Tag Archives: Big Pharma

The Affordable Care Act is Not Affordable for Me

My previous post, The Work of Being a Professional Patient, needed a second chapter. There’s more to that broken system than simply being an unpaid professional patient.  In addition to the phone calls, meetings, emails – the legwork of managing our healthcare as chronic disease patients – there’s a lot of money involved, and a lot of it flows out of the pockets of people who can’t afford the care they need.

The system is broken.

It is a system designed for healthy people to get catastrophically sick and go from there. A system that punishes people for being sick but provides no support to keep them from getting sick.  Only $251 is spent per capita on public health measures aimed at proactively preventing illness.  The American healthcare system pads the wallets of health insurance and big pharma companies and often doctors and nurses too, then forces patients to do their work for them. America, land of the sick, home of the outsourced labor in our own back yards: people paying corporations a big chunk of their income for the privilege of managing their own healthcare. Privilege is a dangerous word. I’m privileged to be chronically ill and I pay over 10% of my monthly budget on my healthcare premium alone, after the assistance of the federal subsidy intended to keep my rates within my income limits. This does not include my out of pocket expenses on doctor visit copays, prescription copays, over the counter NSAIDs, heating pads, and various treatments to manage side effects of either medication or illness. Continue reading The Affordable Care Act is Not Affordable for Me

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The Work of a Professional Patient

I don’t get paid for this but it’s my job.

Ironically, I pay others for the work I do. You may need to read that twice to let it sink in. I pay health insurance companies, doctors, and pharmacists to do a job that I actually do because they don’t – or can’t. Though it’s not on my resume, I’m a Professional Patient. I make the phone calls when I catch the mistakes because no one else has the time. I make the phone calls when my doctor doesn’t know what my other doctor said, even though they share a computer system. I call to make sure my prescription is filled on time. I call to make sure my insurance company will cover a service because it’s not clearly stated in my plan information. I call to challenge billing errors and then I call to follow up at least three times before it’s settled.   Continue reading The Work of a Professional Patient

Patient Advocacy & Courage; Becoming a Voice For Many

Do you know how much courage it takes to tell 200 strangers it hurts to have sex?  Courage.

Continue reading Patient Advocacy & Courage; Becoming a Voice For Many

I Said “Yes” to Big Pharma

I didn’t want to start this blog.  I knew it would get me in trouble.  The kind of trouble that puts me in front of a crowd of 200 people from around the world to talk about what it’s like to live with Ankylosing Spondylitis.  I’m in trouble. Big time.

I didn’t want to dive into something bigger than I could handle – something that had the potential to amplify my voice into something like…well, like this conference I’m going to in San Francisco the first weekend in November. I’ve really done it now.

Continue reading I Said “Yes” to Big Pharma