Many policymakers believe they understand what it’s like to interact with the health care system because they or a family member has had an unpleasant encounter with that system in its current incarnation. However, in most cases, these stories have recounted the experience of one illness that had a beginning and an end. Unfortunately, for the chronically ill, there is no end, and that salient fact makes a world of difference.
Living with chronic illness changes one’s perspective on health care reform. We who interact with the health care system on a daily basis know that health care reform cannot be built upon the existing system. Tweaks don’t curtail disasters. Failure to appreciate how the current system disserves the chronically ill leads policymakers to the mistaken belief that prevention – an aspirin a day, smoking cessation – and an increased number of primary care providers will help to curtail the costs of chronic illness.
In fact, those of us with chronic illnesses like mine – Crohn’s disease, and others in the autoimmune family, such as type 1 diabetes, multiple sclerosis, lupus, and rheumatoid arthritis – know that nothing could have prevented our illnesses, or at least nothing that modern science has discovered yet. And although it is the case that chronic illness would be better treated by enhanced care coordination, whether that coordination is accomplished by a primary care physician or the patient herself doesn’t much matter as long as everybody’s on the same page. Responsible, educated patients can manage their own illnesses to a large extent, with a little encouragement and support. Indeed, patients must manage their illness between doctor visits, so not investing in patient education and training not only fails to capitalize on the one free resource in the system – patients – but it also leaves patients without the tools they need to reach and maintain remission.
There are those who blatantly insult the chronically ill by suggesting that health care benefits should be taxed so that patients will think twice before asking for care. Anybody who thinks consumers don’t already think about cost doesn’t know anybody with a chronic illness. My medication copays and the cost of care that is not covered by my insurance are impossible to ignore.
Still others in Congress want a “Medicare for All” arrangement, although they fail to address the glaring gaps in Medicare, especially for the chronically ill. For example, Karen has multiple sclerosis and just went on Medicare. Her prescription drug copay is 25 percent of the cost of her drugs. That’s $600 for her primary multiple sclerosis medication alone. So now she is off her medicine and having seizures on a near-daily basis. A plan that expects patients to pay for 20 percent of every health care dollar we spend, and 25 percent of our prescription drug costs, will bankrupt the chronically ill.
We know that one of the primary challenges of health care reform is to rein in the costs of chronic illness. And we know that patients who don’t get the care they need cost more in the long run, as their illness spins out of control. It is, therefore, remarkable that the debate over health care reform has focused so minimally on what it’s like to live with chronic illness, and on the need to provide support to the chronically ill, enabling them to understand their disease better, to know which medications they take for which purposes – to manage their own care.
And yet, despite the cost of chronic illness, who in Washington is at the table negotiating health care reform who really understands what life is like for the chronically ill? Surely, the pharmaceutical companies who want to sell us a lot of drugs, the insurance companies who want to dump us, and health care providers who think we are a drain on their limited resources will not speak for us. And so it is the case that none of the proposals for health care reform incorporates any serious measures to educate and train patients to navigate the system on their own.
I have had a chronic disease for thirty-four years. I have never asked a doctor to write an insurance appeal for me, write a note to an employer, or help me negotiate reasonable accommodations. As a lawyer, I have basic advocacy skills that have allowed me to perform these functions myself. And through my work with other patients, I have become convinced that many of them can advocate for themselves when armed with a little information, perhaps a sample or model letter, and a little direction. Surely, arming patients with the tools they need to manage their own care makes sense from a cost standpoint. Not only are patients a free resource, but a patient who participates in her own care will be more compliant with doctor’s orders and, thus, will reach better health outcomes, thereby curtailing costs.
Whatever reform plan we end up with will become an intimate part of the daily life of the fully one-half of Americans who suffer from a chronic health problem. Reform will not work if chronically ill patients do not buy into it, and that means giving them a seat at the negotiating table now, while also incorporating their needs and abilities into any solution. The failure to do so may well doom any effort at health care reform.