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Navigating the high seas of rare disease rreatment in Singapore: A deep dive into Sherry Toh’s experience and the current health policies

Singapore’s healthcare system grapples with the high cost of treating rare diseases. Patient advocate Sherry Toh, battling Spinal Muscular Atrophy, highlights the dichotomy between life-altering treatments and their exorbitant prices.

Critics, like Dr Paul Ananth Tambyah, argue that the Rare Disease Fund’s selective coverage is insufficient, calling for reforms, including aggressive price negotiations and possible local production of expensive drugs.

Published

1 year ago

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SINGAPORE: Amidst the stunning skyline of one of the world’s leading economic powerhouses, there’s a less visible struggle playing out. Singapore’s renowned healthcare system is grappling with an intricate challenge – how to manage the astronomical cost of treating rare diseases.

An individual who stands at the heart of this struggle is Sherry Toh, a former administrative assistant, now advocate, who’s been battling Spinal Muscular Atrophy (SMA) since her childhood.

Sherry’s story shared in a write-up on “We, the Citizen”, filled with grit, hope, and an ardent call for change, casts a spotlight on the lived experiences of rare disease patients in Singapore. It elucidates the harsh reality of these patients who are often caught between the promise of revolutionary medical treatments and the staggering price tags that accompany them.

A glimpse into Sherry’s life journey reveals a story of resilience. Diagnosed with SMA, a rare genetic disorder that progressively weakens skeletal muscles, her life has largely unfolded in the confines of a wheelchair.

Childhood memories are woven with the narrative of physical limitations, the ceaseless reliance on others, and the enduring spirit to embrace life nonetheless.

“Growing up with SMA was certainly challenging. Mundane activities that most people take for granted, like eating, dressing, or even moving about freely, posed as daunting challenges for me,” shared Sherry .

A written reply from Singapore Health Minister Ong Ye Kung in March 2023 to a Parliamentary question filed by Louis Chua, Member of Parliament for Sengkang GRC, revealed that about 40 to 50 persons in Singapore are currently diagnosed with SMA.

Life, however, had a dramatic turn for Sherry when she was granted access to Risdiplam, an SMA drug, through a clinical trial.

The drug Risdiplam, sold under the brand name Evrysdi, is an oral medicine and the only treatment option registered with and approved by Health Science Authority (HSA), and It costs around S$375,000 a year in Singapore’s public healthcare institutions.

This medicine, she recounts, redefined her life’s trajectory and offered her a glimpse into a world less defined by her debilitating condition.

“Risdiplam has undeniably been a game-changer for me,” Sherry expressed, her voice brimming with gratitude. “It’s given me the ability to breathe without support, to project my voice louder, and to move with an ease I’d almost forgotten. It’s been truly transformative and offered me a semblance of a life that I’d stopped dreaming about.”

To facilitate Sherry’s treatment, payments will be made directly to the hospital in two installments: S$187,500, which constitutes 50% of the campaign target, and the remaining amount of the campaign, also S$187,500.

However, since Ms Toh’s crowdfunding campaign started in March, it is still 95% away from reaching the goal of S$375,000.

Despite Risdiplam’s life-altering effects, Sherry’s narrative illuminates a less celebrated aspect of rare disease treatments – their exorbitant cost.

These costs often escalate to hundreds of thousands of dollars annually, making these potentially life-saving treatments a luxury, inaccessible to many grappling with rare diseases and their families.

In an attempt to address this financial challenge, the Singapore government established the Rare Disease Fund (RDF). The RDF is designed to subsidize the cost of certain life-saving drugs for rare diseases.

However, this model has not been immune to criticism, with some arguing it only provides a band-aid solution to a more profound issue.

Leading the critique is Dr Paul Ananth Tambyah from the Singapore Democratic Party (SDP), who questions the sustainability of the RDF’s ‘listing approach.’

Under this scheme, only a select few treatments for specific rare diseases are covered, and this, Dr Tambyah points out, is far from a comprehensive solution.

“With its current structure, the RDF has a significant limitation,” explained Dr Tambyah.

Since its inception in 2019, it has made grant payouts of around $1 million. It’s projecting to disburse about $1.5 million this financial year for the same group of patients.

Now consider this against the cost of treating just one rare disease, such as SMA that Sherry battles. The expense involved would far exceed the entirety of the RDF’s disbursements in the past two years.

Dr Tambyah suggests that the current approach is not equipped to meet the high-cost demands associated with rare diseases. According to him, the inadequacy of the funds available in comparison to the rising costs of treatments poses an issue that’s bound to escalate.

