When the Patient Is a Gold Mine: The Trouble with Rare-Disease Drugs
bloomberg.com
bloomberg.com
There is a tendency to believe that the normal dynamics of markets should be suspended when the product is "really important." Of course, that's backward. When the product is really important, the worst thing you can do is turn it into a low-profit economic ghetto by reducing incentives to invest. At the same time, when the government takes over the role of the market by granting a temporary monopoly, there clearly has to be some backstop at work.
The interesting thing to note that the company in the article, Alexion, is not even an unusually lucrative company. In 2015 its operating income was $536 million on 2.6 billion of revenue, or about a 20% operating profit margin. For comparison, Alphabet's operating margin is over 25%. Google also does much better in terms of return on equity and revenue per employee metrics.
There are always ways to sneakily increase costs. And I'm not going to lose sleep at night, since I am putting those funds back into "improving society".
There is no indication that direct-to-consumer advertising of drugs improves health outcomes. It does, however, greatly increase the cost of medication. Since the marginal cost of producing more drugs is low, advertising, even at a positive RoI, leads to increased prices.
But, marketing is where my support starts to peter out. It seems crazy that marketing takes up such a large percentage of expenditure, it's not only wasteful but also introduces perverse incentives. I really think it would be great if trade deals could establish not just concessions like mandated strong intellectual property laws or restricted bulk negotiation, but also serious limitations on the other side of the coin, on something like pharma marketing.
If deep trade deals are justified by shaping the market to be at its most productive, I don't mind if that increases profits most of the time, but occasionally there will be measures that will improve the market but also reduce short term profit for some existing major players.
In practice, under the current situation the market is structured so that a profitable pharma company has to be good at generating demand, just as much as meeting a need. A company that can do the latter but not the former will go bust.
I think a world with more emphasis on judgements made by clinical research organizations (private or public) like NICE or the Cochrane Foundation rather than TV adverts, wine-ing and dining, and the nag factor on patients and overworked individual practitioners, would end up with a drastically more effective market for actually finding cures.
How much do drug companies spend on marketing? I've only ever seen article mention SG&A which is an accounting catch all for more than just marketing.
https://en.wikipedia.org/wiki/Prizes_as_an_alternative_to_pa...
Now a sales rep was on the other end of Owens’s phone from Alexion Pharmaceuticals Inc., the New Haven-based maker of Soliris—one of the world’s most expensive drugs, typically priced from $500,000 to $700,000 a year.
The rep was calling to argue with the treatment plan. She pressured Owens to continue Soliris treatments, ticking off detailed information about the mother’s organs that the doctor hadn’t shared with the drugmaker. “How did you know that?” Owens remembers thinking. She was monitoring the patient’s condition with seven hematologists and wasn’t swayed by the Alexion rep. “I was really taken aback by how bold and brash she was,” Owens says. “I’ve never had an experience like that—before or since.”
There was recently a discussion here about a new drug for ALS and when reading about it I took note of the line in the FAQ that mentions that anyone with a prescription can call the pharma company up and get a case manager to help explore their coverage and setup copay reimbursement ("Searchlight Support").
http://web.alsa.org/site/PageNavigator/alsa_radicava_faq.htm...
That's not exactly marketing, but it isn't really terrific that manufacturers are setting prices so high that they can spend significant resources helping people use their insurance.
I would imagine something in that billion dollars is marketing...
Do you have an citations to back that up? Because I do. And it's from the FDA.[1] I'll spare copying it all down and just leave these takeaways:
- FDA research, of patients who visited their doctors because of an ad they saw, and who asked about that prescription drug by brand name, 87 percent actually had the condition the drug treats. And in 6 percent of those DTC-generated visits, a previously undiagnosed condition was discovered.
- Only 7 percent of doctors said they felt "very pressured to prescribe" a particular advertised drug.
- According to the FDA study, a majority of doctors feel that DTC advertising increases patient awareness and involvement, improves compliance, and enhances the overall doctor-patient relationship.
