Helping patients ride out the storm

Health Ministry medical development deputy director Dr Hirman Ismail flagging off participants of Ride with Hope – Miku Challenge 2022 in Rembau, Negri Sembilan.

THE inaugural Ride With Hope — Miku Challenge 2022 in Rembau, Negri Sembilan, successfully raised RM100,000 for the Rare Diseases Trust Fund.

Participated by some 600 people, including patients with rare diseases (RD), the event was organised by Malaysia Lysosomal Diseases Association (MLDA), Malaysian Rare Disorders Society (MRDS), Persatuan Sindrom Prader-Willi Malaysia (PWSM) and Persatuan Berbasikal Negri Sembilan.

The objective was to raise awareness on RD and educate the public on the platforms and assistance available for them.

The challenge comprised four categories – 74km and 16km (cycling), 1km fun run/walk and 30km virtual ride.

Rachel Siew Suet Li, 32, who was diagnosed with Mucopolysaccharidosis IVA (Morquio syndrome) at the age of two, said: “Miku Challenge symbolises the hope that all individuals with RD have in creating the needed awareness and for the public to get a glimpse of our everyday life, the challenges and obstacles we go through to lead a purposeful life.”

The challenge was held in support of the government’s plan to launch the trust fund that will enable needy RD patients to gain access to life-saving drugs, intervention and medical care.

Thanking the Miku Challenge organisers, Health Minister Khairy Jamaluddin said such collaboration between the ministry, patient groups and all stakeholders was needed to tackle complex challenges of rising healthcare provision and treatment cost further exacerbated by the Covid-19 pandemic.

Funds raised during the challenge will go towards kick-starting the Rare Diseases Trust Fund.

“The trust fund falls under the Rare Disease Programme Strategic Plan for 2022-2023, which is in partnership with patient advocacy groups.

“While the government will put allocations into the trust fund, we also look at leveraging funds from the private sector and charitable donations to meet the cost of treatment,” he said.

Senator Datuk Ras Adiba Radzi congratulated the participants, especially those who were patients and parents of patients.

She said there was a need for an official and up-to-date registry for RD in the country.

“Some groundwork has been done on building this database, which falls under the 12th Malaysia Plan.

“This is important as the database on RD will be the repository of the various types of diseases in Malaysia, inclusive of the medical protocols that go with it.

“The database will be a valuable resource of information not just to the medical sector, but especially the ministries to develop better policies, stakeholders in care and service provision, as well as the RD community from patients, advocacy groups, caregivers to individuals to receive current information that will help them to manage the disease better,” she said.

The initiative raised funds from cash donors such as Syarikat Pembenaan Yeoh Tiong Lay Sdn Bhd, Klanggroup Holdings Sdn Bhd, Biomarin Biotechnology Malaysia Sdn Bhd, Sanofi-Aventis(M) Sdn Bhd, Mah Sing Foundation and Mah Sing Healthcare Sdn Bhd.

It also received support in kind from Oji Asia Household Product Sdn Bhd and McDonald’s Malaysia.

MLDA president Lee Yee Seng said, “We are grateful for the support from the corporate and pharmaceutical sectors as well as the public.

“I would like to urge more members of the private sector to help us because our young RD patients really need their help in their well-being and life-saving journey.”

There are approximately 7,000 types of RD identified in the world and about 95% do not have treatments or cures.

At present, Malaysia does not have a cohesive and up-to-date registry and data on the number of RD and RD patients in the country.