Summary of litigation

 

OPEN LETTER FOR AID ON BEHALF OF MS. PAYEL BHATTACHARYA

My Client, Ms. Payel Bhattacharya (hereinafter referred to as “Payel”) is a diagnosed case of Von Hippel-Lindau Syndrome (“VHL”), an extremely rare genetic disease, which has only about 70 cases are reported by AIIMS. VHL-related tumors include hemangioblastomas, which are blood vessel tumors of the brain, spinal cord, and retina. The retinal tumors are also called retinal angiomas, which can lead to blindness if not treated in a timely manner. People with VHL also have an increased risk of developing  renal cell carcinoma (RCC), which is a specific type of kidney cancer, as well as a type of tumor in the pancreas known as pancreatic neuroendocrine tumor (pNET). Tumors of the adrenal gland or pheochromocytoma can also develop, with a small number becoming metastatic, meaning they spread to other parts of the body. 

Other features of VHL include: kidney cysts, which are closed sacs usually filled with fluid; pancreatic cysts, epididymal cystadenomas, which are tumors near a man’s testicles; broad ligament cystadenomas, which occur near the fallopian tubes in women; and endolymphatic sac tumors (ELST), which are tumors of the inner ear that may cause hearing loss.

The only treatment is the removal of tumors, irradiation, and monitoring. All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.

Because of the potential morbidity associated with resection of multiple craniospinal haemangioblastomas in von Hippel-Lindau disease, stereotactic radiation therapy has been used instead. Small haemangioblastomas (<3 cm diameter), and those not associated with cysts might respond safely to radiation therapy.

Payel has also developed multiple tumours in her brain as a result of her VHL. The Tumours in the Payel’s brain are known as leptomeningeal hemangioblastomas, and are one of the rarest forms of Tumours known to medicine. Further being unable to obtain fruitful employment owing to her medical conditions, Payel has no regular source of income,  and has been forced to rely on donations from various good Samaritans, to help pay for her treatment. Some of the well-known persons who have helped finance the Petitioners’ treatment include Ms. Sushmita Sen (Actress), Mr. Basudeb Acharya (M.P.), Ms. Abani Roy (M.P.), Ms. Atishi Marlena (M.L.A.). Payel’s medical condition is very well documented and has also received some coverage in the media which has played a pivotal role in her effort to raise funds. Many leading newspapers and magazines have covered her story. A brief collection of such media articles and reports is provided for your reference at the below link:

____________________________________

In the past Payel has also been able to raise fund by using various crowd funding platforms, and notably such fundraising had enabled her to obtain expensive kidney surgery in the year 2015. While Payel has been able to obtain more than 7 critical surgeries in the past for treatment/control of her disease, including but not restricted to liver transplant surgery, kidney surgery, and multiple brain radio surgeries after a craniotomy in 2006 causing cell spillage thereby leading to the highly vascular leptomeningeal tumors , she now requires proton therapy treatment to help control the Leptomeningeal Hemangioblastomas in her brain.

The said brain disease has also resulted in a condition known as Trigeminal Neuralgia, arising partially from the fact that the tumours in her brain are pressing against various vital nerves critical neuraxis. The pain from Trigeminal Neuralgia is known in medical circles to be most excruciating, which has also given the condition, the medical nickname of “suicide disease”. Upon seeking treatment for such pain, Payel has been asked to undergo cyberknife treatment at HCG Khubchandani Cancer Center at Colaba Mumbai. However the cost estimated for current proton beam therapy at Apollo Chennai staggering sum of nearly Rs. 40 Lakh.

A brief collection of the various medical prescriptions, discharge reports for the major surgeries including the prescription for proton therapy treatment is provided at the below link:

_______________________________

As of today i.e. June 24, 2021 Payel has been able to raise a sum of about Rs. 1.30 Lakh, from her crowd funding initiatives. Given the dismal response received to her crowd funding initiatives, Payel has approached me, seeking legal aid. In furtherance of the aforesaid we have filed a writ petition before the HC at Delhi, being W.P. C. 3662 of 2021, seeking financial assistance from the State for Payel’s medical treatment under the (Draft) Nation Policy for Treatment of Rare Diseases. Our Petition was thereafter tagged with multiple petitions before Delhi where various parties had sought financial assistance from the State for treatment of rare diseases. Pursuant to such petitions, the Hon’ble High Court had directed that the state notify the National Policy for Treatment of Rare Diseases, which was eventually notified on April 1, 2021. 

