Mind the Gap: Denial of chemotherapy or protection of a system?

This week’s writing challenge with the Daily Post is a “Mind the Gap” challenge called “the State of the State.”   Bascially, they want people to write on a political or hot-button issue.

The topic I am choosing to write about is relevant to my future career in cancer care.  It came to a forefront for me when I was working this summer when there was a big local “scandal” of sorts regarding funding of chemotherapeutic agents.

Before I get too far into this, I should clarify that I live and work in the Canadian health care system.  This means that I exist in a society where socialized health care is the norm and I like it like that.  People get (theoretically) equal access to all standard care without having to live with the financial burden of things like hospital stays, in-hospital medications or investigations.  Yes, there are flaws in the system, but overall, it levels the playing field.

In the Canadian system, chemotherapy is often provided in hospital and is paid for by the government health care system.  The drugs covered are based on the type of malignancy and its response to other agents as per “recent” (I use this term loosely) evidence.  Different provinces have different policies in place for “wild and wonderful” off-label uses of agents on a case by case basis often based on, again, scientific evidence, cost analysis and benefit ratios.

The situation I am thinking of is when a person with a malignancy who has failed several treatments and wants to try yet another chemotherapeutic agent that is costly and with sparse evidence.  This person pays out of pocket for the first treatment and argues it is the responsibility of the government to pay for it.  The government cannot find sufficient evidence for the treatment and refuse to pay, even under special consideration.  The treating physician says there is some sparse evidence and supports the patient in taking the treatment, but notes the benefit is very small and possibly not worthwhile. They would not normally recommend it in this case, but are willing to administer it.  Should the government cover the cost of an agent that is expensive and has little potential benefit for one person?

Now, for the poll:

This is something that makes me feel torn.

I intentionally did not leave a middle of the road case-by-case basis answer just to try to polarize the results.

I am a big supporter of the scientific process.  I believe that evidence based medicine is important and that scientific research helps us to know the best treatments for people.  I also know that it can take years for medications to be approved, particularly for new uses.  And, in the case of rarer diseases, this can take even longer.  Offering medications off-label gives people an opportunity to get the potential or theoretical benefit before it becomes available, but that is not without risk of interactions or unforeseen complications.

The ways in which provinces choose drugs to be covered is sometimes a bit slow to acquire new drugs.  But, often, you can apply for approval if you can provide documentation that something will be of benefit to an individual.  The issue lies  as to what would be sufficient evidence and sufficient benefit.   As a practitioner, this gets frustrating.

A few months survival for one person may not be enough, but a few months for another could be a dream come true.  Sometimes a side effect is trivial to one, but not worth the cost for another.

How do we judge this?

And then there are the finances.  Chemotherapeutic agents cost thousands of dollars per dose.  Heath care funds are not endless.  The government pays for millions of dollars in treatments that save many lives.  But at some point, those treatments stop working.  And they stop giving them.  Sometimes, something new is tried again and again.  Usually, as a rule if something isn’t working, you stop.  There is no sense wasting time and money on something that doesn’t work.  But, what if you don’t know if it will work?  Do you start at all?

With budgets being tight and more expensive drugs on the market, we need to examine this issue more and more. There are obvious things to pay for, but at some point we need to make those difficult decisions.  How many months average increased survival do we pay for?  How much quality of life improvement can we provide?  How do we quantify that?

Provincial health care systems are trying to sort this out.

It seems unfair putting a price on the lives of people.  But, it also seems unfair to spend millions on someone who will die in a month regardless of intervention versus paying the same to buy a new ventilator to save many accident victims.

If there is a deficit in one place, where do you take the money from?  Cancer care already gets a fortune.  And it should.  An average of 500 Canadians are diagnosed with cancer daily.  Many people die from their cancer.  At what point do we say someone has had enough treatment?  That all the options are exhausted?  Sometimes the answer is simple.  Everyone is in agreement.  But what about when the patient thinks there are more things to try?  Or when drugs are available, but they are not affordable or of questionable benefit?  How far should we push it?

I lean towards the no side of the argument, although I really think it all should be on a case-by-case basis decided based on specific factors and criteria.

Maybe it is because I grew up in a social health care system.  Maybe it is because I am more okay with death and dying than the average person.  Maybe it is because I haven’t been through it personally.

I believe in having hope and trying to push for advancement and being involved with research.  I believe that people come before money, but I also believe in being fiscally responsible.

I think one can foster hope without creating false hope via medications or treatments that may or may not work and cause undue pain either financially, physically or to the system as a whole.   I think knowing the limitations of modern medicine and research is an important part of being a good clinician.  I think that knowing these limitations and offering reasonable treatments to patients is something that is paramount to giving good patient care.

If someone requests a treatment, I think it is good to look into it.  To obtain the evidence.  To investigate the patient’s reasoning.  I think if it is feasible, it is important to advocate for the patient.

The issue is that we do work in a system with finite resources.  As much as it would be delightful to have unlimited funds, we don’t have that option.  At least our patients don’t have to scrounge money for their first, second or even third/fourth line treatments.  We are so lucky to have that available to us.  At some point, money runs out.  At some point, cuts have to be made.  Sometimes, we have to say no to unnecessary tests, procedures and, yes, even chemotherapy.  We have to look at what benefits the majority when it comes to universal health coverage.  And those benefits need to be apparent, especially when expenditures are high.

I get that there is a bigger issue of the cost of the agents and how that is controlled overall.  Where do companies get off charging thousands of dollars for medications that can save lives?  But, I am talking about things as the costs are.

Sometimes agents aren’t covered and they are good options for the patient.  That is unfair, but there are sometimes compassionate programs.  It is simply that at some point we have to say no to something.

