Cancer

by WCE

I was fascinated by two aspects of this article on cancer — the lay description of how cancer cells work, and the frustration with how outdated laws inhibit cancer research.

Death of cancer

Here’s an excerpt of the biology part:

Humans derive their energy from two forms of metabolism: oxidative phosphorylation and glycolysis. Oxidative phosphorylation, the most efficient form of metabolism, takes place in the presence of oxygen carried by red blood cells in the bloodstream (that’s what ‘oxidative’ means). It results in the complete metabolism of nutrients to glucose; that glucose is then converted into water and carbon dioxide, which are easily excreted by the lungs and kidneys.

On the other hand, humans generally derive energy from less-efficient glycolysis only when oxygen is in short supply. Glycolysis is the metabolic system tapped by the muscles of long-distance runners, for example, after oxygen has been spent.

Very rarely, however, glycolysis can take place when oxygen is present. One of those rare instances includes the circumstance of the cancer cell, which prefers glycolysis, as inefficient as it is, because it burns glucose only incompletely, leaving parts of molecules behind that can be used to synthesise DNA and other large molecules that rapidly dividing cells need. The cancer cell, like the embryo, retains the ability to switch back and forth between the two forms of metabolism, depending on a cell’s needs at the time.

The political aspect of this article is how outdated laws — on overtime, the environment, and cancer research, among others — are very difficult to fix. What do you think of “sunset provisions” for laws, where a law either has to be re-approved after a period of time, re-approved with changes or lapse? Would this result in legal chaos? I know we have enough lawyers that I’ll get an informed opinion.

Advertisements

111 thoughts on “Cancer

  1. From the article–“Again, advocacy groups protecting their own interests dominated the process. ”

    This is the reason I’m afraid that progress in simplifying the laws will be limited, at best.

    There is A LOT of money in the “cancer industry”. Between the highly priced doctors and insanely priced hospitals (reference MD Anderson and patient billing practices), and all the research dollars (federal, state, and private), charities, and all the insanely priced therapies, too many people would lose too much money if things changed.

  2. Texas has sunset laws for state agencies. IMO, the purpose was not so much to abolish agencies, but to get at the point of this article — what no longer makes sense should be ended or changed to what is relevant today and/or what is not allowed, but should/needs to be can be authorized. Sunset processes are not easy and often result in incremental vs sweeping changes, but are better than rocking along doing what we always did and getting what we always got.

    With medical issues, the problem is setting up structures that proctect patients from unethical practices that cost them thousands of dollars while also allowing patients access to new and not fully proven, but appear promising treatments that are their best shot. My mom is part of an FDA trial. Going in she was presented with the risks and accepted them. She is in the second wave of patients. The first wave were the sickest of the sick; some died because the procedure was not refined enough, while others died because the disease had already progresses too far for the procedure to make a significant impact. Those in the second wave are healthier and more are dying from other causes. My mom is in her 5th year of the trial.

  3. What do you think of “sunset provisions” for laws, where a law either has to be re-approved after a period of time, re-approved with changes or lapse?

    I think the biggest flaw in that plan was mentioned in the article:

    The completed proposal was presented to George W Bush, in the week of 10 September 2001. Then terrorists flew planes into the World Trade Center and the Pentagon, and the president and the rest of the country got distracted by another war.

    Our current system of lawmaking doesn’t have the bandwidth to make your proposal work.

  4. WCE, have you ever seen the Federal Register and the U.S. Code in hard copy? :)

    In an ideal world there would be sunset clauses, but at this point the Congress would just reauthorize everything without analysis.

    I hope your author is right about cancer.

  5. There is a lot to chew on in that article. One of the author’s points is that the NCI cancer centers were originally envisioned to have enough geographic coverage that anyone could get to one. One of the most important things anyone facing cancer should know is that your best hope is to be treated FIRST at a facility with a lot of experience with your kind of cancer. The fact that this so often does not happen is really depressing. Things are a little better for pediatric cancers because virtually all children are treated on a clinical trial from the beginning, at a Children’s Oncology Group (COG) affiliated hospital. Many people think that is what has led to the dramatic improvement in survival for pediatric cancer. But even in that world, children all too often end up at a hospital that rarely treats their particular their kind of cancer. Being COG affiliated means that the hospital is allowed to use COG protocols and clinical trials for every kind of cancer, even if their oncologists never treat some of them. This makes a huge difference. At a true cancer center, there are specialists in all different kinds of cancers. The nurses know all about cancer, and the radiologists are experienced in reading scans, looking for cancers. I cannot tell you how many times we heard of kids who were declared cancer free at their home hospital, and when they got to MSKCC for the immunotherapy trial they were running, were discovered to have residual cancer in their bone marrow. The MSKCC radiologists are simply better at picking up small areas of cancer.

    In the adult cancer world, it is worse because many adults stay with their home hospital and home doctor. There is nothing comparable even to COG. People are treated according to whatever opinion their home doctor has, and clinical trials have trouble accruing enough patients. I think it is only when you have large cohorts being run through clinical trials from the beginning that big advances in treatment can be made. It isn’t suprising that the big leap, combination chemotherapy regimens, were developed in the pediatric world first.

  6. “In the adult cancer world, it is worse because many adults stay with their home hospital and home doctor.”

    Which also makes this a huge class disparity issue. When my MIL was diagnosed with pancreatic cancer, the first thing my FIL did was find the best surgeon he could and called to get her an appointment; she was under the knife in a hospital 1000 miles away from home within 10 days of the first diagnosis. It really reaffirmed to me yet another important reason to have a good chunk of assets: when you have a medical crisis, you can make treatment decisions based solely on who is the best guy and can you get in.

  7. “There is A LOT of money in the “cancer industry”.” This.

