My mom called me up in tears this morning. We’ll get to the reason in a few moments- let’s first talk about her medical conditions.
My mom, Janet Schumacher, turned 65 this year. Following an episode of pancreatitis that damaged a good portion of her pancreas, she’s become an insulin-dependent diabetic. This aggravated her psoriasis, a usually pretty benign skin disease, that causes all sorts of itchy, dry patches where it takes up residence. But the worst part of it was not actually the skin stuff, even though she often had outbreaks that made her look like she had chicken pox– it was the development of psoriatic arthritis that was the most debilitating.
Psoriasis and Psoriatic Arthritis are auto-immune diseases. Once the psoriatic arthritis set in, my Mom, who has for years been an active woman who has hung wallpaper, raced sports cars, gardened like a fiend, and basically has never met a challenge too big, was felled. She could barely move in the morning, and began doses of anti-inflammatories and pain killers to let her move around. Sometimes, the pain medication would make her sleepy, and this would also affect her blood sugar and her ability to respond to impending low blood sugar levels, leading to more than one incident where the ambulance came to help revive her once her blood sugar levels became too low for her to be responsive. My mom was virtually crippled by the arthritis, and could barely walk, knit, or do much of anything for herself because of the constant pain. She would call from time to time, crying, to the point where I began to cll her doctors, worrying that she was becoming severely depressed.
Working with her doctors, the rheumatologists tried her on Humira. The Humira not only cleared up the skin condition, it’s been amazing at controlling the arthritis as well. My mom is back to her old self again. She is physically active, happy, and able to move yet again.
The price of Humira is a problem though. Typical treatment can cost approximately $14,000 a year. My mom managed to get coverage through her health care plan, but now medicaid wants to reduce the subsidy for Humira. Instead of paying $50 a month, as she is now for the drug, my mom’s bill would increase to over $800, and that kind of increase is not something she can absorb out of pocket.
Mom is working part time currently, but she also cares for my sister who is disabled after a car accident left her with a traumatic brain injury and epilepsy. There’s no additional income sources to enable her to afford this medicine, but without it, she will return, in a very short time, to becoming disabled herself. Her call and tears today were from the fear that she could become disabled again if she can’t get coverage for this drug.
I’m married to a physician, and I feel like I do have a sideline seat for the health care crisis. I see the physician view, and that of the patient. I see my Mom, who has benefitted tremendously- this drug has given her life and livelihood back to her, and without it, she may very well end up on welfare or other public support, as she will no longer be able to take care of herself or my sister, for that matter.
I know we are going to have to make hard choices in this health care debate. But somewhere in the parameters of the third party payor system, we have to find a way to cover medication that is life changing, that helps people preserve their independence, helps them remain useful and productive, and not make them dependent solely based on the cost of the drug alone.
My Mom is scared, She’s scared because she remembers the pain. She remembers feeling crippled. And she doesn’t want to go back to be that person again. As her daughter, I dread seeing that possibly happen to her, over something that is a bureaucratic decision that shifts more drug costs on her, but at such a rate, over such a short period of time, she has no hope of compensating.
And while this may seem benign and reasonable from some accountant’s desk somewhere, out here, in the real world, that decision may very well cost my mother all of her mobility, her functionality, and her ability to live independently with my sister. Without this drug, they both may become more dependent on the State, just at a time when the State can barely support the people they have on the rolls. I am not sure this is really cost savings, it’s a very cruel way of cost-shifting at best.
My mom is one of the million examples of why we need health care reform, and we need a way to make this system work, with humans making human judgments about what’s best for everyone, not just accountants. Because everyone, including my family, will be best served by their continued independence, not by making my mom and sister dependents on the State due to the withholding of one medication.