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Desperate parents launch S$2.4 million crowdfunding campaign to save baby Lucas from rare genetic disorder

Lucas, a 2-month old baby diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disorder that requires Zolgensma treatment priced at S$ 2.4 million, which is not subsidised by the government, nor is SMA treatment covered by the Rare Disease Fund.

His parents, unable to afford it, appeal for crowdfunding. SMA progressively weakens muscles, robbing him of basic abilities. They seek the compassionate community’s support to give Lucas a fighting chance at life.

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1 year ago

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SINGAPORE — Lucas, a 2-month-old baby diagnosed with a rare genetic disorder, has parents who have been left with no choice but to appeal for crowdfunding from the public.

Lucas was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 which requires Zolgensma treatment priced at S$2.4 million, which is not subsidised by the government.

SMA Type 1, also known as Werdnig-Hoffmann disease, is a genetic neuromuscular disorder that progressively weakens and damages muscles over time, affecting the brain and spinal cord. Unfortunately, the damage caused by this disorder is irreversible.

According to the parents, Andy and Lavin, who shared information on the crowdfunding platform Ray of Hope, they noticed abnormal signs when Lucas turned two months old. He did not seem to enjoy using his legs to stretch or kick.

By his 9th week, the parents decided to consult with doctors. However, their hearts sank when they observed the doctors’ unexpected reactions, followed by a flurry of tests.

On June 26, 2023, Lucas was diagnosed with SMA Type 1, which typically has a life expectancy of only two years.

“SMA will relentlessly ravage his tiny muscles, denying him the simple pleasures we often take for granted—sitting, crawling, standing, walking, swallowing, and even breathing.”

Currently, Lucas relies on two temporary medical supports to survive: a nose mask connected to a ventilator and a feeding tube painfully inserted into his nose.

Unlike other children, Lucas drinks his milk from his nose through the tube.

There is a treatment called Zolgensma that can save Lucas’ life.

However, the cost of S$ 2.4 million is an overwhelming sum beyond Andy and Lavin’s means, in which they described it as ‘the world’s most expensive drug’.

“Thus, we are humbly turning to the compassionate community for help. We know that this is a big ask and an ambitious goal. But as parents, we must do everything we can to give our son a fighting chance at life.”

The parents also ask for assistance in sharing their crowdfunding campaign and reaching out to organisations, communities, or sponsors who may be willing to support them.

Individuals who wish to help save baby Lucas’ life can donate via the following link: https://rayofhope.sg/campaign/baby-lucas/, or reach out to the parents on [email protected] for further details.

The public can also stay updated on the crowdfunding and Lucas’ treatment progress through Instagram and Facebook.

As of 12 July, the parents have managed to raise S$ 824,950, which is only 34% of the total cost. Nearly S$ 1.5 million is still needed to secure the treatment for baby Lucas.

Other parents who also had to sought crowdfunding for their kids dignosed with the rare genetic disorder

In April 2023, TOC reported that another 19-month-old baby, Pilapitiya Shamel Adrian, also diagnosed with SMA when he was 14 months old, raised a fund of S$3 million to secure the one-time gene therapy drug Zolgensma.

A spokesperson from National University Hospital (NUH) revealed that Onasemnogene abeparvovec (Zolgensma) is a novel drug that was approved by the US Food and Drug Administration (FDA) in May 2019 as a one-time gene therapy for children.

In November 2022, The Straits Times reported that the parents of a five-month-old boy with SMA type 1 had just managed to raise $3 million through crowdfunding for his treatment.

Available in Singapore only via the Special Access Route – which allows for unregistered life-saving drugs to be imported into the country – it is often touted as the most expensive drug in the world, costing almost $3 million.

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.

Risdiplam is 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.

Health Minister: Singapore’s healthcare financing system is not designed to support such high-cost treatments

On 8 November 2022, the Health Minister, in a written reply to parliamentary questions filed by MP for Aljunied GRC, Leon Perera, stated that Singapore’s healthcare financing system is not designed to support such high-cost treatments for rare illnesses.

He noted how the financial needs of Singapore citizens with rare diseases are supported collectively through the Rare Disease Fund (RDF) with the Government providing three dollars of matching grants for every dollar of donation.

He pointed to examples of how some patients are able to obtain support from the community through crowd-funding or other charity funds and shared that the Ministry of Health (MOH) will continue to monitor the situation and work towards expanding the scope of RDF treatments that can be supported.

“We also encourage members of the public to support the RDF with donations so that more medicines and conditions can be listed, and more patients can be supported.”

According to RDF’s website, a rare disease is defined as one which affects fewer than one in 2,000 patients.

Currently, the RDF has listed 7 medicines for 5 conditions.

$19.2million raised by RDF in 2022

In another parliamentary reply, Mr Ong revealed that the RDF raised $4.9m in public donations in the calendar year of 2022.

$2.3m was contributed by foundations, $1.3m was from companies, and the remaining was from individuals and others.