    A family member was over-treated for years with monthly chemo treatments. Each treatment lasting a week. Turns out that a pill (one pill a month) would do the same thing and suppress the chronic condition from turning into leukemia. But the physician, and his client, receives A LOT more money if they use chemo treatments. This particular doctor is now in jail (google dr. fata if interested), but I suspect there are more like him around.

  8. I think the Dr. Fata story is horrific and impressive – and all the professionals who touched it said, “I have never witnessed anything this egregious in my career.” It carries a lot more emotional weight than the story of Mehmood Patel, who did 1000’s of unnecessary cardiac procedures – which can be as devastating as unnecessary cancer treatment. And a gentle reminder from your friendly socialist: this would likely diminish if not disappear with single payor health insurance (at least the single payor that I envision). The government has created special rules about administering chemotherapy drugs in an office that enrich oncologists. Not all oncologists benefit from this, but many do.

    http://www.kevinmd.com/blog/2014/08/oncologist-pay-chemotherapy-buy-bill-needs-stop.html

  9. “It really reaffirmed to me yet another important reason to have a good chunk of assets: when you have a medical crisis, you can make treatment decisions based solely on who is the best guy and can you get in.”

    The proverbial rainy day. IMO, those who are responsible enough to save for it deserve the benefits of that action.

  10. I’m also interested in sunset provisions, and some problems have been pointed out. But the reduced bandwith of our current system looks more like a reason to favor sunset provisions since I think the existing situation probably means that too many lousy laws are enacted. And existing laws/regulations take up so many resources and in some/many cases seem to be more harmful than beneficial, especially considering the opportunity costs.

  11. I agree with LFB that treatment access is a class issue, but it is not necessarily a financial one. Traveling cost money, and depending on your insurance, seeing someone at another facility can cost quite a bit, but these are often $5k problems, not $100k problems. In general, the best specialists work at academic centers, and they are in-network for nearly every insurance (and certainly medicare).

    Having worked in an institution that treated Middle Eastern royalty paying cash for “the best” care, I found those same surgeons working on all kinds of patients – indigent to totebaggers. Getting that kind of care often simply means asking for that kind of care – something that certain people don’t know how to do, or won’t do. When my MIL had a rare type of cancer, I was able to arrange for treatment with one of the dozen docs in the country who specialized in that cancer – but she (and FIL) preferred their local oncologist who they trusted. I am confident that it didn’t affect outcome – her disease had a grim prognosis no matter where she was treated.

    However – I think there is a big distinction between the best surgeons and the best oncologists. Surgery is a physical skill – you want someone experienced, but not too old. Oncology is a cognitive skill – a fresh graduate may be able identify the appropriate treatment as well as a seasoned physician. I would wand a surgeon 20 years out of school, and a oncologist 10 years.

  12. Ada,

    If you go to Dana Farber or Sloan Kettering I assume the doctors are paid a salary? They wouldn’t have an incentive to over-treat vs. someone who owns their own practice. But, I don’t actually know how they are paid.

  13. Based on recent conversations with some doctors, they are spending lots of their time handling the transition from paper to electronic records. One cardiologist told me he’s been spending at least 15 minutes per patient. This after the automated part had been done. Another specialist talked about all the harm caused by mistakes and patients who are not being treated because of this transition. Those are not necessarily arguments against going to electronic records, but just an illustration of costs. I know some of you here have a better perspective on this.

  14. Sunset clauses are usually used here either where a new law is experimental and has some opposition so the legislature wants to hear back in a few years as to how it’s working before deciding whether to make it permanent, or where the issue a law is addressing is thought to be a temporary one. If sunset clauses were a part of every piece of legislation then as Sky said, you’d end up just reauthorizing everything without reading it because there’s not enough time to be constantly repassing all the laws with the kind of scrutiny given to pending legislation, and Congress/legislatures are not going to shut down whole programs/agencies just because they didn’t have time to dig into the question of whether those programs/agencies should continue to exist in their present form.

  15. The doctor (in any specialty) who has the most financial incentive to over-treat, over-bill, etc is the one with RVU based compensation, or anyone who directly bills (that would include someone who own her own practice). I imagine the one with the least incentive is salaried at an Academic institution affiliated with a public university – disclosure on payment provides a little bit of sunshine on the whole process.

    However, even salaried physicians may have performance incentives, or productivity bonuses. They may be a small part of compensation, or a large part. Seeing more patients in the same amount of time is probably a faster way to increase productivity, rather than billing more per patient.

  16. Regarding sunset laws, even though the standard practice would default to cursory reauthorization, I don’t see that as a reason not to have sunset clauses. The fact that it technically requires reauthorization would still make it more realistic for citizens or a lawmaker to raise the issue.

  17. Ada said
    ” In general, the best specialists work at academic centers, and they are in-network for nearly every insurance (and certainly medicare).”

    This is absolutely not true. Things are probably better now due to increased regulations on insurance plans, but back in our day, we were out of network for MSKCC and so were lots of other families we knew. Several families lost their insurance because they exceeded the lifetime caps. We were faciing about 100K in out of network bills until we were able to get accepted into a NY state program that is too complicated to get into here. For many of the families who stayed at their second tier COG facility, cost was the overriding issue.

    I think lifetime caps are gone due to Obamacare, which is a godsend because you can blow through your cap really fast when being treated for cancer.

  18. “I assume the doctors are paid a salary? They wouldn’t have an incentive to over-treat ”
    1) what Ada said
    2) Truly. I’m pretty familiar with this stuff from the financial administration end. I honestly believe the vast majority of docs just want to do the best for their patients, not rip them off. But, nonetheless, there are indeed incentive plans for salaried docs, some with big leverage, some not so much.

  19. Ada, there was a study a few years ago looking at outcomes for cardiology patients and cancer patients. They looked at the experience level of the treating doctor, and experience level of the hospital, measured in both cases in numbers of similar patients treated there. What they found was that in cardiology, only the experience level of the doctor matters, whereas in oncology, both the doctor AND the hospital matters. The reason, according to the study, is that cancer treatment involves far more specialists integrating various types of care than cardiac treatment. A cancer patient may encounter high dose chemo, immunotherapy, many scans, radiation, and surgery. It requires a team approach, so the hospital matters a lot.

