Hemophilia Home Care in India

Partnership objectives:

Enable prophylactic treatment of haemophilia in the home setting (first of its kind in India) to prevent and manage bleeds, reduce bleed rates, reduce days missed at school due to bleeds and associated complications.

Shire piloted a project in Mumbai, in partnership with King Edward Medical College (KEM), to build capacity and generate evidence for an hemophilia home care model in India to reduce bleeds. Shire piloted a project in Mumbai, in partnership with King Edward Medical College (KEM), to build capacity and generate evidence for an hemophilia home care model in India to reduce bleeds. Copyright Shire

What are the health needs and challenges

  • Hemophilia is a rare, chronic, lifelong condition.
  • An estimated 400,000 people worldwide are living with hemophilia, but only 25% receive adequate treatment.
  • Especially in low and middle income countries, barriers to care include lack of diagnosis, limited institutional capacity and insufficient access to treatment.
  • Prophylaxis at home is the standard of care in developed countries, but in India this is not standard, due to low awareness, limited capacity, and absence of treatment guidelines, amongst others

Description of partnership activities and how they address needs and challenges

Shire piloted a project in Mumbai, in partnership with King Edward Medical College (KEM), to build capacity and generate evidence for an effective, first-of-its-kind, hemophilia home care model in India to reduce bleeds. With Shire’s support, KEM was able to adopt a home care protocol, obtain training material, deploy software technology, allocate human resources and set up the infrastructure for home administration of clotting factor. KEM also trained parents and care givers on home administration.

Following this positive outcome, Shire expanded the project to the Civil Hospital Surat in Gujarat, and to the District Hospital Aluwa Kerala to establish a “hub-and-spoke” system of high standard hemophilia care in states in India. The program kicks off a journey, to bring the appropriate standard of hemophilia care to patients in India, with a view to enable children with hemophilia to live their life to the fullest.

Measurement of progress towards objectives:

  • Estimated amount of people impacted: within two years, (starting 2015), the number of patients on home prophylactic treatment went from 0 to an estimated 100 in 2017. 

Partnership information

Company(ies) Shire

Partner(s) Civil Hospital Surat Gujarat, District Hospital Aluwa Kerala, King Edward Medical College, Mumbai

Type of Partner(s) Academia / Hospitals

Therapeutic Focus Non-Communicable Diseases, Women and Children's Health

Disease(s) Children's Health, Genetic Diseases, Haemophilia, Hematology Disorders, Rare Diseases, Women's Health

Program Type(s) Availability of Treatment - Technology Transfer - Scientific Collaboration and Knowledge Sharing, Health System Infrastructure - Training, Prevention Programs - Awareness & Outreach

Targeted Population(s) General population, People with low income

Region(s) South Asia

Number of Countries 1

Country(ies) India

Start Date 2015

Anticipated completion date Ongoing

« The program enabled us to set up the infrastructure and empower care givers and patients to self-administer treatment at home. Instead of treating when a bleed occurs, we can now prevent bleeds, which is of utmost importance to prevent joint disease and a »

Dr. Chandrakala, King Edward Hospital Mumbai