Ethics of donating money to cure common diseases

Great Debates
1

Recently, the gym I go to had a promotion asking for donations for a cure for amyotrophic lateral sclerosis (ALS, aka Lou Gehrig’s Disease), and good on them. ALS is a horrible fate, and any humane person would like to see it cured.

However, sentiments to donate to such causes date from a time when medicine was run less as a business than it is today.

It’s conceiveable that today, such a cure would involve research into new drugs, and the drug companies have some pretty mercenary policies about research costs.

I can sort of understand an exception in the case of relatively rare diseases like ALS: there might never be sufficient profit. (And I’m definitely not talking here about donating money to help people with crushing medical bills).

But I see lots of solicitations for donations to find cures for cancer and diabetes. These are very common diseases, and any cures would, I expect, generate fabulous profits.

I don’t mean to sound harsh, but I would bet that a lot of the people who donate to such causes haven’t thought about this: they are likely responding to sentiments formed in a time when medicine was less corporate-run than it is today. And I wouldn’t be surprised if hearing about people being crushed by medical costs acts for some as a motivator to donate.

Imagine if Steve Jobs called you up and asked for donations to help him develop more and better technology. I hope you’d laugh in his face.

Or imagine if you donated money for a cure that you later needed but were refused access to because you couldn’t afford it.

I donate a lot of money to help needy people; please don’t help me turn cynical by disguising corporate welfare as charity.

I guess the debate here is: are such solicitations for charity to find cures for common diseases at best, well-meaning but misguided? And at worst, dishonest manipulation?

Or are they still worthy causes?

2

There’s a profit motive in curing rarer diseases as well. Governments offer incentives for that, and the process of drug research - even for common diseases -is heavily subsidized . And then there are grant funds for researchers and things. The bottom line, I think, is that this stuff has the potential to save lives, and time is of the essence. iPods are fun and everything, but they don’t do that, even making exceptions for unknown consequences from the technologies.

3

What makes more profit?

Curing the disease or treating the symptoms (for an extended period of time)?

4

I missed the edit window but I wanted to add that this also gets at the nature of giving. Drug companies don’t work for free, and neither do scientists or many others. If a cancer treatment makes billions for a drug company, is that less good? Why?

The drug companies do get involved in promoting the awareness of diseases because it can increase their sales, but it’s not like they’re asking you to give the money straight to them.

5

It depends on what that company does with those billions in profits.

If one company has a CEO that made $100 million last year, and another has a CEO that made one million, I’m more inclined to believe that my donations would make a difference in helping the second company do things to find the cure (like using more of those billions to hire more scientists).

6

And the first part of your reply sort of answers my query: if government is already involved, I’m more inclined to participate by donating.

7

This is a problem I have with the many “donate for the cure” type charities. First, it isn’t clear where the money goes. Secondly, if a cure is found I know I’m not going to get a discount. We are basically paying some doctors/researchers/who-knows to do their jobs (fair enough) then, if they find anything, we are paying them whatever they want for the cure (seems unfair.)

The drug companies and researchers aren’t necessarily going to look into a disease that I might think is important, hence the publicity and awareness and money raising are crucial if my favorite disease isn’t getting as much attention as I think it should. That’s just how it goes. It’s like lobbying. I doubt that a lot of the donated money makes it to someone actually researching a particular disease but it’s a sure bet that if nobody tries that disease isn’t going to be cured.

8

Then you’re in luck, because the government is heavily involved in this stuff.

9

Curing it, definitely. If you’ve got two companies, one with a cure and the other with a long-term treatment, the company with the long-term treatment won’t make any profit at all.

The reason we have so many non-cure treatments isn’t because the drug companies are deliberately holding back; it’s because cures are hard, and in many cases, we haven’t figured out how to do it yet. Nonetheless, there are quite a number of diseases that we can cure (including, for instance, almost everything bacterial, as well as, often, many kinds of cancer), and in those cases, we do.

10

I really don’t know. I know with mental health some groups I have donated to send me newsletters about studies showing XYZ is effective for disorder ABC. But pharmacology is just one of many avenues they look at for treatment.

If you are donating and the only thing that happens is the money funds R&D scientists who eventually give the patent to a pharma company that overcharges for it, then yeah I can see the criticism. It is like Steve Jobs asking for donations to make the next gen iPod.

But my impression is that when people look for cures and treatments (at least in mental health, I can speak for other areas) they look at a variety of areas other than pharmacology. Cognitive exercises, surgery, implants, social interventions, etc.

11

I have two issues with donating to disease research.

  1. Money does not equal results. How many years have there been races for the boobies? And yet breast cancer still exists. While money is needed for research, there reaches a point where money isn’t the limiting factor. Once you hit that point, and I think cancer has, then throwing more money at it won’t help in the slightest.

  2. I would prefer disease research to be based on actual numbers and facts rather than emotion. Sure, ALS is horrible. But so are many diseases that affect far more people. If we have limited resources, I want them to be focused on what can help the most rather than which one has the saddest photos to tug at heartstrings.

12

The ethics of medical research should be simple:

a. How many people can we give significantly better, longer and/or more productive lives?

b. It seems likely to me (but I’m not a medical researcher) that common diseases and afflictions are very roughly as hard to find a cure for as uncommon ones.

