Ophilia Social

A Social Sustainable Successful Initiative

About Ophilia CSR

Ophilia Bio - O means universal , Philia means family - Universal Family. Ophilia also means Help in Greek. The promoter of this entity believes that the aim of helping people globally is the possibility. The need to close the medical gap between developed and developing nation by co venturing with right set of partners to impact life. This brotherhood will create a community without borders and will foster a spirit of co-operating and co-creation rather then competitiveness and unbalanced growth. We want to provide a level playing field for people to experiences life in a positive way and create harmony. One way of doing this is meeting medical needs for people with orphan disease.Venture Mission to Help People with Orphan Disorder Globally. 

What is Rare Genetic Disorder?

A genetic disorder is an illness caused by one or more abnormalities in the genome, especially a condition that is present from birth (congenital). Most genetic disorders are quite rare and affect one person in every several thousands or millions.

Rare Blood Genetic Disorder also known as Orphan Disease and basically caused due to mutation of X Chromosome.

Rare Genetic Disorder includes

• Haemophilia (Known as Royal Disease)• Thalassemia• Sickle cell Anaemia• All this are due to mutation of X Chromosome.

What is Hemophilia? …Also Known as Royal DiseaseA group of hereditary genetic disorder that impair the body's ability to control blood clotting or coagulation, which is used to stop bleeding when a blood vessel is broken.”

Hemophilia A is the genetic disorder which causes an absence of the naturally occurring blood Factor VIII.  Protein replacement therapy can be prophylactic (75%+ of patients in Western markets) or in response to bleeding events (greater in developing markets).

Hemophilia B is the genetic disorder which causes an absence of the naturally occurring blood Factor IX.  Protein replacement therapy can be prophylactic (75%+ of patients in Western markets) or event-driven (greater in developing markets).  

Factor VIIa is needed as a substitute for Factor VIII when some (circa 30% of) hemophilia A patients develop an immune response to injected Factor VIII, thereby limiting its effectiveness. It is also used for the acute treatment of bleeding associated with major trauma and in some surgical settings.

Characteristic symptoms vary with severity.  Deep internal bleeding Easy bruising Joint damage Transfusion transmitted infection

Haemophilia –HIV, HCV

• In many Countries FFP – Fresh Frozen Plasma and Cryoprecipitate (F VIII) was used for treatment.

• Therefore many PWH contradicted HIV and HCV infection

• The Blood that was suppose to heal Them Now Gave them a New Viral Death

• Note personality like Amitabh Bacchan also contracted HCV because of Plasma infusion to save his life during the “Coolie Episode”

The Hepatitis C epidemic• HCV attacks the liver and chronic infection can lead to liver fibrosis, cirrhosis and cancer. Once

cirrhosis or cancer develops, it can be fatal. • HCV affects more people than HIV in India with prevalence estimated to be around 1.5%

equivalent to 12 million people and 185 million people across the world.• It has alone contributed to 58 thousand deaths in India as of 2010, making India rank second

only to China.

Hepatitis C- the numbers• TOTAL- 12 million in India*• 80% have Chronic HCV and require treatment.  ie 9.6. million• 65% (of 9.6) get slowly progressive disease  i.e. 6.24 million• 30% (of 6.24 mill) get cirrhosis i.e. 1.872 million• 25% of whom get liver failure/ transplant/ cancer/ death i.e. 0.468 million i.e. 468,000

Who is most at-risk? A sizeable portion of people are coinfected with HCV and HIV leading to what is now known as

the “dual epidemic”. More PLHIV are dying from HCV rather than HIV. Due to the blood-borne nature of transmission of the virus, there is a disproportionate disease

burden on vulnerable groups such as IDUs, MSMs and PLHIVs. Patients receiving multiple blood transfusions such as thallassaemics, haemophiliacs and those

undergoing dialysis are also vulnerable to HCV through cross-contamination of blood.

Cost of Treatment

• USA – $1,00,000

• India – 4 to 5 Lacs

Each year recurring for a complete life span.

Right to Health

• The right to health is enshrined in numerous international and regional human rights treaties and in many national constitutions. [Article 25 UDHR, 1948, Article 12, ICESCR, 1966]

• The Article 12 of the ICESCR recognizes the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.

• General Comment 14 of the ICESCR Committee establishes a framework for the realization of the right to health

• As a party to the ICESCR, India has an obligation to respect, protect and fulfill the right to health.

