The Double-Edged Sword of Self-Advocacy

It is impossible to over-emphasize the need for MS patients to stand up for themselves. At the onset of disease we enter a new social circle, one that is relentless in its regimen of personally addressed invitations to doctor appointments and tests, annual evaluations and soliloquies concerning our decline. Our care team is thrust upon us like doddering, distant old money relations who show up at a dinner party uninvited but who must be treated with great tolerance and respect for their astonishingly effective refusal to fall off the face of the earth. Like our gentrified elders, health providers must be acknowledged at the very least with a slight bow from the waist. But doing so does not answer our burning heads' plea: “Will I be redeemed by this?” The elders have no answers. We can only use our mouths to croak out the question.

The phenomenon of self-advocacy grew out of a new approach to health care during the 1980s called managed care. Managed Care Organizations (MCO) were created to transform not-for-profit health care into a more competitive model by keeping down the cost of medical care via reducing the number of unnecessary hospitalizations and tests, among other strategies. Outpatient surgery became a more cost-effective option compared to hospital admittance; service providers were carefully chosen for in-network doctoring; and high-cost cases became intensely micro-managed by the MCO. But it has fallen far short of its original intent to deliver higher equality, less expensive health care, and thus the role of patient as activist and self-advocate was born out of sheer necessity as more and more of the costs of health care have been passed along to its consumers.

Enter the phenomenon of the patient assistance program, a needs-based review that closely resembles your state Medicaid claim application process and which uses the same income guidelines, but with a much more lenient award assessment—which is up to 138% of the federal poverty guidelines (for a single person household it is $11,000 or less.) The hospital uses your income information to either discount the amount you owe and set up a payment plan or completely write off your charges as bad debt. You don’t have to be homeless or a single parent of children under age 18 to be considered indigent enough to have your charges forgiven. In the case of Tier 5 MS specialty drugs, patient assistance programs are a great help to low-income MS patients, but probably cannot be sustained indefinitely. Now enter the need for activism.

Your first move might involve finding out what legit organization exists out there that will address these issues because you are too busy being an activist for your own care. You try very hard to lay aside anger over the fact that you had to single-handedly research the options, consult with your care team about them, and reach a consensus. Once again, you grumble under your breath, you had to do their jobs for them. It is vexing that we accept the "fact" that medicine is so complicated, service providers so harried, that patients have to become experts and bulldogs to troubleshoot an incorrect bill or research a safer alternative for a surgical procedure. Let's face it, that only works until we become elderly dementia patients who are incapable of self-advocacy and have no one to go to bat for us.

The day will undoubtedly come when I see a television ad for online universities that, with a straight face, market a special kind of medical certification program for chronically ill people who want to keep up with the latest coding and billing procedures or keep abreast of ever-changing Medicare coverage policies. Then we can do all the billing and coding, too, and generate our own invoices to ensure accuracy. Personally, I'd be tempted to hang out a shingle and become a consultant to offset my student loan debt for this definitely-not-free continuing education program—we’ll assume that Bernie will not win his party’s nomination—except for the fact that I’d get zapped by the IRS every April with a 15% self-employment tax.

Like monks and nuns, we, too, must take a vow of poverty if we commit ourselves to a lifetime of health care activism. The double-edged sword of self-advocacy drips red no matter from where the thrusts originate, no matter where the blows will land. This kind of solution has been highly tolerated by lawmakers and their good friends in our era of fragile economic recession.

But how long shall we tolerate it?

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