[1]https://www.fda.gov/drugs/resourcesforyou/consumers/ucm14356...
Here's some more recent data (also not super scientific, but probably a decent representation of most physician attitudes today): http://www.mmm-online.com/campaigns/what-doctors-have-to-say...
I've not seen the argument that they should be suspended as much as that they are. "Really important" just means that demand is inelastic.
...what. 20% margin isn't good nowadays? And why on earth are we comparing this company to a tech giant, they're not in the same world when it comes to how they operate. Of course google's going to look better in a lot of these terms, it's google (and i'd argue a monopoly). I mean at what point do we say, actually these biotech companies are plenty profitable? There's so much handwringing about how if we hurt these companies in anyway then all these sick people will die. It's just not true. Why don't we take the S&P 500, a Biotech Index and ALXN and put them on a chart:
https://www.google.com/finance?chdnp=1&chdd=1&chds=1&chdv=1&...
Well damn, looks like despite all their huge R&D costs, only 20% margins, so on and so on they are doing pretty damn well. Honestly, are we looking at the same chart? These companies are MILKING sick people and we're afraid to intervene. Markets don't work in life and death scenarios because people would pay anything. This is a case that begs for regulation and even with it these companies are going to be just fine.
Over time, would limiting the potential profits in life-saving drugs increase or decrease the number of life-saving drugs developed?
In an economy where people can choose to work in any field, and investors can choose to invest their money in any field - what better way is there to allocate the people and money resources than by letting people voice how valuable something is with their wallets? Do you want to force someone to buy a third car instead of buying a new drug treatment?
If you understand the invisible hand theory (actually understand it, not just the everyman's definition) I think it's difficult to (a) argue against in general and (b) argue against for certain life-saving industries especially.
I urge urge urge you to reevaluate your understanding of economics as well. I recently made a book recommendation on here, I'd like to make it again.
23 Things They Don't Tell You About Capitalism by Ha-Joon Chang
Economism by James Kwak
And no it's not at all hard to argue against the invisible hand theory although I'd really like to not do that here. But just consider how far physics has advanced since the 18th century, why don't you think economics has done the same? Just think about what you're actually proposing for a second. There are no scenarios where the invisible hand works against laypeople? I think that's incredibly naive.
Actually, if you believe economics hasn't changed since the 18th century you really should read it. Who knows, maybe you'll even reevaluate your understanding of economics.
Also, your claim that economics hasn't advanced since the 18th century is absurd and betrays an ignorance of the subject.
Perhaps it was worded poorly but if you reread you can actually see that's the opposite of what I said.
Ask anyone trying to buy a house in Vancouver.
Does Mankiw mention this in his "requirement for informed criticism"?
Are you honestly asking whether Mankiw discusses supply/demand price effects in his textbook?
There are a few subjects where the average HN denizen thinks they know more than the professionals by having read a mainstream book or two. Economics is one. You can identify these people when they ask, 'How come economists couldn't predict the crisis?'
https://www.bloomberg.com/view/articles/2015-11-24/most-of-w...
As to your link, Noah (whom I respect tremendously) does make a good point, but I think he overstates his case; true, simple supply-demand models don't work in every case (and the minimum wage is a good example of that, although I would counter that most of the non econ101 parts are somewhat short term and restricted to small increases) but for the vast, vast majority of cases people encounter in real life they work surprisingly well. Additionally, supply and demand is only a part of econ 101: Why can't I get tickets to Hamilton without paying a lot? Why do some restaurants charge more for dinner? If we put a tariff on Mexico, who pays? What are the pros and cons of free trade? What does deadweight loss mean? What does the federal reserve do and how does it affect me? What's the relationship between the money supply and inflation? What are the arguments for targeting non zero inflation? Why did we leave the gold standard? Is government debt bad? How is GDP measured? Why does the exchange rate change? Why doesn't the employment rate go to zero? What does the employment rate even mean? How do taxes affect the economy? Do different taxes have different effects? What are the arguments for and against using tax policy to encourage saving? What options does the government have to fight a recession? My city wants to reduce driving downtown, what are some possible policies? What economic policies can we use to fight global warming? What are the arguments for and against rent control? What is a monopoly? All of these questions are easily answered with macroecon 101 level knowledge and most are hard to answer without (we haven't even started talking about micro!) That doesn't mean econ 101 is always applicable, but it does mean you'll have a far better understanding of the world after taking it, even if you do come in with some preconceived notions.
