Initiative on Hemophilia Care-a sensitization program and the way forward

World Hemophilia day

New Delhi: On 17th April 2015, World Hemophilia Day, Hemophilia Federation (India) in partnership with Ministry of Health and Family Welfare, Govt. of India celebrated Baxter supported event on hemophilia sensitization at India Habitat Centre, Silver Oak Hall, Lodhi Road, New Delhi.

The program was titled as "Initiative on Hemophilia Care-a sensitization program and the way forward".

Mrs. Meenakshi Lekhi, MP (LokSabha) was the Chief Guest and Mr. Manoj Jhalani, Joint Secretary (Policy), MOHFW, GOI and Mr. Alain Weill, President, WFH were the special guest of honours. Other senior officials of MOHFW were also present in the programme along with HFI management and representatives of HFI chapters from various states of the country. Health officials from various states and the medical fraternity from all most all the states participated in the programme.

The objective was to update all decision makers in the state and national level about the disorder and the sufferings of the hemophiliac community. The inaugural session focused on the lack of facilities and support from the Government and how these can be improved and upgraded.

Dr. Ghosh welcomed and gave brief introduction of the panellists and the attendees including hemophilia volunteers, medicos, PwH,medical administrators, secretaries and doctors from various states. In his speech he brought up 3 issues of sufferers and said;

We have identified only 15% of PwH due to lack of coagulation laboratories. In 198 medical colleges only 10% have coagulation laboratories. Therefore, this is among one of the biggest challenge in identifying PwH to provide them medical care. Each of the state govt. administrator should address this issue because it doesn't require huge amount of money or power. Moreover the dividends of coagulation laboratory are enormous. Not only hemophilia but many other bleeding disorders such as snake bites and liver diseases can also be properly diagnosed and managed.

Second challenge is in receiving donated product from WFH. WFH often donates a lot of medicines as humanitarian aid for poor hemophilics of our country but every year there are difficulties in getting clearance from Drug Controller General of India (DCGI). The donated Anti Hemophilia medicines (AHF), if purchased, amounts to crores of rupees and could add up to the burden of Ex-chequer.

At present, there is several million units of donated AHF and it is being held-up from last 4-5 months by WFH because of the disapproval of DCGI.

Dr. Ghosh requested Mr. Manoj Jhalani to review the matter and prevail upon it to get it resolved to give relief to the suffering community.

Lastly he said; Government of India should have a long term plan for producing the factor, recombinant, plasma drive etc. and in short term approach factor needs to be purchased.In the current scenario every state is purchasing factor at different prices.

There must be a uniform national policy in which every year price of factor can be decided on a global tender. Having such policy not only will save lot of money but govt. will also have an account of how much factor is being purchased and utilized.

In his concluding remarks he restated one of the demand of Hemophilics that government should develop bleeding disorder facility in each of the medical college and hospital because it will not only serve and benefit PwH but also the patients of all hereditary and non-hereditary bleeding disorders as well.

Next on the dais Mr. Manoj Jhalani (Joint Secretary (Policy), Ministry of Health and Family Welfare, GOI) briefed the gathering and said that government in its 12th5 year plan talks about Universal Health Coverage (UHC) which means meeting all the health needs of its population through quality health care at an affordable cost. Major public health challenges such as maternal/child health, lot of communicable diseases like Tuberculosis (T.B), HIV/AIDS, and Malaria etc. are high on the priority. He said that he do understands that genetic disorder such as hemophilia is a major issue of all PwH and their families. It’s a trauma mentally and financially and government needs to respond to their needs. He said that certain suggestion have come forward in terms of creation of bleeding disorder facilities in medical colleges and district hospitals to develop coagulation labs, factor producing mechanism and purchase policy etc. will be looked into.

On DCGI, he remarked that issues that concerns us at the national level relating to DCGI will certainly be taken up on priority because he realizes the seriousness of the matter. He added that he will try to ensure that whatever assistance comes from WFH is optimally utilized because we can ill-afford to waste it.

He then informed the gathering on NHM and said that under NHM Government of India provides treatment and care to PwH and couple of states have taken the support. He urged the state representative in the hall to take advantage of this support facility under NHM to address the key concerns of PwH. He gave e.g. of picking up programmes under NHM in terms of preventive screening so that emphasis can be much more on efforts to prevent all possible genetic disorders. Lastly he wished the conference a great success and said that he would be happy to support do-able, actionable and costeffective recommendations.

Mr. Alain Weill (President, World Hemophilia Federation) informed that WHD is being celebrated in 127 countries and every year the day encourages the global community to come together and recognize the importance of building the family of support. He said surrounding PwH with such encouragement is especially necessary for those who are facing a situation of inadequate availability of care or no access to treatment at all. He informed;

Vast majority of PwH living in India are still experiencing the devastating and crippling effects of living with hemophilia. We live in an era of rapidly improving availability of effective and life altering medications and care which exponentially increase with each passing year. At the same time when comparing countries worldwide the gap between those with access and those with little or no access to these treatment greatly increases. Too often children growing up with bleeding disorder suffer needlessly experiencing the crippling effect of untreated bleeds. They miss days of school or don't attempt school at all. Many of these children would die in early childhood. The reality is that it is indeed possible for those living with hemophilia to experience high quality of life to be able to work, to raise a family and to contribute to their own society is attainable. It is only possible with the concerted effort by the entire community. The WFH works continuously with health ministries, regulators, health care professionals, care teams, patient organizations and patients themselves to make available the much needed access to care and treatment. We see these types of partnership strengthen when all work together to try and achieve the work of WFH vision of treatment for all. I would like to pay gratitude to the immense work and commitment of HFI. We shall always remember its' father and founder in 1983 Dr. Ashok Verma and we are thankful today to the constant dedication of 76 chapters under the leadership of it's president Dr. Kanjaksha Ghosh.