We have thereafter submitted an application under the policy with the responsive authority being AIIMS, seeking disbursement of funds under the Policy. However it is important to note that even if AIIMS finds favorably, in support of Payel’s treatment, the amount allocated would in no circumstance exceed Rs. 20, lakh.

In these circumstances unless the remaining sum of Rs. 20 Lakh is arranged for her treatment we apprehend that State/AIIMS may not be forthcoming with the allocation of the initial sum of Rs. 20 Lakh for Payel’s Treatment.

Accordingly we have started approaching various Non-Governmental Organisations, as also prominent persons in the field of media and journalism, seeking any form of aid as can be provided to Payel so as to help support her treatment.

The immediate need is that funds be collected in her crowd funding initiatives as provided at the below links:

_______________________________

So as to ensure that a sum of at least Rs. 20 Lakh may be available in support of her treatment. Any help or support in this direction, no matter how small, is very important to us. In case of any further queries please also feel free to contact me personally at my Cellular No.: + 91 84110  66553, or email advocateghoshkolkata@gmail.com. 

For further reference a Copy of the Writ Petition filed before the High Court as also the past orders passed in said petition are available at the below link:

_________________________________

Memento Mori

 In the face of death 

Alive with fiery breath,

We live all the more spectacularly 

 In an attempt to escape the inevitable

survive miraculously

Sometimes to embrace it without fear.

In lonesome fear, never sure why you're here

The nature and process of death

Deities associated with death,

 Either because they are death or because they look after death

One of the central concerns 

most religious traditions,

 philosophical schools, 

 mythological tales.

Memento Mori -Remember, you shall die, 

To be born is to die

To say goodbye

Hence Carpe Diem -Seize the day, 

That, granting life today,

Be bonny and blithe, and good and gay.

 Heaven or from hell?

And do we know

We are but dust and shadow

Celebrating the life of the departed we also acknowledge our own mortality.

The sufferings of mortality,

Seen in their sad reality,

The awareness and engagement with the process of death

Feel Alive with fiery breath,

The sky around  and the earth below.

The hour of death is unknown

We enter into life under pain of death; 

Take a deep breath 

Death is vital to life.

Memento mori

 On your desk, or the skin of your hands as you hold a book, 

We always feel at or behind our shoulder

So is there a moral in this story?

This may not stop us fearing death, or grieving;

Such deep sighs should not be heaving

 These are natural human processes

Vague, dark distress

But it does help us see death as part of a larger story

Memento mori 

And it's glory

The universe that, despite its apparent phenomenal hurtling Towards entropy

 Like an unstoppable juggernaut, 

No matter what 

Also rises up into consciousness.

 It tells us that at every moment this awakening happens,

As matter switches on awareness.

 It tells us that we should live both as though

 We were going on forever and, at the same time, as though 

any moment now we are going to…

Our entry. the world bringing our end

 And, just as we are made of ‘stardust’ 

Every man and every woman is a "star”

The unknown and impossibly large number of minuscule parts

And nothing is ever truly created or destroyed

In my life's twilight

The strange ‘Interzone’

 Where I suddenly know that I am already wiped out of existence and forgotten. 

Yet, somehow, I get back

My awareness is like a loop, a binder, 

Pulled across an abyss, 

Immersed into its final destiny

 I am reborn into Time.

It is a Miracle to find Mum

It is being raised from the dead and returning to the land of the living.

World has responded through all my surgeries and treatment when I needed help. Still calling for help suffering in silence I am requesting support

I have a rare disease called  vHL or Von-Hippel Lindau--this is a cancer-suppressing gene and those people who have VHL disease have a mutation, turning you into a tumor-producing factory.