I will say that Noah's suggestion that econ 101 should be more emperical is a good idea, and I especially believe that there should be a stronger emphasis on stats. I actually think that's true of all the social sciences though, and its a separate issue from what you're talking about.
I don't believe it counts for much but I do have an B.S. in Econ which is to say I have crawled through Macro 101 books and 102 and 200 and so on so I'm aware of what's in Mankiw's book. I would also say that I have no idea of your economics education and I'm not trying to measure dicks here. You may well know more than me, my argument is purely about how to get laypeople to better understand a field I love.
>All of these questions are easily answered with macroecon 101 level knowledge
No! Absolutely not.
>Is government debt bad? ... How do taxes affect the economy? Do different taxes have different effects? What are the arguments for and against using tax policy to encourage saving?
Specifically these questions, the ones in your list that are most likely to come up in casual political conversation are not answered by Econ 101. And other incredibly common political topics like antitrust, minimum wage, other tax questions, wage gaps, welfare, international trade will get no meaningful answer from 101.
Economics is the one field of study in America today where someone who reads three blog posts thinks they're an expert, someone who reads one book, and so on and so on (NOTE: I am also not claiming at all to be an expert. I actually believe that undergrad econ is, unfortunately, a waste of time). My point in encouraging my books (I'm not sure I have the correct language for the point I'm trying to make here so forgive me) is not to make a positive correction and "get people to actually understand economics now" because it's not that simple and frankly 99.9% of people will never understand it because they'll never put in the time to. My books are to encourage a negative correction where people are willing to say "I don't understand economics" just like they'll admit they don't understand programming or physics or psychiatry or anything else. Because there's a lot of people that don't know dick about econ and they're unwilling to admit it. People need to be exposed to complex market failure after complex market failure after complex market failure so they understand the simplified understanding they gained in Business Economics or mises.org is not the real world. Noah doesn't overstate his case he states it exactly right (and much better than I have here).
That being said, if you haven't read Mankiw you really should. He goes into far more detail than you seem to think, on many of the exact subjects you listed. Maybe econ101 has progressed since you last took it.
> Economics is the one field of study in America today where someone who reads three blog posts thinks they're an expert
Ha. It's funny how many fields think this way. A friend of mine who's an MD in sports medicine says the same thing ("People read one exercise book and think they know everything!"). Another friend of mine says the same thing about law. Another says the same about foreign policy. Etc, etc, etc.
If your goal is to get people to people to stop pretending like they know econ after reading one pop-economics book, well I don't know what to tell you except that in all likelihood human nature isn't going to change; people have been overconfident about things they don't know "dick" about since the beginning of human history and probably will continue to do so regardless of whether they read your books or not.
By the way, if you really believe that exposure to "complex market failure after complex market failure" is really the answer, there's plenty of places on the internet that do just that. Go to /r/latestagecapitalism or /r/socialism and observe all the nuance and humility that results. In reality, people just as readily end up overconfident in the opposite direction.
That'd be nice on an island. Otherwise, have fun competing against technology behemoths from other nations, some receiving subsidization from the government.
I think where we disagree is that I don't think I (or anyone else) knows how much resources society should spend on drug treatments. I strongly believe that the best way to determine how much money society should spend on drug treatments is just to let all the individuals decide how much they should spend on drug treatments (or insurance which covers drug treatments). (This is not saying, however, that you can't have transfer programs which transfer wealth from rich->poor)
In the end, the failures of central planned economies are the same as the failures of central planned sectors, including healthcare.
