Do you ever feel that your head is spinning with conversations about “value” in health care? Some of this is focused on cost, to be sure, but much of it is about measurable impact. Given that the global expenditure for health care is in the neighborhood of $7.5 trillion, what is the actual benefit of the investment made in the healthcare field? (Think of it as 7.5 million stacks of $1 million!)
Insurance companies in the United States are adopting treatment pathways that incentivize doctors for prescribing on certain drugs. Government agencies in many countries are refusing to pay for certain medications because of cost. Oncology societies like ASCO and ESMO, and medical associations in other areas are developing value frameworks that help doctors determine what treatments are cost-effective.
Most recently the Institute for Clinical and Economic Review (ICER) has drafted a proposal to assess the value of drugs for ultra-rare diseases, determining if the cost of those drugs is worth the impact on patients with the most uncommon cancers and disorders. Under the ICER framework, other traditional orphan diseases – affecting between 10,000 and 200,000 people – will no longer receive special consideration. (ICER is a non-profit that focuses on applying economics to health care decisions.)
None of these various documents relate to others, and most of them have no mechanism for incorporating needs or interests of the individual patient. Those that do speak about added quality life years fail to take into account diseases that impact the very young, the associated quality of life impact on caregivers, or the personal values of patients.
Value conversations are happening, and they are impacting the way medical care is being given. These decisions are limiting access, changing treatment practices, and—ultimately—influencing how well and how long people live. If the most recent trend reflected in the ICER position holds up, the impact will be disproportionately felt by patients who have historically had the fewest treatment options.
Advocacy groups can and should become involved; they are uniquely positioned to bring to the debate the perspective of those who are most impacted by these discussions.
By spending one hour a month over the next three months we can all be better informed and can become part of the conversation. The webinar series is free, but you must register and can do so here.
We don’t take a stance for or against the various statements. But we are part of the conversation, and you should be too.
Prior to joining VOZ, Tim Turnham worked extensively in nonprofit health care, most recently spending a decade leading oncology patient advocacy organizations. He has written and spoken about value from the perspective of the patient. To talk more about value
Tim Turnham, PhD is a vice president at VOZ. Tim approaches patient engagement with the conviction that patients who are well informed and well supported live longer and better. He has a record of success in finding mutually beneficial connections between industry and patient advocacy groups to help achieve this goal. Tim has worked in pediatrics, HIV/AIDS, disabilities, and oncology, maximizing the insight and value that patient advocacy groups and industry can achieve through collaboration. Tim has spent countless hours listening to patients and caregivers, and helping give perspective to their experiences. In addition, Tim has worked closely with academic researchers, including convening two summit meetings that resulted in white papers on critical issues of cancer treatment. Tim holds a BA in microbiology, an MDiv, and a PhD in biblical ethics.