32 years old Payal Bhattacharya of Delhi, is a victim of not only an extremely rare genetic disorder known as Von Hippel-Lindau (VHL) syndrome since the tender age of three, but is also battling with extra pulmonary multiple drug resistant TB (MDR TB) of the bones for almost 3 years now. The VHL syndrome is associated with an abnormal capillary growth in blood-rich organs, (like the pancreas, heart and liver), constantly signalling a lack of oxygen in the blood and resulting in the formation of tumours in many organs which could be benign or malignant. Tumours have already been removed from her thyroid, liver, brain, legs, and forearm in several surgeries during the past 20 years. Lately her vision has started deteriorating and doctors suspect that she has some tumour in her eyes too.
As if to add fuel to her existing fire of health problems, Payal suddenly started losing weight in 2009 as her already weakened immune system fell prey to the TB bacteria. For the first 3 months she was given the normal isoniazid (INH) chemo prophylactic therapy —rifampicin and combutol, but later on was found to be resistant to these 1st line drugs. Even taking streptomycin injections for 8 months did not help. The tuberculosis bacteria had penetrated her lymph glands. Then she was put on “other mixed sort of drugs like costrine and pyzina, and streptomycin was continued”. But still she did not respond to treatment and after 8 months into this MDR treatment a biopsy of the lymph gland gave a positive result. Then Dr Randeep Guleria of All India Institute of Medical Sciences put her on claribid along with INH. Even after completing over two years of her current MDR TB treatment under Dr Guleria on 24th October, Payal finds only a slight improvement in her condition and is far from being cured.
Payal feels that the bitter experiences of patients like her should push scientists to develop better antibiotics. She reiterates the need for better anti tuberculosis drugs which have lesser side effects. She rues that, “I have been on intensive anti TB treatment for more than two years. In these two years medicines have really damaged my life. I suffer from severe side effects. Earlier I was quite athletic and would run 5 km every day, but now I am totally confined to my chair. I am under a lot of pain and I cannot walk without a walker. I am getting pigmentation of the skin also. Although I get seizers (fits) but I have to take my medicines. I want to know if there are any better drugs available or likely to be available in the market. I don’t think that in the last 50 years any new drugs for TB have come out. I am resistant to all antibiotics and pharmaceutical companies should get some feedback on this.”
Hers is a story of a lifelong battle against a debilitating condition. Despite her myriad physical ailments, her spirit remains indomitable. Each moment is a struggle for her which she takes in her stride. She rightly deserves some moral, as well as financial, support to help her conquer the odds. At times she feels that she is a burden on her younger earning brother-- is a freelancer in Mumbai—and her mother with whom she stays in Delhi for her treatment. She pleads that, “The government should also take some steps to help people like me. Yes, my genetic disorder is very rare, but in India TB is very common-- so there should be some funding mechanism for a patient like me. There are hardly any voices from the Indian TB community. I would like the government to do something concrete for people living with TB—mere words are not enough. There should be some actual action. Patients need support. Very few people can really connect to patients like us. It is pathetic that we have to pay for all our medicines, doctors’ fees, diagnostic tests etc. I have had to pay for all my medicines. As I suffer from a lot many ailments, my monthly bill of medicines is around 35,000. I might need lifelong medical support, but I can lead a normal life with medicines. I need institutional support as my finances are fast dwindling.”
It is hoped that the forthcoming 43rd Union World Conference on Lung Health being organized by International Union Against Tuberculosis and Lung Disease (The Union) at Kuala Lumpur, whose aim is "Driving sustainability through mutual responsibility" will seek solutions to the problems faced by those grappling with drug resistant tuberculosis.
It is hoped that the forthcoming 43rd Union World Conference on Lung Health being organized by International Union Against Tuberculosis and Lung Disease (The Union) at Kuala Lumpur, whose aim is "Driving sustainability through mutual responsibility" will seek solutions to the problems faced by those grappling with drug resistant tuberculosis.
(The author is the Managing Editor of Citizen News Service (CNS). She is a J2J Fellow of National Press Foundation (NPF) USA. She received her editing training in Singapore, has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also authored a book on childhood TB (2012), co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" and a report on Hepatitis C and HIV treatment access issues in 2011. Email: shobha@citizen-news.org, website: http://www.citizen-news.org)
