Leukemia & Lymphoma Foundation, Singapore
The impetus for the founding of the Leukemia & Lymphoma Foundation (LLF), in Singapore in 2002, was the need to provide financial assistance to needy patients who had found a suitable donor match for stem cell/bone marrow transplantation.
“At that time, there was a bone marrow registry in Singapore but the majority of the donors were sourced from outside of the country. The cost of procurement was high and beyond the means of many patients. Our focus now is on helping patients pay for the cost of undergoing a stem cell transplant (SCT) along with other expenses patients may need assistance with,” said Dr. Lydia Seong, Chief Executive Officer of LLF. Lydia is a medical doctor whose specialty is public health.
Lydia is one of the founding members of LLF. In her day-to-day work for LLF, she is supported by one other staff member and volunteers who help with LLF’s administrative needs. LLF has a board that is responsible for approving all funding applications made on behalf of patients requiring financial assistance.
“On average, we help between 30 and 40 patients in a given year,” she said. In previous years, LLF assisted more than 80 patients a year but with the availability of other financing schemes, over the last four years financial assistance has stabilised to helping 30 to 40 patients in a given year.
LLF’s primary objective is to raise funds to support the financial assistance given to patients
“Our second objective is to support families. Most patients go through a very long treatment journey and families can be neglected as a result,” said Lydia. The support provided to families is primarily emotional.
LLF’s other objectives are research and education.
“However, research is not very high on our agenda as hospitals already have research grants and other funding sources for research,” she said.
LLF does undertake initiatives to help raise awareness among the public about blood cancers.
Financial Assistance for Patients
Singapore’s healthcare financing is a multi-tiered mixed financing system with four components.
“The first component is subsidies that are provided by the government. The subsidies pay for care received in public hospital wards,” said Lydia. The subsidies cover up to 80% of the total hospital bill.
The second component is Medisave.
“Medisave is a national savings scheme into which Singaporeans put part of their salary every month. The amount is dependent upon the person’s age and income,” she said. Employers also contribute to this scheme. Its purpose is to help patients pay for inpatient hospital bills.
The third component is MediShield Life. It is a national insurance scheme that is intended to help with larger hospital and selected outpatient treatments such as dialysis and chemotherapy.
“While MediShield Life provides broad coverage, it may not be sufficient for certain treatments like cancer or stem cell transplants” she said. Premiums for Medishield Life can paid for from Medisave.
The fourth component is the Medifund. This is an endowment fund paid for by the government that is intended to help Singaporeans who may face financial difficulties with their medical bills despite Medisave and MediShield Life. Medisave, MediShield Life and Medifund are referred to as the 3Ms for Singapore’s health financing schemes.
“Beyond the 3Ms, if there are outstanding bills, hospital social workers will approach charities like LLF to help pay for the hospital bills,” she said.
Challenges for Patients
“The biggest challenge for patients is that lymphoma or leukaemia strikes when you least expect it. As well, it can be fairly isolating, especially if the patient is undergoing an SCT because of the infection risk associated with the procedure as the patient will have to spend a long time in the isolation ward,” Lydia said.
Another issue is health literacy.
“Health literacy is not as high we would like it to be, especially with lymphoma. Suddenly, patients need to understand what a lymph node is and learn about all the different treatment options. This information can be difficult to communicate,” Lydia said.
Once patients are in remission, they can face challenges trying to reintegrate into the workforce and some may have difficulties getting re-employed.
In general, however, Lydia is happy with the way healthcare is provided in Singapore.
“I would like it if blood cancers had a higher profile, especially lymphoma,” she said. According to Lydia, between 500 and 600 people are diagnosed with a blood cancer every year in Singapore.
Beneficiaries’ Support Programme
One way in which LLF tries to support patients is through the Beneficiaries’ Support Programme. This programme has befrienders who are survivors. Their role is to help those who have been newly diagnosed or have suffered a relapse.
“About 20 survivors have come forward to help with this initiative. Some survivors, once they are in remission, don’t want to talk about their experience but they may come back some years later to help,” Lydia said.
Another challenge is language.
“While English is the official language in Singapore, among patients there are those who are Malay or Chinese and prefer to communicate in that language so it may be difficult to find a befriender who speaks Malay, for example,” she said.
Patient Support Group
In 2015, LLF held its first Focus Group Discussion to help gain understanding about the challenges faced by patients with lymphoma.
“It was an opportunity for patients to share about their experiences,” Lydia said.
The inaugural meeting was kept small with five attendees to allow everyone time to talk.
Lydia said the support group is not a regular event and is currently held on an ad hoc basis with her acting as a facilitator.
For the fourth year in a row LLF held its annual LLF Walkathon in June 2016.
“This is our main event and its focus is fundraising,” Lydia said.
Patients, representatives from pharmaceutical companies, government and hospitals all join in.
“It’s always held in June as that is when schools are on holiday,” she said. This year, 700 people participated.
Lydia said that this event can only happen because of help from volunteers.
“As there are only two full-time staff, we need volunteers. This year, we had more than 80 volunteers helping out,” she said.
Scribbles from the Heart
The book – Scribbles from the Heart – was put together so patients and families could share their stories. It was also a way to raise fund for the organisation.
“We wanted to give patients and their family members a platform where they could share their stories and doodlings,” Lydia said. It took 10 months to put together and was well received with all 300 copies being sold. A digital version (Link to: http://www.llf.org.sg/wp-content/uploads/Softcopy_Story-Scribbling-V1.pdf) is available on LLF’s site.
“The book was intended for all blood cancer patients and their families. We wanted them to note what was most important for them during their treatment,” she said. There are plans to publish a second book and LLF is in the process of gathering stories from patients and family members.
Grateful thanks to Lydia and LLF for all your efforts to help those with a blood cancer in Singapore.