In my case, blood-filled tumors form in up to 10 organs of the body.

The only treatment is the removal of tumors, irradiation, and monitoring but unfortunately, multiple tumors formed in the liver which compressed and displaced vital vessels and I had a liver transplant leading to turning off of the immune system. Curing vHL brings us closer to curing many forms of cancer. 

All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.

The will to live is an unstoppable thing. Most people live only when they are about to die. 

VHL is a tumor suppressor protein that is localized in the nucleus or cytoplasm, the extent to which being dependent on cell density.

The hypoxia-inducible transcription factors have also been shown to play a crucial role in tumour promotion in other cancers including breast, brain, colon, gastric, lung, skin, ovarian, prostate, renal, pancreatic. Increased levels of growth factors result in angiogenesis.

VHL is the key to know how tumours grow and how potential therapies can inhibit angiogenesis.

It may sound complicated, but having a VHL diagnosis shouldn’t consume a patient’s life. In fact, monitoring through routine screenings is one of the most important components of care for patients with the inherited condition, which puts them at an increased risk for developing tumors.

Between 1902 and 2013, approximately 132 cases have been recorded. 

Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analysed is small. The most common cause of death is respiratory failure due to pontomedullary or cervical cord compression.

After 2017 I also have a chronic ischemic brain. Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.

The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumour but also the healthy tissue that the beam encounters on its way towards the tumour and beyond the tumour. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.

A proton beam directed at a tumour travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumour.

The mutation of the gene is confirmed in AIIMS research.

There were multiple cysts in the pancreas already. They blocked the exocrine functions ( enzymes) and for a couple of months, I had to run to the bathroom after every meal. After Creon SD microgranules were prescribed my diarrhea feels better but you can confirm it is around Rs 3000 and lasts for only 2 days.

The will to live is an unstoppable thing. Most people live only when they are about to die. 

After 15 surgeries including kidney cancer apart from the above-mentioned Liver transplant I want to survive my life threatening condition with an unquenchable thirst for life.

I, who swam the seas with vigor, without any complaint, felt the warmth of sunshine in the emptiness of my life, from the quest for knowledge I got to know more about my diseases.

My request is to help me according to your preferences and ability.

I was diagnosed with leptomeningeal hemangioblastomas 6 months after the cyberknife in 2013.

Currently I am suffering from a serious multiple brain tumors which has been reported globally from 1902-2013 only 132 cases and I am the first one in India. The small tumors floating around in the fluid used for cushioning the brain and spine tend to compress all the nerves that come their way. Hence the first nerve to be compressed was the optico-hypothalamic nerve which made me blind with right eye even after radiation therapy. 

The next time it became bilateral trigeminal nerve. I got a cyberknife on 17/3/2020 but the left nerve is not done, hence it feels like someone is holding a bare electric cable against my cheeks or any part of the face. 

After this cyberknife I got a swallowing problem. The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII). 

It should be emphasized that the structures involved in the swallowing process are pairs, both anatomically and/or functionally, due to the dual-side innervation. 

Anatomically unique, the tongue, palate, pharynx, and larynx are functional pairs, each side having independent innervation.

Currently I can't stand for long, gait problems and electricity flows through the right leg. Also my bladder and bowel control is lost. All these can be to some extent treated with proton therapy and chemotherapy.

 

Because from 18/3/2020 we are under voluntary isolation and just 

Because of an unfortunate event I developed Covid 19 

Blood tests at times are a good marker of inflammation and they can also give you and your doctor an idea of what is going on in your body, in particular, the C-reactive protein and the D dimer. Both of them are said to be a good testing ground for understanding what is happening in your body.

D dimer and CRP but no antibody. Antigen couldn't be tested because it might hurt my throat. Bilateral trigeminal nerve, vagus, Hypoglossal, Glossopharyngeal, facial, auditory are all compressed by tumours.

The RT-PCR test was not done in my case because I have Trouble swallowing food and medicines, Here I'd like to state The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII). 