Together with the Government’s $3 to $1 matching grant, this brings the total funds raised by RDF in 2022 to $19.2m.

SDP Chairman: healthcare is a basic human right, not appropriate to fund treatment of rare diseases through crowd-funding or charity funds

However, in November last year, Dr Paul Ananth Tambyah, the Chairman of the Singapore Democratic Party (SDP), expressed his viewpoint that relying on crowdfunding or charity-based funds to support treatments for patients with rare diseases is not appropriate for Singapore.

Dr Tambyah highlighted several problematic issues associated with crowdfunding, despite its widespread practice worldwide for drugs like Zolgensma. These issues include loss of privacy, overstating the benefits of drugs, and various other concerns.

“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.

Dr Tambyah, who established the National University Hospital’s Division of Infectious Diseases in 2003, noted that SDP’s healthcare policy proposed negotiating intensely with the manufacturers of these drugs and devices to force lower prices.

He said that this has already worked even for a drug like zolgensma which is cheaper in Japan than in most other countries due to Japanese government negotiations.

“If this does not work, the SDP plan advocates compulsory licensing, which is to enable parallel drug manufacturers to produce the drugs – this has been done for other drugs in Thailand, India and Brazil and there is a good chance that this will happen with these expensive gene therapies with time.”

“This is actually allowed under the WTO’s TRIPs but only in low and middle-income countries because the assumption is that high-income countries will pay for these drugs for their citizens.”

“Unfortunately for those in Singapore and the United States, that is not always true and children born with these conditions may have to depend on charity.”

“This is really unfair as it is no fault of the child and that is why we in the SDP believe in a universal insurance policy which has a reinsurance component. The whole concept of insurance is risk pooling against rare and unusual situations.” said Dr Tambyah.

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Survey reveals one-third of Singaporean youth struggle with severe mental health issues

A national study by the Institute of Mental Health reveals that 30.6% of Singaporean youth suffer from severe symptoms of depression, anxiety, or stress, driven by factors like excessive social media use, body image concerns, and cyberbullying. The findings emphasize the need for early intervention and targeted mental health strategies.

Published

2 weeks ago

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23 September 2024

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A significant portion of Singapore’s youth are experiencing severe mental health challenges, according to a comprehensive national survey conducted by the Institute of Mental Health (IMH).

The National Youth Mental Health Study (NYMHS), released on 19 September 2023, found that 30.6% of individuals aged 15 to 35 reported severe or extremely severe symptoms of depression, anxiety, or stress, with key risk factors including excessive social media use, body shape concerns, and experiences of cyberbullying.

The study, which surveyed 2,600 Singaporean citizens and permanent residents, highlights the growing mental health concerns among Singaporean youth and suggests the need for more targeted interventions and support systems.

Mental Health Issues Prevalent Among Youth

Anxiety was the most common mental health issue, with 27% of respondents reporting severe or extremely severe symptoms, followed by depression (14.9%) and stress (12.9%).

These findings underscore the high prevalence of mental health issues among young people, particularly in those aged 15 to 24, who were more likely to report severe symptoms compared to older participants.

According to the IMH, young people who were female, single, unemployed, or had lower levels of education or household income were more prone to severe mental health symptoms.

For example, youth with monthly household incomes below S$5,000 were more likely to experience severe anxiety​.

Key Risk Factors: Social Media, Body Image, and Cyberbullying

The study identified three major factors linked to severe mental health symptoms:

  1. Excessive Social Media Use: Around 27% of respondents reported using social media for more than three hours daily, which was associated with a significantly higher likelihood of severe mental health issues. Youth with excessive social media use were 1.5 to 1.6 times more likely to experience severe symptoms of depression, anxiety, or stress​.
  2. Body Shape Concerns: About 20.2% of youth had moderate to severe concerns about their body image. These individuals were 4.9 times more likely to experience severe depression, 4.3 times more likely to experience severe anxiety, and 4.5 times more likely to suffer from severe stress​. Such concerns were often linked to social media exposure, which can perpetuate unrealistic beauty standards and increase dissatisfaction with one’s body.
  3. Cyberbullying: One in five youth (21%) reported being victims of cyberbullying. These individuals were approximately twice as likely to report severe mental health symptoms compared to those who had not experienced such harassment​. The anonymity and pervasive nature of online bullying exacerbates the mental health toll on young people, according to the study.

Demographics at Higher Risk

The study found that specific demographics were more vulnerable to mental health issues. Young people aged 15 to 24 were more likely to experience anxiety, depression, and stress, particularly females, those who were single, and those with lower levels of education, such as junior college or vocational qualifications​.

The Malay ethnic group was also found to have a higher prevalence of severe mental health symptoms compared to other ethnic groups​.

Barriers to Seeking Help and Sources of Support

Although about 69.1% of those with severe mental health symptoms sought help—primarily from family and friends—a significant portion of young people hesitated to seek professional support.

The top reasons included concerns about privacy, fear of judgment, and doubts about the effectiveness of professional services​.