In India only16,500 PwH are identified when in reality this figure should be closer to 1.2 lac considering the population of India. When it comes to treatment and clotting factors.The yearly consumption per capita is only .005 IUs for factor nine and .023 IUS for Factor 8.This is too far below the level of 1 IU per capita which is considered worldwide as minimum level for survival.

India is among the few countries leading the world and playing a vital role in world economy. Its citizens can't be left behind with no or too little treatment for life threatening disease. It will only be concerted efforts of all partners including those present here today that we can increase these figures and reduce this immense gap in treatment.

WFH is also engaged in strong humanitarian aid programme through product donations to patient in need and address emergency situation. Since the year 2000 we have been able to provide 52 million IUS of clotting factor to treatment centers in India. But our work is not yet done we all have a role to play and will continue to build our global family of support with your help.

Today 1,20,000 of PWH in this country should feel the spirit of great family support. Today 1 lac of them will be left aside. We must find, identify, diagnose and bring treatment for them to live a better life. This is what makes us get up and work every morning. Dhanyawad!"

Dr.Alok Srivastava (Prof. and Head of Hematology, CMC Vellore) acknowledged the presence of Chief Guest Mrs. MeenakshiLekhi and Mr. Manoj Jhalani and he gave a brief introduction of himself and the work he has done during his stint as VP (Medical) of World Federation of Hemophilia for a decade. He said that in last 25-30 years many improvements have taken place in hemophilia care around the world and in India there are more than 15 states which are supporting hemophilia care. However, lot needs to be done because India is among the worst in terms of health care situation, particularly hemophilia in comparison to other developing

countries of Asia, Middle East, South America and even Africa. He informed that from the last 2 years he along with Dr.Naresh Gupta (Nodal officer, Hemophilia Care, MAMC) and Dr. Cecil Ross (VP Medical, HFI) have organized meetings with various officials from health ministry of 15-20 states once a year to discuss on ways to systematically organize hemophilia care and plan a model for it. He suggested that hemophilia can be taken as an excuse toestablish laboratories facilities and this will actually improve management of bleeding among patients of all hospitals. Bleeding is not limited to hemophilia and is a common leading problem in all hospital of country. It is cause of maternal mortality and most of our medical colleges cannot do simple test of coagulation and are unable to manage maternal bleeding during pregnancy.

Further he highlighted the problem of lack of mechanism to import donated medicines from WFH and sought the help of Minister Mrs.MeenakshiLekhi towards bringing the attention of the parliamentarians on this issue. Moreover the state and central governments are unable to purchase sufficient factor concentrates which invariably results in immense no. of PwH waiting for limb saving and lifesaving surgeries in hospitals. Therefore, it’s all the more necessary to obtain the donation of good factor concentrates from WFH to provide immediate help to the waiting patients. He reiterated to the state authorities to help in getting permission from the DCGI.

After listening to the requests and demands made by speakers Mrs.MeenakshiLekhi MP for Lok Sabha assured the gathering that she understands the requirements of hemophilia community.

She said; Hemophilia could be an excuse to deal with various other ailments and it can be taken forward that way. Also, if, WFH can help in donating coagulation laboratories then it will be very helpful for the cause. Any suggestions in terms of health policy be it taking up before the parliament, writing to ministry or any kind of advocacy you seek I am there to help for the cause.

She spoke on combining preventive and curative health systems and said;

Many diseases in India are lifestyle disease coming from bad eating habits, not knowing our body makeup, not exercising adequately, not walking enough etc. All such things can be tackled at school level and inbuilt in our system through health care formats such as Ayush and Yoga. A lot of money can be saved from out our pockets/ welfares in the form of medicines etc. and it can be directed towards other incurable genetic disorders.

Later, various technical sessions were held by participating doctors and guests from WFH. Dr.Naresh Gupta (HOD, LNJP Hospital, Delhi) shared his view on project themed “One Country One Treatment”, Dr.Alok Srivastava of CMC Vellore gave his presentation on “Establishing Hemophilia Care with Government Support – The Core Elements”, Mr. Robert Leung of WFH gave programme related information in Asian and Western Pacific Countries, Dr. P. Naliniof Pondicherry Chapter gave a brief talk on “Women with Hemophilia”. Dr.RenuSaxena (HOD Hematology, AIIMS) informed on “Carrier Detection and Prenatal Diagnosis”, Dr. Cecil Ross VP Medical of HFI spoke on National Hemophilia Registry (NHR) and support needed from state and central govt. on Hemophilia care and Dr. Pamela Narayan (Consultant Physiotherapist, Laxmi Hospital, Hyderabad) gave a presentation on “Reducing musculoskeletal morbidities among PwH in India – Role of Physiotherapy”.