To address this, Dr Tambyah proposes a radically different solution. As an alternative to the current framework, he suggests that the government, as the insurance provider, should engage in aggressive price negotiations with drug manufacturers.

In instances where these negotiations do not lead to substantial price reductions, he proposes enacting compulsory licensing to locally produce these drugs, thus bypassing the crippling costs.

“The bottom line is that having a child with a rare disease shouldn’t force parents into making an unthinkable choice – between letting their child suffer and die or confronting bankruptcy,” stated Dr Tambyah emphatically.

His statement not only echoes the sentiments of many rare disease patients but also offers a glimpse into the tangible fears and heart-wrenching decisions families like Sherry’s grapple with regularly.

When asked about the view of having rare diseases covered through crowd-sourcing or charity funds, Dr Tambyah said that he does not think this is appropriate.

“There are many problematic issues with crowdfunding although it is widely practised all over the world for drugs like zolgensma — these include loss of privacy, overstating the benefits of the drugs and a host of other issues covered in this article.”

“The drug company which makes zolgensma has tried to respond to global criticism of its pricing by introducing a lottery in which 100 children get the drug free – that is even more problematic as it creates a kind of “hunger games” situation.”

“The SDP believes that healthcare is a basic human right and there should not be a price to that. There are alternative approaches which can and should be used.” said Dr Tambyah.

In the grand tapestry of Singapore’s healthcare system, stories like Sherry’s and the vocal critique of policy-makers like Dr Tambyah serve as potent reminders.

They underscore the urgent need to reevaluate and reform existing structures. They challenge the city-state to reconfigure its approach to ensure it continues to lead as a nation that upholds the health of all its citizens – not just those with common diseases, but those confronting the rare and the complex.

The crux remains clear – sustainable, equitable, and comprehensive solutions are not a mere option, but an absolute necessity for the sake of the patients who are at the heart of this healthcare narrative.

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Commentaries

Lim Tean criticizes Govt’s rejection of basic income report, urges Singaporeans to rethink election choices

Lim Tean, leader of Peoples Voice (PV), criticizes the government’s defensive response to the basic living income report, accusing it of avoiding reality.

He calls on citizens to assess affordability and choose MPs who can truly enhance their lives in the upcoming election.

Published

1 year ago

on

15 September 2023

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SINGAPORE: A recently published report, “Minimum Income Standard 2023: Household Budgets in a Time of Rising Costs,” unveils figures detailing the necessary income households require to maintain a basic standard of living, using the Minimum Income Standard (MIS) method.

The newly released study, spearheaded by Dr Ng Kok Hoe of the Lee Kuan Yew School of Public Policy (LKYSPP) specifically focuses on working-age households in 2021 and presents the latest MIS budgets, adjusted for inflation from 2020 to 2022.

The report detailed that:

  • The “reasonable starting point” for a living wage in Singapore was S$2,906 a month.
  • A single parent with a child aged two to six required S$3,218 per month.
  • Partnered parents with two children, one aged between seven and 12 and the other between 13 and 18, required S$6,426 a month.
  • A single elderly individual required S$1,421 a month.
  • Budgets for both single and partnered parent households averaged around S$1,600 per member. Given recent price inflation, these figures have risen by up to 5% in the current report.

Singapore Govt challenges MIS 2023 report’s representation of basic needs

Regrettably, on Thursday (14 Sept), the Finance Ministry (MOF), Manpower Ministry (MOM), and Ministry of Social and Family Development (MSF) jointly issued a statement dismissing the idea suggested by the report, claiming that minimum household income requirements amid inflation “might not accurately reflect basic needs”.

Instead, they claimed that findings should be seen as “what individuals would like to have.”, and further defended their stances for the Progressive Wage Model (PWM) and other measures to uplift lower-wage workers.

The government argued that “a universal wage floor is not necessarily the best way” to ensure decent wages for lower-wage workers.

The government’s statement also questions the methodology of the Minimum Income Standards (MIS) report, highlighting limitations such as its reliance on respondent profiles and group dynamics.

“The MIS approach used is highly dependent on respondent profiles and on group dynamics. As the focus groups included higher-income participants, the conclusions may not be an accurate reflection of basic needs.”

The joint statement claimed that the MIS approach included discretionary expenditure items such as jewellery, perfumes, and overseas holidays.

Lim Tean slams Government’s response to basic living income report

In response to the government’s defensive reaction to the recent basic living income report, Lim Tean, leader of the alternative party Peoples Voice (PV), strongly criticizes the government’s apparent reluctance to confront reality, stating, “It has its head buried in the sand”.