From a. and b., it should be obvious that in theory, curing common and dangerous diseases should get priority.

The question gets more complicated when trying to determine which research is more effectively stimulated by some (probably relatively small) amount of additional money. But potential company profits have only indirect effects on that.

13

But that’s a very different situation from medical research. Steve Jobs isn’t trying to alleviate terrible suffering and heartbreak.

Well, wait, I used to have Windows at home. Bad example. He actually is alleviating terrible suffering.

Still, the kind of suffering that medical research has the potential to fix is an entirely different kind of motivation. Many people have donated after watching someone they love being devastated by disease.

I do think the drug companies make unseemly profits sometimes. There have been, from time to time, efforts aimed at altering the profit motive. For example, there are programs to encourage work on orphan diseases, and programs to encourage the manufacture of vaccines (which often don’t generate much profit but create large possible liabilities). I think this is the kind of thing that is more useful if we want to improve the system.

14

Do you not realize how much treatment for breast cancer has improved over the years? Yes, there might be a point where you run into the law of diminishing returns, and I also have issues with the way they spend their money, but breast cancer charities have been very successful.

You’re very wrong. Cancer research is still evolving along with our understanding of cancer. There are very effective treatments for some forms of cancer, but for others, there’s little or nothing. There are still questions about the best way to study new treatments. I’m not sure how you think that’s going to happen without money.

I understand your reasoning, and I know people here don’t think much of anecdotes. But people dying of heart disease don’t suffer any less than people dying of rare illnesses. That’s also a fact. They need help, too, and when it comes to matters of funding, they arguably need more help because it’s more difficult for them to draw attention in the first place. I might not want emotion to guide federal spending but it’s entirely valid to invoke and involve emotion in making decisions about charitable donations.

15

Why not donate your spare computer cycles to something like the World Community Grid. They do mostly medical research and drug discovery using computer algorithms run on personal computers all over the world. The spare cycles aren’t exactly at no cost to you since it will bump your electricity bill, but for a single machine that is only used for a few hours per day, I doubt you would notice.

There are also programs like Folding@Home that do even more basic research into the structure of proteins and how they are folded into their active forms.

16

But if instead they are the same company, they can patent the cure and refuse to sell it, and profit for years from the long term treatment while using the patent to prevent anyone else from selling a cure. And your argument also presumes that anyone is looking for a cure. I know I’ve heard pharmaceutical corporate officials comment in the past that of course they have no interest in looking for cures or vaccines.

17

I can think of at least three reasons this wouldn’t work as a strategy. The first is this: how can it be better to be one of four or eight or 15 companies selling a treatment instead of the one selling the cure? The second is that it’s a waste of money: you have to spend money on the drug to know it’s a cure. If you then decide not to sell it (and ignore the outcry from your decision to sit on a potential cure), you’ve flushed that money down the drain. To really know you have a cure on your hands, you need to test it on people, which means you’re talking about a lot of money, red tape, and results that will likely be public. And the third reason is that patents don’t last forever. Patents are filed when a drug is discovered - long before it is tested on anyone - not when the company starts selling it. If you’re the drug company that develops a cure and you decide not to bring it to market, eventually your patent runs out and somebody else can do what you decided not to do. In which case you’re now the company Chronos described, trying to sell a treatment when someone else is marketing the cure.

Drug companies are not the only people who do research. You don’t think researchers at university laboratories want to be remembered as the next Salk?

The first HPV vaccine was approved just a few years ago, you know. If you think drug companies aren’t interested in vaccines, you’ll have to explain why they’re making them. Not all of them are major players in the vaccine market, but there are several big ones. They wouldn’t do it if they were losing money on the deal. And some of them do think vaccines are the way to go.

18

You answer your own question; they profit off of research they’d never do themselves.

19

Some of them are doing the research. It’s not like laboratories do the hard work and then just turn the results over to drug companies so they can make billions from it. And why wouldn’t they do the research themselves? I don’t know where you got this “we’re not interested in vaccines” thing, but vaccines for common diseases like the flu are still getting made. Flu vaccines are made by relatively few companies, which became a problem last year, and they don’t cost as much as a lot of other drugs do, but they haven’t been abandoned. A lot of people use them, so it’s not like there is no money to be made. Certainly the HPV vaccines are a big deal for the companies that make them.

I think your reasoning about cures and vaccines being unprofitable is simplistic but it’s not totally wrong in that there are reasons it sometimes looks like drug companies are behaving that way. They’re run for profit and everybody demands growth. They’ll often focus on making a new drug that is 5 percent better than an old one or that matches something a competitor is doing instead of perhaps taking a bigger risk and developing something more innovative.

20

But fundamentally all those treatments involve pharmacology and the presentation of new drugs to the market which are covered by patents.

There are likely tons of treatments which are not pharmacology based for various illnesses. I can’t speak for all illnesses, but I know in mental health there are studies on cognitive exercises, cheap off patent drugs, non-patented supplements, physical exercises, etc. So the profit motive can do damage because any treatment which isn’t profitable isn’t even taken into consideration.

Medical R&D needs to be more heavily publicly financed and done for the good of human health. I think right now it is about $40 billion public, $60 billion private.