of global health is dominated by rich nations in the Global North. The health of Black people in Africa was never a priority for countries that colonized and exploited the continent…”
Please read & share this important article
From colonial days to date, anti-Blackness persists in global health
We devastating consequences
@CKyobutungi
@daktari1
@DrSam_Oti
@mcwangari
@EvelynGitau
@pksiema
@flosips
@aphrc
via
@PLOSGPH
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Love this
@nishantachavan
#TBProof
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@TBProof
T2: COVID-19 tried to ‘lighten’ the mood with the normalization of wearing face mask. Pre-covid19
@TBProof
had a campaign called
#UnmaskStigma
, to make it less shameful to wear a face mask, it’s acceptable no questions asked
#TBProof
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'Can we achieve Social Protection without Universal Health Coverage?'
@TBProof
@ingridsuidA
@ruvandhi
Phumeza Tisile: "Can we achieve Social Protection without Universal Health Coverage?"
Join our conference on
#SPARKS2020
#SPARKS
#SDGs
#Health
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T5: TB Champions should be at the forefront… they are very vocal 🗣 and very helpful when it comes to support, as they understand how it feels to be on the ‘other side’ of care.
#tbproof
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@TBProof
@Auruminstitute
@StopTB
T2 Ask Covid how did it manage to get more vaccines in a short period of time, whereas TB vaccine is 100 years old. Grateful though by the normalization of mask-wearing 😷
#tbproof
. Please
#InvestToEndTB
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The outbreak is shifting gears quickly from Stage 1 (Imported Cases only) to 2 and 3 (Local and Community Transmission), racing from wealthy travellers, flush with resources, to those who labour under persisting inequalities, breathing fresh death into modern colonialism.
We call on all South Africans to join us as we pledge to put the ‘(YO)U back into UBUNTU’.
This means we pledge to open our homes to employees who live in more crowded and dangerous environments as we all stop moving around...
#UbuntuPledge
#Covid19
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Hearing Day3, sound is a bit robotic but I can catch 90% of the conversation, too good!
#CochlearImplants
@TBProof
@Sophwoolley
@MSF_Press
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@Erika56028460
@TBProof
Judgement it the worst, being blamed, shouted at, made to feel inferior, the shame... it’s a long list
#tbproof
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“Now, neither the government is able to provide me with the medicines, nor are they available at the medical stores. If my wife dies, who would be held responsible for this crime,” asked Khan. He lives in the slums of Mumbai’s Antop Hill area
#2023TBHLM
#UNGA2023
#DrugStockOut
🇮🇳
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T3:key players would be our Community Health workers as they understand our communities well, alongside with those who are affected by TB. You cannot decide what is best for someone without discussing it with the affected person.Always include the patient in discussions
#TBProof
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@MSF_southafrica
it feels weird but good, not have have to drink those stinking lil horrible things in the morning :)
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@hcsmsa
T5.
#TBLeader
training where patients are empowered to advocate for change
@MSF_southafrica
#hcsmSA
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"On 23 August, we received phone calls from colleagues in Mumbai informing us that patients with Drug-Resistant Tuberculosis, or DR-TB, were inching closer to death because they hadn’t received their medication for nearly a month..."
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@breastlessAfrik
Hi Sis, I'm super great thanks! I hope you are good too. And Yes the world of sound is super great too!
@CochlearUS
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A carer’s pledge to offer patients an informed choice between a novel drug or an injectable for treatment of MDR-TB. TB patients should not have to choose between deaf or dead. Please sign the pledge
#HumanRightsDay
#WorldTBDay
#EndTB
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put care before 'control' and I agree TB services suck!!
#WorldTBDay
We need to put TB CARE before CONTROL. People aren’t hard to reach, our services suck!
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@palabragraciosa
thanks for sharing!
@philiplederer
@TBProof
@YvonneChakaX2
@jurgenspeters
check this out!
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@singh_jyotsna
@JNJNews
@JNJCares
@OtsukaUS
@otsukanc
@tkutadza
@ingridsuidA
Do you know if rest of conference will cater for people with hearing loss? Subtitles?
@UnionConference
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Back from the Brink: Young TB Survivor Turns Advocate in South Africa - Women & Girls Hub:
@SophCousins
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Karabo Rafube, TB survivor, ex-prisoner and priest. Speaking truth to power, giving us his personal testimony.
#TBRights
#Decrim4health
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@nandita_venky
@KelseaBallerini
Wow Nandita, you look absolutely stunning 🤩, and you were there for all of US! and I hope you had the best time mingling with other celebrities 😎
#Time100Next
.
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@tubercuLOLsis
@ingridsuidA
@MSF_access
@MSF_southafrica
@TBProof
Hi Kate
@tubercuLOLsis
the link for the short film is here ...the screening of the film and speeches thereafter where not recorded. :)
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Phumeza Tisile here in South Africa. TB Proof Advocacy Officer and an XDR-TB survivor
#tbproof
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Totally agree
@nandita_venky
#TBProof
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I pledge to be an advocate for social distancing amongst my friends, family and networks.
I pledge to stop moving around, unless a life depends on it, and avoid all gatherings.
#UbuntuPledge
#Covid_19SA
sign petition here:
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.
@oleshitemi
@Wanameme
.
@PhilipOgola
@WHO
We must stop referring to TB survivors as cases and suspects says
@Ptisile
#TBRights
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@Ptisile
National TB Ambassador and myself Provincial TB Ambassador
@HealthZA
@MondliMvambi
@CUTFM1058
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Please sign and share the Global Petition calling on the
@WHO
and other World Leaders to recommend
#Masks4All
. And remember to save medical masks for health workers and patients, please!
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Thank you
@HealthWishSA
, sharing of personal stories make it easier for others struggling with TB to know they are not alone
#EndTB
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Agree
@Stephenshikoli1
#TBProof
T4
#TBProof
i think its high time we engage TB Champions in service deliveries at the community level , provide resource for community members to support adherence while we respect Human Rights
@TBChampions_ke
@StopTB
@KELINKenya
@G_C_T_A
@realTBpeople
@MalarJames
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@jonathanjstillo
@shells1857
@ulickburke
@vandeveldewim
. I also use to take my meds with yoghurt. makes the taste less overwhelming.
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"...the damage was done and she would never hear properly again..." Better Deaf Than Dead?
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Phumeza Tisile. TB Proof’s research assistant and Advocacy Officer. XDR-TB Survivor
#TBHIVCARE
If anyone has already joined the chat, feel free to introduce yourself while we get ready to ask our questions!
#TBHIVCARE
#SATB22
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