PSAAI and IPOPI call for immunity disease awareness
INTERNATIONAL Patient Organization for Primary Immunodeficiencies (IPOPI), in partnership with the Philippine Society of Allergy, Asthma and Immunology, Inc. (PSAAI) and New Marketlink Pharmaceutical Corporation (NMPC), has recently called for awareness for the Primary Immunodeficiency Disease (PID).
According to IPOPI, the association of national patient organizations dedicated for PID patients worldwide, PID is a large and growing group of over 280 different disorders caused when some components of the immune system do not work properly.
Since it is a disease on the immune system, it is expected that PID patients will have all kinds of infections and other illnesses. “We suspect a lot of them [PID patients] just die early from these infections or become disfigured or have permanent problems involving one or more of their organ systems that make their lives very difficult,” PSAAI Immunologic Disease Council Chairperson, Dr. Fatima Johanna T. Santos-Ocampo, said. Dr. Santos-Ocampo is also a founding member of the Southeast Asian Primary Immunodeficiency Network (SEAPID) and the Asia Pacific Society of Primary Immunodeficiency (APSID).
Thirty-one-year-old Gloria Alcaraz from Midsayap North Cotabato, one of those invited to the PatientDoctors Meeting for PID had three children with PID. Her first-born John Ray died suffering from WiskottAldrich Disease at five years old. Her second child lived only for two minutes as he had hydrocephalus and her third son, one-year-old Ivan Josh is now diagnosed with the same disease.
“It’s hard for us because we don’t have the resources to try treatments like stem cell, or IVIG. We are not rich and we have been living in shelters just so we can be close to hospitals that offer free consultation or any treatment for my son,” Ms. Alcaraz said.
According to several cases discussed by various specialists during the conference, IVIG is one of the most effective but expensive treatments. But as of this moment, there are still no definite statistics of PID patients in the country, a problem that the PSAAI wanted to address. The association wanted to create care groups and request for support from the government.
“The more PID patients that are diagnosed, the more patients can potentially receive this very important and available treatment,” said Dr. Santos-Ocampo. Meanwhile, PSAAI fellow Dr. Florecita Padua revealed that PID management has a lot of dilemmas worthy of attention including the cost of treatments which is very important for patients like the Alcaraz family.
Problems to be addressed also include the lack of tools for definitive diagnosis, the lack of modalities for specific treatment or cure, and the lack of skills for detection among physicians. And as these realities are revealed, the SEAPID and worldwide IPOPI representatives shared that care groups and awareness are key actions to get PID patients supported.