A Place for Patients in the Health Care Discussion?

I have a grave concern that the discussion about health insurance reform taking place at the highest levels of government it taking input from everyone but us, the patients.

Insurers, doctors, and drug companies are involved. So are organizations like the American Diabetes Association. The latter present themselves as if they were advocates for patients, but those of us who have been involved in diabetes advocacy for any amount of time know that this is not, in fact the case. This organization and others like it (American Heart Association, American Cancer Society) raise money from patients, but primarily serve the needs of those who profit from patients: drug companies, food companies, and doctors.

Because there is no organization of patients--most of whom are too sick or overburdened with just getting through daily life to spend their time in political activity--patients are at serious risk.

For example, the idea that "evidence based medicine" is the solution to cost cutting means that the poorly designed and badly conducted studies that "prove" that testing blood sugar is useless for people with diabetes may mean that you won't be given test strips any more. The studies that "prove" that lowering A1c is worthless--again poorly designed and sloppily conducted, may keep you from getting the drugs you need. There are bad studies that show that insulin is worthless for Type 2s. There are studies that pretty much prove that you would be better off going to a Witch Doctor than an MD for help with diabetes.

And if health reform goes in the direction it looks like it may be going, the witch doctor may be the only doctor your new health care will pay for you to see. With a huge co-pay.

I am really worried about this.