When people think of a photo sharing app they are thinking of breezy fun social media times. When people think of rare disease treatments the sentiment is much darker a priori. I'm not saying drug companies are to blame for the current situation (hate the game not the player), but emotionally it's obvious why there is judgement about profiting from that situation.
Affordability is then about transferring money from rich people to poor people so they can buy the appropriately-priced drug.
A common problem with these arguments is the assumption that they take something from the rich. The reality is the cycle started earlier, and redistribution is a necessary correction to that, not an outrageous and immoral imposition on a presumed natural order.
In most of these cases, they've sold something for billions to a single entity that has the money and doesn't strictly need it (for example, if Youtube had not sold to Google it would have been an existential crisis for Youtube, not for Google).
When you save 10 lives and charge billions you are a criminal.
In these ten sales, you've made billions by charging each of the individuals 1/10th of the billions, individuals who don't have the money and do strictly need it.
There's a difference between "sells for billions" and "charges billions": in the former in the case of photo sharing apps, it's a buyer's market, and in the later it's a seller's market.
The founders, the sellers, might get praised in the event of a billion dollar photo sharing app sale, but few have sympathy for the purchasing party in that transaction, no matter what they paid, because it's a buyer's market.
I'm not sure fair, to the drug makers or otherwise, enters into it. These are not really that comparable, and only appear to be due to the scale of the sales both being "billions".
This is work that should be done for public benefit by public benefit organizations.
In other words, universities should be where this kind of treatment is developed and tested, AND the regulations that make normal drugs so expensive should apply differently (and relate heavily to a LOT MORE public disclosure and real peer review).
We all believe it's important to save lives.
If it costs $300k to save one life, but in other disciplines or other areas of medicine you can save a life for $5k, then you have a problem that is not solved by simply ignoring money.
Maybe a socialized or non-profit R&D program would do better than big biotech companies, but before we legislate this idea, how about we test it? My concern is that a non-profit/gov't drug development program will work as well as the ACA's $2B website.
I get hives whenever someone suggests pharma companies are "too" profitable. My daughter is alive today because these "greedy" pharma companies have developed chemotherapies that beat leukemia 90+% of the time. A 20% margin for these companies that regularly produce miracle drugs seems totally fair. Pharma is the closest thing we have to magic in the modern world.
I'm open to the idea there are better possible systems, but the burden of proof is on your side, not the side that regularly cranks out life-saving medicines like the goose that lays the golden eggs.
Without the US healthcare system, my treatment simply would not exist. My treatment exists in no other country in the world.
Eventually, those that don't have insurance as good as mine will benefit from these drugs once the patent expires. It sucks that many people won't benefit until that happens, but under the alternative system SJWs are so keen to promote my treatment would never have been developed and I couldn't get this treatment at any price and no one in the future would get it either because their wouldn't be a treatment for a patent to expire on.
At the end of the day, the US is practicing "socialist" healthcare. It's socialist in the sense that it pays for a lot of the R&D that the rest of the world benefits from. 40% of the entire output of medical research globally comes from the US alone.
Money is just a proxy for goods and services; in this case a proxy for having a bunch of highly skilled scientists and doctors work for years to treat a disease only a small group of people have. Having a public benefit corporation rather than a private company doesn't fundamentally change that dynamic.
As to regulations: at bottom, all they really require you to prove is safety and efficacy. If there was a cheap way to prove safety and efficacy, drug companies would just do that on the front end, and send only working drugs through the clinical process. But most drugs don't actually work; most actually fail clinical testing, many after they've made it pretty far along. If you get rid of that testing, and the safety and efficacy data that comes from it, what exactly do you disclose to the public?
Here's hoping someone else can investigate and share the exact number. I'm at a stoplight.
It's also worth noting that a large proportion of the basic research that goes into making these drugs is funded by the federal government or other research foundations, which receive little, if any of the benefits when commercialized. For instance, Alexion's drug is based to some extent on research conducted at Yale by its former CEO, not to mention the whole host of foundational research that preceded it.
