On January 17th, 2024, Together Against Cancer (TAC), Third World Network (TWN), UM Cancer Research Institute and UM Social Wellbeing Research Centre held a workshop entitled “Nothing Without Us”- Together to Improve Access to Affordable Cancer Care in Malaysia, at the University Malaya Alumni Clubhouse, Kuala Lumpur.
There were more than 80 participants, including health regulators, legal specialists in pharmaceutical intellectual property law, oncologists and other medical professionals, cancer patients, carers, interested civil society organisations and local generic manufacturers. We gathered to discuss current developments in the field of cancer care and the way forward for prevention, diagnosis, treatment and support for cancer patients in Malaysia.
In 2022, approximately 160,000 patients were hospitalised, and 7,500 lives were lost due to cancer in Malaysia. Unfortunately, cancer incidence in Malaysia is expected to double by 2040. Although there has been significant advancement in cancer treatments, they are nevertheless notoriously expensive and out of reach of the general Malaysian population. Their high price tag makes inclusion into the Ministry of Health’s National Essential Medicines List (NEML) impossible.
Though there are several reasons for the high price tag, a major reason is the patent monopoly innovator medicines enjoy. The lack of competition allows for and prolongs the high prices of these medicines. The British organisation responsible for evaluating drug cost-effectiveness (National Institute for Health and Clinical Excellence, NICE) has pointed out that high prices are mainly driven by financial concerns unrelated to the cost of drug development or their therapeutic value. Indeed, in the case of the breast cancer treatment known as Trastuzumab, the price of the innovator medicine was slashed by more than 50% the day a competitor entered the market in Malaysia. Working on the demand side of finance to meet the unregulated prices of manufacturers and service providers does not solve the problem.
The workshop thus sought to address policy and structural issues that create barriers to access to cancer care. Among the objectives were:
i) to build the capacity of attendees to improve knowledge on access to cancer care, in particular, to understand the gaps and processes that lead to creating the access barriers; and
ii) to encourage cross- and interdisciplinary networking to find solutions to break down access barriers.
Various patients from cancer NGOs from the Breast Cancer Welfare Association (BCWA), Colorectal Cancer Survivorship Malaysia (CORUM), and Prostate Cancer Society Malaysia who received treatment for cancer shared their personal journey. Access to affordable treatment varies between cancers due to the cost of treatments and access initiatives on the ground. Early diagnosis and detection were emphasised. Cancer treatment is more successful when the cancer is caught early. It is possible to detect breast, colorectal and cervical cancers early through screening and early diagnosis. Participants learnt about the Greater Petaling City Cancer Challenge, where the collaboration among City Cancer Challenge (C/Can), the City Councils of Petaling Jaya, Subang Jaya and Shah Alam, the Ministry of Health, the National Cancer Society of Malaysia, and Universiti Malaya, is set to improve access to quality cancer care in the cities of Greater Petaling over the next two years through addressing the gaps in cancer care services in these cities.
Overall, there is quite good access to cancer care in cities in the Peninsula Malaysia for the more common forms of cancer. However, there are gaps that must be addressed in multidisciplinary services, timeliness, and treatments of recurrent cancers, as well as the lack of surgeons overall and in various specialities. The challenge in East Malaysia remains immense regarding access and quality of care, survival rate and outcomes. In East Malaysia, the main challenge is that of geography. There is only one tertiary hospital in Kuching for the whole state of Sarawak, and hence, the only place with oncology care. 65% of oncology patients are from outside Kuching, most in the B40 category. The lack of medical personnel in East Malaysia is dire; there are only 8 oncologists in Kuching to, a population of 2.8 million. Other challenges included inadequate facilities, clinics in poor condition, and hospitals needing more space and furniture/equipment.
SCAN (Sarawak Cancer Advocacy and Awareness Kuching), founded through the joint efforts of a group of cancer patients, survivors, caregivers and concerned professionals, has been instrumental in raising cancer awareness in Sarawak and providing peer support; SCAN has been advocating for a Sarawak Cancer Centre.
In terms of excessive pricing, participants were given a brief explanation of the impact of intellectual property monopolies on the access and availability of diagnostics and treatments. What is happening at the global level reverberates nationally. In fact, the state of our intellectual property law today, including patents and trade secrets, especially when it comes to pharmaceuticals, is a result of the World Trade Organisation’s TRIPS (Trade-Related Aspects of Intellectual Property Rights) Agreement, which sets patent norms for WTO member states. TRIPS nevertheless also provide for exceptions and flexibilities, and it is Malaysia’s inadequate implementation of these exceptions and flexibilities that has led to an intellectual property regime that lends itself to abuses by pharmaceutical companies to prolong monopolies, preventing the timely entry of competitors (in the form of generics/ biosimilars). The result is prolonged high prices of medicines and restricted access. Participants discussed the reform required in this area.
On the regulatory front, participants learnt of the 2022 amendments by the World Health Organization on its guidelines for approving biosimilars. Some of the most current and effective cancer treatments are biological drugs (called ‘biologics’ or ‘biopharmaceuticals’), drugs produced through biological processes. Follow-on comparator products introduced into the market after the expiry of the intellectual property monopoly on the biologics are known as biosimilars.
The global list of top-selling drugs is increasingly populated by biologics. The cost of biologics, and even biosimilars, can be exorbitant even for developed countries. The WHO’s amended guidelines for biosimilars have done away with the compulsory need for comparative clinical trials, resulting in 70% savings. However, there are still gaps that the WHO can further improve on to speed up biosimilar registration and market approval. Malaysia’s National Pharmaceutical Regulatory Agency (NPRA), the government agency responsible for ensuring safe, effective and quality pharmaceuticals in this country, has followed through with its own amendments. Further engagement is ongoing to ensure that regulatory processes are entirely science-based, as unnecessary requirements can drive costs and result in entry barriers to pharmaceuticals.
At the end of the day, participants agreed that awareness and joint actions are critical. Awareness of preventive and curative measures and following up on the latest developments in the field and issues on access to diagnostics and treatments is necessary. In terms of mobilisation, community initiatives are bringing about much hope, and the willingness of regulators and government to work together with civil society will enable the country to move towards better cancer care outcomes.