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:
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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:
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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:
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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:
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