Are QALYs #ableist?

As many of us who have had to review submitted journal articles, thesis defenses, grant applications, white papers, and even published literature know, providing feedback on something that is poorly conceived is much harder than providing feedback on something well done.

This is going to be hard.

Who is ValueOurHealth?

The video above comes from the website of “”; I would tell you more about them, but there is no “About Us” menu item on the website. However, the website indicates that they are a group of patient organizations concerned about:

“The use of flawed, discriminatory value assessments [that] could threaten access to care for patients with chronic illnesses and people with disabilities.”

In particular, who find issue with value assessments that

“place a value on the life of a human based on their health status and assume every patient will respond the same way to treatments.”

QALYs, according to these concerned patient groups, assign a value to human beings. People with lower values (like Jessica, in the video above), then, will be denied coverage because their life is “valued less than someone in perfect health” which means “less value is also placed on treating” them. (Many will be quick to notice that health states and QALYs are used interchangeably here. I try to explain why below.)

It’s not like this is a well-intended rogue group who simply misunderstands the concept of a QALY, requires someone to send them a polite email, and then we can all move on. Other groups have also asserted that QALYs unfairly discriminate against the aged and disabled, and include AimedAlliance, Alliance for Patient Access, Institute for Patient Access, Alliance for Aging Research, and Global Liver Institute. There are likely many more patient groups that abhor QALYs (and definite articles/determiners, it seems) out there, and are justifiably concerned about patient access to therapy. But these are all the ones I could find through a quick search and sitting from my perch in Canada.

Why do they hate QALYs?

One can infer pretty quickly that ValueOurHealth and their illustrative message is largely motivated by another very active organization, the “Partnership to Improve Patient Care” (PIPC). The video, and the arguments about “assigning QALYs” to people, seem to stem from a white paper produced by the PIPC, which in turn cites a very nicely written paper by Franco Sassi (of Imperial College London), that explains QALY and DALY calculations for researchers and policymakers.

The PIPC white paper, in fact, uses the very same calculation provided by Prof. Sassi to illustrate the impact of preventing a case of tuberculosis. However, unlike Prof. Sassi’s illustrative example, the PIPC fails to quantify the QALYs gained by the intervention. Instead they simply focus on the QALYs an individual who has tuberculosis for 6 months will experience. (0.36, versus 0.50, for those keeping score). After some further discussion about problems with measuring health states, the PIPC white paper then skips ahead to ethical problems with QALYs central to their position, citing a Value in Health paper by Erik Nord and colleagues. One of the key problems with the QALY according to the PIPC and argued in the Nord paper goes as follows:

“Valuing health gains in terms of QALYs means that life-years gained in full health—through, for instance, prevention of fatal accidents in people in normal health—are counted as more valuable than life-years gained by those who are chronically ill or disabled—for instance, by averting fatal episodes in people with asthma, heart disease, or mental illness.”

It seems the PIPC assume the lower number of QALYs experienced by those who are sick equates with the value of lives to payers. Even more interestingly, Prof. Nord’s analysis says nothing about costs. While those who are older have fewer QALYs to potentially gain, they also incur fewer costs. This is why, contrary to the assertion of preventing accidents in healthy people, preventive measures may offer a similar value to treatments when both QALYS and costs are considered.

It is also why an ICER review showed that alemtuzumab is good value in individuals requiring second-line treatment for relapse-remitting multiple sclerosis (1.34 QALYs can be gained compared to the next best alternative and at a lower cost then comparators), while a policy of annual mammography screening of similarly aged (i.e., >40) healthy women is of poor economic value (0.036 QALYs can be gained compared to no screening at an additional cost of $5,500 for every woman). Mammography provides better value in older individuals. It is not unlike fracture prevention and a myriad of other interventions in healthy, asymptomatic people in this regard. Quite contrary to the assertion of these misinformed groups, many interventions represent increasingly better value in frail, disabled, and older patients. Relative risks create larger yields when baseline risks are high.

