Friday, February 22, 2008

Topping-up: Medical Ethics, Equity, and Rationing, in the National Health Service

The British National Health Service is facing an important moment in the global debate about medical ethics, rationing, and equity.

Yesterday’s New York Times described a UK conflict about “topping-up” – buying services above and beyond what the NHS covers. The story is confusing. As I understand it, NHS policy is, at one and the same time, admirably honest and troublingly muddled.

Debbie Hirst has had breast cancer since 1999. It spread. Her doctors advised her to try Avastin, a drug approved by the FDA for advanced colon and lung cancer, but not for breast cancer. The National Health Service does not cover Avastin, and Ms. Hirst has sought to obtain it on a self-pay basis.

(By coincidence, the FDA may decide today about Genentech’s controversial application for breast cancer approval. For an excellent statement opposing approval, see Maggie Mahar’s Health Beat blog.)

This is the admirably honest part of the story. The NHS has made an explicit rationing decision, something we in the US, always excepting the original Oregon Health Plan, haven’t had the guts to do openly. We prefer to leave 47 million uninsured and to claim sanctimoniously that while the UK rations, we don’t. The NHS has concluded that on the basis of what we currently know about Avastin for breast cancer, there are better uses of NHS funds and it should not be covered.

I am not an expert on Avastin, and have not reviewed the primary source data. But I do know about fair process for setting limits. The NHS is a model. The key components of fair process are honesty, openness, and humility. Honesty requires that the rationale for policy must be clearly stated. Openness requires that the rationale be readily available to the public. Humility requires opportunity for critique, appeal, and new learning. It is more ethical by far to set an evidence-based limit on what is cost-worthy for collective funds as the NHS does than to pretend that rationing is an evil and to ignore 47 million uninsured as we do.

Unfortunately, at least to my reading, the NHS is muddled about the ethics of topping up. Debbie Hirst and her doctors were told that if she bought uncovered services outside of the NHS she could not use the NHS for what it does cover. The health secretary is quoted as saying:

"Patients cannot, in one episode of treatment, be treated on the NHS. and then allowed, as part of the same episode and the same treatment, to pay money for more drugs...That way lies the end of the founding principles of the NHS."

This seems wrong. We may believe that wealth is distributed unjustly, but that is not the fault of the NHS. Collective funding should be governed by considerations of cost-worthiness. Making that determination is technically and ethically challenging. But it is what every 21st century society will ultimately have to do. Individuals should then be free to use their own funds, as for Avastin.

Setting limits on what collective funds will pay for is not intended to preclude the use of private funds. That doesn't make conceptual sense, and will certainly not be acceptable politically. This piece of muddled limit-setting process is sure to be seized upon by those who want to claim that health care rationing is a moral abomination, not, as is really the case, an ethical necessity.

(Readers who want to delve into the details of topping-up should read "Free at the point of delivery - reality or political mirage?" by members of the UK group Doctors for Reform.)


eric said...

Jim--What if she got, let's say for argument's sake, toxic epidermal necrolysis due to the Avastin (I don't know if such a side effect has been reported), for example, and had to spend two weeks in hospital. Should the NHS pay for treatment of side effects of drugs that it won't cover?
On the other hand, if she took an herbal remedy and suffered a side effect, should NHS pay for the treatment of that?
Or, what if she just didn't tell what she was taking. --Eric

Jim Sabin said...

Hi Eric -

Thanks for raising an important question. It is not at all theoretical. Some people have argued, for example, that since the risks of smoking are well known, collective funds should not pay for treatment of smoking-induced diseases. But while I see explicit rationing as consistent with the core values of health care, I would not favor having the health system simply turn people away for dumb choices (starting to smoke in 2008) or bad luck (as you correctly suggest could happen in the Avastin example). For tobacco, taxes on the product to offset the costs its use generates (paid for by the user, the producer, or both) would be a better way to go.

In terms of the NHS, I could picture it developing a policy - by an an open process, with opportunity for critique and appeal, that (a) allowed for the possibility of topping-up, but (b) made clear that the NHS would be entitled to seek recovery of costs it incurred in responding to complications of the kind you envision.

By chance this morning's Boston Globe has a front page article on the cost of rescuing foolhardy winter hikers, with the headline "[New Hampshire] seeks to recoup costs from 'negligent' adventurers."



eric said...

Jim--By the same token, Eliot Spitzer wants to tax illegal drugs in the state of New York! Makes sense. --Eric