INITIATIVE ON HEMOPHILIA CARE II – A Sensitization Program and the Way Forward

On 18th April 2016, HFI and Ministry of Health & Family Welfare, GOI joined together with the Hemophilia community to mark World Hemophilia Day 2016 which is celebrated on 17thApril every year world over. Continuing on the momentum of theinitiative (IHC-1) taken last year, this year too HFI worked closely with Ministry of Health & Family Welfareto successfully organize the program "Initiative on Hemophilia Care II A sensitization program and the way forward". The programme was a great success with over 200 participants comprising of Health officials, doctors, patient representatives and political dignitaries coming together to work in the direction of providing comprehensive care to the Hemophilia sufferers of our country. The program was organized with the joint sponsorship of two internationally renowned pharmaceutical companies, Baxalta Biosciences India Pvt. Ltd. and Novo Nordisk India at India International Centre, Main Auditorium, 40 Max Mueller Road, New Delhi.

  1. Meenakshi Lekhi, MP Lok Sabha from New Delhi Parliamentary Constituency was the guest of Honour. Speaking in the gathering she said"First of all we should congratulate ourselves that our work has brought some results because the customs duty on the life saving drugs including AHF have been rolled back. I did promise last year to stand by the cause and therefore I did participate in zero hour intervention and drew the notice of the government. Government has taken up the cause and has done so much this time. I also did speak about the Benchmark Disability. I have decided that this time my column is going to be on bleeding disorder and Hemophilia to create awareness amongst people.Ms. Vandana GurnaniJi has just now mentioned that she has taken over women and child care part of the health department which is also interesting because there are lots of cases of IMR and MMR which go un-noticed. I understand you are helping the people with Hemophilia, thalassemia, sickle cell anaemia or as I learnt recently even the blood cancer disorders. The whole lot is connected with bone marrow transplantation and protocols which are more or less similar. Under the circumstances we can deal with one composite framework called Blood Disorders and work on these subjects. I think due to bureaucratic lethargy and half the time due to lack of interest, my idea of providing mobile health care with digitised system and keeping a watch especially on pregnant women and children got floundered. Unfortunately for me that digitization has not happened though the medical health Van like a normal van is travelling from places to places.

I met the father of one child who qualified in the IIT JEE but fitness certificate could not be given to that girl child. She could not be admitted in the professional course. That hurt me a lot and I felt that why are we undermining the potential of a child by engaging in these things. There are people who got the certification and they are not claiming the disability benefit in terms of reservation. They are simply wanting certification so that they can be looked after in their institution and can study a professional subject. If we could somehow at the policy level bring change and incorporate these children in special category, not to create or not to carve out a reservation section but only to make them able to care for and get admitted in schools, colleges which would help. If we all can join our hands together and do something to serve anybody and a good cause, if we can make India a better place for any individual or a section of the society then that would be great. I feel that the govt. did do its bit by rolling back the customs duty on the drugs for these particular section of ailments. We could actually insist upon the govt. of the states because health is a state matter but through the central policy. Most of the Jachcha-Bachcha wards, they have labs attached to them and in those labs we can fix diagnostic sets so that the women of this country can be taken care of. Due to missing factors excess bleeding happens and lot of death happens. If the factors can be detected at the time of delivery, a lot of improvement can happen and also same diagnostic centre can be utilized for Hemophilia, thalassemia or sick-cell anaemia patients or the other bleeding disorder patients. From the same diagnostic centre we can build a network around the country. If I am not mistaken some of the international institute are also willing to help us with the diagnostic setup. We can begin with a few states who are responsive and those who are not responsive will lag behind.

I wish everyone present in the audience, the MOH&FW and everyone else a very warm thanks. Let's take our cause forward and help out the ones who need us most."


Hon'ble Sh. Ananth Kumar, UnionMinister of Chemicals and Fertilizers towards closing of the workshop said, "Actually few days back I was approached to participate in this initiative of Hemophilia Care II. At the outset Dr. Ghosh has raised few points. I understand the severity of the disability but it is difficult to imagine the misery and challenge especially when a slightest cut and bleeding can cause further disability. There is a huge no. of my brethren who are facing this disability and I feel this is the duty of the Govt. of India to serve them, to deal with the disability and overcome it. When I say deal, I mean adequate medical care has to be provided. When I say medical care, then that include medicines also. I was pondering myself, why I have been called. I have been called here not only as Minister for chemicals, petro chemicals and fertilizers but Minister for pharmaceuticals and medical devices also. Therefore, I thought I have been called here regarding the availability of factor concentrates, regarding the price fixation of factor concentrates and regarding making factor concentrates free of cost under the Medicare system of Govt. of India. Not only that, when we list out the disadvantages, We should do gradation of disadvantage or to cover the existing grades for providing employment and grants and subsidy and special advantage to this group of people. All this have to be thoroughly discussed. I assure this august audience one thing that from my side my doors are open. After 25th of April any working day you are welcome. I will call in all my officers and we will have a discussion on this. You come with your representation and we will have a meeting with Secretary Pharma. We will also have a meeting with chairman MPPA, the pricing authority. I will request our Hon'ble Minister of Health and Family Welfare and my dear colleague Sh. Jagat Prasad Nadda Ji with the Health Secretary so that we can thoroughly discuss the issues and move forward. My dear friends I am not an expert. I am part of the govt. therefore, I don't dwell in to the statistical details, the type of therapies, various remedies available and the research and development in this regard world over. At the same time under our beloved Prime Minister, Sh. Narehndra Modi, especially in Pharma and Medical devices sector we have taken many positive steps. You all will be pleasantly surprise, in 60's Pharma was in the department of defence. From defence we went to Petroleum and Natural Gas Ministry. From there we went into Petrochemicals and recently courtesy our PM, Pharma has become a separate department in itself. I assure you that it is our endeavour to make pharmaceutical a separate Ministry. I think that will go a long way. I have already requested the Hon'ble PM regarding this. I am going to write to him to make it a different ministry. Pharmaceuticals is a sunrise industry in India. We are one of the top 3 global powers in Pharma industry. One of the main challenges we are facing is drug discovery. The drug discovery also covers our Hemophilia. One more assurance today I give you that is we have National Institute of Pharmaceutical Education and Research (NIPERS) in Ahmedabad, Mohali, Hyderabad, Kolkata, Guwahati, Hajipur, Raibarely. Recently, we have decided to establish one each in Jaipur, Chhattisgarh, Maharashtra (Nagpur), Karnataka and MadhyaPradesh. My suggestion to you is that IHC can decide one of the NIPERS for R&D regarding Hemophilia. Within next one month I will instruct NIPER to have an MOU with IHC to pursue this matter. Therefore, there can be an active research in this regard. Lastly, regarding the pricing of AHF, I should be briefed whether AHF is included in any of the GOI'scampaigns, if it is not so then how to go about it. I think once you come out with a plan, we are ready to look in it with an open mind so that we can adopt it and we can also launch it with cooperation of IHC. Therefore, I request you to have an active dialogue with GOI, with both MOH&FW andPharma and Medical Devices department. You need not run from pillar and post. You be in touch with my office, we will organize the meeting after 25thApril 2016. After having a discussion in that meeting I think we can set our own time tables, set our goals for future course of action and achieve that in next one year. If you can do this, I think this convention of yours will be meaningful and successful. Thank you."