On February 25 2021, the Dutch House of Representatives adopted a motion approving reimbursement on a provisional basis of a whole genome based DNA test for metastatic cancer patients with the largest medical need. In recent years Inspire2Live, patient organizations, hospitals, physicians, and Hartwig Medical Foundation have been working together to make the comprehensive whole genome sequencing-based DNA test available to patients. The unique test was developed and clinically validated in the Netherlands in a non-profit collaborative setting. To drive access for relevant cancer patient, House members Léonie Sazias (50Plus), Joba van den Berg (CDA), and Hayke Veldman (VVD) took the initiative for a memorandum in February 2020 on the urgency of introducing this test in clinical practice.
A debate with Minister for Medical Care Tamara van Ark on the urgent need to make the test available to patients was held on February 10, 2021. Van Ark had previously informed the initiators, in September 2020, that she had requested advice from the Netherlands Health Care Institute on the positioning of such molecular diagnostics. It became clear during the debate, however, that implementing the institute’s definitive recommendations with regard to broader molecular diagnostics could take years. Cancer patients with the large unmet medical needs do not have that kind of time.
Therefore, a House majority voted in favor of a motion to create a provisional billing code for a WGS-based DNA test for patients with metastatic cancer whose primary tumor is unknown (CUP) and for those who do not have standard treatment options but are still in a good medical condition.
The Netherlands Health Care Institute will submit its advice to the minister by March 31, 2021. This should provide more clarity about the expected timeline for further guidelines and for patient groups with metastatic cancer.
In another vote, the House adopted a motion on the safe collection, storage, processing, and use of (health) data of cancer patients. Based on the informed consent and protocols developed in recent years by the Netherlands Cancer Institute, Hartwig Medical Foundation, and their partners, these will contribute towards a learning care system in oncology, using the data from today’s patients to improve care for tomorrow’s patients.
The decision by the House of Representatives is a great step forward for those patients with the largest unmet medical need right now, as well as a good basis for enabling the required research for improving future cancer patient treatment. Hartwig Medical Foundation is grateful for the energy shown by all those who have supported its mission over the past years, in particular Inspire2Live, Léonie Sazias, Joba van den Berg, Hayke Veldman, and the pathologists and oncologists of the Netherlands Cancer Institute.