MEMBER BEST PRACTICES
Korea Blood Cancer Association (KBCA)
When Chulhwan Lee was diagnosed with acute myeloid leukaemia (AML) in 1993, there was no patient organisation in Korea that provided support to patients with a blood cancer.
“I’d undergone seven cycles of chemotherapy as well as lung surgery because of side effects and realised that patients face many problems when they undergo treatment,” said Chulhwan. He is the Executive Director of the Korea Blood Cancer Association (KBCA).
“Because of my experience, I felt it was necessary for patients to have support. So, with the help of another patient who had leukaemia, we launched a small patient support organisation,” he said.
KBCA started as a support group for adult patients with a blood cancer in 1995 and was known as Saebitnurihoe. In February 2003, it became a non-governmental organisation and changed its name to Korea Blood Cancer Association.
It certainly has grown since its beginnings and Chulhwan now has a team of 17 full-time staff along with 300 volunteers.
“The volunteers include doctors, nurses, social workers, patients as well as students,” he said.
The goals of KBCA are to provide emotional and financial support as well as help patients learn about their disease.
“We help patients from the time of treatment through to their successful return to a normal life,” said Chulhwan.
Challenges Facing Patients with Lymphoma in Korea
Among the challenges confronting patients with lymphoma are anxiety about achieving a complete recovery, financial concerns if treatments are not reimbursed and rehabilitation once treatment is completed.
Compounding these challenges is that there are not enough doctors to help those who need medical care.
“Data reported by the Korean Ministry of Health and Welfare in 2015, showed that there were two doctors for every 1,000 patients in Korea. This means that the actual consultation time is less than three minutes for each patient,” said Chulhwan.
Given the limited consultation time, patients do not receive adequate information about their treatment, side effects or other aspects pertaining to their disease.
There are also cultural issues.
“For example, doctors and patients are not viewed as equals in Korea. This means that patients are unable to speak freely to their doctor,” he said.
Medical Mentoring Programme
To offset the minimal amount of time patients have with doctors, KBCA developed a three-step medical mentoring programme in 2013.
The first step of the programme includes a 50-minute lecture. At the start of the lecture, patients and their families introduce themselves.
“Patients give their age, when they were diagnosed, and what treatment they’ve received,” Chulhwan said.
Once the information is gathered, the medical mentor, i.e., the doctor, gives a lecture and provides a short commentary on a particular disease.
The second step in the process is one-on-one counselling.
“During this 10-minute consultation, patients are able to ask the medical mentor any questions about their disease as well as discuss any other concerns in a private place,” he said.
Step three comprises two lectures. In the first lecture, a patient shares his story on how he coped with his disease and answers questions. The second lecture provides helpful information on topics such as nutrition, exercise and mental health. The second lecture is given by educators from KBCA.
“By taking this approach, the fear and anxiety patients experience are minimised,” he said.
In addition to the medical mentoring program, KBCA gives lectures that are co-hosted by the Korean Society of Hematology, as well as holds lectures in local communities and hospitals.
Online phone seminars have also been available since 2011.
“The idea for the online phone seminars came from a CancerCare education workshop held in the USA. Through these seminars, patients can talk to doctors,” he said.
KBCA also provides monthly consultations, via its website, with doctors. As well, patients can call the KBCA offices and talk to staff if they have questions.
Provision of Financial Support
Patients facing economic challenges can get financial help from KBCA to pay for medical expenses.
“To receive financial support, the patient has to go to their hospital and meet with a social worker who determines if the patient qualifies for support. If the patient does, the social worker lets us know,” said Chulhwan. The financial support provided by KBCA can only be used to help pay for treatment. Patients can only receive financial support on one occasion from KBCA.
Pharmaceutical companies also help with the payment of medical expenses.
“When large amounts of medication are needed or a new drug that has not yet received reimbursement approval, the pharmaceutical company may help out through a compassionate care program,” he said.
KBCA also helps patients who need transfusions through the use of blood transfusion cards.
Funds for the financial support KBCA provides come from corporate donations as well as money raised through an annual musical.
Education Programmes to Meet All Needs
Throughout the year, KBCA provides a total of 40 education programmes and workshops on various blood cancer topics.
“Lectures where there are more than 100 patients attending are co-hosted by the Korean Society of Hematology and the local society. For smaller groups, the lectures are held at the Hope Information Education Center, which was opened in 2012” said Chulhwan. The centre is run by KBCA.
Sessions are well attended. At the session on lymphoma – for both patients and their families and co-hosted by the Korean Society of Hematology – there were 250 attendees.
For those unable to attend lectures, seminars are held by phone and disease information is also included in KBCA’s monthly magazine, Hope.
“Patients can also get information from our website,” he said.
Care for Patients’ Emotional Needs
For relief from emotional distress patients may experience during treatment, KBCA offers patients the opportunity of staying at a resort for two days and one night for free.
“We also give out free tickets to musicals and movies to help patients improve their mental well-being,” said Chulhwan.
KBCA also has programmes to help those trying to return to normal life.
“At the Hope Information Education Center, we have a number of programmes that focus on promoting both physical and mental well-being,” he said.
“We have nine programmes that focus on improving the physical health of patients one of which is yoga and 17 mental health programmes such as music therapy and aromatherapy. Also, we have three outdoor programmes such as hope outing, hope hiking and cinema therapy,” he said.
Lectures are also given on topics such as medical mentoring and solutions to help deal with the psychological effects to cancer.
Many thanks to you, Chulhwan, and your team for all the wonderful support you provide patients with a blood cancer in Korea.