  20. The children’s hospital where he was dx’ed, which only treated 1 or 2 similar patients a year. They were a COG hospital, so the insurance said they were an appropriate facility, but in truth they mainly only saw kids with leukemia, and the one oncologist was clearly out of her comfort zone. It was also the same hospital that had misdiagnosed him in his first hospital stay about a month earlier, because they refused to do scans on a kid who was showing every sign of an abdominal cancer. He was really, really, really sick – it turned out he was end stage and probably wasn’t going to make another week or two – and it was clear that the hospital couldn’t handle him. We had to make a leap of faith and not think about the costs, and in the end it was probably the best decision we ever made. He was admitted to the COG hospital on the Friday before Christmas, by Monday night he was at MSKCC, had a biopsy the next day, and started chemo on Christmas Eve.

  21. MSKCC is not an academic center. Large academic centers have resident clinics and emergency departments – both of these necessitate broadly accepting insurance in order to reduce the amount of uncompensated care.

  22. I agree with Sky. I work in a highly regulated environment, and my most annoying recurring issue is that Congress and the agencies just add new layers of requirements on top of the old ones. Just right now I am commenting on some new rules where the justification is “well, we have these 17 programs that regulate this, but those rules don’t cover X specific factual situation, and so we’re going to add program 18 to capture that.” Umm, how about amend programs 1-17 to plug that perceived gap? But no, that would require more effort on their part to tailor the regulation to the identified issue. It’s sooooo much easier just to layer on another program; the implementation costs are someone else’s problem.

    So, yeah, it would make my day if these guys would go back to the start and take a fresh look at what makes sense now. So many things have changed over just my work life; many of the assumptions that underlay regs from even 10-15 years ago have changed quite a bit, or just no longer exist.

    But that’s never going to happen. Because, frankly, that requires actual substantive knowledge + an unbiased evaluation of the various costs and benefits. And everyone who is involved in this fight has a vested interest in one particular aspect or another — to the point that they can’t even agree about basic facts, like what should be considered a “cost” or a “benefit.” Our Reps and Sens are those who managed to argue and pontificate and appeal to their voter base most effectively — which is largely the opposite of the substantive knowledge and objectivity that you need if you’re going to create an efficient new program from scratch.

    In short, I can’t see a sunset clause bringing any real changes, because the people we would entrust with this “reauthorization” process are those who are least qualified to do it correctly.

  23. In short, I can’t see a sunset clause bringing any real changes, because the people we would entrust with this “reauthorization” process are those who are least qualified to do it correctly.

    Isn’t the actually writing of the laws done by staffers vs. the actual politician?

  24. I have a close friend with a rare cancer who wanted to be treated at MSKCC. She needed a specific surgery, and her insurance covered only a percentage of out-of-network surgery with no cap at the time. MSKCC was out of network.

    We spent hours on the phone with her doctors, her local hospital billing department, and MSKCC’s billing department trying to get a ballpark number for the surgery cost at either hospital.

    We got nowhere.

    They wouldn’t even give us an order of magnitude for the procedure itself, so we could figure out if it would mean selling the car ($10k) or the house ($100k) or asking her parents to cash out their retirement funds.

    It’s very hard to manage treatment costs if no one will tell you what the charges are. There are supposed to be public databases informing patients of the UCR for procedures but in practice they don’t apply to institutions like MSK.

  25. Ada, large academic centers are not necessarilly the best place to go for an unusual cancer. Large academic centers are generalists, not specialists. My kid was dx’ed at a large academic center, which was clearly not up to the task. It really depends a lot on the particular hospital. For my kid’s type of cancer, the two places that were seeing the most cases were MSKCC and CHOP.

  26. Sky, you can’t get those numbers at any hospital. It is one of the really weird things about medicine. Even when you are in network, there are so many variables.

  27. Does anyone know how other countries handle problems like this? Another example I’ve thought of is that smog regulation has been pretty effective. In the original legislation, cost/benefit analysis was specifically forbidden for driving down [particulate levels or whatever the problem was]. Now, 40 years later, I think that cost/benefit analysis is appropriate, because particulate levels are low. And some of the choices that might stabilize or increase particulate levels- like emissions requirements that diesel engines can actually meet- have other benefits, like lower carbon emissions from diesel than gasoline per mile driven [add lots of caveats about engine efficiency, speed, and vehicle size]. Carbon emission wasn’t on the radar when the regulations were written.

    Germany has much better research/regulation on the effects of herbal remedies, vitamins and hormones than the U.S. because their system doesn’t classify substances into “regulated pharmaceuticals” and “unregulated substances” in the same way the FDA does. When we discussed whether 23andMe should be able to offer genetic testing under existing regulations, we were divided over whether a business should be able to sell ambiguous, uncertain medical information. Part of that decision is recognizing that other businesses (BRCA1 testers, fetal genetics testers) have spent enormous amounts of money to offer that same genetic information with 99.99% confidence rather than 99% confidence.

    I’m especially interested by Mooshi’s and LfB’s posts today, since they’ve been through similar cancer gauntlets. I’m still thinking about my response to Ada’s single payer argument (which affects access) vs. the argument that one of the reasons to accrue assets is to have access to better medical centers/doctors. It’s the old “quality vs. equality” argument.