R&D management sure as hell looks at the potential returns generated. I've been on projects where the company said "we're going to spend out $500M in R&D funds on this disease because we might actually make our money back. The other disease is off the table since we can't even break-even."
Yes, a lot of basic research is funded by the gov't, but that's minuscule compared to the funding the companies themselves put in. I sat in a meeting when a decision was made to move a promising compound forward. The investment? $400M for all activities post-phase 3. The NIH grants that supported the discovery? Maybe a few million?
You contradict yourself here.
The normal dynamics of markets have been suspended in order to ensure that "really important" products make it to market. That occurs through government-granted monopolies on drugs along with subsidies and grants on research. And that is what props up the market and provides the "incentive to invest" you insist is needed.
So you can argue for "normal dynamics" -- which would be a more free market with no government-granted monopolies, subsidies or research grants -- or you can argue to preserve "incentive to invest". But you can't have your cake and eat it, too, and the fact that you don't seem to consider how much we already do to meddle with the market in order to make sure "important" products are available is slightly worrying.
Consider prizes instead of patents: https://en.wikipedia.org/wiki/Prizes_as_an_alternative_to_pa...
We don't need to have a government enforced monopoly to support high prices to fund drug development. There are other ways that don't turn it into an economic ghetto either.
I intensely dislike the way pharma companies "buy" the opinions of prominent doctors and get them to sell their drugs for them. There are many similarly unethical things that the pharma companies do, but having made a drug that seems to help patients, and then charging as much as they can for the limited time that they can does not seem unreasonable.
This econtalk episode [2] on "price gouging" seems particularly relevant, it's really very entertaining (and educational)
[1] https://en.wikipedia.org/wiki/Generic_pharmaceutical_price_d...
[2] http://www.econtalk.org/archives/2007/01/munger_on_price_1.h...
- Paying someone to monitor progress
- Insurance against the possibility that the drug seriously harms them
- Administration for communicating with them
- Advertising of the trial to recruit them
- Paying them cash directly for their troubles
That being said, other companies in countries that don't honor patents definitely do this very thing for chemotherapies and the like.
But here is what I think about these high priced drugs:
Joe was a successful lawyer, but as he got older he was increasingly hampered by incredible headaches. When his career and love life started to suffer, he sought medical help. After being referred from one specialist to another, he finally came across an old country doctor who solved the problem.
"The good news is I can cure your headaches... the bad news is that it will require castration." You have a very rare condition which causes your testicles to press up against the base of your spine and the pressure creates one hell of a headache. The only way to relieve the pressure is to remove the testicles."
Joe was shocked and depressed. He woundered if he had anything to live for. He couldn't concentrate long enough to answer, but decided he had no choice but to go under the knife. When he left the hospital he was without a headache for the first time in 20 years, but he felt like he was missing an important part of himself.
As he walked down the street, he realized that he felt like a different person. He could make a new beginning and live a new life. He saw a men's clothing store and thought, "that's what I need .. a new suit."
He entered the shop and told the salesman, "I'd like a new suit." The elderly tailor eyed him briefly and said, "Let's see... size 42 long." Joe laughed, "That's right, how did you know?" "Been in business 60 years!" Joe tried on the suit. It fit perfectly. As Joe admired himself in the mirror, the salesman asked, "how about a new shirt?" Joe thought for a moment and then said "sure..." The salesman eyed Joe and said "let's see...34 sleeves and...16 and a half neck." Joe was suprised, "that's right, how did you know?" "Been in the business 60 years" Joe tried one the shirt, and it fit perfectly. As Joe adjusted the collar in the mirror, the salesman asked "how about some new shoes?" Joe was on a roll and said "sure!"
