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Tuesday, May 21, 2019

Validation at it's best

Along my journey I have been given many opportunities. Things I never dreamt being sick would lead me too. Meeting people and developing life long relationships. This has been an experience I want to talk about some. I'll get more into the details in a moment. First I want to talk about something that I have seen a great deal of concern with. That's the pharmaceutical world. When you are sick, not only is that the last place a patient expects to find validation, but it's also the last place we expect to find compassion, or even a desire to learn how to best help us. It's always been a part of health care that a patient tends to feel is all about profit. Quantity over quality. I'm happy to say that this blog is going to talk about the complete opposite of that, in the most POSITIVE way I have ever experienced.

This weekend was my first opportunity to be face to face with members of a pharmaceutical company and have the chance to discuss my journey with Ankylosing Spondylitis. When I tell you this was an INCREDIBLE experience, I just don't know how to make that word have enough emphasis to truly make the impact it needs to. A very small group, just 9 of us were invited to speak with the Eli Lilly Company. Per their request, they wanted to get a real understanding of a patient and their journey with this disease. Everything was about us, what can we teach them! I can't tell you how incredible that was to hear. Coming from something we as patients have little faith in, I HAVE NEVER FELT MORE VALIDATION then I did this weekend.

See, we deal with having an extremely expensive medication available for treatment, and no other options. This is often the case. You see companies extend the time before generic medication can be used. You see prices go up, not down over time. It leaves patients with little hope that treatment will ever be affordable. What about all those commercials we see on TV? The people always look like the healthiest person, capable of anything. They never show struggling people, really sick. Then what's that tiny writing at the bottom of the screen, as the voice over rambles off as fast as possible 30 different potential side effects right before adding "for a full list of side effects please see..." We are already sick, who has time to deal with all the extra problems the medication that's supposed to help us causes?

With this company, one of the things we got to discuss, was a need for affordable medication that also isn't going to destroy another part of our body in the process. Like with many medications, you risk liver damage, kidney damage and gastrointestinal damage. It's just putting enough back to compensate what it takes. We should not have to weigh the odds of risk verses benefits.

Something else in this meeting, was a statement another member made. We don't have a health care system. We have a sick care system. It's not about proactively treating people to prevent illness. It's about masking symptoms and being told no by insurance companies, all while feeling like crap and just wanting adequate care. Insurance companies dictate things for people they have never met, and have no understanding of. Yet, they make a decision in a matter of moments based on what? It's not our best interest!

You have patients you can't get good care because they can't afford it, while others receive top of the line. Again, because insurance makes a decision for us. About what we deserve. Doctors don't want to put the time and energy into patients they won't get good pay for. So they dismiss you, and give you the run around because that's the only real way they can make money on poor patients.

We need to see a system change, and maybe it starts with companies like this just caring enough to listen to the patients. I truly enjoyed the experience and I look forward to seeing what comes in the future. Together we can make a difference.

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