There’s only one reason I’m publicly sharing what I’m about to say— to help others. Going public with this is both hard and embarrassing for me. I’m a gal who likes to present well. But in order to be a real advocate, I need to be real. To influence each other, and change the rules, regulations and behaviors that govern our the world, we have to share the truth of our personal experience— to hopefully affect someone else into action.
Six years ago I was diagnosed with Pulmonary Fibrosis.
I was lucky. For most of those years, my PF wasn’t aggressive. Aside from a couple of annual flare-ups, it didn’t changed my life. That’s shifted over the last two years.
I used to spend most of every day in the car, traversing LA— between school functions for my girls on the west side, choir practice in West Adams, writing group all the way up in the canyon. Today, I spend my days at the beach— still writing of course, but mostly at home, with the dogs. Even a moderate walk leaves me winded. Stairs are usually a struggle. Flying anywhere now means ordering personal oxygen for the plane ride.
I, along with many others who have PFD, were blessed that in October of 2014, two drugs were approved by the FDA to slow (and in some cases maybe even stop) the spread of the disease. When my doctor prescribed one of them last December, my first real education in the pharmaceutical world began.
The sticker shock was the catalyst. A single month’s supply of the medicine cost $7,000. After Medicare and supplementary insurance (plus a “grant” from the manufacturer), my personal cost is nowhere near that. That “grant” begged some deeper questioning. The reasons behind the costs are multilayered and many. I’m still figuring out the why and how. But this isn’t the story I’m telling here.
The practicality of taking the drugs was my other study. The prescribed dosage of my medicine was one pill, three times a day with each meal for the first week, then two pills with each meal for the next week, and then three pills with each meal going forward. Doing it this way would allow my body to get used to the drug. Taking it with meals buffered the effect on the stomach.
The medicine’s main side effect is nausea. There were several times I forgot I had taken my pills. I took an extra dose and all of a sudden, was sick as the proverbial dog. A few other times I was rushing and couldn’t remember if I’d taken them or not. I had to literally count every pill in the bottle to avoid being laid out for the rest of the day.
All of this was an overwhelming lesson in how huge and devastating dealing with medicine is. I’m no spring chicken. There are millions of people older, sicker, and less fortunate than I am. They are dealing with not only the cost, but the demoralizing and complicated experience of managing medications for life-threatening conditions every day.
The cost issue is, again, multilayered. I don’t yet understand what the practical solution is. The second issue though— the experience— there is a practical solution for that. It’s a pharmacy called PillPack.
It is the brain child of TJ Parker, a pharmacist, and Elliot Cohen, a software engineer and MBA. For the same exact price as Walgreen’s, PillPack makes taking your medication easier. Your pills are delivered to your door, pre-sorted and packaged into your daily doses. No more sorting. No more counting. No more double dosing. They contact your doctors for your refills. Their pharmacists can be reached any time of day, any day of the year.
My daughter works at PillPack. A pragmatist from birth, she worked in city government straight out of school, because she knew that being close to the people she was serving would make the biggest impact. When she was deciding to join PillPack, I saw her use the same rationale— to fix a broken system, you need to advocate directly for the people affected. When she told me about PillPack’s service, all I could think was, “how simple. How needed.”
Unfortunately, it’s not that simple. At the end of April, Express Scripts, one of the most powerful healthcare providers in America, is taking PillPack away from the 85 million people whose medications they control.
“Why?” I’m sure you’re asking yourself. Because Express Scripts operates their own (very terrible) mail-order pharmacy. PillPack has been growing a lot since last year, and Express Scripts sees them as a threat.
Read their Reviews on Consumer Affairs: https://www.consumeraffairs.com/rx/express_scripts.html
The story is, of course, nuanced. PillPack put together fixpharmacy.com to explain what’s going on, and to share the stories of hundreds of customers. Customers who struggle with conditions like PFD, and Parkinson’s, and ALS, and mental illness.
Check out the site. In less than five minutes, you will have an understanding of what is going on with PillPack and Express Scripts and the impact it has on you, your family and your friends. If you feel compelled by what you read, share their story far and wide (#fixpharmacy).
Click here to take action: https://fixpharmacy.com
Having a disease is teaching me many things. I’ve learned I have to be responsible and educate myself in every aspect of my healthcare. We all need to step up and speak out, to take care of ourselves and our loved ones. Big corporations are not going to do it for us. They are not in it for our health. They are in it for profit.
When I was a “spring chicken” back in the day, I never listed my “health” when I was asked about what I’m grateful for. Now I know that without it, well, the rest of it really isn’t much fun. But it can be better than it is today.