🪡 India's NLEM is out. "Essential medicines are those that satisfy the priority health care needs of a population. They are selected with due regard to disease prevalence and public health relevance, evidence of efficacy and safety and comparative cost-effectiveness" says @WHO .
But where do disabled people and those living with chronic medical conditions fit in? There's no acknowledgement of the priority of life-saving and life-sustaining pharma needs of 15% of the population in the Essential Medicine List of either WHO / NLEM. Do minorities not matter?
Let's take #Desferal. This is included in the NLEM, (always has at a secondary and tertiary level), but presumably for mainstream medical cases of iron poisoning. What about iron chelation therapy for those who have transfusion dependent thalassemia with reaction to oral version
There is 0 knowledge about requirements of this population despite repeated shortages of this crucial life-sustaining drug for people living with transfusion dependent blood disorders.

At least here there's no program / targeted intervention - what about recent ART shortages?!
Sure, HIV funding is history, but there's still a programme. Some surveillance. And yet State procurement agencies cannot ensure last mile seamless availability of a vital drug within the State's own public health network?!
Domiciliary care is the starting point of public health
And nowhere is the requirement of those living with rare diseases reflected in this list of essential medicines. Unless there's an acknowledgement of the needs of this population, whether catheters for spinal cord injured or clotting factor for haemophilia or ART or medical food
...with what conscience can one declare these lists as 'essential' for a 'population'? They are NOT representative of the needs of an atypical minority at greater risk of death and further disability.

Do better @mansukhmandviya @doctorsoumya . Acknowledge, register and reach us.

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More from @DisabilityIndia

Jul 23
Good intentions, yes. Enthusiasm, yes. Awareness of law, no.

@policecbecity citywide clean sweeps seem more efficient but are in reality dehumanising. The police has traditionally held responsibility wrt wandering mentally ill destitute persons, but a mass approach is wrong ...
We urge you @ipspolicetn @sameerangs @CollectorCbe to instead refer the @NHM_TN draft policy for homeless mentally ill and work towards a community based, individualised approach that is in compliance with current mental health, disability & privacy law.

nhm.tn.gov.in/en/node/6236
Finally to quote Madras High Court's Justice Prabha Sridevan in Nathalie Vandenbyvanghe, 2008 indiankanoon.org/doc/1113887/?t…

16. Every person wandering on the street is not mentally ill. The police should not "round up" people as if they were stray cattle and deal with them as such...
Read 4 tweets
Jun 25
Whose side are you batting for @MSJE_AIC @MSJEGOI @Drvirendrakum13 @PratimaBhoumik @socialpwds?

"The States/UTs were advised to assess public buildings by 31-7-22 & submit the proposal seeking extension of time, if needed, with justification & detailed action plan."
#15June2022
Are you supposed to uphold the rights and participation of disabled Indian citizens or are you Personal Assistant to Central Govt & States of the Union?
When a statute provides for a time limit, then the basic rule of statutory interpretation is that the deadline must be observed
"If provision for extension is made then logically the extension has to be sought by the party who has failed to meet the deadline.  It is ironical that instead of issuing notice to the states asking them to explain why they have failed to meet the time limit..." @Drvirendrakum13
Read 6 tweets
Jun 25
Non-compliance with the Harmonised Guidelines on accessibility for disabled citizens is not only a building violation but a violation of our right to freedom of movement & access. And RPwD Act.

Not one public facility in India will pass the AIC audit checklist!
#WhereIsOurAzadi
Please issue Stop Work notice on TN Govt till attitude towards accessibility requirements in respected and rectified @CMDA_Official @chennaicorp !

You have an active and vibrant disability presence in the State, activists have been non-adversarial for decades and input pro bono.
Why then has the Tamil Nadu Government shamefully sought extra time of a year from Central Govt to make existing infrastructure accessible as per the time limit of Rights of Persons with Disabilities Act, 2016?

What were you doing for 5 years after passage of the RPwD Rules?
Read 13 tweets
Jun 3
Thread on uninformed policymaking & PLCP.

So @DGCAIndia has proposed an addition to the CAR (Civil Aviation Rules) related to air travel passengers with disabilities after the #IndigoIncident at @aaiRanchiApt - comments by 2nd July to rthakur.dgca@nic.in

dgca.gov.in/digigov-portal/ Text of CAR amendment draft. Addition of clause 4.1.36 which
First off, thanks to @DGCAIndia for obliging with a month for comments as per the PLCP (pre legislative consultation process) guidelines - some 100+ pages policy documents give barely a week.
But as a policy on disability, the amendment formatting can't be read by blind citizens!
Strikethrough formatting can be interpreted as cancelled text only by sighted. And grey highlighted text (signifying new clause here) isn't distinguished by default by screenreading software used by blind to access electronic text.

GIGW compliance is required since 15 June 2019 Screen Reader Example  This is an example of the JAWS screen
Read 12 tweets
May 28
This is not enough @DGCAIndia @MoCA_GoI @JM_Scindia.
People need to recognise the diversity in human communication, behaviour and appearance. Disabled people don't need doctors to certify their 'fitness' to fly, some unwell passengers may. CAR changes with disabled reps only pls!
Missing InAction: Airlines shall incorporate appropriate provisions on website within 3 months from CAR date of issue, so that while making bookings, passengers with disability have the option to select the required facilities, required during the journey. flyhigh-dra.blogspot.com/p/civil-aviati…
If you take a look at the @airsewa_MoCA tagged tweets (acknowledged but unfulfilled) you will find major difficulties faced with wheelchair inventory.

Fixable by passengers' specifying mobility requirements via SSR codes (WCHR / WCHS / WCHC) at booking stage itself as per CAR.
Read 15 tweets
Mar 4
"Level Boarding = Level Playing Field.
Anything less and it's not PUBLIC transport.
#BusKaro excuses!"
For 15+ years now, India's disabled citizens have been advocating for public transport that actually includes ALL.
All these years wheelchair users heard the same tired excuses Illustration from MoHUA transport Conference in 2021 called
@armanaly @NPRD_IN @drsitu @SCVashishth @vjayakumar @RajivSpeaks @Shampa_Sengupta @Deepak_TMN @SUMNetIndia ... Roads and Monsoons (And Money... And other conveniently selective 3rd world excuses from the Land of Chandrayaan)

In 15 years India's space odyssey has witnessed 2 missions to the moon, 1 to Mars with 2022 promising Chandrayaan 3, Aditya and prep for Mars 2 and Venus in 2024 Image of a woman on crutches crawling onto a high floor bus
Yet (as the pic above showed) Fathima still laboriously boards a bus on crutches. She has to crawl up the steps of the ubiquitous Indian high floor bus.

Yet, Fathima's 'lucky', at least she gets to somehow use public transport unlike India's wheelchair users under house arrest
Read 11 tweets

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