As some of you know, I am currently looking for a job. I am lucky in that I can afford to take some time and look for the right one, at least for a while. In the last few months, I have thought a lot about what that is. After dozens of calls with people who have helped me explore the healthcare universe, I have decided that I want my next step to be something where patient advocacy and public policy intersect. It’s a bit of a niche right now, but based on what my new network is saying, patient involvement in a lot of aspects of healthcare is on the verge of having a moment.
In an effort to be a part of that moment, I have been looking mainly at nonprofits and associations where I think my patient experience can have the most impact. There are also government positions, contractors, and industry.
It’s that last category that has given me the most pause. For a long time, patients have felt like they are in a more parasitic than symbiotic relationship with what we call industry – insurance companies, pharmaceutical and device manufacturers, pharmacy benefit managers, and sometimes large hospital systems.*
It all comes down to what stands between us, the patients, and our ability to live our best lives. With the cost and hassle of having a chronic or autoimmune condition these days, most of the time it feels like these companies we can’t live without are making the difficult situation that is our lives even more difficult.
To make it worse, the tendencies of corporate America have led us to believe that these difficulties are all in the name of profit. Which is true because that’s their job. Many healthcare companies are publicly traded, and their primary purpose it to make money for their shareholders. The problem is that the healthcare industry isn’t like other industry sectors. The stakes are higher. And the demand side is a captive audience. Frustrated consumers (I hate using that word for patients) can’t just walk away and find a better supplier. It’s cost-prohibitive (see: outrageous drug prices, surprise medical bills, denial of care, etc.). So, we stick to what we’re given or we die. This is not a healthy relationship for parties that can’t survive without the other.
But if that moment I mentioned is really coming, that could be a precursor to change, even in industry. As healthcare undergoes some revolutionary changes and moves toward a value-based payment model, something’s got to give. I am not naïve. Such things don’t change overnight. But my dad always said that one of the best ways to make change was from the inside out. I would like to explore their programs and the organizations they fund. I think I could do some good. After all, if we patients don’t help them when they are sincere in their requests, who will?
*Many of these companies have or fund patient outreach/advocacy operations, which do a lot of good work, but the good is overshadowed by the conflicts of interest. When I was looking for articles about the good these groups do, there wasn’t much, even though I know they helped pass the Affordable Care Act, or at least didn’t lobby against it. Which was huge.