OP-ED

Hobson’s Wrong Answer

Thomas Hobson was his name, a licensed carrier of passengers, letters, and parcels between Cambridge and London in the years surrounding 1600. He kept horses for such purpose, and rented them when he wasn’t using them. Naturally, the students all wanted the best horses, and as a result, Mr. Hobson’s better mounts became badly overworked. To remedy this situation, he began a strict rotation system, giving each customer the choice of taking the horse nearest the stable door or none at all. This rule became known as Hobson’s Choice, and soon people were using that term to mean “no choice at all” in all kinds of situations.

Not to be confused with Sophie’s Choice, the title of a 1979 novel by William Styron, about a Polish woman in a Nazi concentration camp who was forced to decide which of her two children would live and which would die. That phrase has become shorthand for a terrible choice between two difficult options.

Both Choices come to mind when reading this week’s Boston Globe article titled Hope for Devastating Child Disease Comes at a Cost: $750,000 a Year. The headline, as is too often the case, is inaccurate. It’s $750,000 for the first year, and $375,000 annually after that. But let us not quibble. That equals a lot of resource.

The article has a photo of two adorable children, both of whom have spinal muscular atrophy (SMA) which all too often kills children before their second birthday.

The article recounts their parents’ fight to get their insurer to pay for the medicine, Spinraza, which is produced by Biogen. Let us for the moment skip over why that drug is so ghastly expensive. That is an article for another day. Nonetheless, according to the article, the FDA approved Spinraza for US sales on December 23, specifying that it was approved for all children with SMA.

The particulars of the dispute between the children’s parents and the insurer revolved around whether Biogen had proved the drug’s effectiveness only for Type 1 SMA patients—those most severely affected, or for all children with SMA. Resolution of this issue should (on strictly legal terms) be determined by the language in the subscriber agreement and any pertinent Massachusetts law—usually revolving around the definition of “experimental,” and “medically necessary.” The insurer’s spokesperson in a statement said that it considers only evidence of “safety and efficacy.” Unsurprisingly, there was no mention of cost being a factor.

Predictably, the insurer lost, and everyone is relieved, and happy, and the insurer is vilified.

Let us assume for the moment that it is indisputable that the drug is effective and safe, but costs what Spinraza costs. The first issue is whether an insurer can make cost an element of coverage determination under any circumstances.

We know that the ACA outlawed lifetime maximums, a very popular position for everyone other than actuaries and financial people with insurers who still have to price this stuff out and live with the consequences. Just how do you price out a completely unknowable variable such as this?

We live in a society where it is simply unacceptable for insurers to draw coverage lines based on cost. That battle had been fought out in courts for autologous bone marrow transplants and the like several decades ago, and the insurers (again predictably) lost.

We all know what the true issue is, but we as a society refuse to face up to it, throwing it back onto insurers as the payor of last resort, all the while reserving the right to carp about the cost of coverage. As I’ve repeatedly stated, 90% of coverage costs, more or less, is for claims expense. The point of the cost conundrum has always been about claims expense, which, as we in Boston say, is wicket haahd to control.

With these miracle drugs, it’s becoming wicked harder. So what are our options here, assuming someone actually wants to step up to the plate and confront this issue in a responsible fashion?

We must start the discussion by mentioning the dreaded “R” word. You know…rationing. Despite the fact that no one likes to admit it, countries outside of the US who have nationalized healthcare and single payor coverage use rationing every day to hold down costs. This takes the form of both delay and deny. We in the US admire such foreign systems that apparently cover their citizens for half of our cost and (if we believe the data) with better quality of care. But, if you live outside the US, the Rolling Stones said it best: “You can’t always get what you want…”

So what are our options here?

We continue to force insurers to cover drugs with proven efficacy regardless of cost, and continue our hands-off policy with regard to the redoubtable drug industry.

Same as above, but regulate drug prices so that no drug, however expensive to produce, can exceed a chargeable price of [$_______] per year, with or without governmental subsidies to the drug companies [heaven forbid that we might dampen their enthusiasm for innovation].

We create, either at the state or federal level, a high-risk pool designed to cover people exceeding certain lifetime or annual amounts or who need drug therapies of such epic cost, subsidized in whole or in part (being unsure who would pay the non governmental part) by tax dollars.

We allow insurers to have annual and lifetime maximums and look to charitable or donor means to cover the rest. That would work a lot better for children than for elderly I’d suspect.

Telling parents of children that they have no access to drugs that can save their children is truly a hard thing. It goes counter to our culture, and many of our best stories and movies. But our logical side nags us: life sometimes must be about resource allocation and making hard choices. Sounds bloodless, no? Heartless? But we cannot continue to fail to face up to this extraordinary challenge of resource allocation, where literally hundreds of other children do not receive needed care because there’s not enough money to go around. What do you say to them, despite the fact that their need is not so obvious. Is that no less heartless?

Or is this what tax dollars are for? The easy answer might be “yes,” because that removes the immediacy of the consequences of our decision. You can bury $3 Million a child in a federal budget of Trillions easily. Up to a point. That is how we got to where we got with Medicaid. And that is precisely what got us into trouble with state legislatures doing the same thing to insurers with mandates and the like. It’s the easier road, but not necessarily the most responsible road.

The reality is that we elect people to make hard choices. That reality has been long lost in our evolving culture, where perhaps the last truly hard choice made by a US elected official was made by Harry Truman in 1945 when he ordered the Enola Gay to take off.

