AMPANG, June 24 — A haematologist has urged insurance companies to cover sophisticated outpatient diagnostic tests for multiple myeloma, a rare blood cancer, to prevent delays in diagnosis and treatment decisions.
Dr Goh Kim Yen – a consultant haematologist at KPJ Ampang Puteri Specialist Hospital – explained that blood-related diseases, such as multiple myeloma, involve many organs in the body. Some patients require more sophisticated tests for the purpose of diagnosis and therapy guidance.
Examples of such tests are a CT scan or PET scan and certain molecular tests such as Fluorescent in-situ Hybridisation (FISH) test and Next Generation Sequencing (NGS) tests on bone marrow samples.
A FISH test may cost up to RM1,000 to RM3,000, depending on the number of probes required, whereas a PET or CT scan costs between RM2,000 and RM2,500, leading to a total bill of nearly RM6,000 for diagnostics.
Diagnostic methods for multiple myeloma have also evolved beyond X-rays to MRI or PET-CT scans for patients with myeloma bone disease. A PET or CT scan is used to identify bone lesions.
She explained that while medical insurers in Malaysia do cover “basic” tests, or the first round of tests, there is sometimes a challenge to get medical insurers to cover the more sophisticated, albeit necessary, diagnostics like NGS or a FISH test for multiple myeloma.
These tests are necessary for a haematologist to determine whether or not to start their patients on monoclonal antibody or targeted therapy. Hence, the government should perhaps allocate funding for diagnostics for multiple myeloma, especially for higher-risk demographics.
This may be especially crucial when testing is required at different points of the disease when a patient relapses. While basic diagnostics are covered by private insurance, the government can do more to cover advanced testing.
In view of the high cost of diagnostics, Dr Goh sometimes encounters patients who are unable to pay for such tests and either request hospitalisation or just walk off.
“Sometimes, the insurance patients just walk off,” Dr Goh told CodeBlue in an interview here.
She said one’s cancer stage is ascertained after some blood tests or a scan.
Dr Goh also said some patients with insurance have asked her to help manage their budget so that they can complete their treatment without exhausting their coverage, such as limiting hospitalisation by having daycare treatment instead, for which she is happy to assist as much as she can.
“As medical professionals, it’s our role to make a correct diagnosis and advise patients on their treatment and how to prevent a recurrence.”
She hopes that insurance companies can understand the nature of their work – which is to provide medical consultation and treatment to patients and that doctors do not have a role nor influence over the cost of tests and medications.
“The patient’s interest is our interest. I’m sad to see my patients leave, but what can we do?” Dr Goh said.
“As far as possible, we try to treat our patients where we practise and do not refer to government hospitals, unless patients face insurance or finance issues.”
She said multiple myeloma patients typically wait longer for diagnostics in public hospitals compared to private ones, while certain blood tests, like determining the level of the paraprotein, are sometimes limited in public facilities due to budget constraints.
“In private hospitals, if you need the test, you pay for it and you get it,” Dr Goh said.
“Patients also have more options in private hospitals, like getting a doctor or haematologist of their choice and efficient service.”
Get Disease Ambassadors For Multiple Myeloma, Other Blood Cancers: Expert
Another haematologist has called for more disease ambassadors in Malaysia to raise awareness and advocate for access to treatment for blood cancers, including multiple myeloma.
Dr Tengku Ahmad Hidayat – a consultant clinical haematologist and internal medicine physician at Beacon Hospital in Petaling Jaya, Selangor – pointed out that even health care professionals, other than haematologists, aren’t very knowledgeable about multiple myeloma, asking if it is a blood or kidney cancer, due to its multiple severe symptoms.
Multiple myeloma can be more severe than other blood cancers like lymphoma or leukaemia, causing hypercalcemia, renal failure, anaemia, or bone fractures. It mainly affects senior citizens aged 65 years and above.
“It’s quite a big disease,” Dr Tengku Ahmad told CodeBlue in a recent interview.
“We have to get people to speak more about myeloma and blood cancers because it’s not like colorectal cancer, breast cancer, or prostate cancer, where a lot of people and famous people have it.”
Disease ambassadors, he said, can comprise not celebrities per se, but people of influence who champion the cause.
Increased public awareness about multiple myeloma will help in increasing corporate social responsibility (CSR) programmes from companies or donation drives publicised in mainstream media for the rare blood cancer, Dr Tengku Ahmad added. Social welfare agencies like zakat can also help with raising awareness about multiple myeloma and its disease burden.
Drug therapies are available for multiple myeloma patients like unfit or elderly people aged 65 years and older who can’t undergo a bone marrow transplant, such as proteasome inhibitors (PIs) or monoclonal antibodies, as well as CAR T-cell therapy.
But CAR T-cell therapy is prohibitively expensive, costing US$500,000 (RM2.1 million) in the United States. The cancer immunotherapy is also available from clinical trials in China, but even this costs RM200,000 per cycle.
Dr Tengku Ahmad also called for increased public awareness about bone marrow transplants.
He explained that with bone marrow transplants (also called stem cell transplants) for multiple myeloma, one can do an autologous stem cell transplant where the patient uses their own blood stem cells, instead of donor stem cells as there’s not much benefit in using the donor’s.
“So we also need awareness about bone marrow transplant as a consolidative treatment for myeloma.”
Multiple myeloma1 affects your plasma cells, which are white blood cells and part of your immune system. Plasma cells make antibodies that help fight infection.
Multiple myeloma happens when healthy cells turn into abnormal cells that multiply and produce abnormal antibodies called M proteins. It is this change that starts a cascade of medical issues and conditions.
According to Dr Tengku Ahmad, multiple myeloma is reported at between 0.4 and 0.7 cases per 100,000 population in Malaysia; as such, this particular blood cancer is not in the top 10 cancers in the country2, unlike lymphoma and leukaemia.
Singapore has a useful patient’s guide to understanding multiple myeloma, including information on staging, therapies, and questions to ask your doctor during consultation.
References
- Multiple myeloma (2022, May 4). Cleveland Clinic. Retrieved from link.
- Summary of the Malaysia National Cancer Registry Report 2017-2021. National Cancer Institute, Ministry of Health Malaysia. Retrieved from link.
- A patient’s guide to understanding multiple myeloma. Singapore Cancer Society. Retrieved from link.
