How much would you pay for a gene therapy?

Perspectives on Gene Therapy: Defining and Demonstrating Value to Payers

Kymriah has been included in the NHS and nobody but the regulator knows the price. Therefore, in Spain the answer to the question about the willingness to pay for gene therapy depends absolutely on a few officials in the Ministry, not so many, and they decide in a closed meeting without any transparency and outside of any legal procedure for public budgets. And nothing happens, that's great!. Unbelievably, that's it, the price is confidential and rule of law is useless in a failed state.

PS. Therefore, take note. There is no role for health economics evaluation, forget it forever.

Philip Stanton

Do sin taxes work?

The Use of Excise Taxes to Reduce Tobacco, Alcohol, and Sugary Beverage Consumption

The summary:

Of the 188 countries that reported 2016 tobacco tax and price data to the WHO, 173 levied an excise tax on manufactured cigarettes (61). Tobacco taxes have increased in many countries since the 2005 entry into force of theWHO’s Framework Convention on Tobacco Control. The treaty emphasizes the effectiveness of tax and price increases in reducing tobacco use, particularly among young people.On average, cigarette excise taxes account for 32% of the price in LMICs and 48% in HICs. Many, but not all, countries tax some or all other tobacco products, generally at rates well below the rate imposed on manufactured cigarettes. 

Nearly all governments levy excise taxes on at least some alcoholic beverages. Of the
192 countries that provided data to the WHO in 2012, 155 levied an excise tax on beer, 138 on wine, and 151 on distilled spirits; alcohol sales were banned in some of the nontaxing countries (52, 62). Alcoholic beverage excise taxes appear to be relatively low, according to the limited information provided.  As with cigarette taxes, alcohol excise taxes account for a lower share of price in LMICs than in HICs (both lower, in general, than for cigarettes). Among 74 reporting countries, excise taxes as a share of retail prices ranged from a low of 0.3% in Kyrgyzstan to a high of 44.9% in Norway, with an average of 17.3%. Taxes as a percentage of price are, generally, lowest on beer and highest on distilled spirits.

In 2014,Mexico became the first country in the Americas to adopt a significant tax specifically on SSBs, a one-peso-per-liter tax that raised taxed beverage prices by about 10% (13). Since then, other countries have adopted more significant taxes to reduce SSB consumption and promote health, including several US localities, South Africa, the United Kingdom, Ireland, Portugal, Saudi Arabia, the United Arab Emirates (UAE),Dominica, and Barbados.Most aim to raise retail prices by at least 10%, with a few resulting in more significant increases

Well, unfortunately the article explains the current status (and it helps) though the impact is much more difficult to measure.

Succesful populists: the age of elected despots

These are selected paragraphs from Martin Wolf excellent op-ed Elected despots feed off our fear and rage:

To be successful, a populist demagogue has to project belief in himself as a man of destiny. Self-obsession and even megalomania help; they may well be essential. In a compelling book, Disordered Minds, the Irish writer Ian Hughes suggests such men are narcissists or psychopaths. To a non-expert eye, they do appear deranged. How else can one sell the idea that “I alone am the people’s salvation” to oneself?

If such a leader wishes to subvert democracy, it is, alas, not that hard to do, as Harvard’s Steven Levitsky and Daniel Ziblatt argue in How Democracies Die. First, capture the referees (the judiciary, tax authorities, intelligence agencies and law enforcement). Second, sideline or eliminate political opponents and, above all, the media. Third, subvert the electoral rules. Supporting these assaults will be a fierce insistence on the illegitimacy of the opposition and the “fakeness” of information that does not align with whatever the leader finds useful to state.

People will want to trust such a leader whenever they desperately wish to believe that someone powerful is on their side in an unjust world. That is what happens when trust in the institutions and norms of a complex democracy falters. When faith in sober policymaking disappears, the charismatic figure emerges as the oldest kind of leader of all: the tribal chieftain. When things become this elementary, the difference between developing and so-called advanced democracies can well melt away. True, the latter have stronger institutions and norms and a more educated electorate. In normal circumstances, that may be enough to resist. Some argue it will remain enough. Yet, we are human. Humans adore charismatic despots; they always have.

