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Sarah McKeown, a second-year DPhil on the Evidence-Based Medicine Programme, writes about her experience of clinical studies in low-resource settings and studying differences in access to cancer medication between patients covered by England’s NHS and the U.S. Medicare program.

Photo of student, Sarah McKeown, stood underneath the bridge of sighs

I was raised with a reverence for scientific discovery. I can still hear my dad (a dentist) at the dinner table telling my older sister and me about dentist Horace Wells and his discovery of laughing gas. Suddenly, dentistry wasn’t a traumatizing medieval experience for patients thanks to Wells and his anesthesia! The histories of scientists like Louis Pasteur and Rosalind Franklin were legendary and heroic, and the way they advanced the health of entire populations was only reinforced in my classes at Johns Hopkins. However, I quickly learned that it’s easy to be excited by the brilliance of discovery and miss the most important part of science: improving the lives of patients.

During my undergraduate and graduate years, I worked for the Johns Hopkins Center for Global Noncommunicable Disease (NCD) Research and Training. The Center for NCDs conducted clinical studies and trials in low-resource settings such as Rwanda, Uganda, Nepal, and Peru. These efforts sought to reach patients suffering from chronic diseases like COPD and asthma and work within the existing health system to improve their treatment plans. Getting preexisting medications to patients was a bigger barrier than I could have imagined. As Bill Gates said in a 2019 interview with The Wall Street Journal, “it isn’t enough just to develop powerful new medicines. They have to make their way from the lab to the hospitals, clinics, and homes where people need them. That journey doesn’t happen automatically.”[1]  Partnering with local health professionals who better understood the challenges was helpful, but didn’t solve problems like counterfeit medications, empty pharmacies, and remotely located patients dealing with undrivable or overcrowded roads. [2]

Author at the African Community Centre for Social Sustainability (ACCESS) Uganda in the Nakaseke2 Author at the African Community Centre for Social Sustainability (ACCESS) Uganda in the Nakaseke2   Example of traffic congestion on the road between Kampala and Nakaseke. Fuel shortages and poor infrastructure contribute to access challenges in the region3Example of traffic congestion on the road between Kampala and Nakaseke. Fuel shortages and poor infrastructure contribute to access challenges in the region3

 

Each time I returned home, I noticed challenges to patient access in the developed world that I had overlooked before. Health literacy, availability of specialists, and insurance coverage are secondary challenges we often ignore once a new treatment has been discovered. 

In my policy classes at the Bloomberg School of Public Health, I saw that cost isn’t the only challenge for a patient: an insurer’s decision to cover a medical product, and how much of the cost they’ll make a patient share makes a significant difference in a patient’s decision to seek care.[1] The danger and beauty of public health policy is its potential impact. While a doctor might see thousands of patients a year, and likely improve many of those patients’ lives, a change in federal rules or pricing policy can impact millions of people very suddenly.

When I worked in Johnson and Johnson’s Global Market Access division for a summer, I learned that oftentimes medicines won’t even be launched in other countries because the manufacturer isn’t confident insurers will agree to cover them—which means most patients can’t buy it. For example, in the United Kingdom, only 68 percent of all new cancer medications developed from 2011-to 2020 are available. In comparison, patients in the United States have the benefit of access to 95 percent of new cancer medications. [2]  Of cancer medications released in the last 5 years, the United States enjoys access to 84 percent while patients in the UK only have access to 47 percent. 

Part of the reason insurance coverage in the UK is so strict is to keep costs low. According to the Organization for Economic Co-operation and Development (OECD), in 2020 the United States spent twice as much as the UK on healthcare per capita, and this translates over to pharmaceutical spending. [3] The UK underspends on medicine compared to many other developed economies with only 9 percent of its health care budget compared to an average of 15 percent among comparable countries (Germany, France, Canada, Australia, Japan, Italy, Spain, South Korea, the United States, and Brazil). [4] The UK’s leaner system is driven in part by an approach to health technology assessment (HTA) that uses cost-effectiveness thresholds to determine whether new treatments and drugs should be covered by England's National Health Service (NHS). In theory, this extra step is intended to ensure that treatments are worth what they cost and that resources are being allocated fairly and rationally, which we can’t expect patients to do on their own. The way society tends to consider treating cancer is framed in a uniquely emotional, almost heroic way; consider how we talk about “fighting,” “battling” and “surviving” cancer, with success stories given disproportionate attention. Patients are in an incredibly vulnerable state when deciding on health treatments and may be unduly influenced by the potential of extending life in exchange for hundreds of thousands of dollars.

