Specialized training, upgrades eyed for hospitals to aid Pinoys with rare diseases

A year after a law was passed to improve the access of persons with rare diseases to healthcare, regional hospitals are still saddled with difficulties in having specialists and special equipment at hand to treat them.

Dr. Padilla, Sec. Ubial, Dr. Calibo pose with kids being treated for their rare diseases. pic.twitter.com/n6QAmBWFyZ

— Rie Takumi (@rie_takumi) February 22, 2017

At the first Philippine Rare Disease Symposium, Health Secretary Paulyn Jean Rosell-Ubial explained that this was an extension of the country’s longstanding problem with its health system.

"The biggest challenge of the Philippine healthcare system, aside from infrastructure, is human resource," she said at the event on Wednesday. "For several years since the devolution of health services in 1992, we did not have capital outlay in hospitals. That is why the state of our public hospitals across the country is really dismal."

Under Republic Act 10747 or the Rare Diseases Act of 2016, persons with or suspected to have rare diseases are supposed to have improved access to "comprehensive medical care and to timely health information to help them cope with their condition."

A portion from the P2 billion allocated to the DOH in December for free medicines to indigents will be used for this law, which will also have its own funding.

However, Ubial said providing the law P1 billion is a “drop in the bucket” compared to the true cost of the country’s drug expenditure.

“The total health expenditure of the country for drugs and medicines is about P400 billion. So providing P1 billion is a drop in the bucket. That’s not even four percent or five percent of the total needs,” she said.

One way of addressing this is through the creation of child development centers in every regional hospital to allow them to screen, diagnose, manage, and rehabilitate people with rare diseases.

“We’re trying to develop an infrastructure in the entire country where they don’t have to go to Manila to get diagnosed and care. So they stay in their area, but we have to develop the regional hospitals and medical centers,” Ubial said.

Complementing this is the newborn screening process introduced to 6,000 hospitals recently to diagnose rare diseases in infants right out of the womb.

Dr. Carmencita Padilla, Chancellor of the University of the Philippines Manila (UPM), said this service must be backed by knowledgeable health providers so it will not stop at just detection.

"[The DOH] said they might have to look into training, and maybe key focus training to our people in the field so they can actually address these patients... We already have the infrastructure, enhancing na lang siguro ang kailangan, putting more knowledge to [the field]," she said.

All of this will be addressed in the implementing rules and regulations for RA 10747 that is still being drafted by the DOH and its partner organizations.

“We’re actually looking at providing drugs and medicines initially through our DOH hospitals. And then there’s long-term planning in terms of improving the capacities for detection, yung upgrading the laboratory, and also for the training of the doctors,” Ubial said.

“Eventually, we’re looking at upgrading… the mega hospitals across the country so that they have multidisciplinary and varying specialties available in one center.”

Dr Carmencita Padilla, UPM Chancellor, says current sys cannot detect # of Fils w/ rare diseases but the system is being improved now. pic.twitter.com/a0PUrBfaFI

— Rie Takumi (@rie_takumi) February 22, 2017

What are rare diseases?

The Philippine Society for Orphan Disorders (PSOD), a group of patients with rare diseases (also known as orphan diseases), their caregivers and supporters, define a rare disease as "any health condition resulting from genetic defects that rarely affect the general population."

In the Philippines, a disease is considered rare if it affects one person in every 20,000 individuals or fewer.

According to European rare diseases group Eurordis, a disease that affects fewer than one person in 2,000 is considered a rare disease in Europe, while in the US a disease is considered rare when it affects fewer than 200,000 Americans at a given time.

There are more than 6,000 known rare diseases worldwide.

Rough calculations by the UPM and DOH estimates that 100,000 Filipinos as of the most recent survey have a rare disease.

“Hindi lang natin sila nada-diagnose in the past. If I go back to before newborn screening started, we did not have these 100,000 patients. It just so happens that we have the infrastructure to diagnose them now at affordable costs,” Padilla said.

The Asian Metabolic Registry

A workshop was also held on Wednesday that led to the creation of the Asian Metabolic Registry, which seeks the creation of a regional registry to pool resources of various countries together to address the problem of rare diseases.

“Our efforts is not only for our country. Our efforts actually is to help the other countries in the region, since the Philippines is considered as one of the leading groups in the field of rare diseases,” Padilla said.

According to DOH Health Program Officer Dr. Anthony Calibo, all these efforts to help patients with rare disease manage their symptoms are to help them live normal lives.

"With proper intervention and rehabilitation, they will be able to reach the same potential as their normal counterparts," Calibo said.

"It's getting both the government and private sector to cover all needs of the patient. When I say all needs, it spans from birth, that's the screening; treatment, which can be both government insurance or the private sector; education, they may be disabled but they have to go to school; and eventually getting a job. They can be productive individuals," Padilla added. — BM, GMA News