We get distracted by many other issues in healthcare, but the truly big issue is its cost. It impacts everything else, and we must start making some hard choices about how we deal with it.

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BobHertz5Kip SullivanNiran Al-AgbaJason Chungjamesepurcell Recent comment authors
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BobHertz5
Member
BobHertz5

Huge costs for any single drug do have an impact on insurance rates. In Iowa today there is one poor young person on some genetic drugs that “cost” $1 million a month. In the relatively small pool of Blue Cross in Iowa, this one ongoing claim has raised premiums by 10%. This in turn causes many more than one person to be uninsured! The key to reform is to question the price of these drugs. Certainly the cost of production is nowhere near the price being charged. A price cap might be the least harmful solution. Our FDA is pathetically… Read more »

Jason Chung
Member

Jim, thanks for sparking a very necessary, if uncomfortable, discussion. My response below is colored by my identity as a Canadian, lawyer and former civil servant. Speaking as a former public servant, the fact that treatment options for critical, life-saving care and maintenance are taken out of parental hands is anathema to me. It’s true that resource allocation is a necessity for governments and that costs must be contained but any government that allows a system that does not account for hard cases (such as the one described) is a failed system. This is especially true when the country has… Read more »

Allan
Member
Allan

Jason, 2 points. 1) You might have gotten an MRI quickly, but that is not what I heard from my patient’s that were Canadians. That was not what I heard from the Quebec Supreme Court in Chaoulli v Quebec. That is not what I hear elsewhere. “a median wait of 20 weeks for “medically necessary” treatments and procedures in 2016 – the longest-recorded wait time since the think tank began tracking wait times.” 2) You wish to take defense spending and put it into healthcare. Maybe defense spending can be curtailed. Maybe not, but the US has a debt crisis… Read more »

Jason Chung
Member

Thanks for your response, Allan. My reply to your comment: (1) I am in no way suggesting that my results are typical. I’m merely presenting my anecdotal experience to counter other anecdotal experience being bandied about by certain groups in U.S. media. As for the Fraser Institute study you mention, I’d have to review the methodology myself but the study was roundly criticized for participation bias as well as biased measurement. (http://www.cbc.ca/news/health/fraser-institute-wait-time-survey-critique-1.3867927) Other studies based on more tangible data have said that Canadian wait times are generally within benchmarks. This isn’t to say the experience is pleasant – but in… Read more »

Allan
Member
Allan

Jason, thank you. 1) Sometime back I scoured the literature and found that the wait times for all too many was too long. I understand the waiting times are even longer now. I don’t know what you consider a normal benchmark, but I know that wait times for different provinces are published on the net and did not appear to be within the benchmark I as a physician would consider appropriate. I am not going to say Canadian medicine is bad, because it isn’t. Canadians have made their choice and if it is good for Canadians then it is good… Read more »

jamesepurcell
Member

To All: This is a hard discussion. I really didn’t want to get into the specifics of that particular drug. It’s the mindset that we MUST spend whatever it takes to save a child. I wanted to make people face up to the hard reality that we may not have the luxury of doing just that. As hard as it is to say it. If I were the Dad of such a child, would I accept that? I’m not sure. I’m fortunate not to have had to face that. But when it’s other people’s money, why not go for it?

Allan
Member
Allan

That is why when policy is being created it is supposed to be divorced from our personal concerns.

Niran Al-Agba
Member

Very nice and thought provoking post Jim! This is what we really need to be talking about. Ultimately, as a nation we will not be able to spend whatever it takes to save the life of child or anyone else for that matter. As a pediatrician, this is difficult to accept but it is the truth. In the future as we move to fewer payers, more universal type coverage, “special” treatment will require payment out-of-pocket by those on the receiving end. The needs of children to be immunized or receive specific annual well care will need to be balanced with… Read more »

pjnelson
Member
pjnelson

Before we reach a discussion of life or death dimensions, it is good to take an over-view of the over-all use with this medication. The drug requires an injection into the spinal fluid of the back. The injections begin once a month for four doses then every 4 months, permanently. The studies indicate only 40% had a measurable response. There are blood and kidney problems. There are NO studies on long-term child development. Thus, we have no reason to believe that the treatment would achieve meaningful child development. . Using standard therapeutic standards, it should still be considered experimental and… Read more »

Allan
Member
Allan

Jim, it sounds like you are calling for rationing. That is something we do every day almost always. We ration our time and everything else. Why shouldn’t we ration healthcare? As a resident I did it all the time. We didn’t have enough monitored beds, blood, money etc. In a way we played God which was not pleasant, but the rationing didn’t go into a bank account. It went directly to the next patient without personal or corporate benefit. How we rationed wasn’t set by government other than government creating a level playing field mostly by preventing monopolies. Rationing was… Read more »

BobbyGvegas
Member

Nicely put.

None of this is exactly news. See Elhauge, 1994, “Allocating Health Care Morally.”

BobbyGvegas
Member

Elhauge: “Moral absolutism has powerful emotive appeal. Easy as it may be to reject in the abstract, moral absolutism remains difficult to reject in practice. Indeed, the persistent power of absolutist beliefs in the face of unending escalation of health care costs is the most striking moral phenomenon of health law policy in the past quarter-century. Nonetheless, moral absolutism is wholly untenable as a societal system of resource allocation. Most knowledgeable observers believe we could today easily spend 100% of our GNP on health care without running out of services that would provide some positive health benefit to some patient.… Read more »