Abhishek Mishra

Trainee Counselling Psychologist |

Navigating life with severe Hemophilia

📍 Patna, Bihar

[Abhishek Mishra @_bleedingwisdom]

Greetings on National Doctor's Day!

[Abhishek Mishra @_bleedingwisdom]

When I was just 8 years old, doctors in my hometown declared that I would never walk again due to chronic swelling in my left knee. "Accept this as your child's fate," the renowned physiotherapist in Patna told my father, who froze in disbelief.

[Abhishek Mishra @_bleedingwisdom]

आज मैं लगभग 30 हीमोफीलिया मरीजों के साथ माननीय स्वास्थ्य मंत्री, बिहार श्री निशांत कुमार जी से मिला और उन्हें हीमोफीलिया मरीजों से जुड़ी 11 प्रमुख मांगों का ज्ञापन सौंपा।

ज्ञापन में फैक्टर VIII की सभी सरकारी अस्पतालों तथा न्यू गार्डिनर रोड अस्पताल, पटना में निर्बाध उपलब्धता, फिजियोथेरेपी व्यवस्था, पीएमसीएच में मरीजों को होने वाली कठिनाइयों और उपचार प्रणाली में सुधार, आधुनिक उपचार विकल्पों की उपलब्धता तथा हीमोफीलिया देखभाल व्यवस्था के समग्र सुदृढ़ीकरण जैसे महत्वपूर्ण मुद्दे शामिल थे।

माननीय मंत्री जी ने लगभग आधे घंटे तक हमारी बात अत्यंत गंभीरता और संवेदनशीलता के साथ सुनी। उन्होंने हमें अपना पूर्ण समर्थन देने का आश्वासन दिया, तत्काल कार्यवाही हेतु BMSICL के प्रबंध निदेशक एवं अन्य अधिकारियों को निर्देशित किया तथा हमारी बैठक कार्यपालक निदेशक (ED) से भी करवाई।

उन्होंने आश्वासन दिया कि फैक्टर VIII की आपूर्ति कल से ही अस्पतालों तक पहुंच जाएगी तथा भविष्य में इसकी आपूर्ति निर्बाध बनाए रखने के लिए भी आवश्यक कदम उठाए जाएंगे।

हम मंत्री श्री निशांत कुमार जी के प्रति उनके सकारात्मक दृष्टिकोण, संवेदनशीलता और सहयोग के लिए हार्दिक आभार व्यक्त करते हैं। हमें आशा है कि ज्ञापन में उठाए गए सभी बिंदुओं पर ठोस एवं समयबद्ध कार्यवाही होगी, जिससे बिहार के हीमोफीलिया मरीजों को बेहतर और सम्मानजनक स्वास्थ्य सेवाएं प्राप्त हो सकें।

@Nishantjdu @bmsicl @BiharHealthDept @SHSB_Bihar

[Abhishek Mishra @_bleedingwisdom]

Today, along with around 30 fellow Hemophilia patients, I had the opportunity to meet the Hon'ble Health Minister of Bihar, Shri Nishant Kumar Ji, and submit a memorandum containing 11 key recommendations for strengthening hemophilia care in the state.

The memorandum highlighted several critical issues, including uninterrupted availability of Factor VIII in all government hospitals, particularly at New Gardiner Road Hospital, Patna; the need for dedicated physiotherapy services; concerns regarding patient difficulties and treatment delays at PMCH; access to modern therapies; and broader reforms to improve hemophilia care across Bihar.

The Hon'ble Minister listened to our concerns attentively for nearly half an hour and assured us of his full support. He immediately directed the concerned officials, facilitated our meeting with the Executive Director and BMSICL authorities, and assured us that Factor VIII supplies would reach hospitals as early as tomorrow. He also assured us that necessary steps would be taken to ensure uninterrupted availability of Factor VIII in the future.

