Study probes cracks in ALS care in the Philippines
15 May 2024
The review noted that while databases, which are crucial to policymaking, are being created for other neurological disorders, none is being done for motor neuron diseases (MNDs), in particular, ALS. Likewise, there has been no additional legislation and policymaking concerning ALS, since the viral ALS Bucket Challenge in 2014 spurred the government to start research.
More specifically, epidemiologic data for neurological diseases in the Philippines has been wanting. Ditan and Turalde observed hardly any epidemiology study on ALS, with just a single study looking into the incidence of MNDs, and four studies mentioning in passing the ALS cases in Filipino emigrants.
State of diagnostics and training in ALS management in the country
With ALS being a progressive, incurable, fatal, motor-neuron disease, the approach to management is supportive, multidisciplinary, and quality of life-oriented. Based on two sets of criteria, Revised El Escorial and Awaji, progressive symptoms, alongside clinical or EMG-based motor neuron signs, are said to be diagnostic. Ditan and Turalde reported a total of 30 electromyography laboratories nationwide. Most of these labs are in the capital and its surroundings (13 in in the National Capital region [NCR], two in Region I, seven in Region II, three apiece in Regions III and IV, and one apiece in Regions V, IX, and the Cordillera Administrative Region).
Ditan and Turalde also reported 13 institutions in the country that train in adult neurology, with nine located only in NCR. In place of an ALS-focused clinical rotation, the training requires three months of the more general electrodiagnostics. The review noted only two institutions that offer subspecialty fellowship training in electrodiagnostic neurology and neurophysiology, but none was reported for ALS.
The findings above result in a lack of access to diagnostics and treatment expertise for many suspected ALS patients in the country, especially for those who live outside of the capital region, who are further burdened by the additional cost of traveling.
Drugs vs. ALS
Ditan and Turalde also discussed the lack of drugs for ALS treatment in the Philippines. Despite conferring increased survival in ALS patients, the US-FDA-approved and globally licensed riluzole is unfortunately not available in the country, they said.
Edaravone and sodium phenylbutyrate + taurursodiol were also approved by US-FDA for ALS treatment. While available in the Philippines, edaravone, the researchers said, is only indicated as a neuroprotectant in acute stroke, costing about PhP53,000 (~USD930) per treatment cycle. They also mentioned a third drug, sodium phenylbutyrate + taurursodiol, which has only been recently USFDA- approved based on a recent multicentral trial showing improved ALFRS-R score versus placebo over 24 weeks.
Treatment cost: the dire out-of-pocket reality
According to Ditan and Turalde, country data on medical expenses for ALS patients are lacking. Possible cost of care for ALS, they said, can be gleaned from the list of medical case rates obtained from the Philippine Health Insurance Corporation (PhilHealth). They noted that the case rate for ALS that PhilHealth covers is PhP10,400 (~USD180); this is broken down between physician (PhP3,120 or ~USD55) and healthcare institution fees. For advanced ALS with severe respiratory distress and dysphagia, the review noted that tracheostomy costs PhP12,120 (~USD210); gastrostomy, PhP37800 (~USD670).
The scoping review observed that, while PhilHealth can defray the cost of care, Filipinos still pay out of their pockets a 41.5 percent of the country’s healthcare expenses. This out-of-pocket expense is disproportionate, considering that the average annual income of the Filipino household was PhP307,190 (~USD5,400) in 2021, and 16 percent of this would go to tracheostomy and gastrostomy, according to Ditan and Turalde. Meanwhile, the out-of-pocket spending in the country is in stark contrast with the healthcare in Thailand, where the bulk of the expenditure rests with its universal coverage scheme.
Ditan and Turalde’s review has identified research and management gaps in the care of ALS in the Philippines. They observed that “the limitations in management appear to be multifactorial – from political, medical, to social and financial. Improving healthcare in the country for ALS requires political will to drive for more capital in this area of study.” Key to forming sound policies is “the establishment of a national database.” The policies, in turn, will “support further financial assistance, support groups, and more accessible diagnostic centers and medications for patients with ALS.”
More understanding of the disease by all stakeholders through research and public information drives will help inform the “campaigns to make riluzole, edaravone, and sodium-phenylbutyrate + taurursodiol available and accessible for patients.”
