As a medical anthropologist, I have spent the past 30 years based at major universities researching issues of access to healthcare and support for the inclusion of people from vulnerable and marginalised populations. In March 2020, my sister Nancy and I did something that, as scholars, we had never done before: we wrote about ourselves, comparing our own experiences receiving cancer care on either side of the Atlantic.
As we recently reported in the BMJ, much of our experience is similar. As twins, we both have the same form of cancer. Both of us received excellent treatment in well-established university teaching hospitals. Both of us are now in remission.
But there is a glaring difference. Nancy lives in the US, covered under a good private healthcare scheme. I live in the UK, covered by the NHS.
People often assume that if you have health insurance in the US, you are in good shape. As it turned out, Nancy and I were in a good position to test this assumption.
Moving to the UK in 2008, I registered with my local GP for the NHS. Nancy, joining the US Federal Government in 2007, could choose from several health insurance plans and because of a previous bout of cancer, chose a more expensive plan with a higher deductible (the amount you pay before the plan kicks in), anticipating that if she got sick again, she would be better protected from enormous bills.
I got cancer first. In my initial GP appointment in 2008, I reported a strong family history of cancer. I was referred to an NHS genetics clinic and had annual mammograms. In 2012, a routine mammogram detected early stage breast cancer. I was referred to a surgical team and eventually had a double mastectomy. I was hospitalised for six days and recovered at home for six weeks – my salary fully covered by my employer.
The UK, like all high-income countries except the US, has a version of universal healthcare. In the UK, a combination of taxes and government subsidies cover all healthcare, as well as some dental, rehabilitation and allied health services, such as physiotherapy. I never received a bill. My only paperwork was my signature on a permission-to-operate form. All NHS prescriptions are capped at £9.00 (roughly US$11.59), although because I am above age 60, all medications are free.
Nancy’s story, regrettably, is different. A bout of cancer in 1994 meant she had a “pre-existing condition”. Because this was before Obamacare – (now under threat by the Trump administration) – it meant she was unable to buy health insurance in many states. As Nancy’s home state of New York had long-established mandated coverage for people with pre-existing conditions, she kept her permanent home in New York, despite starting a job in Washington DC, hundreds of miles away.
In 2017, Nancy was again diagnosed with cancer, undergoing a lumpectomy and radiation. Because of limited sick leave, she divided her care between the lumpectomy in New York and radiation near her office in Washington. The most stressful part of Nancy’s care, however, was not cancer. It was managing the onslaught of bills and paperwork that accompanied her care.
Insurance inexplicably covered some things, denied others and required complex paperwork for it all. Some doctors demanded payment up front, leaving Nancy to sort out insurer reimbursements. Others expected partial up-front payments and billed insurance for the rest. What the insurance company would or wouldn’t cover was unclear. Nancy was regularly forced to negotiate directly with hospital labs and doctors’ offices to sort out bills.
And there were dozens of bills. Nancy needed a spreadsheet to keep track of them. Every bill had to be reviewed, often negotiated and frequently paid immediately.
There were also mistakes. One lab incorrectly assumed Nancy was uninsured and sent her a US$40,000 (£34,000) bill. The weeks Nancy spent correcting that mistake were incredibly stressful.
As someone working full time with “excellent” US health insurance, Nancy eventually paid only US$14,000 (£11,900) in out-of-pocket expenses. This was in addition to the US$3,500 (£2,975) annually deducted from her paycheck to cover 40% of her insurance premium. (Her employer pays the other 60%. If she were self-employed, she would be responsible for the entire amount.)
Nancy and I both feel we were fortunate to get good care. But I had no paperwork. I could concentrate on my illness and my recovery. And the amount of my UK taxes used to support the NHS is considerably lower than what I used to pay for employer-based health insurance when I worked in the US.
For Nancy, the experience was an unending onslaught of bills, dunning letters and anxiety. As Nancy recalls: “I’d get radiation at 7:30am, put in an eight-hour workday and come home to find another bill in my mailbox.” She continued to receive unanticipated bills for months after treatment.
Something to be proud of
In the anticipated post-Brexit trade negotiations between the US and UK, the US healthcare and pharmaceutical industries are reported to be keen to discuss getting a share of the NHS. Comparing our experiences, Nancy and I feel strongly that the NHS and universal health systems have much to commend them.
Some people in the UK complain about the NHS. Nancy and I believe these people are unaware of how good they have it. I think that the UK should be proud of the NHS. It is not just a question of having a good health service in place. Equal access for all regardless of ability to pay is a national commitment to human rights and social justice. Nancy wishes there was a comparable system in the US.