We are sincerely grateful to Shri Nishant Kumar Ji for his sensitivity, positive approach, and willingness to engage directly with the Hemophilia community. We remain hopeful that all the issues raised in our memorandum will receive timely and meaningful action, leading to better healthcare and quality of life for Hemophilia patients across Bihar. @Nishantjdu @bmsicl @BiharHealthDept

[Abhishek Mishra @_bleedingwisdom]

अत्यंत गंभीर और आपात स्थिति।

मैं बिहार का एक गंभीर (Severe) Hemophilia A मरीज हूँ। हमारे लिए Factor VIII कोई सामान्य दवा नहीं, बल्कि जीवनरक्षक उपचार है। बिहार में Factor VIII की आपूर्ति पिछले कई महीनों से अनियमित चल रही थी और अब यह पूरी तरह समाप्त हो चुकी है। जानकारी लेने पर बताया गया कि बिहार मेडिकल सर्विसेज एंड इंफ्रास्ट्रक्चर कॉर्पोरेशन लिमिटेड (BMSICL), जो राज्य में इसकी खरीद और आपूर्ति के लिए जिम्मेदार संस्था है, के पास भी वर्तमान में Factor VIII का कोई स्टॉक उपलब्ध नहीं है।

Factor VIII के अभाव में आंतरिक रक्तस्राव, स्थायी विकलांगता, जोड़ों को अपूरणीय क्षति और यहां तक कि मृत्यु का भी खतरा रहता है। यह केवल दवा की कमी नहीं, बल्कि जीवन और मृत्यु का प्रश्न है तथा संविधान के अनुच्छेद 21 के तहत प्रदत्त जीवन के अधिकार से भी जुड़ा विषय है।

माननीय स्वास्थ्य मंत्री, स्वास्थ्य विभाग एवं संबंधित अधिकारियों से विनम्र अनुरोध है कि तत्काल संज्ञान लेते हुए Factor VIII की आपूर्ति बहाल करने हेतु आपात व्यवस्था करें। साथ ही भविष्य में ऐसी स्थिति दोबारा उत्पन्न न हो, इसके लिए पर्याप्त बफर स्टॉक, समयबद्ध खरीद प्रक्रिया, स्पष्ट जवाबदेही तथा निर्बाध एवं सतत आपूर्ति सुनिश्चित करने हेतु कठोर और प्रभावी व्यवस्था लागू की जाए।

किसी भी प्रकार की देरी अनेक मरीजों के लिए घातक सिद्ध हो सकती है।
@samrat4bjp @BiharHealthDept
@Nishantjdu @SHSB_Bihar @bmsicl

#Hemophilia #FactorVIII #Bihar #RightToLife #Healthcare #RareDisease

[Abhishek Mishra @_bleedingwisdom]

This is an urgent public health concern.

I am a person living with Severe Hemophilia A. For patients like me, Factor VIII is not an optional medicine, it is a life saving treatment. The supply of Factor VIII in Bihar has been intermittent for several months and has now reportedly been completely exhausted. Upon enquiry, it was informed that Bihar Medical Services and Infrastructure Corporation Limited (BMSICL), the agency responsible for procurement and supply, currently has no stock available.

Without timely access to Factor VIII, severe hemophilia patients face the risk of uncontrolled internal bleeding, irreversible joint damage, permanent disability, and even death. This is not merely a drug shortage; it is a matter of life and death and directly implicates the Right to Life under Article 21 of the Constitution.

I respectfully urge the Hon'ble Health Minister, Health Department, and concerned authorities to take immediate cognizance of this situation and make emergency arrangements to restore supply. At the same time, robust measures must be put in place to ensure uninterrupted future availability, including adequate buffer stocks, timely procurement, clear accountability, and a reliable long-term supply mechanism.

Any further delay could have fatal consequences for many patients.

#Hemophilia #FactorVIII #Bihar #RightToLife #Healthcare #RareDisease

@samrat4bjp @BiharHealthDept
@Nishantjdu @SHSB_Bihar @bmsicl

[Abhishek Mishra @_bleedingwisdom]

@i_am_gustakh Reminds me of Champak Chacha of TMKOC 😄

[Abhishek Mishra @_bleedingwisdom]

@flora_peyvandi Sad news for Hemophilia community :(

[Raghav Chadha @raghav_chadha]

India needs to move towards One Nation, One Medical Treatment, where access to best medical care is available to all, regardless of income or influence.