I believe that proven treatments should be covered.  The question was framed such that the benefit of the drug was unknown or minimal. Empiric evidence is key if you are trying to make unbiased decisions.   But sometimes drugs that do work aren’t covered because they are so pricey or there are cheaper options.  I take issue with this in that for some people in some circumstances they are necessary.

But again, sometimes we have to draw limits.  Hospitals can’t have a million MRI scanners even if the wait list is months long.  Similarly they can’t provide every drug because we want it.

I have talked about this with others before.  The argument is that if I were sick, I would want everything done too.  That I wouldn’t care how much it costs the government.

Maybe that is true.

Unfortunately, that is how most people feel.  And the world can’t work that way.

Plus, I have seen so many people lose so much for a maybe.  They lose the quality of life they once had.  They waste time with arguments and petitions and treatments when they could be spending time with family.  And maybe that is what they wanted.  Maybe they want to leave a legacy of making things better for others.  That is awesome.  But, I can’t help but wonder if sometimes, people should just listen to their physician.  Understand that things aren’t approved for a reason.  Accept the options available.

I can’t solve the problem.  I don’t know if there is a right answer.

I wish all drugs with proven benefit could be available free of charge for all people who are appropriate for them.  I even wish all people could access drugs for off label use if there is even a minimal theoretical benefit, if that is what they want to try.

The problem is we don’t live in a perfect world.  To be fair, we can’t just give everything away.  It isn’t Harvey’s, you can’t always get what you want.  And realistically, I think sometimes we forget how fortunate we are to be in a system where so much of our care is provided without asking a penny of the people receiving the care.

I agree with the provinces in having a hierarchy of drugs available in a certain order to help optimize treatments and minimize costs.  I also think there should be an appeals process for special cases.  The thing is, I think it is okay to say no to some cases.  People who want something because of one case study or something that is of high risk and minimal benefit shouldn’t always get something just because they want it.  I also think sometimes, we need to review what factors make that decision and that money is not the driving factor, but benefits and harms to the patient. Sometimes we should say yes because the short term cost can result in long term gains.

I don’t believe in putting a price on someone’s life, but I also don’t want to spend a fortune to do something that does nothing but satisfy an individual with minimal results.   We do need to be gate keepers both to protect the health care system as a whole, but also to optimize care for the individual.  There are limits in everything.  Sometimes the best thing we can do might be to say no.  Even if it feels terrible and looks terrible to the media.

This is going to continue to be a big issue in cancer care for years to come.  Many new, specific agents are being produced.  Times are exciting.  The thing is, these new, special agents come with high costs, sometimes high risks and data is often focused on a specific disease, meaning others will try to apply it elsewhere.  Such excellent advances come with big challenges and ethical dilemmas.

I know people won’t agree on this issue.  It is tough to say no to someone having something that might help.  But, it is also tough to spend millions that could help many others for the sake of a few.  I am glad it isn’t my job to make these decisions.  I am also nervous for a time when I might be faced with such a dilemma either personally or professionally.

Please share if you have had experiences in this area, if you agree, disagree or are as confused about the whole thing as I am.

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9 thoughts on “Mind the Gap: Denial of chemotherapy or protection of a system?

  1. Having been through cancer treatment, I can say that I would not want to do it again. But I know where I am going when I die, and I have made peace with that. I also have the “advantage” of having to pay for part of it. Funny how all of the sudden the super-expensive treatment with little known benefits isn’t so enticing when the bill comes to the patient. I really just don’t know why anyone would want to put themselves through chemo again and again. Maybe I just don’t have the thirst for life that they do. I wish more effort and money were being spent on preventative measures both before cancers with known causes and after. I am now taking metformin to prevent recurrence of the high grade glucose hungry tumor I had. Cheap medication, studies are looking good that metformin may help block high glucose tumors from what they need. Great thoughts in your post Trisha!

    • Thanks for giving the perspective as someone who has gone through chemo.
      Some people still will pay a lot of money for a chance. I think it is good to know how far you will go from that standpoint.
      Interesting about the metformin. Now I want to read up more on it. The whole thing makes sense. And it is great that metformin is such a cheap medication! I am so happy to hear things are going well!

  2. My neighbor (who happens to be wealthy) spent a fortune on specialized treatments for his 45 year old son with pancreatic cancer. He gave his son 5 more years of life. He could do it and I am always hopeful that someone somewhere learned something new from the treatments he received. He was in several clinical trials too. Pancreatic cancer is a really bad one with no screening tools.

    • Wow. It is fortunate that his son had that opportunity and did so well. 5 years is amazing for pancreatic cancer! Hopefully someone learned something new from him!

  3. This is great. It’s late here, and I’ve not been able to read what I am sure is a good and illuminating argument. However, as one working in a setting with extreme resource scarcity, resource allocation was probably the first ethical dilemma I ever encountered in hospital. And it’s awful. And I hate it. I wish every person could have access to any medicine that may help them. But I know that in reality, it just is not affordable. It drives me nuts every time.

    • We are so fortunate to have the resources we do here. It is sad when sometimes costs prevent even seemingly simple things from being offered. I also think it is sad when people feel entitled just because we live in a system that can provide the basic things.

  4. I too am a cancer survivor – and in fact started writing a blog to help sharpen my mind, which has been dulled by chemo brain. I recognize the costs of treatment, but I also recognize the value of being a live. If it weren’t for trying a couple of different protocols, I would not have been alive to write this, http://wp.me/p2zSNO-1O

    • It is so awesome that you are able to write that post!
      You’re right, sometimes it does take a few different protocols to get things working. And once they do, it is awesome (even though going through the treatments can be terrible)!

  5. Pingback: The State of the State | Beyond Beauty Tips

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