I am a patient activist with a chronic health condition. There are many types of patients out there but this is the label that seems to fit me most comfortably. I listen to everything my medical team says. I also ask questions. Questions that sometimes make people uncomfortable. I do my own research and after critical analysis, I make up my own mind. For healthcare professionals, it’s a job or career. For me, it’s my life.
Search for Community
After I recovered my health, I began to look for ways to use my healthcare experience to improve the quality of care for other patients. I was searching for community with other patients that lived with rare disease. Unfortunately, these same groups have a disturbing degree of ties to the pharmaceutical industry. As a patient activist, I want to challenge this structure.
Let’s look at CORD. The Canadian Organization for Rare Diseases. Let’s look at their affiliation to the pharmaceutical industry. This agency represents a number of rare disease patient organizations in Canada. To what degree do patient interests prevail over those of the industry? I wonder. Can there be a balanced negotiation between these two groups?
In Canada, CORD might offer the patient advocacy groups assistance with organizational and financial structure. This can be appealing as patient groups often lack this structure and funding when starting out. This short term fix ultimately serves to foster dependence and will ultimately mute the patient voice within the industry choir. Patient advocacy captured. Industry dominance maintained.
The industry group might then turn to lobby the federal government for funding research on rare diseases. If they could carry the patient advocacy group along with their agenda, it’s two against one. Pretty good odds. If the industry does get the funding for research, they have a built in and dependent group of patients ready to go.
What’s in it for us?
Some might say that the patient does benefit from this situation. In the end, the patient might benefit from a pharmaceutical solution. It is possible a pill will be developed for patients living with a rare disease. The problem is that even if true, it takes on average 17 years to bring a drug to market, and that when it comes to market, the cost is to healthcare and the patient is astronomical. The current model of patient advocacy does not work for patients. It works very well for the industry.
Tokenism is real. Virtue signalling is real. Having a patient on a healthcare committee is now politically correct. Patient involvement in research is becoming more politically correct. It is not enough to tick a box on a Terms of Reference requirement anymore. It is not near enough.
The Standard of Care is not enough
As patients, we need to challenge the underlying premise that only a pill can solve complex health issues. We can’t wait for the pharmaceutical industry, even if it should arrive with a magic pill in 17 years time.
The current standard of care protects healthcare professionals from medical malpractice suits by patients. It’s got nothing to do with quality of care for patients. It is a minimum standard by which a healthcare provider can avoid being sued. Think about it. It’s got nothing to do with you and it’s not personal. We should demand more from our healthcare. After all, we’re paying for it.
I am a patient activist because of my own health recovery outside the standard of care. I am not an advocate and don’t need to be empowered. As patients, I think we can and need to negotiate a better deal with the healthcare industry. Advocacy under the current system is not enough. We need change.