He strongly questioned the government’s endorsement of the Progressive Wage Model (PWM) as a means to uplift the living standards of the less fortunate in Singapore, describing it as a misguided approach.

In a Facebook video on Friday (15 Sept), Lim Tean highlighted that it has become a global norm, especially in advanced and first-world countries, to establish a minimum wage, commonly referred to as a living wage.

“Everyone is entitled to a living wage, to have a decent life, It is no use boasting that you are one of the richest countries in the world that you have massive reserves, if your citizens cannot have a decent life with a decent living wage.”

Lim Tean cited his colleague, Leong Sze Hian’s calculations, which revealed a staggering 765,800 individuals in Singapore, including Permanent Residents and citizens, may not earn the recommended living wage of $2,906, as advised by the MIS report.

“If you take away the migrant workers or the foreign workers, and take away those who do not work, underage, are children you know are unemployed, and the figure is staggering, isn’t it?”

“You know you are looking at a very substantial percentage of the workforce that do not have sufficient income to meet basic needs, according to this report.”

He reiterated that the opposition parties, including the People’s Voice and the People’s Alliance, have always called for a minimum wage, a living wage which the government refuses to countenance.

Scepticism about the government’s ability to control rising costs

In a time of persistently high inflation, Lim Tean expressed skepticism about the government’s ability to control rising costs.

He cautioned against believing in predictions of imminent inflation reduction and lower interest rates below 2%, labeling them as unrealistic.

Lim Tean urged Singaporeans to assess their own affordability in these challenging times, especially with the impending GST increase.

He warned that a 1% rise in GST could lead to substantial hikes in everyday expenses, particularly food prices.

Lim Tean expressed concern that the PAP had become detached from the financial struggles of everyday Singaporeans, citing their high salaries and perceived insensitivity to the common citizen’s plight.

Lim Tean urges Singaporeans to rethink election choices

Highlighting the importance of the upcoming election, Lim Tean recommended that citizens seriously evaluate the affordability of their lives.

“If you ask yourself about affordability, you will realise that you have no choice, In the coming election, but to vote in a massive number of opposition Members of Parliament, So that they can make a difference.”

Lim Tean emphasized the need to move beyond the traditional notion of providing checks and balances and encouraged voters to consider who could genuinely improve their lives.

“To me, the choice is very simple. It is whether you decide to continue with a life, that is going to become more and more expensive: More expensive housing, higher cost of living, jobs not secure because of the massive influx of foreign workers,” he declared.

“Or you choose members of Parliament who have your interests at heart and who want to make your lives better.”

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Political observers call for review of Singapore’s criteria of Presidential candidates and propose 5 year waiting period for political leaders

Singaporean political observers express concern over the significantly higher eligibility criteria for private-sector presidential candidates compared to public-sector candidates, calling for adjustments.

Some also suggest a five year waiting period for aspiring political leaders after leaving their party before allowed to partake in the presidential election.

Notably, The Workers’ Party has earlier reiterated its position that the current qualification criteria favor PAP candidates and has called for a return to a ceremonial presidency instead of an elected one.

Published

1 year ago

on

5 September 2023

By

While the 2023 Presidential Election in Singapore concluded on Friday (1 September), discussions concerning the fairness and equity of the electoral system persist.

Several political observers contend that the eligibility criteria for private-sector individuals running for president are disproportionately high compared to those from the public sector, and they propose that adjustments be made.

They also recommend a five-year waiting period for aspiring political leaders after leaving their party before being allowed to participate in the presidential election.

Aspiring entrepreneur George Goh Ching Wah, announced his intention to in PE 2023 in June. However, His application as a candidate was unsuccessful, he failed to receive the Certificate of Eligibility (COE) on 18 August.

Mr Goh had expressed his disappointment in a statement after the ELD’s announcement, he said, the Presidential Elections Committee (PEC) took a very narrow interpretation of the requirements without explaining the rationale behind its decision.

As per Singapore’s Constitution, individuals running for the presidency from the private sector must have a minimum of three years’ experience as a CEO in a company.

This company should have consistently maintained an average shareholders’ equity of at least S$500 million and sustained profitability.

Mr Goh had pursued eligibility through the private sector’s “deliberative track,” specifically referring to section 19(4)(b)(2) of the Singapore Constitution.

He pointed out five companies he had led for over three years, collectively claiming a shareholders’ equity of S$1.521 billion.

