February 25, 2009

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.


Anonymous said...

I'm also worried. Like you said, we will probably be denied many procedures and meds based on faulty studies. It has been rumored that if patients are non- compliant the insurance companies may withhold payments to doctors, leaving dropping the patient as the only recourse for doctors.

Anonymous said...

Jenny, if the US goes to a universal centralized national health care system, we’ll be seeing BIG BIG changes for most Americans and all not for the better (in my opinion), unless you don’t have or can’t afford health care coverage today. There’s no way for our government to pay for comprehensive health coverage in the manner most Americans receive health care today and keep services at the same level.

I don’t see how the costs can work, except for some type of rationing (limitation) of services and treatments provided. There are many ways for the government to accomplish limitation of coverage. Maybe, as suggested, a treatment or medication is not considered efficacious or cost effective for the government to cover. This happens now with private plans, but at least there is some amount of competition in the market place. Are we going to be able to sue the US government for lack of treatment?

If we go to a national centralized system, look for private secondary coverage continuing for people with the means to pay for it. This happens, as I understand, in Great Britain today.

What I can’t understand is we have some experience with national health care already (Medicare, Medicaid). Maybe some doctors can tell us how well these national plans work today. I’ve heard in some areas doctors won’t accept Medicare patients for general coverage. I assume that’s because the reimbursement is too low or slow?

I’m a Type 2 with 6.4 A1C. I also have inflammatory arthritis and taking Embrel for that. Very expensive (my company pays most now) about $250.00 per weekly injection. I’m only taking Metformin ER and one small 0.5 mg of Prandin per day. I’m also doing some serious exercising, although I need to better on my diet and cut out more carbs.

Obviously, at 60 years old and with my chronic health conditions, I’m very concerned with the outcome of any proposed national health care plans offered by our political representatives over the next few years. I’ll keep them up at the top of my e-mail list!

Anonymous said...

The three issues of major concern with health care reform are (1) care rationing; (2) blame-placing; (3) patient rights and information privacy. The first is unavoidable in any government-sponsored, -mandated, or -regulated system. The second will worsen as the cost-effectiveness of increased government interference grossly decreases the ROI for investment in any preventative, palliative, or ameliorative care. The third will keep us like the proverbial mushrooms, taking away what little rights we already have to our personal medical information, and leaving us little more than Mengelean (is that an adjective?) subjects at the beck and call of Big Pharma, with some flimsy excuse to bypass medical ethics and informed consent.

Scott S said...

There is legitimate reason for concern, and as you note, the self-designated advocates for patients (the American Diabetes Association has always been a group for doctors, and only those doctors who subscribe to a specific model, not necessarily all doctors who treat patients with diabetes). The real question is what can patients do in this scenario? The most obvious is to contact our representatives in Congress and express these concerns unequivocally. But there also needs to be a unified message from patients, and in this regard, we can and should assemble (quickly, I might add) a list of concerns that patients with diabetes should routinely be demanding of our representatives.

The only issue is that someone needs to organize this effort, any volunteers out there?

Anonymous said...

Someone once said be careful of what you wish for...

The people who voted for this change are getting exactly what they wanted, someone who will take care of them. I just pray that I am able to maintain control with diet and exercise. Last A1C 5.5

Anonymous said...

What worries me is that you will adopt the worst of the practices such as we see here (UK) with the NHS.

Meanwhile the NHS is busy adopting the worst of the practices from your HMOs (in fact some of your health insurance companies are trying to move in over here, seeing us as a major profit centre)

My suggestion: buy shares in drug companies and carb producers now and use the profits to pay for your healthcare (cynical grin)