The salesman eyed Joe's feet and said "Let's see... 10-1/2...E." Joe said astonished, "that's right, how did you know?" "Been in business 60 years!" Joe tried on the shoes and they fit perfectly. Joe walked comfortably around the shop and the salesman asked "how about some new underwear?" Joe thought for a second and said, "sure!" The salesman stepped back, eyed Joe's waist and said "Let's see... size 36."
Joe laughed, "Ah ha! I got you I've worn a size 34 since I was 18 years old." "The salesman shook his head, "you can't wear a size 34, it will press your testicles up against the base of your spine and give you one hell of a headache."
In a nutshell, people with CF misprocess fats, wind up excessively acid and wind up with serious malnutrition. I got very picky about the fats I consume, aggressively addressed the nutrient deficiencies until my body worked more normally, and I eat a diet that compensates for my body's tendency to become way too acid.
I also avoid chemicals that bother me, avoid exposure to germs, etc.
I look fairly ordinary these days. It isn't obvious to other people that my entire life revolves around this. It is sort of like being a kosher Jew who eats only approved foods and so forth.
Because of people like you treating me like absolute shit on CF lists, I left all of them some years back. Then someone with classical CF in their 30s whose number was up tracked me down because they didn't want to die. They follow my blog and private message me occasionally and thank me profusely for helping them get healthier (instead of, you know, DYING).
So, like, that's just your opinion, man.
But the only intervention that's lifestyle-y that I know of is chest physiotherapy. I'm glad that the person you found now feels better, but the data does not support your claim.
Despite various publications of results where hand washing reduced mortality to below 1%, Semmelweis's observations conflicted with the established scientific and medical opinions of the time and his ideas were rejected by the medical community. Semmelweis could offer no acceptable scientific explanation for his findings, and some doctors were offended at the suggestion that they should wash their hands. Semmelweis's practice earned widespread acceptance only years after his death, when Louis Pasteur confirmed the germ theory and Joseph Lister, acting on the French microbiologist's research, practiced and operated, using hygienic methods, with great success. In 1865, Semmelweis was committed to an asylum, where he died at age 47 of pyaemia, after being beaten by the guards, only 14 days after he was committed.
https://en.wikipedia.org/wiki/Ignaz_Semmelweis
Hand washing. What a silly idea. Let's just put this guy in a loony bin for how completely insane he is.
Edit: Also, the person found me. I didn't find them.
Poppycock. The Wikipedia page lists a small handful of promising technologies[0], and there are others not listed there: improvements in organ transplantation and/or cloning would do wonders. I'm particularly fond of the idea of synthetic chloride channels that do the work of the CFTR protein.
But the reason that cystic fibrosis is lethal is because of the mucous. The lethality of the mucous is unrelated to your lifestyle choices, since the lungs of a CF patient are colonized by bacteria that prefer the different type of mucous. This sort of thing is exacerbated by fraternizing with other people who have CF, since they're likely to infect one another.
Over time, the bacteria become resistant to the antibiotics used to treat the disease. So more antibiotics are definitely in order, although that's not the be-all end-all. Again, I'm just saying that lifestyle interventions are almost certainly not effective (I can't even see how).
But there's a critical point in here: sure, Ignaz Semmelweis was laughed at for positing an unusual theory. But so were tens of thousands of others who came up with actually crazy ideas, too many to list. All I'm saying is, just because people disagree with you doesn't mean they're wrong.
All I'm saying is, just because people disagree with you doesn't mean they're wrong.
And all I am saying is I have heard this kind of dismissive crap from the "peanut gallery" before. It isn't anything new or novel for people to treat me in a completely disrespectful, dismissive fashion.
So if that is all you have to bring to this discussion, then I think I am done. Because it isn't a good faith tactic At All and I have wasted enough of my life on assholes on the internet who are sure that I am crazy because REASONS, none of which are at all actually logical or scientific, though that is what they are typically claiming as justification for just crapping all over me gratuitously.
Your assertion that it can't be done and that I merely have a milder form of CF are simply ways of dismissing the idea and they aren't anything I haven't heard before. If being contemptuous of me personally and dismissive of 16 years of my life isn't your intent and you are genuinely curious, you are utterly failing to communicate that.