Both Naso and Oropharyngeal samples are collected. If have problem in nasopharyngeal then it can be done in Oropharyngeal sample only 

Hence it might be extremely hurtful as I get pain in the pharynx and larynx and often my tongue gets paralyzed. Voice becomes hoarse after speaking a bit. 

My CRP was high and D Dimer critical

Meanwhile, the oxygen level suddenly dropped and NGO Jeevan Stambh loaned me an oxygen concentrator

I have experienced horrors that would give most people nightmares for life but the thing is if you face serious issues from a younger age you don't cringe inside or give up on life. The older you get without ever having a real problem you don't know how to handle it. Starting early gives you a perspective if you don't die first. 

After a month of the first symptoms, I formed antibodies under immunocompromised conditions. 

Dr Harsh Mahajan worried about CRP getting raised.

Higher than 16.4 in my previous report

Now D Dimer is no longer critical.

Retracted novel CoV similar to the genetic sequences of human immunodeficiency virus (HIV) and Ebola.

A stunning cocktail like Coca cola

Hence its difficult to find if I bled from the bowels were due to Covid or pancreas related diarrhea.

Treating doctor Neeraj Saraf said to Repeat CRP and D Dimer after 10 days.

I was diagnosed with tuberculosis which was later found to be Multi-drug-resistant Tuberculosis. After a couple of years of disappointing treatment at Medanta Dr Randeep Guleria treated me

After 15 surgeries including kidney cancer apart from the above-mentioned Liver transplant I want to survive my life threatening condition.

 I have no income. I write for Times of India digital without honorarium honorarium and typing with the index finger of the right hand because after the had got palsy and was treated with high-dose steroids the hand doesn't work like before and the left had after recovering from paralysis didn't get back the sense of touch and both halves of brain lost coordination and refuse to work together. and my mother who is a pensioner draws barely enough pension to feed and clothe us, leave alone pay for my medical expenses. Friends donate who think I should live more and write more.

The first nerve to be compressed by my leptomeningeal HB was the optico-hypothalamic nerve which made me blind with my right eye even after radiation therapy. 

My request is to help me according to your preferences and ability.

https://www.ketto.org/fundraiser/help-payel-bhattacharya-survive-vhl-genetic-multi-system-disorder

To the cosmos shall mingle at last.

 

Time flies and memories fade.

People change and new friendships are made.

Yet certain sins are simply unforgivable

Unforgivable sin, the unforgivable sin, unpardonable

Mum is incredible  Nature's lyrical

Magical, mystical, miracle,

Warm as a summer day

Our bond is strong and lovin'

Feeling my pain makes her weepin'

What wond’rous Life I lead!

Ripe Apples drop about my head;

Apples drop from the tree

Life's hopeful with Mum and me

The man jumps up from a bathtub; the mind-blowing equation.

Can you quantify his elation?

Because of relentless mutation

Which enhanced evolution and diversification

My mutation gave me a very rare affliction 

While nature entrusted her aid to bless

 I got just and fair success.

With the feel of old mortal stress;

 Never for anger, lust, or gain,

 Would my life with falsehood stain.

  There's weakness and strength in every human.

I Chose to trudge the hills less trodden by;

 With head held high; 

Being cognizant; 

The turf is uncertain;

 So is the terrain;

When going through life's valleys

And thinking there's no way out,

There's hope, without a doubt.

Still hanging on 

When I want to sigh; 

I get up with head held high; 

Choosing a path never trodden by, 

To leave a trail and make a difference

  

I must think.

To be selfless,

   It's not about me.

To be brave,

   I must hold my head high.

To be fearless,

   I must fight 

By the grace of Heaven to raise my life

 In mortal strife;

Skilled in the grounds of war and peace

Winning a war at the nick of time stress decrease

Struggles that plagued me each day,

At the end of it all,

Would just fade away.

Time's winged chariot hurrying near:

But at my back, I always hear

And when his life on earth is past,

 To the cosmos shall mingle at last.