  28. Sky, there are no public databases. Each hospital maintains what is called the chargemaster, which is kind of the official pricelist, except that it is totally meaningless. What you pay completely and totally depends on what your insurance company has negotiated with the hospital, as well as the various things like out of pocket max, what they pay out of network providers, etc. Insurance companies will not give you this information because they say it would put them at a disadvantage if other companies knew what they had negotiated. It is all stacked against the patient

  29. This:
    It’s very hard to manage treatment costs if no one will tell you what the charges are.
    is the problem with the US health care system. For just about any other service, you can find out prices and comparison shop, weighing price against things like experience of the provider, location, etc. to make an informed decision. For hospitals, you have the added problem of separate billing by the surgeon, anesthesiologist, pathologist, radiologist, and the hospital itself. I think it’s getting better with Obamacare, but it’s still a PITA to try to estimate your costs for a flex spending account.

  30. After reading everywhere how people don’t get the treatment they need for lack of in-network doctors and other insurance limitations, how do hospitals handle payment from visitors who don’t necessarily have the same insurance coverage. What if visitors/tourists need emergency medical help and surgery/tests, the whole gamut without having the financial means to pay out ridiculous bills, or appropriate insurance coverage?

  31. After helping my friend with the bills, I think that any medical provider – doctors, hospitals, you name it – ought to be required by law to have a public price list.

    It does not have to be the same prices they negotiate with Insurers or get from Medicare/Medicaid, but if you are planning a treatment and paying for it yourself there ought to be some way to compare.

  32. Sky, the problem is, the prices on the chargemaster have nothing to do with what anyone pays. Very few people ever pay completely out of pocket, so the real price is going to have more to do with the terms of your insurance plan.

  33. how do hospitals handle payment from visitors who don’t necessarily have the same insurance coverage.

    Most insurance, and I’m quoting from my insurance provider, cover the following:

    Members are covered for Emergency and Urgent Care while temporarily outside the NHP service area
    .
    However, members should call their Primary Care Site within 48 hours of receiving care. Care which is not covered outside the service area includes care when travel was against medical advice, routine care that can wait until you return home, or care you expect to need (for example, childbirth in your last month of pregnancy).

  34. WCE, we have close friends in the UK and their son has cancer. He was actually diagnosed in a children’s hospital in Florida. Their costs are fully cover due to the “system” in the UK, but she is lucky that they live in London. She explained that there are certain hospitals that they have to go to for cancer treatment. While almost everything is paid for, the choices about where to get treatment are limited. The reason I said she is lucky about London is that they can get him specialized cancer treatment in a cancer hospital with a section for kids. This would not be the case if she lived in another part of the UK. She also said that a large part of the decision of where you get assigned is based purely on your home address. There is one cancer hospital for people that live in one portion of the city, and another for the other half. If her son is sick in the middle of the night, and this has happened a lot from various treatments – she must first go to her local ER. They decide if they can treat him – collapsed lung – maybe stay, OR if they decide it is cancer related – then they send him in an ambulance with a nurse to the cancer facility across town. There are a lot of rules, but her son is doing well. They have been happy with the quality of his care. The system has a lot of red tape, but I think there is a TON of red tape now in the US even if you have private insurance.

  35. Sky, just curious (at least at this point)– did you or your friend try to negotiate a price in advance?

  36. Finn,tried and failed. She had the surgery at MSkCC anyway and the copay was low five figures.

  37. Sky, I’ve never seen the Federal Register or Uniform Code in hardcopy. I don’t know any attorneys IRL. The closest I get is a colleague’s son I met at my wedding who later became a patent attorney…

  38. DD,

    I can’t imagine why those places are allowed to call themselves ERs. If they can’t wheel you to an inpatient room on a gurney then it’s not an ER.

  39. Has anyone thought about whether medical research should be dramatically reduced? My brother (artificial hip/knee R&D engineer) estimates that we’ve done at least 95% of what is theoretically possible in that realm. Talking to the nurse practitioner at my doctor’s office (also the gynecological cancer office), breast cancer might be at a similar place. The US has historically funded and tested most medical breakthroughs, which is at least part of why our costs are so high compared to the rest of the world.

    Is it ever time to say, “Everyone has to die sometime,” and focus on offering a high level of care to the vast majority of the population, at the expense of optimal care for the (usually Totebaggy) outliers? (The part of me that agrees with Ada is writing now.)

  40. Denver Dad – that is really interesting, and the first I’ve heard about stand-alone ER. What I find comical are the hours of the in-network urgent care place near us. Only open until 9pm M-F and until 5pm on weekends. These are roughly the same hours as the pediatrician. In the last year I’ve had to take DD to the ER to have her elbow popped back in. Both incidents happened Saturday evening. My ER out of pocket is $50 and for urgent care it is $25, so basically a wash to me. The out-of-network urgent care cost is more than the ER, and I don’t even think they have late hours. Either way, my insurance gets charged a bunch.

  41. My brother (artificial hip/knee R&D engineer) estimates that we’ve done at least 95% of what is theoretically possible in that realm.

    Wouldn’t the next step be non-surgical regeneration of the worn joint vs. replacement?

  42. Rhett, or possible 3D printing and installation of the joints you had scanned at your turning-18-years-old full body scan.

  43. “Wouldn’t the next step be non-surgical regeneration of the worn joint vs. replacement?”

    Or perhaps earlier intervention to replace the cartilage rather than the entire joint.

  44. “Biomedical engineers at Hopkins have caused stem cells from adult goats to grow into tissue that resembles cartilage”

    I hope this can be extended to growing cartilage from one’s own stem cells. My kids’ cord blood might still be of use to them, even as they’ve avoided leukemia to date.

    What has everyone else here done with their kids’ cord blood?

  45. Talking to the nurse practitioner at my doctor’s office (also the gynecological cancer office), breast cancer might be at a similar place.

    As in no further significant progress is likely?

  46. DD, do you know what capabilities those free-standing ERs have?

    E.g., if someone comes in with a stroke, can they do a brain scan and administer the clot-buster if appropriate? Do they have surgical capabilities?

  47. “Is it ever time to say, “Everyone has to die sometime,” and focus on offering a high level of care to the vast majority of the population, at the expense of optimal care for the (usually Totebaggy) outliers?”