That is exactly why I questioned the low health allocation in this Budget and demanded a relook in Parliament. In this Budget, health gets around 2% of total government expenditure, roughly ₹1 lakh crore. But the real gap is bigger.

Under the National Health Policy 2017, India committed to spending 2.5% of GDP on public health. In 2026, we are still at around 0.5% of GDP.We are nowhere near our own target.

Other countries understand the value of health spending. Kyonki jaan hai toh jahaan hai. The US spends around 18% of GDP on healthcare, the UK around 12%, Germany around 13%, and countries like Sweden, Netherlands, Denmark, Japan and Spain spend around 10%.

The consequences are visible. Government hospitals are understaffed and under-equipped. Overworked doctors, too few beds, shortages of machines and medicines, and waiting dates that delay treatment.

When families cannot wait, they are pushed to excruciatingly expensive private hospitals. One health emergency then becomes a debt emergency.

[Abhishek Mishra @_bleedingwisdom]

@DHFWKA @CMofKarnataka @DKShivakumar @KHS_Davangere @KarnatakaVarthe @dineshgrao @Comm_dhfwka @PIBBengaluru Very well deserved, Sir. Congratulations 🙏🏻♥️

[Abhishek Mishra @_bleedingwisdom]

@PromptLLM This seems far fetched in my honest opinion.

[Abhishek Mishra @_bleedingwisdom]

@akshatdoctor New Year Greetings , Sir 🙏🏻

[Abhishek Mishra @_bleedingwisdom]

@IcmrNiih Really hope that policymakers take note.

[Michael Makris @ProfMakris]

Inno8 is a new ORAL FVIIIa mimetic with potential as oral treatment of #hemophilia A. Being developed by Novo Nordisk and presented by Jacob Lund at #ISTH2024. A molecule I will be following with interest in the future.

[Dr. Anil Bonde @DoctorAnilBonde]

The crucial issue of including the drug 'Hemlibra' in the National Essential Drug List for the treatment of Hemophilia patients was raised in the Parliament today.

#Hemlibra #HemophiliaCare #RareDiseases #IMPF #PwHA #EssentialDrugList #NationalHealthMission #NHM #HealthForAll #RajyaSabha #Parliament #ZeroHour #DrAnilBonde

[Abhishek Mishra @_bleedingwisdom]

@JyotiDevSpeaks Sreesanth

[Raj Kunkolienkar @kunksed]

My father died of cancer two years ago.
A family member in her twenties was just diagnosed with stage 1 breast cancer.
In a month, I become a father myself.

I've been thinking about the noise.

When life is smooth, your brain manufactures a hundred urgent things. Career pivots. Income maximization. Status games. The next move, the next rung, the next validation. Your calendar fills with things that feel important because they're immediate.

But then something breaks. And the noise just... stops.

Not because you become enlightened or suddenly wise.

But because crisis is clarifying in ways comfort never is.
It doesn't ask what you should care about. It shows you what you already do.

You stop wondering about the promotion. You start wondering if you told the people you love that you love them. The spreadsheet gathering returns suddenly seems absurd. The evening walk you kept postponing becomes the only thing that matters. The distance you didn't create becomes the thing you're most grateful for.

I'm not celebrating crisis. I'm just noticing what it revealed. The people who matter. The work that feels true. The evenings you'll remember.

Everything else? Just noise we manufactured because we could afford to.

The monkey brain will return. It always does.

The distractions will creep back in, disguised as ambition or responsibility or momentum.

But maybe, if you're lucky, you remember this feeling long enough to protect what actually matters before life forces you to remember again.

We do the whole dance for remarkably few things.
The crisis just reminds us which ones.

[Nishant Rajendra Tiwari @Nischistocyte]

@EM_RESUS If a patient with hemophilia ever tells you that they feel like they are bleeding in their muscle/joint - always believe what they say, even if physical exam is completely normal. The phenomenon is called “Hemophiliac aura” - they know when they are having a bleeding episode.

[Abhishek Mishra @_bleedingwisdom]

@imkin I was referring to your tweet, Sir. Thank you for clarifying.
It's very exciting if this is true that 1/4th of standard emicizumab does as good as the standard dose.