We need more peer involvement in decisions that affect consumer/survivors of mental health services, treatment, and the mental health system. Otherwise, corporate interests driven by a profit motive will be the only voice decision-makers hear on decisions that affect us.
We must have more peer involvement at the tables of decision-making organizations, more outcomes-based research institutions, policy and regulatory domains, as well as educational institutions!
I attended the Patient-Centered Outcomes Research Institute (PCORI) public input event earlier this year. There were only TWO of us Mental Health Peer Advocates speaking out in a group that decides which research projects into what’s good or bad for all of us deserve funding. ”Ouch!”
More Peer Involvement in Approving New Drugs
Last year, I attended the FDA “Safe Use Initiative” public input conference. I was the only Mental Health Peer Advocate, even though I called out by phone for support.
We can have more peer involvement in the Safe Use Initiative if people would just follow this link, click comment on the bottom of the page, and say what you think. You don’t need advanced degrees to express yourself here. Just say why you’re interested, or how and why the decision affects you.
The on.y Mental Health Advocacy organization representative on the panel, from NAMI, was a NO SHOW. Ouch. (I do not know what prevented that person from making it.) I DO want to stress that was only person slated to represent all mental health consumers, and was not a consumer with lived experience. Double ouch!
If we peers/consumers/survivors do not step up to the plate in ALL possible public forums where systemic change can be leveraged toward a Recovery or Distress Model, we risk loosing our footing to those driven by the profit motive, at the cost of future human capital, capacity building, and the Hippocratic Oath of “Do No Harm.”
This Current Issue Needs More Peer Involvement
Here’s an example of this panel’s work, where more consumer involvement is relatively easy. You comment on the Internet, or by writing a letter, and don’t have to go out to a meeting:
“To keep the FDA approval cost down, it is supposedly only approved for the treatment of very high triglycerides, but doctors prescribe it for many reasons. It is the only fish oil Medicare, Medicaid and the Veterans Administration are allowed to reimburse. This is wonderfully profitable monopoly for the drug company producing it. Lovaza costs $6.75 per day, over $200 per month. A high-potency natural fish oil supplement with the same EPA and DHA amounts may cost less than 50¢ per day, or $15 per month.” says the website Davidhealy.org
You can help create more consumer involvement on this. Put public comments on the Safe Use Initiative, spread the word through your social media, and call for more peer involvement NOW.
How can you create more peer involvement in decisions that affect us?