    My initial reaction is that Totebaggy outliers are likely to be among the biggest losers from such a change.

    The 1%ers might go ahead and create a separate medical delivery system, if not explicitly prohibited from doing so, that can deliver optimal care to them. But those just below that level would likely not be able to participate on both systems.

  48. My brother (artificial hip/knee R&D engineer) estimates that we’ve done at least 95% of what is theoretically possible in that realm.

    In terms of medical advances? Seriously? I think we’ve barely scratched the surface. In 100 years, people are going to look back at where are now as the stone age for medical care.

  49. Denver Dad, it’s interesting that our perspectives are so different. Where do you see prospects for widespread, significant medical advances? Would they extend life for the population as a whole or improve life for people with disabilities or ???

  50. “In 100 years, people are going to look back at where are now as the stone age for medical care.”

    Dr. McCoy always says that when they time travel back to earth and he witnesses medical procedures. They use scalpels, Jim! – barbarism!

  51. I expect slight increases in longevity for healthy Totebaggers to be compensated for by death at younger ages for the working class, in terms of statistics. Totebaggers will be affected by Gompertz Law of human mortality, the observation that the risk of death doubles every 8 years. If you don’t die of one thing (breast cancer), you’ll die of something else. And in my family, you may not die till after a long, time-consuming ordeal with combative dementia. Far better to make my departure quickly, with some of my wits intact.

    If I could choose one area to “fix”, it would be dementia treatment.

  52. WCE,

    focus on offering a high level of care to the vast majority of the population,

    Total US medical research spending from all sources public and private was $119 billion in 2012 which is 0.8% of GDP and 3% of all heathcare spending. So, it’s not like significantly reducing it will free up a meaningful amount of money.

  53. I am certain that there is no way we have reached a point of diminishing return on medical advances. However, I think we need to spend research dollars on holistic treatment of people rather than specific body parts, as well as finding innovative/disruptive treatments rather than incremental improvements on what we already have.

  54. If I could choose one area to “fix”, it would be dementia treatment.

    They are working on it:

    http://www.ncbi.nlm.nih.gov/pubmed/22514792

    I’m not really understanding your position on this. Should these efforts be abandoned? Are we currently at the limit in terms of quality and quantity of life such that no further progress is likely?

  55. WCE, I see opportunity for advances. Dementia is a great example – you really think that we’ve achieved 95% of what we can in treating it? Right now, we’re at pretty much zero in treating dementia. There are some drugs that slow the progression, but nothing that can improve it.

    Artificial joints – as has been mentioned, we’ll get to the point where we’ll be able to regenerate the cartilage and eliminate the need for them. Cancer – there are much better treatments to come than what we have now. And the common cold – we will find a cure. Etc.

  56. “The US has historically funded and tested most medical breakthroughs, which is at least part of why our costs are so high compared to the rest of the world.”

    How many new drugs are developed outside of the US, as compared to inside? Based on drug costs, it certainly seems to me that we are subsidizing the rest of the world.

  57. I think there’s an average maximum lifespan potential, let’s say 115 just to throw a number out. I think what will happen is that as cures are found for all these things so people will reach that point with a higher quality of life. And ultimately we’ll find ways to extend that end potential as well.

  58. “Based on drug costs, it certainly seems to me that we are subsidizing the rest of the world.”

    Same is true in national defense.

  59. I guess I look at the VA hospitals- lack of access to timely care and specialists, lies about wait times in order to meet government-set goals- and expect those problems to become more common with single payer care, especially in rural areas. When people talk about “healthcare like Europe”, they always seem to be thinking of London, Germany or Scandinavia, not Macedonia.

    Medical research is an area where I’d like to see government bureaucrats (actuaries) make more choices about funding priorities. I suspect that Rhett’s medical research numbers don’t include care that’s part of clinical trials, for example.

    I think the gap between what is possible and how people behave/how the system works is a better focus of resources than more medical research. The “medical home” makes sense for some people. My OB office should have given me a flu shot at a prenatal appointment, instead of sending me to the drugstore with my twins to wait for over an hour while the pharmacy technician tried unsuccessfully to verify my insurance coverage. (It turns out United Healthcare has a separate phone number for immunizations that is not printed on your insurance card, and the people at the regular number don’t know to connect pharmacists to the immunization verification number.)

  60. Until then, how do you treat it?

    You treat the symptoms (if you want) and let it run its course.

  61. I guess I look at the VA hospitals- lack of access to timely care and specialists, lies about wait times in order to meet government-set goals- and expect those problems to become more common with single payer care, especially in rural areas.

    You’re confusing “single payer” with “single provider”. The VA is a single provider system – patients can only go to specified providers and facilities. Medicare is a single payer system – the government is paying, but patients can go to any provider they want – and it works very well.

    I think they need to scrap the entire VA system and put veterans under medicare.

  62. WCE,

    I’m at a loss. We need to substantially cut research funding and focus instead on helping United Healthcare, CVS and your OB get their act together?

  63. I think the gap between what is possible and how people behave/how the system works is a better focus of resources than more medical research.

    Why can’t we do both?

    My OB office should have given me a flu shot at a prenatal appointment, instead of sending me to the drugstore with my twins to wait for over an hour while the pharmacy technician tried unsuccessfully to verify my insurance coverage.

    That’s on your OB office, not the system. There’s no reason why they can’t give flu shots. I’m surprised they don’t, because they are an easy moneymaker for practices.

  64. The VA system is so unfair. I can NOT believe that Americans that have given up so much for their country are made to go through this in facilities across this country. I agree with you about the VA system. It should be scrapped, or make congress and the president get all of their medical care in these facilities so they can see how bad it is in these places.

  65. “You treat the symptoms (if you want) and let it run its course.”

