Neema Mirchi woke up one Saturday morning in March of 2015 feeling groggy after a late night out with friends. His vision was blurry; something was wrong.
Four days later, a neurologist at Mount Sinai hospital in New York City would diagnose Mr Mirchi, then 28, with multiple sclerosis (MS), an autoimmune disease that attacks the protective covering of the central nervous system and disrupts communication between the body and brain.
MS awareness groups suggest that between 2.3-2.5m people live with the disease worldwide. Many with so called “relapse-remitting” forms of the condition are able to live normally with the help of disease-modifying treatments. Yet their ability to manage their symptoms depends greatly on the healthcare available to them.
Once diagnosed with the condition, Mr Mirchi would incur a litany of costly medical treatments in order to stabilise it.
In the US, access to affordable medical care is a critical factor. According to the National Multiple Sclerosis Society in the US, 70 per cent of MS patients report “some difficulty” paying for healthcare and 16.4 per cent report “a lot of difficulty”.
The US healthcare system is run largely by the private sector. For those who do not qualify for the government assistance programs designed to help low-income families and the retired, access depends on insurance plans offered by an employer or on Healthcare.gov, the online insurance marketplace created through the Affordable Care Act of 2010, otherwise known as “Obamacare”.
The Milliman Medical Index, which measures the out-of-pocket cost of healthcare for a typical American family of four, on an average employer-sponsored plan, came up with a figure of $24,671 for 2015. According to Milliman, the actuary that publishes the index, this number has almost tripled since it began tracking these costs in 2001, an increase attributed in part to a spike in prescription drug costs in the US over the past few years.
When Mr Mirchi decided to see a doctor, he was quickly ushered from an urgent care facility to the emergency room at Mount Sinai St Luke’s Hospital in midtown Manhattan. Nurses ran a series of blood tests, while the attending physician conducted an eye test and ordered an MRI scan.
The hospital’s MRI machine was broken and so he was immediately transferred to a Harlem hospital via ambulance to have the scan. “That’s when I knew this was really serious,” Mr Mirchi says.
A day later, he was sitting in the office of a neurologist hearing his diagnosis. Lesions had formed on his brain, causing inflammation of his eyes, and the blurry vision. “Leaving the hospital that day,” he says, “I was just miserable.”
He would later learn that the bill for this single day of care, including hospital and physician fees, lab tests and the ambulance, totalled $14,367. He knew he would be responsible for at least some of the bills as his employer-sponsored health plan required him to pay the first $2,000 of costs.
Despite that, Mr Mirchi considers himself lucky — the average annual cost for someone with MS in the US is $69,000, including healthcare fees, as well as ancillary costs like lost wages, according to the MS Society.
As a full-time employee, Mr Mirchi enjoys medical benefits, along with a generous holiday and work-from-home policy, allowing him to keep up with medical appointments. And although his speedy diagnosis came at a price, it is a luxury not available in many of the universal healthcare systems operated by other countries.
A few years earlier, in March 2013, Henry, a Londoner who did not want to reveal his surname, woke up with odd sensations down the left-hand side of his body. At first he dismissed the creeping numbness, but when his symptoms worsened in the days that followed, a friend drove him to the accident and emergency unit of a local hospital in west London. So started a two-month-long journey before Henry would receive his MS diagnosis.
“It was quite a drawn-out process and a frustrating one,” says the 27-year-old musician.
Unlike many MS sufferers, Henry did not have any visual impairments so staff at A&E concluded he had a vitamin B deficiency. They sent him for blood tests — which came back negative a few days later. “At this point, I’m walking with a stick, I’ve got very wobbly legs and no one knows what’s going on,” he says.
Henry’s experience is not atypical for MS patients in the UK. A survey by the Multiple Sclerosis Society found about 40 per cent of Britons with MS wait a year or more for the correct diagnosis. While tests and treatment relating to MS are available for free through the NHS, opting for private healthcare can drastically speed up waiting times.
For Henry, one of the 5,000 people in the UK diagnosed with MS each year, private healthcare was never a long-term option for financial reasons. But, after being referred to an MS unit in central London, he was presented with the choice of a months-long delay for an MRI scan through the NHS or waiting a few days for a private scan.
“I have paid only for that MRI and nothing else,” he says. It cost him £1,000, and his free NHS care since — a combination of consultations with a prominent neurologist and a specialist MS nurse practitioner team — has been swift and efficient, he says.
Within an hour of Henry’s diagnosis, he was seen by nurses to discuss his treatment options, and, like Mr Mirchi, put on steroids that cleared up his symptoms in days. He now visits the unit for blood tests every three months and also has an annual check-up with a neurologist.
As he was allergic to an injectable drug called Interferon Beta, Henry was one of first people able to try out a new pill called Tecfidera that had just passed testing by the EU drug regulator but had been available for more than a year already in the US.
While this “quality medication” means that currently “having MS is a peripheral thing” for Henry, he is aware of the advantages of being based in London.
The MS Society regularly calls for adequate treatment to be available across the UK, including in more deprived areas where local NHS budgets may be underfunded — resulting in a lack of information or access to MS specialists.
“I’ve not had to do anything but turn up to my appointments on time and take my pills regularly. The support is incredible,” Henry says.
In New York, Mr Mirchi also struggled to find the right treatment. He started on an oral medication called Gilenya soon after his diagnosis, but developed early signs of macular oedema, a build-up of fluid in the centre of the retina. Like Henry, he now takes a twice-daily dose of Tecfidera.
But during the first year of his diagnosis Mr Mirchi accrued almost $75,000 in hospital, laboratory and prescription drug costs, which were largely borne by his insurer. In 2016, he opted for a more comprehensive health plan — instead of waiting to reach the $2,000 annual deductible, he now pays a higher premium each month and small co-payments for doctor visits and prescriptions. The list price of a month’s supply of Tecfidera is roughly $6,000, but Mr Mirchi is responsible for only $20 per purchase.
“The scariest thing is the unpredictable-ness of it all,” he says.