Edit: Nevermind, you said it involved dietary change to handle acidosis. That's great, but is it related to the bacterial problem?
I am an environmental studies major, so it sort of stood out to me that some of the infections that people with CF get that normal people are not typically vulnerable to are microbes used to clean up petroleum spills. I came to believe that CF predisposes people to hanging onto certain kinds of chemicals and this makes our tissues vulnerable to infections that normal humans don't typically experience as dangerous pathogens.
Giving up my car helps protect me from exposure to gas fumes and plastic off gassing, but it also means I walk a helluva lot. Walking does a great many good things for the body. You breathe better while walking and it moves lymph, which is how the body cleans its tissues.
Freelancing instead of having a corporate job helps protect me from exposure to germs and gives me a higher degree of control over my environment.
I have done a whole lot of other things, but those are a few that are, I think, easily explained and the value should be easy enough to grasp.
I have run some of my thoughts past a man with a PhD in Chemistry and another man with a PhD in Biology was kind enough to answer some questions for me. He indicated that given what the CFTR does, my thought that people with CF misprocess certain chemicals, including metals, is not simply nuts.
Sorry, I missed this earlier.
If you look up studies on biofilm, there is a connection between acidosis (and/or inflammation) and antibiotic resistance. Reversing excess acidity leads to patients becoming sensitive again to a larger variety of drugs.
But there is a lot more to my dietary changes than that. Mucus is a really significant part of the immune function and people with CF have very salty sweat. My view is that sweating out salt at high rates also drags other minerals with it.
The standard wisdom is that people with CF "overproduce mucus" and are "drowning in their own mucus." One study found that we underproduce mucus and I believe this is the accurate interpretation for reasons I have outlined somewhere on my blog. I can find it if you really want to see it.
Salt is a major component of mucus and when you get people with CF producing proper and healthy amounts of mucus, it reinstates a portion of their immune system that is typically down. I consumed a particular brand of salt high in other minerals for some years. It had a significant positive impact on my health. I also lived near the ocean for a few years. There is a non drug CF treatment where they nebulize saline solution. It grew out of the observation that people with CF who surfed had better outcomes.
CF is not really just a lung disease. That is sort of a misconception. It involves all the mucous membrane systems, including the gut and the reproductive tract. Malabsorption, difficulty gaining weight and Cystic Fibrosis Related Diabetes are major elements. Men with CF usually lack a vas deferens, thus are unable to father a child without intervention. Women often also have fertility issues.
The gut is about 70 percent of the immune system. So addressing the gut issues in CF is part of addressing the immune system dysfunction.
The gut gets incredibly out of whack with CF. The high use of antibiotics in patients with CF very often leads to e coli infections. This is often treated by removing the large colon. This is, horrifyingly enough, one of the more common surgeries in the CF community. There is a reason it is called a Dread Disease, and it isn't just what it does to your lungs.
I have also read up on some of the current research into the gut flora. I think the terrible state of the gut and the gut flora is a really major element of the immune problems in CF.
You might be interested in the articles on stunting linked in this post on my blog: http://miceats.blogspot.com/2016/09/jalapeno-with-pepperoni-...
The blog isn't intended to be easily legible to an outsider as a serious work on the immune system. There are two reasons for that. I have been harassed by too many people, so I don't want to position it as a medical blog. It is intentionally framed as a food blog. Second, I want it to be approachable by lay people.
The general format is to talk about I have x issue, I am choosing to eat y food for z reasons. I don't always manage to explain my reasons in every post, in part because it gets very, very repetitive. I eat many of the same things over and over for weeks or months for the same reasons. So, the back story on my thinking is very scattered throughout the blog and hard to find. That is partly on purpose.
Best.
The only thing I'm thinking of is the military, and they have loads of lobbying costs and operational costs due to spreading their supply chain across many districts.