Karunya Benevolent Fund( KBF):A scheme which includes free factor therapy for registered PwHs of Kerala,India . Rome was not built in a day,so was KBF for Hemophilia

Karunya Benevolent Fund: The compassionate touch which changed the life of Persons with Hemophilia of Kerala

"Karunyam" means compassion or mercy. The Government of Kerala has aptly named the Benevolent Scheme  "Karunya".

Karunya Benevolent Fund,  the Health Service Scheme that finances treatment expenses of poor sections in the society. It is run by the revenue earned from Karunya Lottery by the Government of Kerala.
Persons from poor economic background suffering from Cancer, Hemophilia, Kidney disorders, Heart diseases and those who are on Palliative Care get financial assistance through the Scheme.

Finance Minister, Shri K M Mani announced the Karunya Benevolent Fund in his 2011-2012 Budget. Karunya lotteries were started in October 2011, and on 26 February 2012, the then Minister for Defence, Government of India, Shri A K Antony inaugurated the State level Karunya Benevolent Fund. A State Committee presided by the Finance Minister and District Committees presided by District Collectors were formed.
Karunya even attracted those who were not in the habit of trying their luck.

Initially, the help was in the form of financial assistance of a maximum amount of Rupees Two lakhs per patient. Patients from BPL families and also from APL families whose annual income is less than Rs.2.5 lakhs per annum would be eligible for the Scheme. Also, financial assistance was limited to only one person of a beneficiary family.

Because of the continuous lobbying by the Hemophilia Societies of Kerala and well wishers, Hemophilia was included in the Karunya Benevolent Fund. Initially, only PwHs in the BPL category were included.
When the high cost of the treatment was brought into the notice of the Government,those belonging to the APL category were also included.

The support in the free factors had a ceiling of Rupees Two lakhs for their entire lifetime.

In the Government Order 403/2013 dated 18-05-2013, it was decided that if there is more than 1 PwH in a family, the benefits be given so that each PwH received treatment upto Rupees Two lakhs, instead of the earlier guidelines saying only one patient from a beneficiary family could avail the benefits.
Finally, in the Government Order 1445/2015 dated 18-5-2015. Government of Kerala, Department of Health and Family Welfare, and Kerala Medical Services Corporation ordered to provide free factor therapy to all Persons with Hemophilia registered in the scheme for their entire lifetime, irrespective of the APL /BPL category.
Factors VIII, IX, VII a and FEIBA are available through the Karunya Benevolent Fund (KBF).
There are around 1200 Persons with Hemophilia in Kerala.

Around 996 have registered in KBF and 850 have registered in the Samashwasam III project by the Social Security Mission of Government of Kerala which provides a monthly pension of One thousand Rupees.
A unique KBF ID is given to all the registered PwHs. Free factors can be obtained from Karunya Pharmacy on submitting prescription from treating doctor working in the Government sector. The amount corresponding to the cost of the factors will be deducted from the PwH's KBF account.
The pharmacy provides a bill to keep records of consumption.
Upon infusion of the Factor concentrates, the cartons with the empty vials should be submitted to the Karunya pharmacy along with the Utilisation Certificate given by the treating doctor. The certificate also has a patient / guardian declaration of utilisation of factors.

Only upon submission of these will the beneficiary get Factor concentrates again.
The Karunya Stores have a separate counter too for KBF beneficiaries so that they can obtain the factors easily.

However, the fact that it runs solely by the revenue from Karunya lotteries and that there is no other budget allocation for Hemophilia is a matter of concern.
Also, free factor therapy is available only to the registered PwHs. The Government Hospitals do not stock Factor concentrates. Hence, unregistered PwHs will have to buy Factor Concentrates out of their own pockets.
Also, there may not be sufficient stock at times.

---- Hemant Naidu Pulijala, Dr.Anupama Pattiyeri

     &Team RedLegacy !

APRIL 17: World Hemophilia Day, Birth Anniversary of Frank Schnabel

World Hemophilia Day

 It is an International observance held annually on April 17  by the World Federation of Hemophilia. It is an awareness day for Hemophilia and other bleeding disorders, which also serves to raise funds and attract volunteers for the WFH. It was started in 1989. April 17 was chosen in honor of Frank Schnabel, the founder of The World Federation of Hemophilia.

Themes of World Hemophilia Day

2016: Treatment for All
           The vision of All
2015: Building a family of support
2014: Speak Out. Create Change
2013: 50 years of advancing treatment for all
2012: Close the Gap
2011: Be inspired, Get involved in Treatment for All
2010: The many Faces of Bleeding Disorders - United to Achieve Treatment for All
2009: Together, We Care
2008:Count me In
2007: Improve your Life!

Frank Schnabel

A Montreal businessman born with severe Hemophilia A.He established The World Federation of Hemophilia (WFH) at Montreal in 1963. His vision was to improve treatment and care for " the hundreds of thousands of hemophiliacs" worldwide through a new International organization.
From a base of six national Hemophilia Societies, the Federation grew rapidly. It held World Congress every two years and created a global network of healthcare providers,national Hemophilia associations,people with Hemophilia and their families. At the 1964 WFH Congress in Amsterdam, the structure of the new organization was defined with a constitution and an executive board.
It reached a turning point when the World Health Organization acknowledged the Federation's growing international reputation and established official relation. The two bodies began working on joint projects.
 In 1982, AIDS hit the Hemophilia community. Connection of HIV infection in hemophilia patients and plasma derived treatment concentrates was presented in the Stockholm World Congress by Dr.Bruce Eratt. AIDS contracted from HIV-contaminated  treatment products swept through the Hemophilia community.
Frank Schnabel was among the victims. He passed away in 1987. Until the end, he reaffirmed his vision with the words," We are going to emerge victorious "

On the 5Oth anniversary of WFH, a video was released showing moments from the life of Frank Schnabel.
 The Journey Begins  :   https://www.youtube.com/watch?v=qqYbNeH4bOk&feature=youtu.be

International Frank Schnabel Volunteer Award

Established in 2004 in honor of Frank Schnabel,it is given to an individual with hemophilia, an inherited bleeding disorder,or to a family member, who has contributed significantly in furthering the mission and goals of the WFH. It is given every two years of Congress.

Past recipients

2004 - Ashok Verma
    Hemophilia Federation India
2006 - Yuri Zhulyov
Russian Hemophilia Society
2008 - Jean-Michel Bouchez
Association Française des Hémophiles
2010 - Antonio Luque de Garrido
Venezuelan Association of Hemophilia (AVH)
2012 - Martha Patricia Monteros Rincön
Federacion de Hemofilia de LA Republica Mexicana
2014 - David Page
 Canadian Hemophilia Society
 Brian O' Mahony
Irish Hemophilia Society

Light it up Red!

Each year, new landmarks and monuments are added to the list of WFH partners who support World Hemophilia Day by changing their lighting red on April 17

If there is a landmark near you, contact them to see if it can be lit red on April 17.
If not, just turn your lights red and participate at home.
Light it up red.

----Hemant  Naidu Pulijala , Dr.Anupama Pattiyeri

     &Team RedLegacy !