• Access to treatment is an integral component of the right to health- that means that treatment should be made available, accessible, acceptable and of good quality.

Inclusion in Disability Law

• The Haemophilia Federation India (HFI) has demanded that haemophilia be included in the category of benchmark disabilities in the Rights of Persons with Disabilities Bill.

• Now Hemophilia & Thalassemia has included in the Draft Disability Bill which is pending approval in the parliament. Last heard it was being redrafted.

Live with Respect & Dignity

HCV/HIV does not discriminate. It can infect anyone. It can affect anyone. Therefore, care is provided to each person regardless of nationality, race, creed, colour, sexual orientation, political belief, or socio-economic status.

HCV/HIV can be treated and managed for a prolonged period of time. Many people with HIV are leading full and active lives. As each year passes, new and more effective treatments are available to slowdown HIV and treat complications that may arise. Each person has the right to make informed decisions about their care.

Each person must be allowed to live with respect and dignity. 

Advocacy Right to provide Care on DemandThrough a PIL against the Government of Maharashtra the Bombay High Court has ordered and the State Government has started giving free on demand medicine to:

• Hemophilia• Thalassemia• Sickle Cell Anemia

My Experience

Every individual can do something even in a small way. I was called upon to lead this PIL Advocacy which has resulted in all the congenial blood based disorder being now covered for Free Medical treatment across six centers in Maharashtra like KEM-Mumbai, Thane Civil and Sasson Hospital Pune.

Yes you can make a difference …….

What you should Do?

• You are my Brand Ambassador, Take up CSR and doing good in whatever way.

• Support Advocacy right – of DA :Differently Abele People (People with Disability)

• Have Job reservations for Physically Challenged• Support Education initiatives for DA• Support inclusion for differently Abele people• Provide Ramps and Transport facility so they can support

themselves• Support through your CSR Program – Recently BHEL has

allocated Rs.3.5 Crore for Hemophilia as part of CSR.

Oplilia CSR

• Hemophilia - Our Core focus is to create awareness about Hemophilia

• Advocacy- Fight for HCV –next challenge

• Spread Awareness of Hemophilia in CSR program

Founder

Active Management: Rupal Panchal – He is professional Chartered Accountant with more than 15 years of corporate finance experiences dealing with Equity & Banking transactions, headed Chitralekha Group, Nimbus Communications. Himself a severe hemophiliac who suffered for many years while growing up and then founded the Hemophilia Society Mumbai Chapter and currently leads the Advocacy moment for Hemophilia in Mumbai. Has help create Hemophilia care center in Mumbai , Research in Auyerveda and setting up HCV clinics to improve the life of hemophiliacs. Leader in Advocacy Rights for Hemophilia.

Advisor: Glennis Mehra –She has a PhD from Columbia University, Neurobiology and Behavior.  Technically she is an established Developmental Biologist with expertise in receptor cloning and expression, high throughput screens and functional genomics. After leaving academia She joint Columbia's Technology Ventures Group and was in charge of out-licensing and managing IP for the University's Chemistry and Biology Departments.  She is consultant to Product companies wanting to launch their product in Indian subcontinent market. Also she takes active part in working with social funding.

Current Challenges on free HCV treatment for allWhy demand Free Treatment?

• Most people living with HCV cannot afford treatment - 70% of medical expenses are paid out-of-pocket in India

• By not providing free access to HCV diagnostics and treatment, the government is violating the right to health of people living with HCV.

• Since most people can be cured with treatment – full coverage is cost-effective in the long run. Treating and curing people with HCV in the early stages prevents much more complex and expensive treatment once serious liver disease develops.

Contact Us

Ophili Social

Rupal Panchal (CA, MBA)Rupal.pnchal@gmail.comIn: linkedin.com/in/rp109

Dr. Glennis Mehra Advisor

Thanks to NETSOURCING

We would like to give special thanks to NETSOURCING.

Advisory firm which working as consultant in the area of Corporate finance, Healthcare :Bio-similar Product strategy and CSR opportunities.

902, “Empressa, 2nd Road, Near – Station,Khar – West, Mumbai – 400052Ph: 022-26462554

Email: info@Netsourcing.inWeb: www.Netsourcing.in Linked In: in.linkedin.com/in/netsourcing/en