And speaking of stakeholders, “more easily digestible information should be made available to the public to increase meaningful awareness and interest in the disease.”
More specifically, epidemiologic data for neurological diseases in the Philippines has been wanting. Ditan and Turalde observed hardly any epidemiology study on ALS, with just a single study looking into the incidence of MNDs, and four studies mentioning in passing the ALS cases in Filipino emigrants.
State of diagnostics and training in ALS management in the country
With ALS being a progressive, incurable, fatal, motor-neuron disease, the approach to management is supportive, multidisciplinary, and quality of life-oriented. Based on two sets of criteria, Revised El Escorial and Awaji, progressive symptoms, alongside clinical or EMG-based motor neuron signs, are said to be diagnostic. Ditan and Turalde reported a total of 30 electromyography laboratories nationwide. Most of these labs are in the capital and its surroundings (13 in in the National Capital region [NCR], two in Region I, seven in Region II, three apiece in Regions III and IV, and one apiece in Regions V, IX, and the Cordillera Administrative Region).
Ditan and Turalde also reported 13 institutions in the country that train in adult neurology, with nine located only in NCR. In place of an ALS-focused clinical rotation, the training requires three months of the more general electrodiagnostics. The review noted only two institutions that offer subspecialty fellowship training in electrodiagnostic neurology and neurophysiology, but none was reported for ALS.
The findings above result in a lack of access to diagnostics and treatment expertise for many suspected ALS patients in the country, especially for those who live outside of the capital region, who are further burdened by the additional cost of traveling.
Drugs vs. ALS
Ditan and Turalde also discussed the lack of drugs for ALS treatment in the Philippines. Despite conferring increased survival in ALS patients, the US-FDA-approved and globally licensed riluzole is unfortunately not available in the country, they said.
Edaravone and sodium phenylbutyrate + taurursodiol were also approved by US-FDA for ALS treatment. While available in the Philippines, edaravone, the researchers said, is only indicated as a neuroprotectant in acute stroke, costing about PhP53,000 (~USD930) per treatment cycle. They also mentioned a third drug, sodium phenylbutyrate + taurursodiol, which has only been recently USFDA- approved based on a recent multicentral trial showing improved ALFRS-R score versus placebo over 24 weeks.
Treatment cost: the dire out-of-pocket reality
According to Ditan and Turalde, country data on medical expenses for ALS patients are lacking. Possible cost of care for ALS, they said, can be gleaned from the list of medical case rates obtained from the Philippine Health Insurance Corporation (PhilHealth). They noted that the case rate for ALS that PhilHealth covers is PhP10,400 (~USD180); this is broken down between physician (PhP3,120 or ~USD55) and healthcare institution fees. For advanced ALS with severe respiratory distress and dysphagia, the review noted that tracheostomy costs PhP12,120 (~USD210); gastrostomy, PhP37800 (~USD670).
The scoping review observed that, while PhilHealth can defray the cost of care, Filipinos still pay out of their pockets a 41.5 percent of the country’s healthcare expenses. This out-of-pocket expense is disproportionate, considering that the average annual income of the Filipino household was PhP307,190 (~USD5,400) in 2021, and 16 percent of this would go to tracheostomy and gastrostomy, according to Ditan and Turalde. Meanwhile, the out-of-pocket spending in the country is in stark contrast with the healthcare in Thailand, where the bulk of the expenditure rests with its universal coverage scheme.
Ditan and Turalde’s review has identified research and management gaps in the care of ALS in the Philippines. They observed that “the limitations in management appear to be multifactorial – from political, medical, to social and financial. Improving healthcare in the country for ALS requires political will to drive for more capital in this area of study.” Key to forming sound policies is “the establishment of a national database.” The policies, in turn, will “support further financial assistance, support groups, and more accessible diagnostic centers and medications for patients with ALS.”
More understanding of the disease by all stakeholders through research and public information drives will help inform the “campaigns to make riluzole, edaravone, and sodium-phenylbutyrate + taurursodiol available and accessible for patients.”
And speaking of stakeholders, “more easily digestible information should be made available to the public to increase meaningful awareness and interest in the disease.”