Among those who sought help, family and friends were the most common sources of support (57.9%), followed by self-help measures (31.1%) and medical services (20.1%)​.

However, the reluctance to seek professional help highlights the need for continued efforts to destigmatize mental health treatment and increase awareness of available services.

Protective Factors: Resilience, Social Support, and Self-Esteem

The study also identified factors that helped mitigate mental health challenges. Youth who reported higher levels of resilience, perceived social support, and self-esteem were significantly less likely to experience severe symptoms of depression, anxiety, or stress.

This suggests that fostering strong support networks and building resilience in youth could play a critical role in improving their mental well-being​.

Government Response and Preventive Measures

The findings of the NYMHS support Singapore’s broader National Mental Health and Well-Being Strategy, launched in October 2023, which adopts a whole-of-government and whole-of-society approach to addressing mental health concerns. Schools have already begun integrating mental health education into their curricula, equipping students with the knowledge and skills to manage their well-being.

Additionally, the government introduced the Parenting for Wellness toolbox in September 2023 to help parents manage their children’s screen time and promote healthy social media usage.

A guide on responsible social media use, expected to be released by mid-2025, will offer further strategies to mitigate the negative impacts of excessive screen time and online harassment​.

Future Implications and Policy Development

Associate Professor Swapna Verma, chairman of IMH’s medical board and co-principal investigator of the study, emphasized the importance of early intervention.

“Not all individuals with severe or extremely severe symptoms of depression or anxiety have a clinical condition, but being in such states for a prolonged period of time can be detrimental to their well-being,” she said​.

The study’s data will help policymakers and healthcare providers develop more targeted approaches to address the mental health needs of Singapore’s youth, especially those most at risk.

Associate Professor Mythily Subramaniam, IMH’s assistant chairman of medical board (research), stressed the need to pay attention to issues like excessive social media use and cyberbullying, noting their “tremendous impact on youth mental health” and the importance of preventive measures​.

Support for Youth Facing Mental Health Challenges

Young people dealing with mental health challenges in Singapore have access to various resources:

  • CHAT (Centre of Excellence for Youth Mental Health): CHAT offers a safe and confidential space for youth to seek help through online and face-to-face mental health assessments and support.
  • Institute of Mental Health (IMH): IMH provides a comprehensive range of mental health services, including outpatient consultations and inpatient care. Youth in crisis can also seek immediate assistance from the 24-hour Mental Health Helpline at 6389 2222.
  • Samaritans of Singapore (SOS): SOS offers emotional support for those feeling distressed or experiencing suicidal thoughts. Their 24-hour hotline is 1767.
  • Health Promotion Board’s National Care Hotline: This hotline provides immediate emotional support for those in need and can be reached at 1800-202-6868.
  • Counselling Services: School-based counsellors, as well as community-based services such as TOUCH Youth, provide further avenues of support for young people grappling with mental health issues.
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Health

Malaysia reports new mpox case in man without recent international travel

Malaysia has confirmed its first mpox case of 2024 in a male patient, the Health Ministry reported. The patient is in isolation and stable, with authorities monitoring his contacts. This brings the total confirmed cases since July 2023 to ten, all from clade II.

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2 weeks ago

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17 September 2024

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MALAYSIA: The Malaysian Health Ministry confirmed a new case of monkeypox (mpox) in a male citizen, marking the country’s first confirmed case of 2024.

The patient, who began showing symptoms on 11 September, is currently in isolation and in stable condition.

The ministry, in a statement issued Tuesday (17 September), revealed that the patient first experienced fever, sore throat, and cough, followed by the appearance of rashes on 12 September.

He has no recent history of international travel within the past 21 days, and authorities are in the process of identifying and monitoring his close contacts, following strict standard operating procedures (SOPs).

“Out of the 58 suspected mpox cases referred to the ministry this year, one case has been confirmed positive for mpox clade II as of 16 September,” the ministry stated.

“All 10 cases reported in Malaysia since July 2023 have been from clade II.”

The Health Ministry had earlier reported that Malaysia recorded a total of nine mpox cases since the first detection on 26 July 2023, with the most recent case reported in November 2023.

All previous cases had links to high-risk activities, but no deaths were reported.

Global Context and National Preparedness

Mpox was declared a Public Health Emergency of International Concern (PHEIC) for the second time on 14 August this year, due to the rapid spread of the clade Ib variant, particularly from the Democratic Republic of Congo (DRC) and neighboring African nations.

In response, Malaysia’s Health Ministry activated its national crisis response centre on 16 August to enhance readiness and coordinate preventive measures.

The ministry advised the public to take precautions, including maintaining personal hygiene and avoiding direct contact with individuals suspected or confirmed to be infected with mpox.

High-risk individuals experiencing symptoms such as fever, swollen lymph nodes, and rashes are urged to seek immediate medical attention.

Mpox is caused by the monkeypox virus (MPVX) and spreads through close contact with symptomatic individuals.

The incubation period is typically between 5 and 21 days, and patients remain contagious until all lesions have dried up and fallen off.

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