None of this is to say that QALYs (and incremental cost-effectiveness ratios) do not have problems. And the PIPC, at the very least, should be commended for trying to advance alternative metrics, something that very few critics have offered. Instead, the PIPC and like-minded organizations are likely trapped in a filter bubble. They know there are problems with QALYs, and they see expensive and rare disease treatments being valued harshly. So, ergo, blame the QALY. (Note to PIPC: it is because the drugs are expensive, relative to other life-saving things, not because of your concerns about the QALY.) They then see that others feel the same way, which means their concerns are likely justified. A critique of QALYs issued by the Pioneer Institute identifies many of these same arguments. One Twitterer, a disabled Massachusetts lawyer “alive because of Medicaid” has offered further instruction for the QALY-naive.

What to do about it?

As a friend recently told me, not everyone is concerned with the QALY. Some don’t like what they see as a rationing approach promoted by the Institute for Clinical and Economic Review (ICER) assessments. Some hate the QALY. Some hate both. Last year, Joshua T. Cohen, Dan Ollendorf, and Peter Neumann published their own blog entry on the effervescing criticism of ICER, even allowing the PIPC head to have a say about QALYs. They then tried to set the record straight with these thoughts:

While we applaud the call for novel measures and to work with patient and disability advocates to understand attributes important to them, there are three problems with PIPC’s position.

First, simply coming up with that list of key attributes does not address how society should allocate finite resources, or how to price a drug given individual or group preferences.

Second, the diminished weight QALYs assign to life with disability does not represent discrimination. Instead, diminished weight represents recognition that treatments mitigating disability confer value by restoring quality of life to levels typical among most of the population.

Finally, all value measures that inform allocation of finite resources trade off benefits important to some patients against benefits potentially important to others. PIPC itself notes that life years not weighted for disability (e.g., the equal value life-year gained, or evLYG, introduced by ICER for sensitivity analysis purposes) do not award value for improved quality of life. Indeed, any measure that does not “discriminate” against patients with disability cannot award treatments credit for improving their quality of life. Failing to award that credit would adversely affect this population by ruling out spending on such improvements.

Certainly a lot more can be said here.

But for now, I am more curious what others have to say…

36th EuroQol Plenary Meeting

The 36th EuroQol Plenary Meeting will be held on 18-21 September 2019 in Brussels, Belgium.

  • 10 April 2019: Deadline submitting abstracts
  • 11 April – 21 April 2019: Review and selection of abstracts
  • 29 April 2019: Abstract acceptance notification
  • 12 June 2019: Deadline submitting papers and posters
  • 13 June – 26 June 2019: Review of submitted papers and posters
  • 8 July 2019: Papers and posters published on EuroQol members’ website

Brendan Collins’s journal round-up for 14th January 2019

Every Monday our authors provide a round-up of some of the most recently published peer reviewed articles from the field. We don’t cover everything, or even what’s most important – just a few papers that have interested the author. Visit our Resources page for links to more journals or follow the HealthEconBot. If you’d like to write one of our weekly journal round-ups, get in touch.

Income distribution and health: can polarization explain health outcomes better than inequality? The European Journal of Health Economics [PubMed] Published 4th December 2018

One of my main interests is health inequalities. I thought polarisation was intuitive; I had seen it in the context of the UK and the US employment market; an increase in poorly-paid ‘McJobs’ and an increase in well-paid ‘MacJobs’, with fewer jobs in the middle. But I hadn’t seen polarisation measured in a statistical way.

Traditional measures of population inequalities like Gini or Atkinson index measure the share of income or the ratio of richest to poorest. But polarisation goes a step further and looks whether there are discrete clusters or groups who have similar incomes. The theory goes that having discrete groups increases social alienation, conflict and socioeconomic comparison and increases health inequalities. Now, I get how you can test statistically for discrete income clusters, and there is an evidence base for the relationship between polarisation and social tension. But groups will cluster based on other factors besides income. I feel like it may be taking a leap to assume a statistical finding (income polarisation) will always represent a sociological construct (alienation) but I confess I don’t know the literature behind this.

