Six years later, Filipinos with hemophilia still struggle in getting treatment

MANILA, Philippines — In 2015,  Andrea Trinidad, president of Hemophilia Advocates-Philippines (HAP) and former reporter for the Philippine Daily Inquirer, wrote a story narrating the struggles experienced by Filipinos with bleeding disorders.

Hemophilia is a rare genetic bleeding disorder in which the blood can not clot properly. This can cause spontaneous and prolonged bleeding following an injury or surgery. It affects a person’s joints and internal organs. For people with hemophilia, simple cuts can be fatal.

In her story, she shared how thousands of Filipinos with hemophilia further suffer due to the lack of access to treatment in the country.

Six years have passed but Trinidad said the same issue is still relevant partnered with the current issues caused by some restrictions implemented due to the COVID-19.

Getting treatment amid the pandemic

Trinidad has previously noted the experiences of Marvin Valladolid and Cyl Robert Arcilla — both diagnosed with hemophilia — who had to travel for hours just to have their checkups or treatment at major hospitals in Metro Manila.

Fortunately, during the past few years, the HAP — a non-profit, national organization of persons with hemophilia and related bleeding disorders, family members, and advocates — was able to provide hemophiliac patients free medicines that were donated to them.

“The difference now, because of our initiative in the international community, we now have international donations. Before kasi 2015 halos wala pa kaming donations pa noon. So talagang out-of-pocket expenses yun kasi it’s very costly,” shared the HAP president.

(The difference, because of our initiative in the international community, is that we now have international donations. Before, in 2015, we hardly have any donations. Everything was out-of-pocket expenses because it is very costly.)

However, the organization and its patient members were not unscathed by the impact of the global health pandemic caused by COVID-19.

“Ang challenge ngayong pandemic talaga is yung pag transport (ng gamot), kasi lalo pag nagla-lockdown diba tapos walang couriers. Okay lang kapag nasa Metro Manila kasi yung esential siya kaya pwedeng i-Grab pero kapag probinsya eto talaga namamatayan kami,” said Trinidad.

(The challenge this pandemic is when we transport medicine, especially during lockdowns and there are no couriers. It is okay here in Metro Manila since we can get it delivered via Grab. But we have recipients from the province who have died due to delivery issues.)

“Merong kaming member na pinadalhan namin, umabot ng two weeks sa LBC, namatay na siya bago dumating yung gamot which is very, very sad kasi he lived very far away from the city, sa Mindanao siya. So yung things like that yun yung mga challenges namin talaga,” she continued.

(We have a member whom we’ve sent some medicines, it took two weeks for the medicines to be delivered. He was already dead when the medicines arrived, which is very, very sad because he lived very far away from the city. He was from Mindanao.)

She also added that some patients with hemophilia are also being rejected in several hospitals.

“May mga patients kami na tinu-turn away ng hospitals kasi hindi COVID, hindi sila tinatanggap. May patient kami na namatay because of that, pingapasa-pasahan siya ng mga hospital. So very very challenging talaga for us this time,” she detailed.

(We have patients that were turned away by hospitals because they are not COVID patients. We have a patient that died because he was transferred from one hospital to another. It’s very very challenging for us this time.)

Same petitions

While the organization expressed its whole-hearted gratitude to its donors, Trinidad said they are still pushing for government assistance.

“[The donations we get] are not assistance from the government. Obviously, it’s not the long-term kasi we don’t know until when yung donation magka-come in. Kumbaga swerte kami ngayon because we have donors but that’s not sustainable,” she said.

(The donations we get are not assistance from the government. Obviously, it’s not for the long term because we do not know until when the donations will come in. We are really lucky because we currently have donors, but that is not sustainable.)

She added that they are still lobbying for the enactment of three separate bills that were passed in the Senate and Congress way back in 2017 and 2019.

These were the Senate Bill 1335 authored by Sen. Joel Villanueva and co-authored by Sen. Nancy Binay, Senate Bill 1389 authored by Sen. JV Ejercito, and House Bill 4237 authored by Rep. Bernadette Herrera-Dy.

The “Bleeding Disorder Standards of Care Act of 2017” filed by Villanueva and Binay in February 2017, emphasized the need to establish hemophilia treatment facilities in key cities and regions nationwide in designated hospitals with Cancer and Hematology Departments.

The bill further stated that every hemophilia treatment facilities should provide the following to all hemophilia patients:

• “Care by qualified hematologists and medical doctors and shall also provide free of charge the necessary blood clotting products and ancillary infusion equipment necessary for the infusion of such blood clotting products;”
• “A room exclusively for hemophilia patients;” and
• “A clinical coagulation laboratory for the screening, diagnosis, provisional diagnosis, and treatment of bleeding disorders or suspected bleeding disorders and such services shall be provided free of charge to all indigent patients.”

