What About US?

On Monday, White House Office of Health Reform Director Nancy-Ann DeParle held a webinar on health care reform, taking questions over Facebook messaging. I asked how health care reform will curtail the cost of chronic illness. If 75% of every health care dollar in the United States goes to paying the cost of chronic illness, then for health care reform to succeed, we need to rein in those costs. The Congressional proposals have focused on prevention, but for those of us with Crohn's disease, lupus, MS, type 1 diabetes, and so many other illnesses that are not preventable, there is not even the hint of an answer. Ms. DeParle's response was no better. She pointed to the funding for electronic medical records that was contained in the stimulus package. Yup, we're going to rein in the cost of chronic illness by making sure people take their medicine on time. That's really exactly what she said.

First, how will electronic medical records make sure people take their medicine on time?

Second, do they really think that people skip their meds out of negligence? Don't they understand that the people who skip meds do so because they can't afford their medication?

She could have said that the chronically ill will be helped greatly by having affordable health care, so people who need ongoing care get it and their illnesses don't get out of control, but she didn't. She could have said that the Congressional proposals -- at least the House and Senate HELP Committee versions -- adopt a medical home approach to chronic illness, with care coordinated by a primary care physician, but she didn't. Indeed, she seemed singularly unprepared for such a question even though chronic care management is widely believed to be necessary if we are to sustain the costs of health care in the United States.

And so it goes. On a conference call earlier this Spring, I asked representatives of Families USA and the American Cancer Society the same question. They said they were focusing on encouraging doctors to specialize in primary care. Another half-response, at best.

What bothers me most about all of this is that we patients are just ignored. HELLO! I can help manage my own care. Indeed, I have to manage my own care between doctor visits, so I'm in the picture, like it or not. And my services to myself are FREE. So if we simply educated, trained patients with chronic illness to manage their own care, we would immediately save money at absolutely NO COST WHATSOEVER.

I work with a lot of patients. Some of them really need help -- they need someone to step in and file an insurance appeal for them, or negotiate severance or reasonable accommodations in work or school. Sometimes, just the fact that I'm a lawyer makes a difference when I get involved. But to a very large extent, patients are perfectly adequate advocates. As times get tougher and an increasing number of people ask for my help, I have to teach at least some of them to do what needs to be done for themselves, with a little coaching from me. It works fine. Indeed, in one case recently, the patient did better than I ever thought she could. All I did was help focus her direction.

Our Know Your Rights handbook sells for $30. If printed in a large enough volume, we could bring that cost down tremendously. It covers how to get your own medical records, how to find health insurance if you have a pre-existing condition, how to handle disputes with health and disability insurers, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location. I can imagine a publication like this, and workshops by trained trainers all over the country, teaching the chronically ill to advocate for themselves. The cost of this training would be minimal compared with the savings. If doctors no longer had to write insurance appeals, or battle for patients over employment and school issues, we would save the system a tremendous amount of money. More people would be insured, and insurance would cover medical necessities. People would stay employed longer, and in school. People with chronic illnesses would be vastly better off and the cost would be minimal.

And that's just my idea. I know there are others who believe in empowering patients by giving them the tools they need to succeed in managing their own illnesses.

We know that patients who participate in their own care are more compliant with doctor's orders and, thus, achieve better health outcomes, thereby reducing cost. So why is it that nobody's talking about training patients as a means towards reducing the cost of chronic illness? It sure seems like a no-brainer to me. Jennifer