A disease as dangerous as HIV but an Under-recognized disease, people around India are suffering
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M4PNews|Chandigarh

He sold his House, His wife’s all jewellery, neighbors supported him and now after the sheer fight of survival he is supported by Gujarat Government for his Treatment. Vikas Vasani, the only one diagnosed case of Primary Immunodeficiency in State Gujarat. Vikas at the age of 27 firstly got sick with gastro problem and illness never taken its backsit till at the age of 41 he finally got diagnosed that he has PID. A disease as same as HIV but Under-recognized. A doctor from London told him about PGIMER Chandigarh, and he dropped here for his survival. His life journey and fight with PID is unique and applaudable indeed said Dr Amit Rawat, Additional Professor, PGI. Vikas is suppose to have Rs 50000 IVIG injection every month which helps him to fight with this disease.

It is under-estimated and under-recognized disease by physicians. The agony of this disease is that not many physicians know about this disease, hence there is no diagnostic system in India to diagnose this. So people suffering this disease are either dying or striving for better life. Its Primary Immunodeficiency (PID) – a disease which has all symptoms like Human Immunodeficiency Virus (HIV),  only the difference is that HIV is acquired disease and PID is congenital. First of all, diagnosis is difficult for physicians as they themselves do not know about this disease and if it got diagnosed then the treatment is quite costly to bear.

In India only Punjab Government is supporting such patients

From the last year, Punjab Government has supported five cases of Punjab suffering PID. Dr Deepti Suri, Associate Professor said that In India, Punjab Government is the only one State Government who has supported these patients so far as these Patients require Intra Venous Immunologlobulin IVIG Injection after every 20 days. 2 gram dose of this Injection costs around Rs. 8000/- – Rs 10,000/-. This is certainly is a costly affair for the patients for lifetime. Bone Marrow transplant is answer for this disease but IVIG is too a support system.

Here are many stories like Vikas. There is a girl Rukhsana from Karnatka who has been fighting for her nephew and have created an association for PID Patients. Rukhsana is urging Karnatka Government to urge to support these patients as if Hemophilia patients could get support from Government then PID patients shall also get that attention from the Government.

Treatment of PIDs is difficult and expensive. The most common group of PIDs relates to children who have antibody deficiencies and need monthly replacement therapy with Intravenous Immunologlobulin (IVIg). This treatment, however, has to be continued lifelong. Many of the more serious forms of PIDS present very early in childhood and require hematopoietic stem cell transplantation (HSCT) for their treatment.

Several patients with PIDs who have been on treatment at the PGI would recount their struggles in accessing treatment that should, under ideal circumstances, have been theirs by right.  Mr. Vikas Vasani, from Rajkot, Gujarat, was diagnosed to have  Common Variable Immune Deficiency in 2010 at PGIMER, Chandigarh. He has put up a heroic struggle to get replacement IVIg therapy sanctioned from the Government of Gujarat.  Other states in our country need to follow this example.

Mrs. Preeti H Goswami, from Baroda, Gujarat also addressed the gathering. Her son had a very rare PID – Leucocyte Adhesion Defect (LAD). It took several years for this condition to be diagnosed and he had to be hospitalized frequently for intercurrent problems. Later he successfully underwent an HSCT and is now pursuing his college education like any other child of his age.

Ms. Rukhsana Haneef, Secretary of Primary Immunodeficiency Patients Welfare Society (PIDPWS), Bengaluru, shared her family’s experience of managing a child with PID. The family had to struggle before the correct diagnosis was established at PGI.

PGIMER is fortunate to have the generous support of several philanthropists and non-governmental organizations. They have been providing yeoman service to the cause of our patients with PID. These include Mr. K.D. Arora (IAS Retd.) and Air Marshal (Retd.) R.S. Bedi of Kusum Arora Memorial Trust; Mrs. Shalini Mehta of God’s Child Foundation, Panchkula; Mr. Vivek Kapoor and members of Pediatric Medical Support Society, Chandigarh; Mrs. Gurshabnam Kaur and members of Sukhmani Foundation, Chandigarh; Dr S. Chhatwal and members of NanhiJaan – a project of Veeranwali Foundation, Chandigarh; Mrs. Anu Dogra, Mrs. Nirmal Milkha Singh, Dr. Sneh Harshinder  Sharma  amongst many more who wish to remain anonymous. It is these individuals and their organizations who have contributed their time and energy to raise resources for patients affected with PID.

The Government of Punjab, through the painstaking efforts of its erstwhile Secretary, Health and Family Welfare, Ms. Vini Mahajan, has taken the lead in arranging funds for treatment of children with PID under the auspices of the Rashtriya Bal Swasthya Karyakram (RBSK). Punjab is the first state in India to do so and it is hoped many more will follow.

A plight of this 4 year old child Aarish from Ambala has a same story like Vikas and Rukhsana’s nephew. His father used to take him to PGI for treatment after every 20 days. Their pain can not be expressed in words yet we tried; we urge Government please wake up…support them!!

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    July 6, 2017 at 8:14 pm

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