China is a country with an increasing degree of polarisation as measured by the Duclos, Esteban and Ray (DER) polarisation indices, and this study suggests that it is related to health status. This study looked at trends in BMI and systolic blood pressure from 1991 to 2011 and found both to increase with increased polarisation. I imagine a lot of other social change went on in this time period in China. I think BMI might not be a good candidate for measuring the effect of polarisation, as being poor is associated with malnourishment and low weight as well as obesity. The authors found that social capital (based on increasing family size, community size, and living in the same community for a long time) had a protective effect against the effects of polarisation on health. Whether this study provides more evidence for the socioeconomic comparison or status anxiety theories of health inequalities, I am not sure; it could equally provide evidence for the neo-materialist (i.e. simply not having enough resources for a healthy life) theories – the relative importance will likely differ by country anyway.

Maybe we don’t need to add more measures of inequality to the mix but I am intrigued. I am just starting my journey with polarisation but I think it has promise.

Two-year evaluation of mandatory bundled payments for joint replacement. The New England Journal of Medicine [PubMed] Published 2nd January 2019

Joint replacements are a big cost to western healthcare systems and often delayed or rationed (partly because replacement joints may only have a 10-20 year lifespan on average). In the UK, for instance, joint replacements have been rationed based on factors like BMI or pain levels (in my opinion, often in an arbitrary way to save money).

This paper found that having a bundled payments and penalties model (Comprehensive Care for Joint Replacement; CJR) for optimal care around hip and knee replacements reduced Medicare spending per episode compared to areas that did not pilot the programme. The overall difference was small in absolute terms at $812 against a total cost of around $24,000 per episode. The programme involves the hospital meeting a set of performance measures, and if they can do so at a lower cost, any savings are shared between the hospital and the payer. Cost savings were mainly driven by a reduction in patients being discharged to post-acute care facilities. Rates of complex patients were similar between pilot and control areas – this is important because a lower rate of complex cases in the CJR trial areas might indicate hospitals ‘cherry picking’ easier to treat, less expensive cases. Also, rates of complications were not significantly different between the CJR pilot areas and controls.
This paper suggests that having this kind of bundled payment programme can save money while maintaining quality.

Association of the Hospital Readmissions Reduction Program with mortality among Medicare beneficiaries hospitalized for heart failure, acute myocardial infarction, and pneumonia. JAMA [PubMed] Published 25th December 2018

Nobody likes being in hospital. But sometimes hospitals are the best places for people. This paper looks at possible unintended consequences of a US programme; the Hospital Readmissions Reduction Program (HRRP) where the Centers for Medicare & Medicaid Services (CMS) impose financial penalties (almost $2billion dollars’ worth since 2012) on hospitals with elevated 30-day readmission rates for patients with heart failure, acute myocardial infarction, and pneumonia. This study compared four time periods (no control group) and found that, after the programme was implemented, death rates for people who had been admitted with pneumonia and heart failure increased, with these increased deaths occurring more in people who had not been readmitted to hospital. The analysis controlled for differences in demographics, comorbidities, and calendar month using propensity scores and inverse probability weighting.

The authors are clear that their results do not establish cause and effect but are concerning nonetheless and worthy of more analysis. Incidentally, there is another paper this week in Health Affairs which suggests that the benefits of the programme in reducing readmissions was overstated.

There has been a similar financial incentive in the English NHS where hospitals are subject to the 30-day readmission rule, meaning they are not paid for people who are readmitted as an emergency within 30 days of being discharged. This is shortly to be abolished for 2019/20. I wonder if there has been similar research on whether this also led to unintended consequences in the NHS. Maybe there is a general lesson here about thinking a bit deeper about the potential outcomes of incentives in healthcare markets?

In these last two papers, we have had two examples of financial incentive programmes from Medicare. The CJR, which seems to have worked, has been dampened down from a mandatory to a voluntary programme, while the HRRP, which may not have worked, has been extended.