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.)