    I used to let it run its course, then a friend told me how she nuked her colds. I tried it, and found doing so can shorten its course, especially if I’m able to prevent the cold from getting to my chest.

    I now make sure to always have some Listerine and NyQuil, or generic equivalents, at home for this purpose. I used to also keep a supply of pseudoephedrine HCl on hand, but those d@mn meth labs screwed that up for me.

  66. “Where do you see prospects for widespread, significant medical advances?”

    Somebody mentioned dementia. That is certainly true. But I think the real answer is broader– the brain itself.

    According to my cardiologist, they’ve pretty much gotten the heart figured out, something which was not true 35 years ago when he began his career. But the brain remains a relative mystery.

  67. I thought this was a great article about the mechanics of cancer and the work being done to treat the many forms that it takes. I would be in favor of making the research and development of new drugs and treatments more streamlined and simpler as I think we would all benefit in the long term but I am not hopeful. It is very difficult to change a federal bureaucracy such as the FDA and there would probably need to be significant changes to the legal environment (i.e., tort reform) for it to work.

    With respect to treatment for cancer or any other serious health issue, I have learned that information is your friend and you will benefit from drawing on all possible resources. My cancer was cancer-lite, radiation after surgery but no chemo. DH and I did a lot of research and talked to a lot of doctor friends to make sure we had current and quality information. I think there is a real generational divide on this as my parents tend to lump all doctors together and don’t question anything a doctor tells them while I view the information as a starting point and don’t hesitate to consult more than one provider. When DH was very sick, I learned that an inpatient needs an advocate who can be at the hospital nearly full time. The doctors and nurses were terrific but there are sometimes unavoidable gaps that an advocate can identify and work to address.

  68. To whoever said that no more medical research is necessary, that we are at our limits: A kid diagnosed with high risk neuroblastoma in the early 1990’s had oretty much a 0% chance of 5 year event free survival (EFS). When my DS was diagnosed in the early 00’s, we were told kids had about a 30% 5 year EFS rate. That increase was due to the development of very high dose combination chemotherapy on a clincial trial at MSKCC and later adopted by all COG hospitals. My DS entered on an immunotherapy trial after doing the high dose chemo, still very experimental at that time. A few years ago, they published the results for his cohort on that trial. The 5 year EFS rate was now at 60%. COG has now adopted immunotherapy as part of the standard of care. Please don’t tell me that we don’t need to do any more medical research and that we all have to die sometime. These are little kids, typically toddlers. Going form 0% survival to 60% in about 15 years is huge.

  69. My FIL used the VA system quite a bit and preferred it to the regular providers. I have heard similar stories of satisfaction from other vets. Maybe the problem is just that the endless wars this decade have stretched them thin?

  70. Mooshi, what was the timeframe in which your FIL preferred the VA system? There weren’t a lot of vets who saw combat duty between withdrawal from Vietnam and the Gulf War.

    Another factor is probably the higher survival rates among recent injured combatants.

  71. WCE, your comment about your OB made me laugh, because I just got my flu shot today, at a prenatal appointment.

    I thinks his topic is fascinating. From what I read (and I’m no scientist), the newer immune-oncology treatments coming out have the potential to have a huge impact on some cancers. Ada and DD, any thoughts?

  72. This article is something we’ve discussed on here before: http://www.theatlantic.com/business/archive/2015/11/what-do-professional-apple-farmers-think-of-people-who-pick-apples-for-fun/414382/

    It’s a rather stupid article on an interesting topic — many of the commenters pointed out some of the obvious points the writer missed (e.g. that the distinction between recreation/work isn’t black/white and curiosity is a better explanation for people’s interest in touring a work site than desire to feel superior).

  73. Rhett – I believe so, but I’m not exactly certain how they define combat. There are a number of factors that go into an equation for eligibility. Just for curiosity, I once checked my own eligibility. Serving during OEF/OIF was a good thing, but with no level of service disability, and too high of a household income, the computer said to pi$$ off.

  74. In his own free time, Chick still likes doing data analysis like the kind he did while working.

    I award him the golden totebag.

  75. There has been quite a bit of stories about the local VA here. It is really heartbreaking to here the stories, mostly related to brain trauma and PTSD. For a reason that I don’t understand, these Veterans are first sent to the Compensation and Pension department for initial examination. They are poorly examined and then told they don’t have PTSD or brain injury and denied further medical treatment. These veterans aren’t looking for compensation or increases to their pension, just medical help. I don’t think the single provider is the answer for those that served our country.

    Mooshi – i’m always amazed, intrigued, and frightened when you share your story (and that goes for everyone here that has shared their children’s health scares and sorrows). It can happen to anyone of us and I don’t think most people realize how it can turn a family upside down.

  76. You’re right that I shouldn’t convolve single payer with single provider. In my opinion, it comes down to money. That’s why more doctors accept Medicare than Medicaid- higher payment rates. I assume (perhaps incorrectly) that more in-demand doctors will choose to serve a private clientele over the patients in the single payer system.

    Regarding medical research, the excise tax of 2.3% of gross revenues (not profits) on medical devices in the Affordable Care Act is already a decision to cut medical research in favor of broad access to medical care. Politicians like the call the resulting decrease in medical device R&D an “unintended consequence,” but that’s because they’re politicians. Increased regulations and stable or decreasing reimbursement rates also decrease R&D. My SIL works in regulatory compliance and they are still hiring in that area.

    http://www.forbes.com/sites/henrymiller/2015/06/24/americas-ailing-medical-device-industry-needs-a-tax-cut/

  77. GreenEyes, oncology isn’t my thing so I can’t comment on specifics. But I strongly believe the future of cancer treatments will be to target the cancer cells without attacking the healthy cells like chemo and radiation.

  78. If you want to go apple picking around here, you have to make reservations months in advance. It blows my mind.

  79. Increased regulations and stable or decreasing reimbursement rates also decrease R&D

    You want R&D to decrease so what’s your objection?

