Hemophilia and Social Security Disability

“Not every Disability is visible”

“Its not our DISABILITIES; Its our ABILITIES that count”

Hemophilia is a group of genetic disorders that affect the blood’s ability to  clot normally. Those with hemophilia have to be careful to avoid situations in which they could be cut because they have a difficult time stopping bleeding once it starts.

Those with hemophilia don’t necessarily bleed more severely than others, but they tend to bleed much longer because the blood does not effectively clot. People with severe hemophilia can bleed for several days – or even weeks – from cuts and scrapes that would be considered minor for those without the disorder.

There is currently no cure for hemophilia. It can be treated by factor replacement infusions, which medically add the blood factors that aid in clotting and coagulation. Depending on the type and severity of hemophilia, infusions may be given regularly or as needed. Special exercises can also help prevent some effects of hemophilia.

Hemophilia is a chronic, genetic disorder in which the body of the person affected is unable to clot blood. According to Hemophilia Federation of India, one in every 10,000 Indians suffers from this disease, making the estimated number of patients at least one lakh. It is estimated that 90% sufferers in India can’t afford treatment – the expensive treatment burdens the whole family financially. There are many social issues attached with Hemophilia patients, such as poor quality of life due to chronic pain, frequent absenteeism due to bleeding episodes resulting in poor schooling and poor employability, gender-related issues due to victimization of mother or maternal guilt, economic consequences due to high cost of treatment and the need to make out of pocket payment.

Persons with Disabilities Act, 1995 does not include ‘Hemophilia’ under Disabilities Act. Though the ‘Rights of Persons with Disabilities Bill, 2014’  was introduced in  Parliament (Rajya Sabha) to include, interiliac, Hemophilia patients under the definition of ‘disability’, it is not making any headway.

I am Nabila Husseni – parahemophiliac (Factor 5 deficiency); and I choose not to place “DIS” in my ABILITY

Persons with Disabilities Act, 1995

The Persons with Disabilities Act (PWD), 1995 was the landmark legislation for the disabled in India. The Act defines disability as blindness, low vision, leprosy-cured, hearing impairment, locomotors disability, mental retardation and mental illness.

The Act calls for the government to take the necessary steps to ensure prevention of disabilities and to make the general environment non-discriminatory towards PWD by adapting and adding to railways, buses, road signals, building ramps etc.

The Act contained many shortcomings. Hence, it was proposed to be repealed as part of the Rights of Persons with Disabilities Bill, 2014, which was introduced in Parliament (Rajya Sabha) on February 7, 2013

Salient Features the Rights of Persons with Disabilities Bill, 2014

Disability is defined to include 19 conditions such as Autism; Low vision and blindness; Cerebral palsy; Deafblindness; Hemophilia; Hearing impairment; Leprosy; Intellectual disability; Mental illness; Muscular dystrophy; Multiple sclerosis; Learning disability; Speech and language disability; Sickle cell disease; Thalassemia; Chronic neurological conditions; Multiple disabilities.

Rights of Persons with Disabilities should be ensured

Education to the Children with Disabilities should be ensured

Skill Development and Employment to the Persons with Disabilities should be ensured.

Measures regarding Social Security, Health, Rehabilitation and Recreation should be undertaken.

Special Provisions for Persons with Benchmark Disabilities should be made.

Registration of Institutions for Persons with Disabilities should be done and Grants should be provided to such Institutions.

Establishment of National and State Commissions For Persons with Disabilities.

Establishment of Central and State Advisory Boards.

Haemophilia Treatment in England, USA and India

ENGLAND 

England provides free treatment to all patients suffering from Hemophilia via the NHS (spell out), irrespective of their economic status. It is a fully organized system which takes into account different and specific needs of individuals. It is characterized by strong patient participation. They follow the model of Comprehensive Care which includes clinical services having doctors, nurses and physiotherapists with specialization in Hematology; 24 hours laboratory services; investigation of families of patients; advisory services to patient and family; regular review; etc.

USA 

In U.S.A, hemophilia care is delivered by highly specialized federally designated Hemophilia Treatment Centers (HTCs), which treat approximately 70% of people with the disorder. Pharmacy services are essential to ensure timely and appropriate dosing of clotting factor agents, a critical aspect of care for people with hemophilia. Services under the umbrella of HTCs include – Coagulation Laboratory: initial diagnosis and ongoing monitoring; Physician Services: Hematology, pediatrics, and orthopedics; Nursing Services: education, anticipatory guidance, home infusion teaching; Physical therapy; Nutrition; Dental services; Social work /Social; Support; Research.

INDIA

In India, Hemophilia, in particular, does not feature as a disability in the existing Act. India is estimated to have the second-largest number of patients suffering from hemophilia A, yet there is no specific relief granted by the government for the patients, either in the treatment or facilities to cope with other socio-economic situations.

Following steps need to be considered:

  • At least one hospital (or more, depending on the size and population of the State) in every State is needed to provide services for the betterment of Pwh
  • ANational Program for Hemophilia, with the suitable budget provision, is the need of the hour. This would facilitate expansion of  ‘One Country One Treatment’ program.
  • Programs promoting self-infusion should be encouraged so that patients are well equipped to take care of themselves.
  • The doctors and nurses should be adequately trained for the treatment of this disease, particularly in the technique of administering the anti-hemophilic Factor concentrates
  • Schools need to be equipped with facilities for students suffering from Hemophilia.  Also, no school should deny admission to a child on the basis if this disorder.
  • There is an urgent need for the government to organize awareness programs for the benefit of patients and their families and educate them about ways of leading a near normal life.
  • Hemophilia puts the patients in a difficult scenario that proves to be a disadvantage in the field of employment. There is a need to ensure fair opportunities for employment to such patients.
  • Hemophilia should be included in the Disabilities Act, as proposed under ‘The Rights of Persons with Disabilities Bill, 2014’.This will help Hemophilia patients to avail the much-needed benefits from the schemes under this Act.I Stand For Disability Rights – Support US (19000 Hemophiliacs {Indians}) for getting hemophilia into Benchmark Disability Act; as we also need accessibility, safety, community acceptance, Independent living and Quality of life; Full and active participation in society; equal access to education and employment.

    “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.”