HAPLOS’s Government Advocacy
I. INCLUSION IN RA 10747
Hemophilia is RARE. Out of over 100 Million Filipinos, only less than 1,500 persons with hemophilia have been identified so far. This means one person with hemophilia for every 70,000 Filipinos. This makes hemophilia a very rare disease. Government Funds needed for rare diseases are very small compared to those of other more common diseases and illnesses such as cancer, cardio vascular diseases, diabetes, etc.
HAPLOS is appealing to the Government through the National Institute of Health (NIH) that Hemophilia be included in the RA 10747 Rare Disease Act of 2016. Inclusion of Hemophilia in RA 10747 will pave the way to the improvement of healthcare benefits as provided by the Law.
II. ACCESSIBLE AND UNIVERSAL HEALTHCARE
HAPLOS is asking for increase in healthcare benefits through PhilHealth, the National universal health insurance system.
Since hemophilia is a rare disease, the medical treatment is very expensive. The modern and most effective treatment of hemophilia requires the use of Clotting Factor Concentrates(CFC’s). Treatment of a a bleeding episode of hemophilia can starts from a minimum price of 4000 PHP for the single smallest dose. Due to complications and severity of condition, patients may often require more than one dose. Healthcare benefits from PhilHealth currently do not cover any percentage of the cost of CFC’s.
WHY HELP PERSONS WITH HEMOPHILIA? – Why should people care?
1. Hemophilia is a rare congenital bleeding disorder. There are only 1,500 identified so far.
2. It being rare, it suffers the consequences of lack of awareness on the need to take care of the people with the disease. It is an orphan disease in the sense of being neglected, ignored, discriminated against or not cared for.
3. Treatment and care is very expensive. Proper care and treatment is lacking. Its benefits from the Universal Healthcare Program (PhilHealth) is negligible.
4. If proper treatment is not given on time or is not given at all over a long period of time, persons with hemophilia may suffer life-threatening hemorrhage, irreparable degenerative joint disease, loss of limbs and in severe cases death.
5. Emotional and psychological support are important part of a comprehensive care for people with hemophilia. Beyond medical their medical condition a person with hemophilia and his family are subject to stress, sadness and sometimes depression. They need a support system to cope with the realities of having a life-long medical condition.