Theranos details explained: the "inventor" that fooled so many smart people

The Inventor: Out for Blood in Silicon Valley (2019)

Former posts have explained the story, now a 2h. HBO documentary adds details:

On the effectiveness of digital health technologies

EVIDENCE STANDARDS FRAMEWORK FOR DIGITAL HEALTH TECHNOLOGIES

Every other day we here about a new health app, and new digital advances in healthcare. Too often, any innovation is considered effective without any deep analysis. Now, NICE provides a guide for this specific issue.

The economic impact of a DHT can be assessed using an appropriate analysis of the economic information collected. The type of economic analysis done should be determined by the financial consequences of adopting and implementing the DHT from a payer or commissioner perspective. The appropriate level of economic analysis depends on the type of decision needed and likely financial commitment. To reflect the range of commissioning decisions associated with DHTs, we have proposed 3 levels of economic analysis (see table 8).
Many DHTs will start at a basic economic analysis level but, with additional information and data about the technology and its comparators, a more robust economic analysis can be undertaken. The higher levels of economic analysis needed depends on the financial commitment required including, for example, the level of upfront investment, the likelihood of opportunity costs and the certainty of the realisation of the benefits.

Foto Colectania

AI in Global Health, a framework

Artificial Intelligence in Global Health

AI in healthcare, a podcast

How A.I. Is Humanizing Healthcare with Dr. Eric Topol


Can A.I. and machine learning make healthcare more humane, loving, and passionate?

Dr. Eric Topol thinks so.

Dr. Topol (Website | Twitter) is a geneticist, medical researcher, and author of Deep Medicine. He has written over 1100 peer-reviewed articles and is one of the top most-cited medical researchers in the world.

In this episode, Chad sits down with Dr. Topol to talk about how A.I. and machine learning are putting the patient experience back at the forefront of healthcare. Dr. Topol also explains why you don’t actually own your own medical data and what steps we need to take to get it back.

A lifetime fair drug pricing system

When Is The Price Of A Drug Unjust? The Average Lifetime Earnings Standard

Is there any measure for unfair pricing in drugs?. According to Ezequiel Emanuel prices should not

"exceed 11 percent of the average American’s disposable income. This suggests that current prices for many drugs are excessive and unjust."

Why?.

Currently, average lifetime costs for health care are estimated at 31 percent of disposable income. Drugs account for 17 percent of health care expenses. A threshold for medical care as a share of disposable income that is set 10 percentage points higher than the current average amount spent on medical care (at 41 percent, or $261,907) is generous, as is a threshold for drug costs as a share of medical costs set 10 percentage points higher (at 27 percent, or $70,715) than the current share. Using these standards, the costs for all of the drugs a person takes in a lifetime should not consume more than 27 percent of medical costs, or $70,715. This constitutes 11 percent of lifetime disposable income.

He achieves this conclusion after applying these principles:

1. Complete life. The unit of analysis should not be a year or other limited time frame, but rather the impact over a whole lifetime
2. Limited resources. The just price of a drug should reserve enough resources for people to pursue valuable life activities
3. Value. There should exist a close relationship between the actual benefits of an intervention and its price
4.  Comprehensiveness. Life activities other than health matter; in considering the benefits of a treatment, we should also consider how it affects education, employment, and other valuable life activities

This article represents a deep change of perspective on drug pricing. Cost-effectiveness of individual drugs are not enough, a lifetime and societal perspective is necessary. I agree in this part, however methodological implications are huge and uncertain.

Bonnard at Tate modern right now

Personal Health Data Cooperatives

Personal Data Cooperatives – A New Data Governance Framework for Data Donation and Precision Health
The Ethics of Medical Data Donation

Given that personal data can be copied, individuals are entitled to copies of their data and individuals are the ultimate aggregators of all their personal data, citizens are elevated to new roles at the center of health research and a novel personal data economy. There, citizens, not some multinational company, control the use of and benefit from the intellectual and economic value of these data.

In a chapter of the book you'll find a description of MIDATA cooperative, a swiss case. My impression is that this is the appropriate approach. A closer initiative is SalusCoop. However, as happens in any public good, its governance is always the foremost issue.

Biotech boom 2018

Top drugs and companies

From NRD

From Nature NRD

Bioethics landscape