Ejercito’s bill in March 2017 and Herrera-Dy’s bill filed in 2019, which were also both entitled “Bleeding Disorders Standard of Care Bill,” reiterated the call for the hemophilia treatment facilities in the country.

“More than five years na that we’re really trying to get a law passed para sana institutionalized yung care for hemophilia. Kasi chronic disease siya eh and genetic siya, hindi mo naman ginusto magka hemophilia,” Trinidad commented.

(We have been trying to get a law passed to institutionalize the care for hemophilia for more than six years. It is a chronic and genetic disease.)

“This is not a lifestyle disease. It’s not because of how we live but it’s because of our genes,” she added.

Access to affordable medicine, healthcare benefits

She added that they are asking for better access to treatment from both government and private hospitals.

“Dapat yung mga hospitals ay meron silang available na gamot kahit yung sa major hospitals lang. Yung mga major government hospitals kami yung nag p-provide ng medicines which is dapat government yung magpo-provide into, ‘di ba?”  she remarked.

(The hospitals, or at least major hospitals, should have an available medicine for hemophilia patients. We are the ones who are currently providing medicines to major government hospitals, but the government should provide these, right?)

According to her, aside from the medicine, they need to take, persons with hemophilia are required to be infused with replacement factors – given through transfusion of blood products such as cryoprecipitate or fresh frozen plasma, which both contain the missing components in persons with hemophilia – for at least twice per day.

The estimated cost per infusion is around $2,000 to $3,000, she said.

“That means [you have to spend around] four thousand to six thousand dollars per day. So that’s how expensive the medicines are.”

Because of this, advocates like her are aiming to have increased PhilHealth coverage — which currently stands at only P25,000 every quarter.

“‘Di masyadong significant yun kung ang ginagastos mo ay milyun-milyon,” she stated.

(That amount is not so significant if you are spending millions for treatment.)

She likewise iterated their request to be included in the Z Benefit Package offered to PhilHealth members. This program is aimed at addressing health conditions that trigger prolonged hospitalization and very expensive treatments.

“Nakapag provide na kami sa PhilHealth ng mga data that they needed pero until now, wala pa rin, di pa rin umuusad and that was like six years ago,” she recalled.

(We already provided the data to PhilHealth, that was six years ago, until now there has been no progress with our request.)

This will also help many Filipinos to be properly diagnosed with hemophilia since it will lessen the cost of factor assay.

In the Philippines, The World Hemophilia Federation’s data bared that 1,566 Filipinos have hemophilia. Around 46 meanwhile have Willebrand disease – the most common bleeding disorder caused by missing or defective von Willebrand factor (vWF).

However, it was earlier estimated that there could be some 10,000 Filipinos affected with hemophilia and around one million others with von Willebrand Disease and other clotting factor deficiency disorders.

Trinidad attributed this low count of Filipinos diagnosed with hemophilia to the expensive lab examinations as well as the lack of diagnostics in the country.

National Hemophilia Day

In celebration of the National Hemophilia Day on Saturday, April 17, the Hemophilia Advocates-Philippines (HAP) will have a virtual celebration.

“We’re gonna have panel discussions with doctors. (Our theme) is “Adapting to Change.” So we’re gonna be discussing hemophilia in time of COVID,” Trinidad shared.

She also invites hemophilia patients, as well as families and advocates of the disease, to join their organization and apply for their livelihood and scholarship programs.

“May different programs kami sa Hemophilia Advocates-Philippines. We provide assistance para sa mga members namin na nawalan ng trabaho, yung mga affected ng calamities,” she said

(We have different programs in the Hemophilia Advocates-Philippines. We assist our members who have lost their jobs due to calamities and the pandemic.)

“Meron din kaming scholarship programs. We have two types of scholarship programs, one is in partnership with Virtualahan. Yung Virtualahan, they provide online training for those who want to become virtual assistants,” she added.

(We also have two types of scholarship programs. One is in partnership with Virtualahan, wherein we provide online training for those who want to become virtual assistants.)

She explained that it is really hard for persons with hemophilia to have jobs because even the smallest injuries can become life-threatening for them.

“May mag members kami na wala silang mga trabaho before, this was even before the pandemic, kasi mahirap sa hemophiliacs to work. Kasi pag severe ka and kunwari sumasakay ka lang ng jeep, masagi ka lang pwede ka mag bleed.”

(We have members who were already struggling to have jobs even before the pandemic. If you have a severe case of hemophilia and if, for example, you ride the jeepney on the way to work, even a light hit or touch can make you bleed.)

Those who are interested to join HAP can go to their website at https://www.hemophilia.ph/be-a-member.

They are also accepting donations which can be sent through their bank account: BDO Current Account #001348027123, Hemophilia Advocates-Philippines.

JPV

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