Giving hope to fellow Lupus warriors: DIWA Rep. Aglipay launches Hope For Lupus Foundation

 

With the aim of raising awareness on the disease and supporting patients and their families, Democratic Independent Workers Association (DIWA) Representative Emmeline Aglipay-Villar will be launching the Hope For Lupus Foundation this December 4 at the University of the Philippines – Philippine General Hospital (PGH).

Lupus is an autoimmune disease wherein the immune system attacks healthy cells and tissues. Advocating for the importance of the early detection and treatment of the disease, DIWA Rep. Aglipay tells that this is a cause close to her heart because she was diagnosed with Lupus in 2007. “My personal experience is a testament to how early detection could have been prevented major organ damage of kidneys and blood vessels,” said. DIWA Rep. Aglipay-Villar. She emphasized that the awareness of Lupus and its symptoms will allow patients to seek proper treatment at earlier stages, avert major damages, and save more lives.

DIWA Rep. Aglipay-Villar also explained that there have been a lot of misconceptions and myths about Lupus. She mentioned that because of the lack of information, many Lupus patients die from the disease without proper diagnosis and proper treatment. The Hope for Lupus Foundation seeks to raise awareness about the disease by providing national awareness through education, community outreach programs, and funding for Lupus research in the Philippines.

“The lack of awareness on Lupus has already cost so many lives. With Hope For Lupus, no more lives would be lost due to a lack of information and awareness about the disease,” said DIWA Rep. Aglipay-Villar.

The foundation’s launch will feature an exhibit entitled “Lupus Warriors” and a musical play entitled “Mabining Mandirigma” by Nicanor Tiongson in partnership with the University of the Philippines – PGH’s Rheumatology Department. “Mabining Mandirigma” is a steam-punk dance musical depicting the life of the revolutionary Apolinario Mabini. The play will be held at 3:00 PM, Sunday, at the Cultural Center of the Philippines. All proceeds will be given to the Bridging Lupus Fund for the benefit of indigent lupus patients in PGH.

DIWA Rep. Aglipay-Villar hopes that with the foundation, they would be able to establish a Lupus-free Philippines.

Bridging Fund for Lupus(An Arm of the Sagip Buhay Medical Foundation)


The Lupus Bridging Fund

The Lupus Bridging Fund was established in 2011 by the Section of Rheumatology, Department of Medicine, UP-PGH. It provides for the immediate and crucial needs of patients in their direct moments of illness.

Why help patients with Lupus?

Lupus most commonly afflicts women of reproductive and working years – young mothers with younger children; students with a potentially bright future; single ladies who financially contribute to their families and the society are not spared. Patients did not get lupus because they drank excessively, smoked, or used illegal drugs. While there are inherited factors for the disease, the lupus patient may have incurred additional environmental causes while prioritizing the needs of family and loved ones and putting their health to the backseat. In some cases, ladies who work night shifts, mothers removed from families to work overseas and emotionally battered women developed lupus.

In 2009, SLE was the 14th top cause of admission in the medical wards of the Philippine General Hospital. In 2010, it was the 13th. Those who are admitted to the Philippine General Hospital mostly belong to the lower economic strata of Philippine society. More important is that, they also need aggressive and costly treatment that they can ill afford. This includes antibiotics, steroids and other important drugs given through the veins.

Doctors can save more lupus patients (and their families) if funds are available to bridge the acute treatment phase and the maintenance phase. PGH, being one of the largest tertiary referral hospitals in the country, more often than not sees the darkest and most devastating faces of SLE.

As an example, the 2011 estimates of expenses for treating severe lupus flare is shown in the table.

Medicine/Diagnostic Cost per unit Days needed Total
Antibody test/s P1,000; P2,500 P1,000 – P3,500
Antiphopholipid antibody panel P4,800 P4,800
Kidney biopsy P10,000 P10,000
Methylprednisolone pulse therapy (MPPT) P3,700 (1-2 vials per day)

3

P11,100 – 22,200
Antibiotics, e.g., meropenem P1,200 (3 vials/day)

7-14

P25,200 – 50,000
Blood transfusion P400 processing fee/bag P400

The Lupus Fund aims to shoulder the acute phase treatment of our lupus patients, which could cost to up to P25,000.00 – 30,00.00 per patient. The amount you give will see a young mother returning home, caring for the family, overcoming and surviving lupus, working, and ultimately contributing to society.