NICE, The National Institute for Health Care and Excellence, is made up of a panel in charge of evaluating new medicines. Pictured here is leadership in NICE’s Center for Health Technology Evaluation during a webinar hosted to explain changes in the way they evaluate health technology  NICE, The National Institute for Health Care and Excellence, is made up of a panel in charge of evaluating new medicines. Pictured here is leadership in NICE’s Center for Health Technology Evaluation during a webinar hosted to explain changes in the way they evaluate health technology

 Many patient rights organizations argue, however, that the coverage recommendations are politically motivated by cost containment spurred by an underfunded NHS. Citizens pay taxes and insurance premiums and expect to have their (physician informed) choice of and access to existing treatments when a terrible diagnosis occurs. The idea of explicitly rationing healthcare in the United States is so contentious that an American politician likened the system to “death panels” on the national stage in 2009. This extra process does take time and may make it harder for patients in the UK to get access to new medication quickly, or at all. On average, cancer patients in the UK experience an average wait time nearly a year longer than patients in the US.[1] And average survival rates for patients in the US are at least 5 percent higher than those of UK patients with breast, colorectal, lung, prostate, and pancreatic cancer. [2]  Does the HTA process and difference in access to medication contribute to unequal survival rates between the two nations? Which policy benefits the people it’s supposed to serve? 

I’ll have a better answer in 6-8 years! As part of Oxford's DPhil in Evidence-Based Health Care, I’ll be studying differences in access to cancer medication between patients covered by England’s NHS and the U.S. Medicare program. I hope to gain a deeper understanding of both health systems and apply my findings to benefit patients and inform cancer treatment in each nation.

References

[1] Gates, Bill. “Bill Gates: The Best Investment I've Ever Made.” The Wall Street Journal, Dow Jones & Company, 17 Jan. 2019, www.wsj.com/articles/bill-gates-the-best-investment-I've-ever-made-11547683309.

[2]Photo taken by author.

[3] Nosratnejad, Shirin, and Elham Shami. “70: Health Insurance and the Utilization of Health Care: A Systematic Review.” BMJ Open, British Medical Journal Publishing Group, 1 Feb. 2017, bmjopen.bmj.com/content/7/Suppl_1/bmjopen-2016-015415.70. www.commonwealthfund.org/publications/issue-briefs/2020/jan/us-health-care-global-perspective-2019.  

[4] PhRMA analysis of IQVIA Analytics Link and FDA, EMA, and PMDA data. May 2021. New Active Substances approved by U.S. FDA, European Medicines Agency (EMA) and/or Japan's Pharmaceuticals and Medical Devices Agency (PMDA) and first launched in any country between January 1, 2011 and December 31, 2020 Note: Lag time is 11 months

[5] OECD (2021), Health spending (indicator). doi: 10.1787/8643de7e-en. https://data.oecd.org/healthres/health-spending.htm#indicator-chart.

[6] “Drug Expenditure Dynamics 1995–2020: Understanding Medicine Spending in Context.” IQVIA, IQVIA Institute , 14 Oct. 2021, https://www.iqvia.com/insights/the-iqvia-institute/reports/drug-expenditure-dynamics.

[7] PhRMA analysis of IQVIA Analytics Link and FDA, EMA and PMDA data. May 2021. New Active Substances approved by U.S. FDA, European Medicines Agency (EMA) and/or Japan's Pharmaceuticals and Medical Devices Agency (PMDA) and first launched in any country between January 1, 2011 and December 31, 2020

[8] Coleman, MP, and C Allemani. “Global Surveillance of Cancer SURVIVAL Trends up to 2014 (CONCORD-3).” European Journal of Public Health, vol. 28, no. suppl_4, 2018, doi:10.1093/eurpub/cky212.623.