  80. Sorry WCE, that came across harsher than I intended.

    I find your thougts on these issues fascinating.

  81. Rhett, thanks. I worry that my missed/wrong words (I can’t see my whole comment on the screen at once often) make me incomprehensible sometimes.

    I don’t know if medical research spending should increase or decrease. I also think “medical research” vs. “medical care” is an analog rather than binary variable. If you’re raising hamster cells in a lab, that’s research, but if you’re testing a slightly modified chemotherapy protocol against a standard on a group of patients, that’s almost the same medical care that you’d be providing anyway, and I’m not sure how to account for that.

    I’d like to see more research into interventions we do that are not particularly helpful and consideration of how cost-sharing affects patient decisions. The pancreatic oncology fellow whose lecture I attended talked about all the chemotherapy drugs that have been tried and provide only minimal or no benefit, at the cost of a lot of patient suffering. Should there be more research funding to find out which chemotherapy drugs provide minimal/no benefit?

    Regarding cost sharing, the OB/GYN I don’t care for was really irritated with me for asking for statistics and costs when she wanted me to have a breast lump checked out. I knew how it formed (clogged ducts when nursing) and had confirmed with Dr. Google that it was likely benign. I wasn’t about to spend $2000 (deductible + copay estimate for a biopsy) to be 99.9% rather than 98% sure that it was benign two or three years after it formed. As I tactfully informed her, “If it were an aggressive breast cancer, I’d be dead now.” But in the time she had, it probably wasn’t realistic to discuss my lack of family history, how the lump formed, what research I had already done, etc. It was far easier for her to say, “If you don’t spend $2000, you’re going against medical advice,” and for me to respond, “Thank you for sharing.”

  82. I have lots of opinions on free-standing ERs – I have worked in one. The one I worked at had better imaging access (24h US, MRI, Vasc US, CT) than most community hospitals. It also was staffed with specialist physicians (board certified ER Docs!) and equipment to provide cardio-pulmonary resuscitation in a comprehensive way (it costs money to keep that code cart up to date, and to employ RNs who know how to use the things it contains). It also was the most efficient place I have ever worked – we desperately wanted all the business we could get, so we gave toys to children and exquisite fast service and nice snacks to everyone else. Since we didn’t have indigent/drunk/psychotic patients to take care of (few ambulance patients, not near a bus line), we had more than enough resources.

    If we define an ER as a place that can roll a patient down the hall into their inpatient bed, half of all ERs in January fail that test. (Get admitted for flu at your local mega-hospital in January, you will likely spend the first 24-48 hours waiting in the ER for a bed. You might get better before you leave the ER). An average ER admits 10-30% of their patients – which means the vast majority go home, and are well-served by a freestanding facility.

    However, freestanding ERs are disruptive, and not in that cool/techie way. They charge a ton for their services, and most of their clientele doesn’t understand the difference, and frankly, doesn’t care. (Our adjacent UC often had a 1-2 hour wait – people were more than happy to pay an extra $25 to go to the ER and be seen like it was an emergency. Their bill was $1000 instead of $100, but they were well insured, so it didn’t matter). Unlike an UC, an ER cannot turn anyone away. Not a problem if you build in the right neighborhood. Also, hospitals love them — the admits that come out of them are usually a well-insured bunch. They stay a week in the hospital and generate a ton of income.

    Looking for a job as an ER doc? Freestanding ER is a pretty good deal. Looking for care as a sick or injured person? It will provide you with fast and good care, — hope you are well insured. Looking for responsible use of health care resources? Freestanding ERs really offer nothing to the community and take the good payers out of the system.

  83. I often hear people who say they want to “close the carried interest loophole.” Much of healthcare innovation on the med device and biotech side (which is largely funded through start-ups/VCs) will be directly negatively affected by that. Academic researchers are great at research/developing the science but have no idea how you actually take what has been developed and get it through regulatory approval and to market. The big pharma and device companies don’t do much internal development because it doesn’t really work with their model; they rely almost exclusively on acquiring such things. Someone I know very well works in this industry and during the course of that career has been involved with bringing novel things to market that are now used through the US/world. I know people don’t like the idea of rich people getting richer in tax-advantaged ways, but it (it being novel health-related drugs, devices and services) is something that will absolutely be affected by a change to how carried interests are taxed. Maybe we don’t or shouldn’t care, but it something that should at least be considered when these things get grouped with the hedgies and other finance types.

  84. Anon for This,
    Are you saying that people like the one you are close to will not continue to do this work if they are taxed at a higher rate?

  85. The person I know? He’ll keep doing it. VC investing in healthcare generally? It will definitely slow down. When the incentives change, the investment profiles change. The med device tax hasn’t exactly been good for the industry. Add in other changes and you’ll see shops closing and people going to do other things. I am not weighing in on whether this is a good or bad thing, just the natural conclusion when you change the economics.

  86. I found the comments enlightening especially Mooshi’s.
    All I can say is that health insurance premiums for the parents who haven’t worked in this country and have some assets that they brought over are going up by $200 every month. We collectively, as an extended family can support the parents but I wonder how others are doing.

  87. Well, this seems timely: https://www.washingtonpost.com/news/morning-mix/wp/2015/11/06/almost-a-miracle-untested-designer-cell-therapy-saves-a-baby-close-to-dying-from-cancer/

    Been thinking about WCE’s question. And this article notes the thing I was thinking of since yesterday: cross-pollination. The therapy that worked here had been developed to treat HIV. I think there is huge potential for growth in these kinds of crossover areas, as we learn more about how one body system affects another. Of course, this is also a problem, because our current system has encouraged the best and the brightest to get extremely knowledgeable about more and more minute slices of the body. We’re making tremendous progress on the granular level, and we need a shift back to get really smart people focusing on the bigger picture.

