Just because technology is created doesn’t mean that everyone that could benefit from that technology has access to it. Anne Bryden, Director of Clinical Trials and Research for the IFR, is also working on getting her PhD in sociology. In that pursuit she has begun to explore the area of human rights, access to technology, and the right to science. In May 2018, Anne hosted a workshop entitled ‘Human Rights and Access to Technology by People with Spinal Cord Injury’ at the American Spinal Injury Association annual meeting. I was fortunate to be included in this workshop in addition to Brian Gran, Jennifer French, and Megan Moynahan.
Brian Gran, JD, PhD started the session discussing the foundations of human rights. The defining qualities of human rights are that they are 1) universal and inalienable, 2) interdependent and indivisible, and 3) equal and non-discriminatory. It is important to talk about human rights because they can be tools, they can offer protections, and they can produce change. Anne Bryden, MA, OTR/L spoke about human rights and disability. The two prevailing models of disability are the medical model and the social model. An emerging model is the human rights model of disability, which recognizes disability as a social construct but that human rights do not require a certain health status. Everyone has the right to science, and technology is a direct result of science.
Jennifer French, MBA then spoke about the current landscape around neurotechnology. Neurotechnology is one of the fastest growing areas in the medical field, but is still far behind drug development. Areas that need concerted efforts to improve access to neurotechnology are enhancements in inclusion of end users in the regulatory process, creative reimbursement models, staged invasiveness of devices, and cross pollination across disorders. I spoke about the perspectives of people living with spinal cord injury with respect to priorities for technology, access, and barriers to existing technology. Importantly, people living with SCI need to be included in all aspects of technology development to ensure usability in the long run. There is a disturbing lack of knowledge of existing treatments and access to those treatments. Most current neurotechnology for SCI is only available through research studies, which contain barriers to participation. Furthermore, accessing currently available ‘basic’ technology such as closed-system catheters and ultralightweight wheelchairs is significantly limited insurance coverage.
Megan Moynahan, MS closed up the session speaking about how to move forward in making technology available and what are the duties and responsibilities of all of the stakeholders. The stakeholders are everyone who is on the receiving end of the ‘right to enjoy the benefits of scientific progress’, which is all of us!
–Kim Anderson-Erisman, PhD