Notably, prior to the 2016 revisions, the PEC might have had the authority to assess Mr Goh’s application similarly to how it did for Mr Tan Jee Say in the 2011 Presidential Election.

Yet, in its current formulation, the PEC is bound by the definitions laid out in the constitution.

Calls for equitable standards across public and private sectors

According to Singapore’s Chinese media outlet, Shin Min Daily News, Dr Felix Tan Thiam Kim, a political analyst at Nanyang Technological University (NTU) Singapore, noted that in 2016, the eligibility criteria for private sector candidates were raised from requiring them to be executives of companies with a minimum capital of S$100 million to CEOs of companies with at least S$500 million in shareholder equity.

However, the eligibility criteria for public sector candidates remained unchanged. He suggests that there is room for adjusting the eligibility criteria for public sector candidates.

Associate Professor Bilver Singh, Deputy Head of the Department of Political Science at the National University of Singapore, believes that the constitutional requirements for private-sector individuals interested in running are excessively stringent.

He remarked, “I believe it is necessary to reassess the relevant regulations.”

He points out that the current regulations are more favourable for former public officials seeking office and that the private sector faces notably greater challenges.

“While it may be legally sound, it may not necessarily be equitable,” he added.

Proposed five-year waiting period for political leaders eyeing presidential race

Moreover, despite candidates severing ties with their political parties in pursuit of office, shedding their political affiliations within a short timeframe remains a challenging endeavour.

A notable instance is Mr Tharman Shanmugaratnam, who resigned from the People’s Action Party (PAP) just slightly over a month before announcing his presidential candidacy, sparking considerable debate.

During a live broadcast, his fellow contender, Ng Kok Song, who formerly served as the Chief Investment Officer of GIC, openly questioned Mr Tharman’s rapid transition to a presidential bid shortly after leaving his party and government.

Dr Felix Tan suggests that in the future, political leaders aspiring to run for the presidency should not only resign from their parties but also adhere to a mandatory waiting period of at least five years before entering the race.

Cherian George and Kevin Y.L. Tan: “illogical ” to raise the corporate threshold in 2016

Indeed, the apprehension regarding the stringent eligibility criteria and concerns about fairness in presidential candidacy requirements are not limited to political analysts interviewed by Singapore’s mainstream media.

Prior to PE2023, CCherian George, a Professor of media studies at Hong Kong Baptist University, and Kevin Y.L. Tan, an Adjunct Professor at both the Faculty of Law of the National University of Singapore and the NTU’s S. Rajaratnam School of International Studies (RSIS), brought attention to the challenges posed by the qualification criteria for candidates vying for the Singaporean Presidency.

In their article titled “Why Singapore’s Next Elected President Should be One of its Last,” the scholars discussed the relevance of the current presidential election system in Singapore and floated the idea of returning to an appointed President, emphasizing the symbolic and unifying role of the office.

They highlighted that businessman George Goh appeared to be pursuing the “deliberative track” for qualification, which requires candidates to satisfy the PEC that their experience and abilities are comparable to those of a typical company’s chief executive with shareholder equity of at least S$500 million.

Mr Goh cobbles together a suite of companies under his management to meet the S$500m threshold.

The article also underscored the disparities between the eligibility criteria for candidates from the public and private sectors, serving as proxies for evaluating a candidate’s experience in handling complex financial matters.

“It is hard to see what financial experience the Chairman of the Public Service Commission or for that matter, the Chief Justice has, when compared to a Minister or a corporate chief.”

“The raising of the corporate threshold in 2016 is thus illogical and serves little purpose other than to simply reduce the number of potentially eligible candidates.”

The article also touches upon the issue of candidates’ independence from political parties, particularly the ruling People’s Action Party (PAP).

It mentions that candidates are expected to be non-partisan and independent, and it questions how government-backed candidates can demonstrate their independence given their previous affiliations.

The Workers’ Party advocate for a return to a ceremonial presidency

It comes as no surprise that Singapore’s alternative party, the Workers’ Party, reaffirmed its stance on 30 August, asserting that they believe the existing qualifying criteria for presidential candidates are skewed in favour of those approved by the People’s Action Party (PAP).

They argue that the current format of the elected presidency (EP) undermines the principles of parliamentary democracy.

“It also serves as an unnecessary source of gridlock – one that could potentially cripple a non-PAP government within its first term – and is an alternative power centre that could lead to political impasses.”

Consistently, the Workers’ Party has been vocal about its objection to the elected presidency and has consistently called for its abolition.

Instead, they advocate for a return to a ceremonial presidency, a position they have maintained for over three decades.

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