    I also think that these doom-and-gloom scenarios are a product of basic cognitive bias, because they are bound by what we know. We look back at how far we come; we look at our little area of expertise, and we see that all of the big discoveries have been made, and it feels like now we’re tinkering around the edges. But scientific discovery does not work linearly — think of how many things were discovered by accident, when someone was looking for/trying to prove something else. By definition, we cannot know what significant advances will be made in the future — because if we could foresee them, someone else smarter and better-trained would already be working on it.

    So I prefer to start with a little logical extrapolation. Look at the huge leaps and bounds we’ve made in the past, from century to century (yeah, ok, take out the Dark Ages — start with Copernicus or so). Most of those improvements involve things that people back then could never even conceive of — including entire areas of study that people could never even have dreamed existed. We have a much larger knowledge base to build on now — not to mention way better tools. So is there any reason to think that human beings today are less creative or less brilliant or less interested in figuring out how things work? Is there any reason to believe that people will no longer feel compelled to spend their lives finding a cure for the nasty ugly thing that killed their aunt or their dad or their best friend?

    But I think your question isn’t really whether discoveries will be made that will significantly advance our ability to cure diseases — it’s whether those “cures” will actually do any good society-wide, or whether people will just drop dead a year later from a heart attack, or live to 110 with 30 years of incurable dementia. That’s a valid concern. I think, if you are concerned about cost-effective research, then maybe the answer is to focus more $$ on the cancers that strike people in the prime of life (or before), and not so much on the ones that are more closely associated with advancing age (prostate, non-aggressive breast cancer, probably others I’m not aware of).

    Of course, that’s also never going to happen, because 60-yr-olds with prostate cancer vote and tend to have $$ and time to devote to research.

  88. Thank you all for a fascinating discussion. My child’s cancer (her tumor was not technically a carcinoma, since it was entirely in the nervous system) is one for which the prognosis has barely improved in the 36 years since her death, and most of that progress is because of advances in diagnostic imaging and refinements to radiotherapy protocols. Patients whose tumors “bloom” – the article discussed triggering mechanisms – before age 4 have a low survival rate and almost always significant deficits following treatment – and the tumors can recur fatally at puberty. I am not sure whether a one in 2 million tumor is the sort of thing for which as a society should be targeting megabucks. It would be our hope that some of the newer avenues of investigation would yield new types of therapy that incidentally targeted these cancers.

    As for effectiveness, the general public as well as the medical establishment has been very slow to accept statistical evidence that xyz test or treatment once suggested is not actually effective or necessary. I still have to dig in my heels to refuse tests even those that are “free”. When your bone density, already tested twice, is 3 std deviations above the mean, maybe that test is simply unnecessary for you? I have been very impressed with the veterinary practice regarding seizures and asthma in cats – they only treat if the condition is so overwhelming that euthanasia is the only humane alternative – the medicines (phenobarb and steroids, respectively) are harsh and require twice a day administration. The animal, if episodes are below the frequency or severity guidelines, can have a fine life which will be about the same length as the one shortened by drugs.

    As for the VA, DH qualifies to enroll at priority 6 out of 8 because of active duty in Vietnam, but as the website says, they only enroll new vets to the extent they get funding from Congress. The higher 5 categories all have either disability or income qualifications. Had he enrolled many years ago, he could receive care or even get a nursing home bed, but with a copay because of his income. I have several friends who after distinguished private medical careers chose to work at the VA. They provided the best care that they could under the circumstances. In eastern Mass and Portland Maine, the VA system benefits from the glut of quality medical personnel and the generally higher than national average standards for medical care.

  89. I think research into gut microbes is fascinating for people with annoying but not fatal digestive issues. I suspect I have great gut microbes and my kids seem to have acquired them as well.

    About 4 years ago, when sequencing DNA was a lot more time-consuming, BGI (in China, formerly Beijing Genomics Institute) sequenced a killer E. Coli microbe from Germany in 3 days, when Germany would have taken months to do so. Genetic sequencing and targeting, meaning human genetics and cancer tumor genetics, is in my opinion the most exciting area of medical research right now.
    http://www.bio-itworld.com/news/06/02/2011/German-teams-BGI-Life-Technologies-Identify-E-coli-strain.html

    I was excited to see international collaboration on a problem that involved occupying lots of brilliant, largely single young Chinese men in healthy ways. Given my guesses about the personalities of people doing cutting edge gene sequencing in China, my thought was, “I’m sure glad you’re doing this and not weapons research. And the Germans are grateful for the help.”

  90. I will add that my father gets care from the VA, and has been very happy with it. He sees the same GI doc that he saw when he had private insurance. As a fairly rare user of health care, he has been convinced by the primary care provider to take better care of himself and do some basic preventative care. I have had little contact with the system professionally, but nothing that matches what I hear in the media.

  91. I could support a single payer system if there were mechanisms other than wait lists for care/access to providers. If we created a system where provider availability in the 10 best-served markets had to match the 10 worst-served markets within 10% (accounting for population age or other mitigating factors) or the government would move/terminate providers in the best 10-served markets, many of my access concerns would be eliminated. This would still leave an abundance of private-pay providers in the best-served markets, but I can live with that.

    I’d also like to see a prioritized system of what will be covered based on available funding, with that list changing every year, and with an analysis issued by September 1 of what will likely require private coverage in the next calendar year. (IVF? more than 6 sessions of occupational/physical therapy? MRI scan with wait time < 3 days?)

    When I think of limited access to care in the UK, "London" is not the place I think of with few/no providers. I think of wait times for NHS dentists, for example.

  92. Rhett, from what I’ve heard, Germany and Switzerland have pretty good systems. I don’t know how those systems would perform with our more diverse population, but I like their systems much better than systems (like Canada’s) where it is illegal to get care outside the system within the country. (I think that’s why so many well-off Canadians cross the border for healthcare.)

Comments are closed.